A new primary while taking tamoxifen! Help!!!

Sunflower64

Hi ladies

I was recently dx with a new primary in June! My oncotype score is 27. Tumor board recommends 4 cycles of taxol with no data to back it up due to my intermediate score. My MO said they recommended chemo because of my age (52) and that I grew a new cancer while on tamoxifen. I asked my MO what she would do and she said honestly she doesn't know. She said if I did chemo it would lower my risk 4-6% bringing it down to 12%-14% risk of cancer coming back somewhere else in 10 years. My risk now is 18%. She said it could come back if I do chemo!

Has anyone grew a new primary while taking tamoxifen? Any advice would be so much appreciated! I really need help deciding about chemo!

Thank you in advance!!!

dtad

Just want to say I'm sorry for the recurrence. You are certainly not alone in recurring while taking Tamoxifen but I will bump to someone with more knowledge on that subject. Good luck and keep us posted .....

BarredOwl

Hi Sunflower64:

Can you please clarify your 2016 diagnosis? Your profile is showing Stage IB, which requires a specific degree of lymph node involvement, specifically "pN1mi" (i.e., "Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm") as shown in lines 3-4 of the Chart on page 1 of this summary:

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

If a person is purely node-negative ("N0"), with a "T1"-size tumor ("T1" Tumor ≤ 20 mm in greatest dimension), and M0, then they would be: pT1 N0 M0 or Stage IA.

For some reason, the first option in the profile section is Stage IB, and many members enter it by accident. On the other hand, for those with nodal micrometastasis, there is no way to indicate degrees of nodal involvement, which may also explain the discrepancy (they are neither N0 nor N1, but N1mi is not an option).

BarredOwl

KBeee

Sunflower, First of all, I am sorry you are dealing with this again. I've been in your shoes, and it's tough. There are so few studies on recurrent cancers. Like you, I recurred while on Tamoxifen. One of the decision makers in deciding to do chemo is that I did not want to put all of my eggs into one basket as far as preventing metastasis. Chemo works differently than anti-hormonals. I asked one of my docs point blank if my tumor could be resistant to tamoxifen and he said that perhaps it could. I asked then what if it's resistant to the AIs? I also asked what about the other 10% (because I was 90% ER positive? What about that 10% that do not respond to the AI? He had no answers. I will have to dig very deep to find a copy, but I did some research when I recurred, because like you, I went from PR+ to PR-. The research I found showed that when that happened, it was indicative of a more aggressive cancer.

Hopefully your doc is not just recommending 4 cycles of Taxol. That is not a standard recommended chemo regimen. I strongly suggest a second and third opinion.

I will dig up and find the articles tonight and try to post a link to them. PM me anytime with questions.

KBeee

I edited my above post because in the 18 months since I did the researched, I muddled together 2 studies. Here is a study on hormone discordance. Especially pay attention to the past page about progesterone loss and it's impact (the last page).

http://link.springer.com/article/10.1007/s00428-01...

I am not sure which surgery you had, but this article talks about treatment of local recurrence after mastectomy, and how patients with chemo do much better:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC379727...

Hopefully these help in your decision making. Getting multiple opinions should help as well. Keep us posted. I know these are tough decisions. Recurrence is so much harder emotionally, and there's just not a lot of info out there to guide decisions.

ChiSandy

Ah, but what remains unanswered is what was the OncotypeDX score + node status of the patients at the time the primary tumor (PT) was diagnosed, whether the pattern also holds for patients receiving breast conserving surgery plus radiotherapy, and the degree of PR+ of the PT (e.g., highly vs. weakly PR+). One additional study that came out today on GenomeWeb (BarredOwl probably can weigh in) apparently addresses only those patients receiving neoadjuvant endocrine therapy, not post-surgical adjuvant therapy. The first study mentions that both local recurrences and distant mets losing their PR positivity occurred in patients receiving only chemo, only endocrine and a combination of endocrine & chemotherapies. And it addressed DMS (mets-free survival) but not overall survival. Most importantly, it doesn’t mention (at least not that I could see) new PTs, just local and distant recurrences.

KBeee

ChiSandy, Do you have a link to the article? I'm not following you as to what the study addressed and found.

Sunflower64

Kbee

I did not have a recurrence. This is a new primary

Sunflower64

Kbeee

This is not a recurrence. This is a new primary

KBeee

I should have noticed that by your stats. Have you asked for a second opinion yet? Tough decisions. Hoping you can get clearer answers soon.

Have you had any genetic testing? That may guide treatment recommendations as well

stephincanada

---

This happened to my mom. She was diagnosed with er/pr positive, grade three, stage 3 cancer (6 out of 19 nodes) nine years ago. She was treated with lumpectomy, radiation, chemo and rads. She started on tamoxifen then switched to an aromatase inhibitor. Two years later, she developed a second primary, also er positive, in the contralateral breast. Her second primary was dcis and so she had a lumpectomy and radiation only. Her doctor discouraged her from having a mastectomy. She has been on aromatase inhibitors for 8 years and plans to stay on them until it is no longer possible to do so. So far she is NED.

Fe_Princess

Does the percentage of ER or PR have anything to do with recurrence risk?

Momat143

I to was just diagnosed with a second primary while on Tamoxifen...I'll be having a second mastectomy as soon as it can be scheduled. Does anyone know f Chemo will be recommended

ShetlandPony

There is the idea that PR negative bc could be more resistant to tamoxifen but will respond well to an aromatase inhibitor.

Momat, your doctors should have the biopsy from this second primary analyzed for ER, PR, Her2. Later, if it is hormone receptor positive, Her2 negative, and 0-3 nodes positive, they can order an Oncotype test to help decide on chemo. This information, along with other factors such as nodal status, age, etc., will help them make a treatment plan just for your unique situation. If you can, go to a cancer center that has a tumor board where all the specialists -- surgeon, medical oncologist, radiation oncologist, pathologist, maybe a social worker -- will discuss your plan together before you start any treatment, including surgery. A NCCN cancer center, or at least a university hospital, would be best.

KBeee

Momat153, Sorry you are facing this. I had a similar situation. Once final pathology is in, they'll make a chemo recommendation. It is hard waiting and not knowing