I was diagnosed with Stage O DCIS - all Grade 1. Less than 2cm. Clear margins. No other boob issues as seen on mammo, MRI, u/s and no family history.
I’m almost 50 and perimenopausal. I was lucky enough to join a clinical trial in which the Oncotype DCIS was performed on my cancer cells. A low risk of recurrence (i.e. - less benefit to radiation) is a score under 39. My rads onc was expecting a 7/8% recurrence risk.
Amazingly, my score was ZERO. No, it wasn’t an error and yes, people (though rarely) get a zero score. I’m waiting to hear what percentage recurrence that is but my internet meanderings have noted 3-5% recurrence risk in 10 years. Essentially, I am the lowest end of the lowest risk category. So if we do the halfway point of 4%, thats a recurrence risk of 2% DCIS and 2% invasive.
My oncologist said Tamoxifen is a 1-2% benefit and take it or leave it (this was before I did the test though).
I feel SO WEIRD doing nothing (which is untrue, because I did have surgery) and I very much recognize the beneficial position this puts me in and I am so grateful. I also know my case bodes well and adds important research for the future. I hate that I am thinking and overthinking about this. I DON’T want to take tamoxifen because I know I’m sensitive to meds and this could be a tough go (baby tam 5mg/3yrs). I know I could just try it and stop it…but UGH…!
Has anyone been in this position or refused Tamoxifen with this low grade of recurrence? I really really need to hear from women who’ve gone down this or a similar road because I’m the only one of my friends who’s had this.
Thank you so much for your help/input/advice and I am sending you all the best best vibes.
I have read that not all DCIS will necessarily mutate to IDC, especially low grade ones like you had, so overtreatment can occur. I had IDC that was Her2 3+, but got refused herceptin on basis of low grade. Treatments get adjusted to the situation, as they should.
I also stopped taking tamoxifen after 3 months - basically took it up to end of radiotherapy, then once had that cover stopped it. I was in the unusual situation where being pr -ve reduces effectiveness of tamoxifen and also being her2 but untreated for that also reduces tamoxifen’s effectiveness, plus, in theory, taking it could actually encourage growth via the her 2 route - both receptors should be treated at once. Of course, I was left to reseach this and work it out myself as they just dish it out as a blanket approach regardless of circumstances. That against some awful side-effects I had made it a no-brainer to stop. I actually fear more that taking it could promote the her2 pathway, so I’m totally at peace with my decision. I was a grade 1, no node spread.
Hi I was diagnosed with DCIS last year, I had lumpectomy but margins not clear so has mastectomy 1 boob oct 24. Tamoxifen was offered but from the research I did the benefits on DCIS seemed minimal and the side effects of the drug sounded awful so I decided not to take. I think you have to weigh up potential benefit with potential side effects and impact on daily life.
From the reading I did I concluded keeping healthy weight, not smoking, being active were more likely to reduce future risk.
Lots of grey areas with DCIS which I have found hard to digest. Having to decide to remove your boob for something that may never turn Invasive was hard but hoping the mastectomy has taken the chance of invasive cancer away.
Like you said you could try it and stop if it makes you ill??
I also spoke to one of the breast cancer now nurses.
I had IDC grade 1 stage 1 tubular 10 mm or less . I was low grade enough to be offered and put on the SMALL trial . I was randomised to have my cancer removed under local anaesthetic with radiological guidance ( VAE) with no lymph nodes biopsies . This was unsuccessful and I had the remaining 6 mm of tumour removed under general anaesthetic as WLE with negative SNB. My Surgeon prescribed Tamoxifen but said that as I was very low risk etc. it would be reasonable for me to stop if I didn’t get on with it. It turned out that my medical history made me unsuitable for Tamoxifen so the Oncologist put me on Anastrozole and went through my Predict score which refers to mortality rather than recurrence which was 0.8 % at 5 years to 1.3 at 15 years - taking Anastrozole only improved it by the tiniest margin and in Predict 3 it’s even less. I decided to give it a go anyway but abandoned it after just less than 5 months due to side effects. There are people who do take the drugs and don’t have side effects - I wasn’t one of them. I did some reading around tubular cancer and found that it’s less likely than most others to metastasize so this helped me to decide.along with the fact that my surgeon had said it would be reasonable to stop . Your Oncologists’ take it or leave it sounds similar - policy/ guidelines probably dictates that he has to offer it to you but he doesn’t sound exactly as though he’s urging you to have it which seems unusual for an Oncologist.
I work with someone who had lumpectomy and radiation but wasn’t offered hormone therapy for some reason.
You haven’t done nothing - you’ve had the surgery and you went on the trial which has given you more Information than many people get and that information has been made available to better inform yourself and your team about your case and should theoretically help with this decision - but sometimes the more Information you have the more confusing it becomes. As oncotype often isn’t done for DCIS I’m wondering how they can be so sure that’s it’s so rare to get a score of zero. Also you talk about your internet ramblings so be careful where you are getting your information from.
I’m thinking that you might benefit from talking it through with a Nurse on the helpline here - sometimes a professional not directly involved in your care can be more helpful . Otherwise if you have a good relationship with your BCN you could contact them - when I was having doubts about having stopped I got a clinic appointment with a BCN and used her as a sounding board . If you have a Research Nurse you could perhaps speak to them as well. As your result came through after you were prescribed Tamoxifen I think they probably should be scheduling an appointment with you in light of your result otherwise what was the point of having the Oncotype test in the first place so I think it’s important that you do speak to a relevant health care professional about it .
I would say check local support groups but at the 2 I go to side effects of hormone therapy is often the major topic and sometimes I feel like a fraud as I’m not on it anymore. One lady did say she wasn’t having any side effects at all on Tamoxifen though. The more bitter complaints all seemed to be related to Letrozole or Anastrozole.
When you are low grade can end up suffering with imposter syndrome and feeling as though you never really had cancer at all so don’t be tempted to take the Tamoxifen just to prove to yourself and others that you did. Xx
Thanks so much, everyone! I am in Canada - so no “nurses” per se. Are you saying I can speak to one via this site?
I wanted to provide an update as I did receive my actual report this week (as I knew Onco DCIS score of 0 meant no benefit to rads, as the biology of those cancer cells is very very indolent. Plus it would be left side. But I didn’t know recurrence rate).
The recurrence rate for me is 10% over 10 years based on my personal biology and clinical features, but reasonably, I might be a touch lower than than because of my 0 score. This ‘divides’ as follows: the risk of DCIS recurrence is 6% and the risk of invasive recurrence is 4% over 10 years. Most times, with low grade it is a recurrence of DCIS, which is reassuring. Tamoxifen would give me a 2-3% off the total recurrence (so, from 10 to say, 7 or 8) but only one percentage off the invasive recurrence. Personally, I don’t think it’s worth it for that benefit as it is not survival, just recurrence - but I am willing to give the pills a shot (5mg/3yrs).
Maybe I’ll be that rare duck with no side effects (she said sarcastically).
I can tell you this: I really hate that after so many months I’m back to rabbitholing these minute percentages! I wish I knew any others in my situation but not many seem to have done the Oncotype for DCIS, only DCISion RT.
Thank you so kindly for taking time to write me. And you’re right! Imposter Syndrome is real! Be well! xoxo
As you aren’t in the UK I don’t think you could access the helpline but you could post in the Ask The Nurses section. So your Oncotype is zero but there’s no real way of accurately working out what that does to your scores… sounds like a classic case of research opening a door without knowing how to manage what’s behind it though I imagine the trial you’re on will help women in the future once they have gathered more data . To be fair the scoring systems are only a guide anyway as there are too many individual variables between us all to give anyone a guarantee . I hope you get on alright with the Tamoxifen - i gave up mainly to joint pain which kicked in after about 6 weeks but for the first month I had bad menopausal side effects but they did become manageable and I would probably have persevered if not for the joint problems. Xx
Ah no, the Oncotype of 0 is extremely good. It is not a nomogram type of score. It is based on my OWN cancer cells and they have the lowest possible score for low risk (any score under 39 is low risk). It is a test of 12 cancer related genes in my own tissue and how prolific they are. So, my personal cancer biology itself is very sleepy and slow and unlikely to recur based on that. But then they “map” your score with some fancy mathemetical equation using a subset of equivalent-ish women from previous clinical trials which have similar clinical features. So, the final score is generated from that because the clinical features (age, size, margins) also matter and raise/lower risk. So the score is pretty accurate (but of course - we need more trials for larger populations to be studied!) (omg, did that make sense?)
But yeah, as research improves w/ clinical trials - hopefully our cancer treatment can be more personalized to biology vs one size fits all. Women deserve better!
I think you have also done all you can as well - and with lifestyle changes, my feeling is maybe that can make up for the slim benefit hormone drugs may have provided - not to mention benefit our entire bodies!
I so appreciate your kindness and for taking the time here. xo