Tubular breast Cancer and Tamoxifen

tubulartina

Hi - I have just joined from the Uk as I am looking for some help.

I was diagnosed in March 2013 with a pure tubular 7 mm tumour. I had a WLE and clear sentinel node biopsy and 15 sessions of rads. At my initial meeting with my oncologist we discussed tamoxifen and I decided to take it - my husband and I remember him saying he thought that was sensible although he did tell me that with my diagnosis the additional benefit to me was very small - 1 % . Roll on 2 years and I went to see same oncologist on Friday. I have been having some issues with my womb and wanted to discuss if I could change to an AI . He really surprised me by saying he would not put me on an AI as he did not want to make me feel like an old woman and he was happy for me to stop taking the tamoxifen - he even seemed to be saying he thought I should stop whether or not these latest round of gynae tests show I do have another problem with the womb. He said my risk of recurrence was small as was my risk of a new primary and if it did happen they would deal with it !!!!!! I have been left a bit baffled. He showed me the nhs predict tool so I can see the figures and where the 1 % comes from and I have found out from looking at this site that your guidelines for pure tubular are - under 1 cm - no hormone therapy - but here in the Uk we don't have that guideline and everything you read makes you think you would be daft not to take tamoxifen if you have an ER + bc ( but I know in saying those articles are talking about bc generally and not tubular bc ) . I am not going to lightly dismiss his view - he is the oncologist after all but I am a bit anxious about it. I perhaps do not agree with him being quite so matter of fact about saying we would deal with it if it came back - further surgery and rads at best is hardly the same as say a course of antibiotics to clear up a returning infection !! For the moment I am continuing to take it whilst I think and look into it. I would be happy to stop if I thought medically it was the right thing to do and that continuing was over treatment . Can anyone help ? Thank you for reading this.

labelle

I too was diagnosed w tubular BC and while my OC recommended Tamoxifen she also seemed okay w me refusing it, despite a positive node (which surprised everyone)- I did have 30 rounds of radiation also. Neither my OC nor the BS who did my surgery seemed real keen on AI for me-because I'm perimenopausal I'd need ovarian suppression as well. The BS in particular seemed quite opposed-told me I did not want to become an old woman before my time (I'm 51) and that osteoporosis is so not something I want.

Because my cancer was ER+ the OC recommended Tamoxifen for me-this is going to recommended for anyone w ER+ BC-it is the standard of care today. I went back and forth about whether or not to take it (it isn't as safe as vitamin c after all) and discussed my decision to decline w my OC last Turesday. She told me while there is no guarantee my surgery got all the cancer (which is why she recommended Tamox) with my stats there is "a very good chance" it did and taking Tamoxifen would just be icing on the cake. I told her of reading on here that some women are basically told by their OCs that they'd be crazy not to take Tamoxifen or doomed to a reccurance if they didn't-she told me she thought my decision was reasonable under the circumstances and with my pathology and she doesn't believe I'm doomed if I refuse Tamoxifen although she did remind me there is no cure for metastatic BC. That's good enough for me, I feel great and will continue to exercise and follow a healthy diet and work on moving on with life with my hormones intact.

pineapplemsw

I was diagnosed with tubular in March 2015. I had surgery April 2015. Tumor was 3 mm. 1cm margins clear. Sentinel nodes clear. There were not enough cancer cells (or none) to get an OncoType. I am considering not taking tamoxifen and also not taking radiation therapy. From what I can find my risks are very very low - no risk factors at all.

I found a link to a calculator that calculates risk based on tumor type, size, risks, etc. According to it, any treatment does not make a difference in recurrence.

I am glad to find others not taking tamoxifen and finding others with such a rare type of breast cancer.

Moderators

Dear pineapplemsw, Welcome to the BCO community. We are glad that you reached out and happy to see a few of you reaching out to one another in this forum. Here is some information on our own site about Tubular Breast Cancer. We hope that you will all stay connected and keep posting. The Mods

NATSGSG

tubulartina:

Hope this message finds you well. Just stopping by your thread to share with you a link that contains scientific articles of Tubular breast Cancer that I hope will be informative and of use to you. You may have to sift through the titles and find the ones of use to you.

http://www.ncbi.nlm.nih.gov/pmc/?term=Tubular+carcinomas+of+the+breast

Also, please consider going to this site, the Society for Immunotherapy for Cancer (SITU) to see if they have anything on this disease using immunotherapy (current hot topic in cancer treatment) to treat it. Consider asking them to put you in their mailing list for any latest development.

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

PPS. This VIDEO link tells you what the current hot topic in cancer treatment, Immunotherapy is. Fascinating to watch.

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

 

Brightsocks

I also have pure tubular breast cancer presently doing 16 rounds of radiation. After this stage I will not be talking any hormones as fully discussed with my Doctor for the side effect and the benefits are not in my favour.