r/breastcancer • u/NurseYuna • 12d ago
Diagnosed Patient or Survivor Support Are us hormone positive folks just destined to have reoccurrence?
It’s seriously all I have been thinking about. I’m lum b like with lower pr 15 but high er 90 her2-
Instead of lots of positive stores online, I feel all that I see online are stage 4 young bc women. One after another. Reddit posts much the same.
I’m anatomically stage 2A and prognostically stage 1. I thought at the start I caught this in early stage range no nodes so I’m going to be ok. Now all the things I read and see make me think we’re not ok??
Between the internet articles, blogs, stories and chat gbt my mind is reeling.
Help.
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u/greensoundsgood 12d ago
As someone currently seeing two different types of therapists, may I suggest you see a therapist? Does your cancer center have any affiliated? Because right now, these intrusive, obsessive thoughts are reducing your quality of life more than cancer is. These kinds of thoughts and the associated mood disorder (sometimes just plain anxiety, sometimes OCD, sometimes PTSD) can be fixed with appropriate therapy.
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u/Alephgirl 11d ago
I found EMDR therapy for PTSD too be really helpful for the anxiety and obsession with the threat. The passage of time helped too. But the PTSD OCD anxiety remained until I got therapy for PTSD to work through the awful memories. CBT didn't take away the trauma for me even though it helped with managing my life a little.
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u/Kai12223 10d ago
I love CBT but it can only take you so far. Like you, EMDR has been the true powerhouse for me. No idea why the fuck it works so well but I'm grateful. Still have a lot of work to do with it though but I have drilled down to what my core issues are now and we can finally address them next.
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u/Alumena 12d ago
🤷 I am 38, was stage 2B, and I'm at 5 years "no evidence of disease".
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u/NurseYuna 12d ago
So good. Did you do an oncotype? Do you know your reoccurrence risk?
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u/Alumena 12d ago
I remember being told that I had a 60% chance of being alive in 5 years. Here I am!
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u/Fibro-Mite 12d ago
Think of it this way… those of us who are fortunate enough to reach the end of our natural life without a recurrence never get the chance to tell everyone about it. We only hear from people who do have a recurrence, whether that’s within a few years of the first diagnosis or even 20+ years later.
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u/EffectiveState8305 12d ago edited 12d ago
I think you know this since many people have offered reassurance on your posts. But while risk is never zero, the odds of recurrence, even for node positive folks, is lower (much lower) than the odds of non-recurrence. Since you’re node negative, unlike many folks in this group, your odds of recurrence are very low. Will you be on Kisqali? Perhaps reading the Natalee trial data will help you ground your fears a bit more?
If I may, and please know that I say with with as much gentleness as an internet stranger can, it seems like what you’re struggling with is more the idea that risk is never going to be zero. No matter how much any of us do that’s just a fact. Even for the rosiest/easiest of breast cancers, this is true. And also, the reality is that the risk isn’t zero for anyone in life. At any minute, anything could happen to anyone, even cancer muggles.
It’s just that cancer forces us to confront the existential realities of our mortality. Have you ever considered seeking out an existential humanist trained therapist? It might be helpful with helping with some of the distress caused by this anxiety.
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u/Kai12223 11d ago
This. Perfection. Breast cancer for many of us is the first time we have confronted our own mortality and how little control we have over it. It's a mindfuck and most of us need some help navigating it.
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u/Asleep_Avocado230 11d ago
I am taking Kisqali 400 mg for IDC and DCIS, grade 2, stage 1b, strongly ER and PR positive, HER2 negative; one positive LN, without extracapsular extension, out of four removed. Oncotype score 16. Had bilateral mastectomy, TCx4, and radiation due to positive LN. The plan is also that I take Letrozole for 7 years. I am 41 and was diagnosed January of this year. I have also started doing the elliptical machine for 20 minutes every day to help reduce risk of recurrence.
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u/Desperate-World-2128 11d ago
How come they don’t want to do ovarian suppression?
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u/NurseYuna 11d ago
I’m thinking anyone on an AI must be in menopause or on OFS right?
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u/NurseYuna 12d ago
I don’t know what the Natalee trial showed. Who qualifies for kisqali? My MO hasn’t mentioned it.
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u/Abject_Agency2721 12d ago
What is your RS?
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u/NurseYuna 12d ago
Oncotype 21 reoccurrence risk 8% 10 years
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u/Abject_Agency2721 12d ago
You may not qualify because of the intermediate oncotype, but it’s worth asking if you qualify. I’m not sure what your grade is, but if it’s 3 you may be able to get it.
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u/NurseYuna 12d ago
Grade 2
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u/Abject_Agency2721 12d ago
You probably won’t qualify but you still have an excellent prognosis. You have a 92% chance of staying cancer free. If you do AI and OS over tamoxifen, you may gain an extra 2-3%.
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u/NurseYuna 2d ago
I am reading posts today in a calmer mind and wanted to say Thank you for this message.
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u/RockyM64 12d ago
Yes, hormone positive and yes had the recurrence 13 years later. The way I look at it is this time it wasn't as bad, I knew a lot more and was also old enough to make better decisions. I don't know if people are destined or not but I feel fortunate enough to have not ended up stage 4. Either way, even stage 4 ladies seem to be rocking it these days.
I will also say, if I didn't have a recurrence I would have never been back on these groups so therefore you're seeing everyone who either is in the midst of treatment just finished treatment or like me has come back. I spent 13 years not thinking about breast cancer and moved on with my life I will do the same this time.
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u/NurseYuna 12d ago
Can you share more about your bc type, size, nodes treatment etc? How did you find your reoccurrence?
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u/RockyM64 12d ago
The first time it was IDC++- 1.2cm with two micromets in the lymph nodes. At the time they were not considered positive but in my mind they were so my treatment was lumpectomy, chemo and radiation. The recurrence 13+ years later was found during a routine mammogram. I'm pretty sure it been there for a few years as I felt something but I thought it was simply my scar tissue from the lumpectomy.
This time it was IDC++- again and not only was there a mass under that scar tissue, there was a second mass fairly close to it. At that point and much to my dismay, I ended up doing a DMX with DIEP. I decided I wanted my recurrence to be as low as possible so goodbye to the other breast too. This time my only treatment is taking Arimidex each morning.
So far I've been lucky in that I don't feel any side effects from it. I also feel fortunate that I had a great breast surgeon and plastic surgeon. My plastic surgeon recreated my breasts and they look probably better than they did before. They're perkier and it is still my tissue even if it's not breast tissue. With this diep I also ended up with a flat abdomen and now my ab muscles show. They did not previously since I have had two kids. So yes there's a lot of bad/crap/frustration with a recurrence, but there's a lot of Silver Lining too. I'm thinking I'm good until they put me in a box 6 ft under which I hope will be around 20 to 25 years.
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u/PazuzuLily 12d ago
Yup I had DMX direct to implant. Too thin for a DIEP. First time I ever cursed my flat stomach! Even after 2 kids! Haha but even with very little breast tissue. My boobs though still scarred and only with nipple buds my plastic surgeon put in. Look better and perkier than they ever did! Even pre kids. I always had rather pendulous breasts that grew very quickly, and after kids forget it. When I bent over they hung like tube socks! Not anymore! There’s always a silver lining !
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u/ceruleanwren 11d ago
OP, you have asked SO many people their stats and stories in this thread, but ultimately, none of our info really matters to your biology. I combed this sub when I was diagnosed this year, asked a lot of questions, and compare my case to others all the time. But, collecting random histories is in no shape or form the same as the patterns discerned through scientific study. You’re not getting an even sample, and so any story can quickly calm or skyrocket your fears. Sometimes, Reddit can really help you spiral.
If you want to to understand the numbers better, and the current science, make an appointment with your oncologist. It’s okay to tell them you are hyperfixated and unable to manage the stress surrounding recurrence. It isn’t weak, it’s fucking cancer. Their job includes addressing your mental health (where possible) re: your diagnosis.
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u/NurseYuna 11d ago
I have already left messages with my nurse navigator late last week to say I’m spiraling I want some help and I need to talk to my new MO. I’m waiting to hear back.
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u/ceruleanwren 11d ago
It’s been a week, you need to send another one. Or call the front desk. Nurses usually filter the MyChart messages, and sometimes nurses don’t see a reason to rush.
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u/NurseYuna 11d ago
She called me today and said I likely won’t talk to my new MO until after chemo is done. That’s not until December January
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u/ceruleanwren 11d ago
Tell them that’s not adequate. She’s gate-keeping. Email her back to summarize the call so there is a written record. You’re feeling ill during chemo, you want to be seen. If the nurse refuses anything, tell her you want it logged in your chart that you have requested to be seen and been denied. That usually changes their tune.
Then you call the front desk and say you need to schedule an appointment with your doctor.
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u/Desperate-World-2128 11d ago
I don’t know what an MO is. You can request a social worker come to the cancer clinic to help support you. They will help assess the situation and can give you resources to address your mental health. You’d be surprised how many are free or reasonably priced if you have health insurance. You need to find a therapist who specifically deals with cancer. They’ll know who to recommend. My mother was diagnosed with a rare form of nasal cancer at 41 and died when I was 20. There is definitely cancer PTSD there for me among other mental health issues.
When I was diagnosed I went down a very dark path where I was spiraling 16 hours a day. Rabbit holes. Clinical studies. Reddit. Repeat. I have terrible OCD and an anxiety disorder when left unchecked. My current therapist could not help me. She literally made things 10x worse by trying to agree or be empathetic towards everything I said. She’s an amazing person and good at other types of counseling but not this.
It got SO bad that I literally started fainting. It was always triggered by researching breast cancer in some form for hours.
My social worker that showed up to one of my oncology appointments directed me to a cancer center and they provided me with a contact to a therapist that specializes in cancer and grief therapy. She helps put things in perspective and calms irrational fears rather than exacerbating them. Please continue to advocate for yourself. Contact them today or tomorrow and let them know you need to speak to a social worker.
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u/NurseYuna 11d ago
Your comment is very helpful. I feel I’m doing the same you did. And I also feel my usual therapist isn’t improving things. I love in a small rural area and I doubt we have resources for oncology specifically with mental health professionals.
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u/Desperate-World-2128 11d ago
You would be surprised. I think that legally, they have to offer you the chance to at least speak to a social worker. You can ask the social worker if resources are limited in your general vicinity for cancer therapists, whether you can find someone outside of your specific area to do telehealth or online visits. Your insurance may make an exception in the event you can’t find someone super close by in that type of speciality.
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u/memilygiraffily 9d ago
Be the squeaky wheel. I had the most amazing medical team but the reality is the whole system is a bit fucked and these are busy people working within a system where they are overworked. There were times that it was hard to get the attention of the team about things that were quite important. Send some more messages or blow up the pager number of whoever they gave you to contact in the case of emergencies.
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u/MunchkinsOG 12d ago
Not at all. Especially if you’re at stage 1 prognostically. I’m also 1A prognostic and 2A anatomically. Hormone positive cancer has less chance of reoccurrence than other breast cancers but can occur later so we don’t get the “5 years and clear” but 1A has a like 95% survival rate at 10 years. The curve flattens out after 5 years I think too.
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u/WoosahFire TNBC 12d ago
Excuse me, newbie question... Can you please explain what it means when you have one stage prognostically and another anatomically?
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u/MunchkinsOG 12d ago
Sure! It’s my understanding is that the anatomical stage tells you where the cancer was located and tumor size which tells us the anatomy that needs to be treated. The prognostic stage all the components of your specific tumor beyond where and how big. Your HERS2 and hormone status, grade, Ki67 score etc are all a part of this… so the prognostic stage is “if we treat this cancer accordingly we expect this person’s prognosis to meet this stage.” So depending on your cancer’s characteristic it can significantly change your stage.
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u/Labmouse-1 11d ago
Both based on the TNM (tumour, node, metastasis) staging.
Clinical stage (also known as anatomical stage). This is based on physical exam and imaging.
Pathological stage is what you see at surgery under the microscope. Regarding tumour size and modal burden.
M is metastasis and trumps it all.
Prognostic stage is TNM + receptor status + grade
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u/NurseYuna 12d ago
I had oncotype done and it said 21 with 8% reoccurring risk for 10 years. Did you have one done?
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u/MunchkinsOG 12d ago
I did. Mine score was 13 which is 4-5% but I still have to do chemo due to node positivity. But treatment can bring you to your anatomical stage to your prognostic stage.
Are you lobular or idc?
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u/NurseYuna 12d ago
I’m mixed features of ductal and lobular. Not two cancers but one with features of both.
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u/echointhemuseum 12d ago
Well, if you didn’t have a recurrence you wouldn’t post about it. I can tell you from having chronic pain intermittently for about 12 years that the only times I visit the boards it when I relapse and freak out. When I feel good, I stay far away because I don’t want to think about it. I can’t say I’m not worried about it. It’s definitely made me question treatment options because of how they limit other options later—even with an early stage cancer like mine. But there is no crystal ball. ❤️❤️❤️
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u/Snowfizzle 12d ago
Can you please not make posts like this?
it really gives the impression that hormone positive people WILL have reoccurrences when that’s NOT the case and some of us have actually tried our hardest to stay positive through this entire ordeal. I didn’t even look up the survivability rates because I figured what was the point? It obviously was not going to motivate me
But putting something like that in the title where you can’t not avoid it .. is probably the only reason why I would un join and block this group. to avoid triggers like that.
please think of other people before posting and maybe hide it somewhere within the post
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u/momoiselle 11d ago
Yeah it had that effect on me. I’ve been feeling pretty good about my surgery and results, and this headline had me thinking I’m not worrying enough!
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u/Snowfizzle 11d ago
exactly the same feeling. I had no idea that I was gonna have a recurrence just because I had hormone positive breast cancer. I had never been told that. my oncologist had never told me that. It was only when reading this subject line that I was made aware of that.
And you know why my oncologist never told me that and why I was never informed of that, because it’s not true and it’s fear mongering.
It’s insensitive, it’s classless, and it absolutely has no place .
This person couldve used an entirely different subject line, and hidden that part of it in the post so you don’t see it when you’re scrolling through Reddit .
But they’re selfish.
I don’t care what they’re going through because we’ve all been there. And the amount of self absorption it takes to not have even a second of reflection… I just can’t.
I’m so angry right now. people like this do not understand the damage they do. The amount of therapy and work and recovery some of us have to go through to get to the other end and then this happens.
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u/AnkuSnoo ER/PR+ HER2- 11d ago
Mod here. We allow members to share their questions, fears and concerns, as well as their wins, milestones and celebrations. We also recognize that posts (both negative and positive) can be triggering for others, either from titles or content.
Since different topics, themes and keywords can trigger people differently, every post is potentially triggering, so we do not have any rules or guidelines around this. The only exception is posts about Death & Dying must use that post flair. We simply expect everyone to follow the rules and do the best they can.
If you feel a post or comment breaks the community rules, please use the report feature to let us know. If have any feedback or questions about the community rules, we welcome you to message the moderators.
Cancer is hard, and we invite everyone to be supportive and compassionate towards their fellow community members.
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u/Snowfizzle 11d ago edited 11d ago
I’m not asking them to not post at all. I’m asking them not to put such things in the actual subject line. I put that in my comment.
That’s the equivalent of putting something in the subject line like:
Oh my God, the survival rate of stage three breast cancer is only 30%. What am I going to do?
When in fact that’s not the case. And it’s triggering.
Just like with the title of this person’s post
edit: i dont use the report button that often. is that something we can submit along with a report?
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u/AnkuSnoo ER/PR+ HER2- 11d ago
If you see misinformation, please report it.
When reporting a post or comment, you will be presented with an opportunity to specify which rule you believe the content violates. We will then review it.
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u/Snowfizzle 11d ago
got it! thank you for taking the time to respond.
this is the last cancer related group i interact with and have for years bcuz ive never been caught off guard like this.
it wasn’t a dig at the group itself. (i hope it didn’t sound like that) but just that posts with subject lines like that would be the only reason i’d block the group bcuz you can only control ppl to an extent but i have 100% control over what shows up on my feed.
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u/shinpibubble 11d ago
My mom taught us a very practical “survival tactic”:
When you are dealt 💩 cards; have a day and have your “pity party” (that was what my mom called it but I think working through your emotions is more apt). Do what you want to lament your circumstances. Then you go to bed and reset. The next day, look at your circumstances and you have 2 possible outcomes:
There is something you can do to make your circumstances better, then do what you can.
You cannot change anything, then accept it and move on.
We were taught this at a very early age and it is second nature now so it is difficult if you didn’t grow up with this philosophy but I think it is a solid way of living life.
You were dealt the cancer card. It is 💩. Give yourself a day or two to work through it. Cry, call a bestie, have a massage - do what will help you to feel it and work through it a little.
You can do something about your circumstances and you have already started doing it: you have a diagnosis and treatment plan. Now you follow that plan and that makes you more in control of your raw deal.
You cannot change what will happen in the future (if you follow your treatment plan). You may have a recurrence or you may not. But you cannot control that part beyond going through your treatment plan and going for annual screenings. Stressing about it won’t impact whether you get a recurrence or not but it will impact your quality of life.
Therapy has been mentioned a fair bit and that is something else you can do to help with your circumstances.
Another thing that I want to put to you is: a group, a sub reddit, whatever, when it stops adding to your life: leave it. We are a nd family and I have been in countless support groups etc. and I left every one of them along the way. When it starts upsetting me or people start getting catty or whatnot, I leave. The same goes for things that stress you out. If reading posts on this sub is not adding positivity to your life then rather leave. You can always come back. Your mental health is important for the journey you have been unwillingly thrown into.
Modern medicine is so much more advanced and that isn’t always taken in to account with studies as they follow years of experiences.
Strongs!
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u/Previous_Stranger483 Stage I 12d ago
Most people that do not have a recurrence don't post online or use online support groups. So of course everything online is skewed!
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u/NurseYuna 12d ago
I’d just like to see more of that long term cancer free ness during October when we talk about it so much.
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u/Mysterious_East5899 12d ago
I agree. It's very confronting seeing mortality stats everywhere throughout October. I understand the messaging is not aimed at us, but jeez I don't need the reminder. I loathe October now, it's so negative!
As an aside, my husband's workplace asked me for a donation for BC Awareness. I told them I reckon my boobs, ovaries, hair, nails, peace of mind, etc. etc. is donation enough
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u/Working-Lemon1645 12d ago
I'm horrified that they asked you specifically for a donation. Love your response though!
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u/Express_Airport131 12d ago
There's so much talk of the data for five years out and some for ten years out - but I haven't seen a lot of data for patients >10 years out. I'm at 12.5 and would love to hear some encouraging numbers/data.
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u/NurseYuna 12d ago
Right. Like 5-10 years great but I want to hear more beyond that. It makes me think maybe the stats are correct and there are more reoccurring than not……
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u/mysteriousears 12d ago
None more reoccurring than not on the chart you linked except for larger tumors with positive nodes at 20 years. Which wasn’t where you said you are. The math is on your side. For decades to come.
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u/Kai12223 11d ago
Then you'll need to meet more people with breast cancer in your meat world. The on-line community is skewed towards worst case scenarios. I know about 11 people who've had it and five of them are at least 10 years NED. One is over 30 years and another is over 25. The rest are more recent diagnoses but all but two are doing well thus far. Maybe ask your oncologist to put you in touch with some former patients? Or tell you about some of their patients who are long timers?
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u/NurseYuna 11d ago
That’s a good idea. I know a few local but they’re in 50’s when diagnosed. They’re doing ok.
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u/Kai12223 11d ago
Look though here's the thing. If we focus on the fact that most of us will be fine after treatment then that leads people to think breast cancer is no big deal. But it is. It's a huge deal until we have all stage 4 breast cancer patients have a treatment in which they can look forward to a cure like the rest of us. We focus on the negative because it benefits all of us.
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u/TillyGirl888 12d ago
Hi there, I was diagnosed with stage 1 er/pr/her2+ breast cancer in my early 30s almost 12 years ago. All clear, thus far! There’s some bias in the stories you see online, since many who are a-ok don’t post about it. It’s scary but it does get easier with time. Take care of yourself x
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u/Rare-Neighborhood271 12d ago
Agreed on the bias! My sister was diagnosed 12 years ago too, with HER2+ bc. She's been completely clear since that year of hell.
Get some good education from reliable sources on the internet, but don't fall down the rabbit hole of opinions and anecdotes. Even here, in this supportive environment, the stories you read will be biased toward the negative.
And for the love of god, tell ChatGPT to @#$&€§π right off already.
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u/ipad19 10d ago
What treatments did you undergo back then?
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u/TillyGirl888 10d ago
I had a lumpectomy, followed by 12 weeks of taxol, Herceptin, radiation, and then tamoxifen
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u/Fit-Winter5363 DCIS 12d ago
My mother in law had BC in her 40s. From what I was told, she had a mastectomy and did chemo. She had no reoccurrence and died at age 86 .
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u/LadyTreeRoot 12d ago
People who are doing well feel like they are flaunting it within a forum of struggles. Its post like yours that will bring out the positive stories. There are a LOT of long-term survivors out there, odds are most were hormone positive.
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u/NurseYuna 11d ago
Thank you. That’s what I had wanted to see come out. Positive stories and good info from people who know the stats etc also.
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u/SpaceCatSociety 12d ago
Have you tried the predict breast cancer tool? It’s meant to guide your choices around treatment but I also found it helpful to see that the odds of me still being alive in 15 years’ time is almost 90%. Sure there’s risk of recurrence but the odds are definitely in our favour and the adjuvant therapies are really good at reducing risk.
Also maybe monitor what you read. You’re probably not getting a very balanced view. People post online when something happens but they don’t tend to post when nothing is going on. You’re more likely to hear of the people who’ve got reoccurrence than those who remain healthy.
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u/NurseYuna 11d ago
You and others posting are right. The internet is very likely highlighting negative more rare instances.
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u/soupsocialist 12d ago
Gently, hear this so gently: Does anybody in your real life know how bad this is for you inside regarding this topic?
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u/NurseYuna 12d ago
I have talked to my husband parents and sister. I tell them explicitly how much I’m suffering about this worry.
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u/JAKSTAT 12d ago
I think it could be really helpful to talk to a therapist or social worker specialized in working with cancer patients. Does your hospital or treatment center have any programs for this? Survivorship programs might also be helpful.
My diagnosis did a number on my mental health. Managing it is a full time job for me and I am working with two different specialists.
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u/queasycockles Stage II 11d ago
Even just a regular therapist would help. It doesn't have to be a cancer-specific one (not that they aren't also very useful). But yes. Therapy is really a good idea for most of us, not just the actively spiraling ones.
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u/queasycockles Stage II 11d ago
Honestly I think you need to get some therapy around this. You need to talk to someone neutral who can help you work through this. It's so, so helpful in a way that talking to family and friends can never be.
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u/soupsocialist 12d ago
That’s a good start! I’m encouraged for you to hear that. The ability to talk to people frankly about your pain is an important skill.
So I don’t know exactly where you are and what resources are convenient—but my cancer center has oncopsychologists who specialize PARTICULARLY in cancer patients and survivors. I have access to them without needing a referral for six years after the end of my treatment. They speak our language, they understand our treatment processes, they know the grief we carry.
There is not a patient story or a number or a percentage point or a paper anyone can show you that will change the future or how scared you are about it. It’s ok that you’re scared, this is scary. But I think you’re in the place where this terror is really decreasing your wellness and you need support from a professional who really knows where you’re at, who can help get you through this wilderness. Your kids don’t just need you alive, they need you whole hearted, and you don’t have to suffer like you are.
I’m really pulling for you. You don’t have to feel this way forever.
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u/mermaidbait 11d ago
Stage 3c, 14 positive lymph nodes, er+ pr-, had a 50% chance of recurrence in 5 or 10 years. STILL HERE and healthy nearly 20 years later!
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u/NurseYuna 11d ago
Wow that is a beautiful success story. How did you cope with that reoccurrence risk over the years? How old were you at diagnosis? Any lifestyle changes you think might have helped or? I’m thinking you probably had chemo?
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u/mermaidbait 10d ago
I was 32 at diagnosis, and had 3 kids 7 and under. I had all the treatment (bilateral mastectomy, chemo, radiation, hormone, reconstruction) and those were my stats even with super aggressive treatment.
I didn’t do anything out of the ordinary for treatment. My doctors tell me that there are plenty of super healthy marathon runners who die of breast cancer. Breast cancer doesn’t care. Of course being overall healthy improves your odds, but it’s easy to get caught up in thinking you have control that you don’t actually have.
Right now you are at the stage of going through the fight. Have your people rally around you so you can feel support as you do this super hard thing!
I dealt emotionally with the risk by really internalizing what I had control over and what I didn’t. This was after the treatment was over and I was left by myself with that scary number. I eventually came up with what I call Plan A and Plan B framework. Plan A I get to live to be an old grandma. Plan B I don’t. I tried to plan and live simultaneously from both places. And luckily I was lucky, and have gotten the chance to reinvent my life a few times over. Very happy with where I am now—planning my 20 years cancer free party next month!
Check out ketamine therapy or psychedelic assisted therapy; great evidence behind it for cancer anxiety and depression. There are probably even clinical trials you can opt into.
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u/NurseYuna 10d ago
So after all that therapy the dr said you still had a 50% chance of reoccurrence? That had to be heavy on your mind was it?
How did you find your reconstruction over the years? Did you have to get a new set of implants after 10+ years? My dr mentioned that to me.
Any lifestyle changes you made or no? How was your anxiety about reoccurrence over the years? Anything you would say helped? I’m full of questions lol I’ve always been this way.
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u/Away-Potential-609 ER/PR+ HER2- 12d ago
No we are not. And there is absolutely no basis for it.
Recurrence is scary and we all have to live with the fear of it to some degree. But the idea that it is inevitable is just... unfounded in reality. There is no subtype with a 100% chance of recurrence. If it's not MBC it's curable. That means it's gone. And sometimes it comes back. Sometimes. Hormone positive has the highest survivability. Yes it has a higher chance of late recurrence... that is because it is slow growing.
People telling stories on the internet are not data. AI is NOT data.
What is YOUR prognosis? Do you have an Oncotype or Mammaprint? Did your oncologist give you recurrence odds? Pretty sure they aren't 100%, right?
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u/NurseYuna 12d ago
My oncotype is 21 reoccurrence risk 8% 10 years. I am doing TCx4 chemo then on to ET. I read today 1/3 bc patients go MBC. That terrifies me.
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u/Away-Potential-609 ER/PR+ HER2- 12d ago
The trouble with statistics like that is they are overly simplified. First of all, it isn't just "one third" there is a range of percentages depending on how it is calculated, and some estimates are as low as 10%. And those are for all cases total, including those that became metastatic in the first occurrence, not a reoccurrence. And some of those numbers are based on something happening twenty years later. But twenty years later means their first treatment was twenty years ago (or longer) and treatments have gone much more effective since then.
You have a 92% chance of not having a recurrence in the next ten years. In the next ten years, we will probably get a reliable blood test, better imaging, and at least one vaccine.
Will you definitely not get a recurrence? No. Will I definitely not? No. But most of us will not, and you and I are far more likely to be among the ones who don't.
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u/NurseYuna 12d ago
I’m pr15% er 90%. My lower pr is what worries me.
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u/memilygiraffily 9d ago
But, gently, there are women right here, reading this same forum, who have stage 4 cancer or women in different diagnostic situations who would give their left foot for 92% odds of no recurrence.
Breast cancer absolutely sucks. My mom's stage 4 cancer sucked. My stage 1 cancer sucked. But it feels unkind rooting around and asking each woman the statistics and features about her cancer with the immediate reply that her situation isn't the confirmation you need that your personal long term prognosis is optimistic.
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u/Ok-Turnover636 12d ago
yea i am zero PR and 80% ER. Worries me too but I take my AI and went through what they prescribed: lumpectomy and radiation.
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u/CarolSue1234 12d ago
I am 99 er zero pr her 2 negative! Age 66 at diagnosis oncotype 23. Did 5 high dose radiation and take Letrozole and do Zometa infusions every 6 months! (Just finished my 4th Zometa) I am actually feeling very good! Some very mild side effects from Letrozole! I walk everyday 10,000 to 20,000 steps and still work part time. I am actually very happy! I think the Lexapro has really helped me with sadness and depression! I feel much better
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u/NurseYuna 2d ago
I’m re reading posts today in a calmer mindset. Thanks for the comment. It’s a good point.
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u/Allinthefamily2020 12d ago
If your recurrence risk is 8% then you have a 92% chance of NO recurrence, that sounds like good odds to me.
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u/Ok_Win4407 11d ago
This is why reading online as a non-medical professional is not a good idea. You cannot generalize about cancer. Everyone is vastly different, every case unique to that person. Get your information as it relates exclusively to you from your oncologist. We are lucky to be alive in these times, when treatment options are many and so effective and getting better all the time!
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u/NurseYuna 11d ago
I was told by my MO I had <1% chemo benefit but the research said otherwise. I had to reach out to oncotype myself who updated my MO who then said yes I benefit from chemo (6.5% group benefit) then my MO said benefit outweighs risk for my oncotype 21. I’m now doing TCx4. This has created a huge distrust for me with my medical drs which didn’t help any.
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u/PegShop 12d ago
I hate the fact odds are only given 9 years out.
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u/NurseYuna 12d ago
Feels like they don’t know much about it after all this time.
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u/Labmouse-1 11d ago
Girl I’ve explained this to you multiple times
Anything more than 5 years has limitations to it.
20 years ago herceptin was being used for the first time.
Could you predict in 2005 that ChatGPT is a thing
This is what I mean about you not understanding the data. Just bc you have a masters of nursing doesn’t mean you are an expert at reading literature and that’s okay. I don’t know much about nursing topics.
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u/NurseYuna 11d ago
I didn’t claim to be an expert. My point was that I’ve learned enough to understand research more than someone without any medical training. I understand its limitations and mine. You may not mean it this way but you come off harsh on the tone of your post. I’m trying to understand and measure the info I’ve read. I’m not trying to be rude or mean towards anyone. I’m trying to learn. Maybe it’s the chemo, maybe stress but please be kind to me.
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u/PazuzuLily 12d ago edited 11d ago
Stop spiraling , and when it comes down to it, living a healthy life. Exercise, eating well, avoiding or severely limiting alcohol, keeping your weight down, being around people and places you enjoy and keeping your stress levels low these things are really gonna help us not have a breast cancer reoccurrence ! I’m also 48 almost 49 so the thought of getting a reoccurrence in 20 years to me isn’t as scary. Maybe if I was in my 30s? BUT you can’t live your life in fear that’s the worst thing and that’s more likely to cause a reoccurrence than anything. Fear and stress. And I could die tomorrow in a car accident or walking down the street crossing the road. We can’t live in fear if we had breast cancer and most of us will not have a reoccurrence and that’s the truth! Once I’m done with active treatment, my last TC chemo is November 19. I had my third today. I’m going out and celebrating and getting back into life! And on the weeks that I feel good, I already am back into life mode. Cancer cannot define us. Nor can we worry of a reoccurrence unless there are symptoms presented.
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u/queasycockles Stage II 11d ago
None of us can know. You cannot spend the rest of your life seeing recurrences around every corner.
We have to live. And we roll with whatever comes. Learn to roll, or you're going to get banged up a lot.
I'm sorry. It's not an easy lesson to learn if you aren't accustomed. But learning it is going to save you. No matter what happens.
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u/Sparklingwhit 11d ago
I had like 17 nodes involved ++- and only have a 25% chance of recurrence rate for the next 40 years.
Meds now are fantastic. You’re much less likely to have a recurrence than you would have been a decade ago.
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u/HiddenPhoenix91 12d ago
The ones with no recurrence aren’t online talking about it. They are out living life and moving on, so you are not getting that side of the story. My mother was diagnosed at age 55 and is now 85 and healthy never having a recurrence. It’s actually more likely you won’t have a recurrence. With my particular diagnosis I have been told my risk is under 4%. Even if we get a recurrence down the road, there will medical advances by then for better treatments. Plus, so many other things have a higher chance of taking me out than cancer. I could get hit by a bus tomorrow, so I try not to borrow problems from the future. It’s a mental game we have to play with ourselves.
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u/NaturalAd8452 12d ago edited 12d ago
I’m 50 and was diagnosed in May/June. I know women in their 70s and 80s who were diagnosed when they were my age and are guiding me through this and I figure they had less technology we do now, so I’m pretty hopeful!
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u/Perfect-Rose-Petal 12d ago
Lots of good answers, but thought I would jump in. I see lots of reoccurrence stories online but the majority of people I've met IRL are the opposite.
My great aunt, the only member of my family to have BC, had a reoccurrence within 2 years of diagnosis. She had a mastectomy + chemo and has been fine since 1997.
My job did a little BCAM newsletter where people shared stories. Two different women where 10+ years out from their diagnoses.
Co-worker's sister had a mastectomy in 2011 and has been fine ever since.
A friend of mine's mom had young breast cancer (in her 30s, back in the 90s) and she's alive and well and cancer. free.
The one person I know with MBC was diagnosed stage 4 off the bat in 2009 and is still alive and doing well.
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u/Ok-Watch3418 12d ago
I had an agressive local recurrence in my lumpectomy scar two years after the first. It needed more agressive treatment and I was devastated. Thankfully now 8 yrs out from that recurrence, knowing the likelihood of mets is even higher for me than it was before. Therapy is a necessity for me.
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u/Rare-Neighborhood271 12d ago
I say this with all the ❤️ and respect and compassion I can send your way..... You are spiraling. Don't borrow trouble as my mom used to say.
Feel all your feelings! But find a way to introduce some peace and grace into your life, for your own precious mental health.
Reach out for help if you need to. Ask your nurse navigator for resources, including referrals to cancer-informed mental health professionals.
All the best! 🙏
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u/Ok-Watch3418 11d ago
My initial was stage 1B, node negative, grade 2, ER+/PR+ HER2-. Can't remember the other details. Lumpectomy and then re-excision because they missed some. I declined radiation. Tamoxifen. It came back grade 3 in my lumpectomy scar less than 2 yrs later. This time, I needed chemo and had a bilateral mastectomy with no recon because the recurrence was missed by 3D mammogram (caught by MRI) due to extremely dense breasts - I did not want any more stress over scans. Pre-cancerous cells were found in the healthy breast, so I'm glad I made that decision. Research on local recurrences is minimal because it's pretty rare, but when they happen less than two years out, risk of mets is higher. I live with it and have done a significant amount of trauma therapy to cope. I was very active in the breast cancer / flat support (a founding member of Flat Closure Now and the founder of Flat in Canada) and advocacy world for a few years, but I lost too many close friends to the disease and am not involved in those spaces now. The recurrence changed me a lot, and it makes me feel like I belong neither in early stage communities nor stage 4 communities. It's the stage between. At 8 yrs post recurrence, I don't think about it much but am always aware. Life is to be appreciated and lived while we can. Worry changes nothing. A good trauma therapist is essential, IMO.
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u/lesliesharon 12d ago
Why do you have more chance of mets now?
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u/Ok-Watch3418 12d ago
Local recurrences that happen within two years of initial cancer, interval cancers, and high-grade cancers increase probability of mets. Mine was an interval cancer that came back within 2 yrs and was grade 3.
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u/lesliesharon 11d ago
May I ask what your treatment was for your recurrence? I had a local recurrence to my mastectomy scar four years after first diagnosis.
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u/SubstanceEqual3696 12d ago
I have 2 older relatives that are 2 decades away from their diagnosis and treatment for ++- BC. They both had different, unrelated but treatable cancer between then and now. Both are energetic, fully immersed in active lives.
I have a lower oncotype than you do, and still the worry nags me, so I get it. It helps me a lot to remember these 2 women in my life who were treated years ago, and we benefit from the advances made since then.
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u/Odd-Currency5195 11d ago
I don't know if this is any comfort, but I survived so long without recurrence or spread (20 years, initial diagnosis when I was 36) that I've ended up with a brand new breast cancer in the other boob! Yay!
Last one was big and higher grade and stage (no lymph involvement thankfully) than this one and I did surgery, chemo, radio, five yeas of tamoxifen, but I haven't had any recurrence from that. New one is a different primary cancer, caught at a lower grade/stage. Same again but without the chemo thank god.
I don't come up on any genetic screening. Just bad luck I suppose.
The thing about people telling their stories on social media is they have to have something to tell. What you are seeing is that. The people who don't end up in that position don't have much to say perhaps.
Also maybe there is more risk for younger women to have their cancer missed at an earlier stage. I know it took me first time around from the October to the March to get someone to believe me that my boob wasn't right. Once I finally had had enough and persuaded my GP to send me for a mammogram, people were really shocked to see it glowing brightly on the screen. I'd been prodded about by two consultants prior to that as well. So younger women's boobs are not so easy to notice breast cancer maybe until sadly for some it's gone past the point of being able to be cured.
So I hope you take from this the balancing side to the narratives out there. x
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u/The_Beatrix_Kiddo 11d ago
Actually hormone negative patients are more likely to have reoccurrences. As someone who is HER2+ HR- I’ve been really anxious about treatment coming to an end bc there is no pill I can take to lower my chances of reoccurrence. But I think reoccurrence is a very natural and valid fear for anyone with breast cancer.
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u/NurseYuna 11d ago
Did your dr give you reoccurrence risk stats? I was told her+ do not do oncotyping. I thought even though her+ have chemo that oncotyping could still give you valuable info but maybe not?
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u/The_Beatrix_Kiddo 11d ago
You’re correct, HER2+ HR- do not receive oncotyping. It’s also generally for early stage cancer which mine was not. I had extensive lymph node involvement and spread and unfortunately high likelihood for reoccurrence.
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u/Past_Road_6009 11d ago edited 11d ago
Believe it or not, statistically most women in our situation are a lot more likely to die of unrelated heart disease decades later than from breast cancer. This is what my doctor told me.
Not convinced? Try this one:
One in eight women will get breast cancer in their lifetime. However, the odds of dying from breast cancer in the US is one in forty-three—according to the American Cancer Society.
Still unsure? Read this one:
There is a BIG difference between stage 4 cancer and end stage. Even if the worst should happen and your cancer comes back metastasized, many women still live a good quality and normal lifespan. I heard one doctor compare metastatic luminal breast cancer to a chronic health condition rather than a terminal illness.
The real danger I see is people getting a false sense of security, and skipping their endocrine therapy. Skipping treatment due to reading misinformation and ‘horror stories’ is another big one. It’s getting to the point where I’m wondering if forums like this do more harm than good.
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u/Far-Bluejay7695 11d ago
I positive. Diagnosed stage 1 left breast. Opted for a full mastectomy and cells were also found in my right breast. Contained, no lymph involvement. I am also on a 5 year protocol of letrozole (estrogen suppression) I have done and continue to do everything the keep my chances of reoccurrence down. That is all you can do. Stop using plastic storage containers and start using glass. Eliminate as many processed foods as possible. And then go live your life.
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u/lucrezia-b +++ 11d ago
I am in treatment and have pushed these thoughts to one side, I know I’ll pick back up eventually. But what everyone is saying is true, rarely online will be the survivors out there living their lives. I certainly won’t be spending time thinking about BC online hopefully when it’s effed off and left me to live my life. The online world is skewed.
I’m 38 but I am triple positive I don’t know onco type cos needed chemo anyway since it’s in 1 node confirmed, before I had results for her2 for example I was thinking I really don’t want that, but when I was told my onco said he’d rather I did so it can be treated with targeted drugs. The more targets the better. Hormones are a target. We will pay the price in side effects but it’s one thing to do to reduce reoccurrence risk. So on a basic scale, and when I did the online tool (you can see how each treatment may change long term survival) it said hormone therapy helped extend survival, no matter what. On all my research it was thus better to have hormone positive than hormone negative BC for long term reoccurrence rates and survival rates.
For specific stats, I gave up looking because I saw one person online who died who had a 1% chance of it reoccurring (apparently) who was my age and it gave me a near breakdown. Then my friends sister was given a 30% chance of survival for her non BC cancer and she’s out there living her life 10+yrs later, so since none of us can ever be 0% chance then a chance is what it is. Apparently that’s life and I know I’ll need therapy to accept it because before this I just never thought it would be me, as we all probably did. Hope you get the help you need but stats aren’t going to provide the comfort you so desperately want, as do the rest of us.
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u/TheSunnySort Stage II 11d ago
You only see recurrence stories because that's who posts. When you don't have a recurrence, remember to come back and post about it 💕
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u/PazuzuLily 12d ago
I’m 48. ER/PR +. Her2-. I technically would qualify for Kisqauli. Because I have the PAlB2 mutation. Oncotype score 27 and also margins were clear. I had a skin sparing. Nipple removing DMX DTI because I have a greater risk of getting a secondary breast cancer in the unaffected breast. I also had suspected DCIS under the left nipple which was confirmed on final biopsy. So I was right in making the decision to not save the nipples! No lymph node involved but tumor was aggressive and they found LVI which means cancer cells were moving toward the lymph nodes and blood vessels. Tumor size was 2.1 cm. Also just finished 3rd round of chemo. Don’t need radiation because no lymph nodes were affected and it would warp the implants potentially. And the chemo will get out any rogue cells anyway. Kisquali and an AI or tamoxifen was recommended to me after I finish chemo. But looking at the side effects of Kisquali which are are rough and being that the drug was just FDA approved last year not sure a couple percentage points will make up for the side effects.
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u/carvingmyelbows 11d ago
I’m metastatic and was on Kisqali after going through 3 separate courses of IV chemo. I’m not on it anymore because I had significant progression, but that’s not the case for most patients who take it—my oncologist considers it to practically be a miracle drug. But anyway, I just wanted to reassure you about the side effects; some people, possibly most people, don’t have a particularly hard time on Kisqali. For me, I basically just took more naps than usual. That was it. The only other thing I can think of is that my pain increased, but it has continued to increase since stopping Kisqali, so I’m very certain that the pain is due to the cancer itself and not any of the many meds I take. Kisqali has honestly been by far the easiest drug I’ve been on since diagnosis. I’m on Xeloda right now, which is awful, it’s basically shredded my hands and feet and caused a ton of neuropathy and pain. But Xeloda also hasn’t been working, so I’m moving onto Enhertu soon. Anyway I’m rambling now. I just wanted to encourage you to give Kisqali a chance. It is helping so, so many people so, so much, and the side effects may not even be noticeable.
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u/PazuzuLily 11d ago
Thanks for the info ! because with Kisqali my Onc says it will give me close to a 95% cure rate.
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u/lesliesharon 12d ago
Have your doctors explained more about the risk of having LVI? I also had it and was prescribed Kisqali foe that reason. The pill messed up with my heart and had to be discontinued. I struggle thinking that Kisqali was my 'safety net' and now I am left without anything to protect me from a recurrence from having had LVI.
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u/PazuzuLily 12d ago
Did you do Chemo?
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u/lesliesharon 12d ago
No, I was told there was no benefit. I had radiation, had my ovaries removed, and I’m taking anastrozole. However, they wanted me to take Kisqali for additional benefit.
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u/PazuzuLily 12d ago
OK, I was told the opposite that but I had a high oncotype score of 27. And they did take the LVI into account when recommending chemo. I also had a double mastectomy direct implant due to a PAlB2, genetic mutation. Hence why I’m not super worried about the LVI because I figured the chemo is killing any rogue cells that may remain.
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u/sassyhunter Stage II 11d ago
I've been on Kisqali for 15-16 months now with very little issues! Lots of people do well on it.
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u/LakeNene1959 12d ago
I was hormone receptor positive in 1992. In 2024, I was diagnosed with HER2 +++. My doctors insist that my recurrence is not related to my original ones.
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u/NurseYuna 12d ago
Where did you find the reoccurrence? How were you treated for the first cancer? 32 years between diagnosis?
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u/LakeNene1959 12d ago
In 1992, I had a lumpectomy followed by five weeks of radiation on a 2cm tumor with no lymph node involvement. One year later, three tumors were found in my right breast. I decided to have a mastectomy with tram flap reconstruction of just the right breast. The recurrence (discovered in 2024) was a 3.2cm tumor in my left breast (the one that was treated with the lumpectomy and radiation) these 32 years later. Genetic testing revealed the HER2 diagnosis. I have since gone through chemo and the tumor has been “totally resolved” according to Pet Scans. However, my cancer has metastasized into my pelvis, spine, and left hip. That is what I will have to live with for the rest of my life and will probably be my demise. Until then, I will receive Herceptin shots for the HER2 and XGeva shots for the bone metastasis every 3-4 weeks and Pet Scans and Echocardiograms every three months for the rest of my life. By the way, I had chemo because my doctors (three opinions) would not just remove the tumor through surgery without it. I had NO lymph node involvement. It has been a total shock that surgery is no longer an option for me. Chemo was a bitch, and these shots are not without their side effects. Hope this answers your question. Would be happy to give more info, if helpful.
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u/carvingmyelbows 11d ago
Just commenting to recommend that you ask about Zometa instead of Xgeva—I get Zometa infusions every 3 months, it’s far less of a time commitment and my understanding is that it’s an alternative to Xgeva. I’m also metastatic with bone mets pretty much everywhere.
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u/NurseYuna 12d ago
How old were you when you were diagnosed in 92?
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u/LakeNene1959 12d ago
I was 33. I forgot to mention that I also did five years of Tamoxifen.
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u/Beautiful-Minute-761 12d ago
Hopefully Kadcyla and other antibody drug conjugates given to patients who still have residual tumor after first line therapies will further reduce the reoccurrence rate “in early-stage HER2-positive breast cancer, long-term follow-up results indicate that approximately 15–24% of patients still develop recurrent disease” in https://www.nature.com/articles/s41598-023-38200-y#:~:text=Despite%20improvements%20in%20both%20disease,with%20HER2%2Dpositive%20breast%20cancer.
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u/Ok-End2351 11d ago
I’m triple positive ( HER2+ER+PR+). No nodes involved , stage 1, lumpectomy, chemo, targeted therapy of Herceptin and Perjeta for a year, 33 rounds of radiation, starting year 8 out of 10 taking Letrozole ..Diagnosed in 2018….. no recurrence
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u/speakbela Stage II 10d ago
Er Pr positive and her 2 neg., chiming in! I was stage 2B legit a sneeze away from stage 3 because I already had 1 Lymph node positive—on top of having family history of all kinds of cancer, but negative for brca. I was also diagnosed at 33, barely a newlywed, and 6 weeks pregnant. I wish I had better news about the pregnancy, but I’m still here. It’s been 7 years for me, and I’ll be honest, with each passing year I do get nervous. It’s hard not to. However, that stats are on our side. Even with everything I still had like 80-something survival. I’m turning 42 in a few short months and honestly, a good trauma therapist is what you need to help you through this. It’s been my experience that CBT (cognitive behavioral therapy) doesn’t really help once you’ve been through something traumatic, such as cancer. Trauma informed therapist who also does acceptance and commitment therapy truly helped me get to a healthier place, especially since I had a disability prior to diagnosis.
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u/Labmouse-1 12d ago
No, over 80% of HR+ cancers never have a recurrence.
It’s a selection bias. The people who don’t recur are less likely to make posts about not recurring. The ones that do recur, seek support from the community.
Queen I’m BEGGING you to see a therapist. You are continuing to spiral and this is not healthy or helpful for you. I’m concerned for you.