Reflecting on my test results and treatment

exercise_guru

I am hoping that you wise ladies can help me understand something about my treatment and diagnosis. I posted here because it is about trying to understand my hormone therapy treatment choices.

My BC was first found on my left side and was ER/PR- and HER2positive even though it was small everyone agreed I needed Chemo but I could not have Perjeta but was scheduled for TCH Chemo. To further complicate things in my right breast there were two large pockets of DCI2. I also tested positive for PALB2. I felt I had a good treatment team I ended up with a BMX/OOPHRECTOMY

Well during surgery they found the two small IDC tumors in the right breast that were ER/PR positive like 90percent grade3 but Her2-

Hence I had two different types of cancer one in each breast. Because Chemo was a get go for the left side there was no oncotype or Ki67 for the right side.

Now I am finding that Hormone therapy is probably going to be unsustainable. I have a few more I can try and I am a tough girl. I find myself wishing I could know how useful AI Therapy is in my case. Is it likely I would have been put on Hormone Therapy based on the Right breast alone? It sounds to me like there is more to the story. Does a grade 3 always present with a high oncotype? Does Oncotype relate at all to HTherapy?

feel like I need to answer this question for my future quality of life. This OOphrectomy kicked my butt. I am majorly estrogen deprived and the AI is absolutely wrecking the use of my hands. I am still going to stick with AI for atleast a few more months hoping things get better. Its just that the right breast with the ER/PR positive was such an afterthougtht this is a lot of problem to go through if its not improving my chances significantly.

It would really help me feel better about this Hormone Therapy if I felt like it was doing any good. my situation was so complicated I wish now I had pushed for more test on the right side. Would there be any tests that would have specifically told me whether hormone therapy was useful in my case ?

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ShetlandPony

Hi, exercise guru. I will try to address your questions succinctly. (I have no medical training and of course you'll want to discuss with your doctor, but maybe my answers can help clarify the issues to discuss.)

Regarding the right breast IDC: The test for ER and PR was the appropriate test. I think that yes, you would have been put on endocrine therapy based on the right breast alone. The NCCN guidelines for hormone receptor-positive tumors say "consider" adjuvant endocrine therapy if the tumor is .5 cm or smaller and node-negative. For anything bigger than .5 cm and/or positive node, endocrine therapy is recommended.

Oncotype is used to decide if chemo is warranted for hormone receptor-positive breast cancer. The Oncotype score assumes the patient will receive endocrine therapy, whether or not they also receive chemo.

So maybe you can feel more settled knowing that the Oncotype test would not have changed your treatment recommendations, and that endocrine therapy is appropriate for you. Of course, that leaves you still trying to deal with side effects. With the instant menopause, you got a double-whammy. Perhaps your body will adjust. I know for me, I feel less achy now than I did at first on letrozole/Femara (following permanent chemopause). And you are right, there are other endocrine therapies to try. Work with your onc to find the best one for you, and to manage the side effects. An aromatase inhibitor is a little more aggressive than tamoxifen, and given your age and other stats that seems appropriate. But tamoxifen may also be a good option for you. Personally, I found tamoxifen to have milder side effects.

For what it's worth, I think your treatment plan is a good one and that you are right to try to do the endocrine therapy. Sending wishes that you will feel better soon.

farmerlucy

Hi exercise guru - I had an ooph a year ago and moved from Tamoxifen to Femara. At 55 the ooph/AI kicked my butt, so I can only imagine how it affected you at a much younger age. I stuck with Femara for seven months then went back to Tamoxifen. The joint stuff and the claw hand were just too much. At my next appt my onc convinced me to try Arimidex. It may be slightly better, I don't have the same hand and feet numbness. I think using a hand splint at night has helped tremendously.

I agree with Shetland Pony that Tamoxifen was an easier drug. My main SE with it wereuterine issues

Not sure where I'm going with this. I'm really going to try to make the AI work because I want to get the most "bang for my buck" so to speak since the AI is more effective. I tried to pin my ONC down re: how effective was HT for me based on my low oncotype score. She has said along that making decisions based on that one number was risky.

I wonder if it would be helpful for you to take a break for a month to see if you could isolate ooph SE from AI SE.

I did that with tamoxifen when I first started. Actually I took a break for a year. Not taking any HT therapy was a heavier weight on my shoulders than just taking the drug. When I started T The second time I knew clearly what was a SE and what wasn't.

Take care. I hear you. It sucks.