Ovarian Suppression Decisions

Badluckbdaygirl

Hi everyone!

I know there are so many different threads and I’m not sure where I should post this. I just had my exchange surgery on Friday and just started my Tamoxifen a week ago (building up). My Oncotype was a 12, so just Tamoxifen for me.

My question is that given my age, 46, and at my first MO appt. she said she tested my estradiol levels. At my follow up, she said they were very high indicating definitely premenopausal (which i knew). I had originally asked about ovarian suppression and she mentioned exercise, etc. and that she might support Lupron?, but at my follow up she said was not keen on slamming my body into menopause and let’s start with Tamoxifen first.

I’m strongly considering suppression regardless since that is what is fueling my cancer. Can anyone given advice on Lupron vs. ovary removal and wait times? I waited a few months to start my Tamoxifen. Is it safe to wait another month or two to get my body adjusted to this and reapproach my MO?

Thank you ladies!

Valentine214

I started Lupron shots with an AI as soon as chemo and my surgery was completed. I was also premenopausal with ER+ stage 1A, but HER2+. My MO stated that this course of treatment had better outcomes over Tamoxifen. Since I am HER2+ the stats maybe be different for you, but I would definitely ask your MO about the study findings.

Hope this helps. 😺

Also, your ovaries provide health benefits so you really don't want to remove them if it is not necessary according to my MO.

Salamandra

I wonder whether you could take tamoxifen while waiting for the ovarian suppression to fully kick in?

That said, I think you should consider a second opinion.

The reasoning for recommending some premenopausal women tamoxifen only, and some OS+AI, are pretty scientifically validated. OS+AI for premenopausal women comes with its own health risks that can impact overall survival (and of course quality of life). In certain cases, the benefit is clearly worth the risk, and that's when doctors (should) recommend it. If more than one doctor that you respect is not recommending it, it seems possible that the benefit for you personally of OS+AI might be more psychological than medical.

It could still be worth doing, but in your shoes I'd want to be confident of the statistical medical risk/benefit for me and my cancer in particular.

seastarz

Just speaking to my own personal experience, I was 39 and premenopausal at diagnosis. I was given the choice of OS+AI or Tamoxifen, but was encouraged to do the OS+AI because it was the more aggressive approach. They told me Tamoxifen was also a very good choice for me, but slightly less aggressive - so I chose the OS+AI, knowing I could always switch if I needed to. I started Lupron soon after my surgery, and took it for 3 months to make sure it pushed me into menopause. (It did.) Then I started Anastrozole and continue to get monthly Lupron injections. It's been about 8 months since I started OS+AI, and side effects have been minimal for me so far, for what it's worth. Good luck to you, whatever you choose!

Badluckbdaygirl

Thank you everyone,

Can you do Lupron + Tamoxifen? The only reason I ask is that I haven’t starting having any major SE’s on Tamoxifen.

I have the feeling my MO was poo poo’ing my cancer as being small and not aggressive therefore removing my ovaries might cause more harm than good. She did says she had someone like me do it and she was very supportive. I feel if my cancer had big bigger or more aggressive than she would be more open. What I don’t understand is I see young women with smaller tumors, lower KI’s and lower Oncotypes immediately get this done?

I just know I have very high estrogen levels and that’s what fueled my cancer. I did get a BMX because of extremely dense breasts and my BS said it would reduce my risk more than a lumpectomy so I did that.

I think I’m definitely going to do something, I’m just leaning towards Lupron because I do agree that the ovaries do have some health benefits. I just wonder if I have to do it with Al or Tamoxifen? Or would I switch anyway because Tamoxifen wouldn’t be effective anymore.

Thank you for listening

DottyParker

my Onco wants to do tamoxifen and Lupron injection.

Haven’t started yet because recovering from surgery
My onco doesn’t move on things either, he was dismissive when a pt scan showed a lit up lymph node, he said wait and see because my cancer isn’t “aggressive “ well I just had 13 lymph nodes taken lower axilla and 3 were malignant!

Salamandra

DottyParker, that sucks! Doctors should wait and get test results before they make definitive statements!

Tamoxifen is still effective even for women in natural menopause. But it's a different side effects profile and somewhat riskier for post-menopausal women and probably somewhat less effective than tamoxifen. But still for post menopausal women with bad bone loss issues, tamoxifen may be recommended over AI.

I don't think lupron alone is seen as an effective strategy. Better than nothing at all, maybe.

I think you can do lupron and tamoxifen, but I don't think most doctors would recommend as a long term first choice unless there was something contraindicating AIs. But who knows - it's definitely worth asking your doctor about - and at least you know that if the AIs don't work for you, you can tolerate tamoxifen. That's good news!

farmerlucy

I could not tolerate Tamoxifen initially. It took me a full year to start (I don't recommend). When I did I just had garden variety symptoms. After about three years when I was heading to my mid fifties I was having incredibly heavy bleeding so my gyn did a ooph that put me into menopause so I could move to an AI. Holy crap the AI was tough for me, I literally begged my onc to let me go back to tamoxifen. I did. But I stopped it at the five year mark. Then, since Tamoxifen is the gift that keeps on giving I had post meno bleeding. After countless gyn appoints, biopsies, TVU, I ask for a hysterectomy. Wow. If there is such a thing as a great surgery, that was it for me. I should have done it years ago. As far as the ooph I would not do it again. This mama needs her estrogen. That's why I liked the tamoxifen so much because it can increase your estrogen while blocking it from any rogue cells. In hindsight tamoxifen with a hysterectomy, but no ooph would have been the best choice for me.

Badluckbdaygirl

Ugh, Dotty, sorry for the positive nodes, but thank you for your opinion. I do think my MO would recommend Lupron vs. the ooph if i demand something be done.

Farmerlucy, that is interesting about a hysterectomy. I hadn’t even thought of that.

Salamandra, my mother was 67 when diagnosed and did the entire time on Tamoxifen because of osteoporosis.

Thanks everyone! How quickly do I need to decide. It seems every step in this process I’m worrying about something. Now that both my surgeries are over, I’m worried about circulating estrogen. Even though I still have my wine

Willcare

Salamandra Would it be possible for you to post any links that you have on why sometimes only tamoxifen is recommended vs AI & suppression for others? This is the decision I am currently agonizing over. I can't seem to be able to find anything definitive for my specific diagnosis.

Salamandra

Hi Willcare,

Here is a summary from an article from 2018 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58900...). I'm no expert but I feel like this is basically my understanding, and it comes down to low versus high risk and cost/benefit analysis of side effects.

"Taken together, the results from these two trials have suggested that the addition of OFS [ovarian function suppression] to tamoxifen does not provide any benefit in women at low clinical risk of recurrence for whom tamoxifen alone should be still considered standard of care.9–11 On the contrary, the addition of OFS to tamoxifen showed to significantly improve the outcomes of women considered at higher clinical risk of recurrence. At a median follow-up of 8 years, the addition of OFS to tamoxifen in patients exposed to chemotherapy in the SOFT was associated with a 5.3% absolute benefit in disease-free survival (DFS; HR 0.76, 95% CI 0.60 to 0.97) and a 4.3% absolute benefit in overall survival (OS; HR 0.59, 95% CI 0.42 to 0.84).8 The benefit of adding OFS was even greater in patients younger than 35 years of age at the time of diagnosis.12 Importantly, when discussing with patients the combination of tamoxifen plus OFS, women should be made aware of the worse endocrine symptoms and sexual functioning (ie, hot flushes, loss of sexual interest, vaginal dryness and sleep disturbance) experienced with this combination particularly during the first 2 years of therapy and in those with no prior exposure to chemotherapy.13

While the role of OFS in premenopausal patients with higher clinical risk of recurrence (ie, those who are normally candidates also to (neo)adjuvant chemotherapy) is now well established and recommended by all major guidelines,9–11 the best partner (tamoxifen or an AI) to be combined with OFS remains highly debated. In fact, the combination of an AI plus OFS is now considered another available treatment option for these patients.9–11 However, the two large studies that investigated this strategy (the Austrian Breast and Colorectal Cancer Study Group 12 (ABCSG-12) trial14 and the joint analysis of the SOFT and Tamoxifen and Exemestane Trial (TEXT)15 16) showed conflicting results."

This Breastcancer.org article covers similar ground.

kathabus

Definitely look at the SOFT trial. That will help you understand Tamoxifen vs OS + AI.

I am one of those patients who is high risk because of the positive node and premenopausal. However, with a low Oncotype score...it gets interesting. The middle ground is no chemo...buuuut.....OS + AI ultimately. Why not just Tamoxifen? Data shows better outcome with high risk patients with OS + AI.

Patients in my situation benefit from chemo....but the thinking is starting to lean toward...the benefit comes from the menopause chemo puts you in.

So my “chemo” will be OS/oopherectomy + AI. Better outcome than just Tamoxifen according to SOFT because I’m in that high risk category.

Hope that helps!

Jinx27

Just came to chime in, Im high risk as well. Diagnosed at 27 and I had no choice but AI+Ovarian suppression. After a double mx and 4 rounds of chemo I was "bridged" with tamoxifen for 3 months first and then jumped into monthly Lupron injections and taking Arimidex daily.

Like many have stated here, the SOFT TRIAL is what my oncologists used to make this decision and they used it as a tool to help me understand why its the best course of action. My chances of recurrence are lower due to being placed into menopause from Lupron.

New England Journal of Medicine SOFT TRIAL

https://www.nejm.org/doi/pdf/10.1056/NEJMoa1412379

ASCO 8 Year Update

https://www.ascopost.com/issues/july-25-2018/8-year-update-of-soft-and-text-trials/

To be quite honest with you, I know two young ladies with a similar diagnosis to mine who weren't even offered the OS+ AI. I dont know if their Dr's know about the SOFT TRIAL or not but they both used Tamoxifen only. They live in Canada and were diagnosed there.

Both young women wound up with distant recurrences within 5 years of their initial diagnosis.

I think the OS+AI gives us a fighting chance to lower our risk.

Salamandra

Hey Jinx27,

That is such hard news about those other young women. It is frustrating how cavalierly it can feel like docs treat our bodies. Some seem to want to throw maximum interventions at the slightest indication without any concern for impact on quality of life, and others seem to want to preserve youthful femininity at all costs.

I'm so glad that you have access to this treatment and hope that you will stay recurrence-free!