Hello, I´m just after having a recurrance.
I had DCIS in 2017, grade 3 (inner lower cuadrant) and 1 area was biopsied and diagnosed but then there were another 2 areas of calcifications (7x5mm and 10x13mm) not biopsied but checked by MRI and said they were clear. This was to make the decision for mastectomy or lumpectomy. So I did radiation and 5 years of tamoxifen and these calcifications were never mentioned again on any screening. After I finished Tamoxifen in August 2022 I had a check up and mentioned pain in the area the cancer was before. This was put down to side effect pain and no lump found. Then 6 months later I had Mammogram, MRI and ultrasound and they couldn´t make out 7mm lump on screening exactly what it was and it was biopsied dcis grade 3 with idc grade 2 (7mm). It is right beside the metal clip marker. On visiting my oncologist recently she was shocked I got my dcis back and said this rarely happens and maybe my Tamoxifen didn´t work which has caused me a lot of anxiety. She also said it could be strong family pre-disposition ( 2 aunts died) and that could be it too even though genetics are clear. She hasn´t seen my initial results from the DCIS in 2017, but looking at them I think they missed my cancer as that area was never biopsied and the same area too. I would prefer to know as this is causing me a lot of distress thinking my medication won´t work again or that i have high pre-disposition when in fact it could be that they just missed it. Not sure how to approach this. I now have had a mastectomy, expander for reconstuction and am being put on Zoladex and Anastrozole, I am scared they won´t work if Tamoxifen didn´t. I also asked for DMX and refused as too agressive so has SMX.
It was:
2017 DCIS grade 3 age 41 inner cuadrant biopsied. Another 2 areas (7x5mm and 10x13mm) not biopsied but cleared on MRI. Radiation x 25 and Tamoxifen finished 5 years.
2023 Local Recurrance Stage 1, DCIS grade 3 + IDC grade 2 (7mm) age 46 Mastectomy and aromatose inhibitors.
First of all I am so sorry you have had to go through this again. So glad to here they caught it early though which gives you the best possible prognosis. In saying that though, I’m not sure how they can conclude tamoxifen didn’t work. You didn’t have a recurrence while on it but only when finished with it which happens. Your chances of recurrence in fact goes up right after you stop any kind of endocrine treatment. Personally it’s why my goal is to be on them lifelong if I can manage it health wise but we’ll see. But even if by some odd chance tamoxifen didn’t work, AI’s are completely different. They work differently, have better statistics in fact for working, and can easily be monitored for effectiveness through blood work. So it sounds like you are on the best possible treatment.
Thanks for this I never knew that about Tamoxifen and coming off it, I wish they would tell us these things, I find we need to find everything out from forums and online, I´ve been very down as I had bad depression on Tamoxifen, it gave me scary low moods and friends were concerned in the last 2 years but I pushed through it and my oncologist knows this. I refused anti depressants as I knew I was coming off it. So the plan is to try it, see how I am on it. I´m just scared as my aunt got diagnosed the exact same age (but mastectomy) and the exact same recurrance, just after stopping Tamoxifen and it spread to her shoulder bone (not in nodes). My other aunt refused treatment until it was 2 late and was very angry with cancer. They both passed early 50s, My grand aunt to same… no genetics found although they want to recheck to see if there is anything else I can get tested. They have refused the oncotype dx test as they think 7mm stage 1A luminal A doesn´t need it. I need to do more research on AIs and Zoladex so I feel more confident. Thanks soo much again xx
Hi libby
I’m so sorry you’re going through all this - again. The good thing is that your recurrence isn’t metastasis and Stage 1 is more easily treated.
It sounds like your oncologist was thinking aloud, not realising you would latch onto every random thought that came out. To be honest, the genetic link between your aunts and you is not a strong one. If the genes test indicated no genetic risk (essential to know if you have other women in the family) then it’s unlikely there’s a link with your aunts or great aunt. My mother had breast cancer twice (20 years apart, unlinked). Three of her six sisters had breast cancer. Then I got breast cancer and there was absolutely no link between them (fortunate as I have a LOT of cousins). I don’t know how that works but it meant we all had different treatments and outcomes.
MRI is considered by far the most reliable form of diagnosis. This may sound daft but if you go to Google images and type in MRI banana, it will show you a set of 4 images comparing x-ray, CT and MRI, demonstrating how much more effective each tool is. That may help you have more trust in your MRI diagnosis. Of course, a diagnosis is only as good as the radiologist writing the report but an oversight is unlikely, though not impossible. Have you asked to see those scans and have your oncologist talk you through them? This will rankle with you till you do get real evidence and reduce the trust and confidence you have in your team, not a good place to be in. However, common sense tells me that, even if there was something there too small yet to be discerned, your radiotherapy would have resolved it - it’s not as targeted as we would wish (4 years on, I still need pain relief for my ribs and breast muscle!).
There is a range of AIs. Generally they are linked to your age and proximity to perimenopause and menopause. In the UK, there is tamoxifen, then letrozole (menopausal), then anastrozole (post-menopause). They each have the same purpose but work differently, with different side effects. There is no evidence presumably that tamoxifen didn’t work first time. Cancer cells are often undetectable and your recurrence this year was caught at a very early stage, which is promising. It seems to me the real issue is loss of trust in your team. Ask a few questions, lay a few nagging fears to rest and try to accept that there are no guarantees in Cancerworld. ‘Cancer-free’ is based on detectable evidence and these little bu**ers sometimes like to lie in wait, undetected because we don’t have the tools to detect them. It’s no one’s fault - it’s the survival instinct of bc cells!
I wish you all the best with your treatment. Please don’t over-research - you really need peace of mind, not constant questioning - and a little knowledge is a dangerous thing, as they say. Take good care of yourself and don’t reject help for depression - it’s may be a side effect but it doesn’t have to be tolerated.
Jan x
Thanks for this, I was told by the genetics team to return every 4 years in Spain but I moved to Spain after diagnosis and that´s what they do here in case anything new comes up, they told me I have to go back again now to update and see if there is more testing. I have already told them that the last panel was clear 5 years ago but they said they might be clear but that doesn´t mean there is one that has never been found. It´s actually printed on my results that it should not be used as a final result and only for the panel tested. Decisions with doctors should take into consideration. Anyways yes, I have all the results from my 1st hospital with initial results of DCIS and I remember the surgeon here saying 2 areas were fine from mri screening and no estra biopsy needed and the biopsy taken has DCIS, I need to know if those 2 other ones were removed in the same surgery as one of them was 7mm in 2017 and my new IDC is 7mm for peace of mind regarding the Tamoxifen, it´s in the same place as original one. I totally understand that cancer is sneaky. I have had issues with mri before where the mammogram and ultrasounds found swollen lymph nodes to be biopsied but the mri didn´t which they said was strange but I´ve heard there are problems with mri false negatives etc and causing more stress. Anyways parents in laws friend is a lecturer in oncology in California and he is going to look at all my results to check everything to give me peace of mind. I think the oncologist saying “your estrogen is +++++++” as she wrote it and “the Tamoxifen didn´t work or maybe high family pre-disposition caused it” this is what stressed me more. I was fine until she said that. She is head of the breast cancer department in my hospital. The surgeon was more positive and said we got it all, nothing left in mastectomy after surgery and all removed in biopsy, she seemed happy. Thanks again for your advice.