Recurrence after 20 years

ozlemu

Hi everyone

I am posting this on behalf of my mother who was treated for bc in 1996 and was disease free for 20 years. First time around doctors performed mastectomy on her left breast. no rads, no chemo. she was included in clinical trials for zoladex which did not work out for her so her ovaries were removed too. after that there was no sign on cancer for 20 years- she was very healthy during all that time!

Last year she found a bump right above the mastectomy scar. the bump was visible on the skin and it felt very dense and did not hurt. there was no rash or scar, it was just a red bump.

doctors immediately ordered a pet scan and the results showed the tumor as cancerous but there was no sign of cancer anywherr else. the tumor was removed. the pathology shows er+,pr+ , her- grade 3 invasive ductal carsinoma. no lymph nodes involved but there is lymphovascular invasion. ki67 shows 20% and there ls minimal necrosis.

her doctor from 20 years ago said she would be okay with 25 doses of radiology and then hormone therapy but he would need to consult with the panel of doctors at the hospital. after the panel another doctor said she would need 4 cycles (1 every 3 weeks) of chemo. this was devastating news for us because she is 65 years old and doesnt want to face the side effects of chemo. the doctor also said there is a test that can only be done in the US that would cost about 5000 dollars that can show us if chemo is necessary . we live in Istanbul, turkey and that test is not available here so it would take a lot of money and time for the test to be performed. she also said even if the test shows the chemo necessity to be 2 out of 3 ( she said 1 is very unlikely for grade 3 cancer) they would still suggest chemo.

i could not catch the name of the test as i was not with my mom and dadat the appointment but from my research i understand it can be the oncotype dx test. did anyone get a low oncotype even with a grade 3 recurrent tumor? do you think it is too risky to skip chemo and go for rads + hormones as there is no lymph node involvement and PET came back clear for other parts of the body?

i am sorry if i made any english mistakes as it is a second language for me. thanks a lot in advance

ozlem

dtad

Hi there. So sorry about your mom. Yes it's the oncotype test.There is also a test called the mammoprint. It will show how effective chemo would be and will also give her a recurrence rate. Things are a little different here in the US but how about getting a second opinion? Good luck to you guys.

Moderators

Hi ozlemu and welcome to Breastcancer.org! We're sorry to hear about your mom's recent diagnosis, but you've come to the best place for support and answers!

As dtad mentioned, the Oncotype DX test is what you're referencing. You can read more about this test on the main Breastcancer.org site's page on the Oncotype DX Test. At the bottom of that page, you can also learn about other genomic tests used to analyze breast tumors, including the Mammaprint Test that dtad mentioned.

We hope this helps and wish you and your mom the best! Please check back in and let her know how she's doing and what she's decided.

--The Mods

agapornis

Hi Ozlem, I'm so sorry for what your mother and you are going through. I have no answers to your questions, but I want to wish best treatment for your mom. Gecmis olsun.

Meow13

well if her tumor was strongly ER and PR positive I would take the AI treatment. What is her HER2 status?

KBeee

Sorry your mother is dealing with this. My mom had BC in 1992, and just had it again last fall. She is doing well and did not do chemo this time. I have had it twice too. She is lucky to have someone as caring as you helping her.

ozlemu

thank you all so much for your nice comments. it is a real shocker having to deal with something we thought we were done with 20 years ago..

we have already scheduled with another medical oncologist to get a second opinion on monday. hopefully they will say radiation and AI is enough. her tumor is er+ 80% and pr +60% and it is her2 negative. given that ki67 is also on the lower side (20%) and pet came back clear i would think no chemo neded but the docs say she could have some cancer cells somewhere in her body that cannot be detected at this point. even if that is the case, wouldnt the hormone therapy prevent these cells from developing into a tumor ?

Meow13

yes the AI drugs will kill them.

ozlemu

Hi All,

So we got the second opinion (from a very well known and trusted MO in Turkey) and it is the same... She said the recurrence is local but given that it is grade III and the type of tumor is micropappillary (not sure if this is the correct translation..) and there is lymphovascular invasion it is best to go for chemo. She also said oncotype dx test would give us a better view into whether the chemo is absolutely necessary and that she can prescribe Femera for the waiting period if we decide to go for the test. But we should consider if it is worth the cost and waiting time if in the end we will go for chemo anyway...

Now my mom is tending towards getting the chemo without the oncotype test.. does anyone have any experience with getting low onco score despite grade III micropapillary recurrence? do you think it is worth getting the test ? My mom is 65 yo and we are scared of the side effects of chemo but we are now also scared that we would increase the risk if we wait any longer before we start the treatment.

Thanks a lot

Ozlem

bevin

hi I am one with grade 3 with a low onco type of 11

I am young and one doctor said chemo in spite of score, one onco sais I could skip and another said should probably have it. I went without and am at 5 years and doing well.

Good luck. I found it helpful to have three opinions.

Meow13

bevin, did you do hormone therapy? I only could stand 4 years on it.

bevin

I did. I just finished it too.. Yippee!!