2nd breast cancer and endo cancer

Mom-mom

I'm almost 2 weeks out from mastectomy (on May 26) for a recurrence after 9 years on tamoxifen. After biopsy results were in on the recurrence, I had some odd spotting and went to see my GYN who decided to do an endometrial biopsy because the endo lining was very thick, Bam! Endometrial cancer, too. Hyster scheduled for mid July. What a summer it is going to be!

I'm stunned. Three cancers before age 53? Really? What are the odds? I'm BRCA negative and the genetic testing came back negative, although we have breast cancer in our family history.

Meeting with ONC next week. Any suggestions on questions to ask or courses of action?

Moderators

Wow, not what we like to read. We are sorry for what you are going through, and indeed, no way to spend a summer!

Did the genetic testing indicate any other possible genetic abnormalities? What are your doctors recommending/suggesting?

We're all here for you!

ParisParis

Hi Mom-mom, I am sorry to hear that you have to go through this! This is really a double whammy. Although it is still quite rare, but uterine cancer after nine years on Tamoxifen is undortuNtely not unheard of, the risk is higher than the double risk compared to the general population, as have read on these boards here, but can be up to eight times as high. But of course, when you have developed one of these nasty diseases, statistics do not count anymore! Since your hysterectomy is scheduled for mid-July, I guess you do not have a sarcoma, which is a more aggressive cancer. Usually endometrial cancers caused by Tamoxifen have a much better prognosis. I would definitely want to hear more! I wish you all the best, also for recovery from surgery. Will you have chemo? I guess you had lumpectomy and radiation first time round. I suppose they will switch you to an AI now.
All the best!

KBeee

I am so sorry you are dealing with another cancer. Such a sucker punch in the gut. When they did your genetic testing, did they just test for BRCA or did they do the full panel

Mom-mom

Thanks Paris and KBeee! I can't quite figure out how to make my stats appear here, but I did input them.

I had BRCA testing in 2008, but because of all the advances in genetics, I qualified for a retest after the recurrence and ran the full panel in April 2017. . Nada on the genetics -- nothing to explain this. I had Oncotype Score of 18 back in 2008, but elected not to do chemo at that point (primarily because of the initial reports about low Oncotype scores and the my particular score was almost in the Low group (where the risks of chemo outweighing the benefits) and also because I had 20-month-old twins at that point). I had radiation and then I tolerated the tamoxifen well and was on it, faithfully, for 9 years. I'm right in the midst of menopause (skipping months at a time -- almost there!) and was going to switch to an AI when i reached medical menopause.

I called my BS office about the path report yesterday, as I have not seen it yet. The tumor was small (under 1 cm) and, from the biopsy report, it was ER+, PR+ and HER2- and no nodes (same as last time). I was expecting the new tumor would be sent for Oncotyping again (both my BS and MO had said something about that), but the nurse at the BS office said she was told not to send it. (?) She kept saying the tumor was tiny and that the Lab wouldn't test it twice because it had already been tested. (?) I started to get irritated with her and then she said this stuff was above her pay grade and I should call my onc.

From the biopsy, the endo cancer is early stage and treatable with a hysterectomy, but I've also got a large cyst on my ovary which is worrisome, too, so the hyster path results will tell that story.

I was thinking chemo was in the cards for sure due to the recurrence locally and also because of the endo cancer, but maybe not? Or maybe it depends on what the hysterectomy path results show? I have so many questions.... I meet with the MO next week about treatment, but would like to know more about options, including AIs (no more Tamox for me, duh!) and chemo. The studies on long term distant recurrences from early stage breast cancers also worry me, given my local recurrence while on Tamox.

This beast Cancer is so sneaky!!

misslil

Sorry to read what you've been going through. I had something similar with a DCIS diagnosis and then eight years later (after mastectomy, radiation, and 5 yrs of tamoxifen) a new early stage incidence on the same side and general area. They treated it as a second tumor vs. recurrence but don't think they could really tell.

In between, I had to have a full hysterectomy for an advanced endometrial pre-cancer. Was it due to tamoxifen, do I have some susceptibility to cancer and if so why? No clues really. I did genetic testing after the DCIS and nothing interesting showed up. It was suggested to look into it again since the science is more advanced but I haven't followed that up yet.

I'm also trying to figure out what is appropriate for long-term follow-up. So far I've been recommended just for regular dr appt follow-ups and annual mammograms. Can't help feeling that I want to see an MRI or some other scan alternated so things are checked at least twice a year and if I ever find myself with yet another situation here, it can be caught as early as possible. Prospects of a distant/advanced recurrence seem very scary.