Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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@kammcn

I have always been an active, healthy person. On vacation last summer, I noticed a lump growing quickly. On my 63 birthday I was diagnosed with IDC, with skin invasion and lymph node involvement. I was immediately put on A1 (anastrozole). I was on it six months with the hopes of shrinking my 98% estrogen/96% progesterone/HERT2 negative diagnosis. Thankfully, this shrank my tumor by 1/3 and reduced the size of my lymph nodes. In May I had a partial lumpectomy (3mm tumor) and lymph node dissection (5/10 positive). I am in the middle of 28 radiation treatments with 5 boosters.

I hate AI therapy. I have gone from a person that didn’t take any medicine to a person that is taking multiple medicines. I stopped taking my anastrozole for two weeks before my surgery and went back on after surgery. I have hot flashes, feel joint pain, get tired more easily, and other side effects. My oncologist has guided me through dealing with them.

I DID see that pre-surgery AI therapy made a big difference in my surgery outcome. With 1/3 shrinkage pre-surgery, my surgery was less invasive than originally expected. I have also focused on eating a plant based diet and have lost twenty pounds. My oncologist has stressed the importance of doing weigh bearing exercises, walking, and being active. She has told me I would probably be taking AI for 10+ years. I can’t say I am happily embracing AI therapy, but for me, I feel like I have the choice of AI therapy or cancer. I have gone from stage 3C breast cancer to currently being cancer free. I am going to fight to keep that diagnosis with every tool possible.

Three months into AI therapy, I was wallowing in depression when I realized that I have grandchildren age 2 and 8 and want to make memories with them and my children for many more years. I have no guarantee that will be possible, but I decided I am personally doing everything within my power to make it possible. I am eating healthier than ever, being as active each day as I can be, and making more memories. I am taking anastrozole and actively dealing with any side effect that comes along. It’s not perfect; however, I still feel in control, and it is a good choice for me.

Everyone has a different journey and factors influencing each aspect. The survivors with side effects usually are the most verbal and influence others that are reading these posts for advice and reassurance. I have taken anastrozole for almost a year and have had side effects. BUT, I dealing with whatever comes my way because I have already seen the positive side of AI therapy and would rather take them than have a higher chance of going through cancer treatment again.

When I was first diagnosed about a year ago, I would read others comments and get very anxious. From what I read, I was very concerned about AI therapy and anastrozole in particular. It does have side effects just like any other medicine that is available. However, it has made a big difference through my cancer journey so far. For others making choices, make the best choice for YOU and not based on other’s experience.

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I was diagnosed on my 50th birthday with stage 1, no nodes but lvi… so chem and rad for me…I took tomixifen for 5 years… then AI.., it’s almost 10 years on meds… I have had hot flashes… with tamoxifen…but I was also go through Menopause. The AI has caused a little stiffness, nothing awful…def not anything that stops mean from living my very active life! I will be celebrating my 60th in August!….honestly nervous about going off of it!!!
Everyone is different… just wanted to give you a positive here!!!
My feeling was I rather live with pain… then not live! But I have no real pain! Honestly…My cancer was stage 1… grade 3, that’s aggressive and I had lvi! I think these drugs kept me alive!!
♥️

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@lisajoann I also had LVI but no chemo or radiation. Was your Oncotype Dx score high?

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That was never mentioned to me sadly, I had grade 3 and my ki67 was high so they just said we highly suggest chemo and radiation. I did tamoxifen and now SI. At this point it’s 10 years in and I wish I had it done. I worry every day if it’s coming back… horrible way to live. My concern are my cancer markers… they fluctuate . Scares me.

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@windyshores

@slfisher1976 I didn't remember what that classification meant.

In stage 1A breast cancer, the tumor measures up to 2 centimeters, but there’s no lymph node involvement. With stage 1B breast cancer, the tumor is less than 2 centimeters, but there are small clusters of cancer cells in nearby lymph nodes.
and
Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can’t be detected or is smaller than 20 mm).

The NX means the lymph nodes cannot be evaluated.

Not sure what it means if the nodes cannot be evaluated but you are 1b!

No offense, but it seems a lot of oncologists are cheerful and reassuring.....

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"No offense, but it seems a lot of oncologists are cheerful and reassuring….."

Lol, come meet mine... She looks at me like she is at my wake.

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@eku

"No offense, but it seems a lot of oncologists are cheerful and reassuring….."

Lol, come meet mine... She looks at me like she is at my wake.

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I had three opinions. There were a lot of discrepancies in my testing and things were not looking great in pathology results. I liked my third doc the best, because she looked serious, said she didn't blame me for being "troubled," and agreed to further testing to settle some questions. The other two were cheerful and kept telling me I would be fine. I understand both approaches, and we all react differently. This was an intensely frustrating search for a doc to take my questions seriously and I did not mean to insert it in a discussion with a very different focus.

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@lisajoann

That was never mentioned to me sadly, I had grade 3 and my ki67 was high so they just said we highly suggest chemo and radiation. I did tamoxifen and now SI. At this point it’s 10 years in and I wish I had it done. I worry every day if it’s coming back… horrible way to live. My concern are my cancer markers… they fluctuate . Scares me.

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@lisajoann I had grade 3 and LVI and ki67% just over the line for high, but a low Oncotype. The Oncotype would still be possible with the specimens from your surgery but would serve no purpose since you have already had chemo, and already made it 10 years. I was told that 30% of grade 3's have low Oncotypes. It would be no different with Oncotype at this point.

I also worry all the time about it coming back but as I said my docs don't do tumor markers. I had a Breast Cancer Index done and a Prosigna Assay, at the 5 year point, using specimens from post-surgery pathology. The Breast Cancer Index showed no benefit from AI in years 5-10 so my only treatment has been mastectomy and 5 years AI. You have done everything possible and I wish you good luck!

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It's true. If you're prescribed the ultimate treatment possible anyway, why quibble over numbers at that point?

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@windyshores

@lisajoann I also had LVI but no chemo or radiation. Was your Oncotype Dx score high?

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what is considered a high Oncotype score?

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@tygerrag2

what is considered a high Oncotype score?

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18-30 is intermediate, 31 and over is high

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@windyshores

@lisajoann I had grade 3 and LVI and ki67% just over the line for high, but a low Oncotype. The Oncotype would still be possible with the specimens from your surgery but would serve no purpose since you have already had chemo, and already made it 10 years. I was told that 30% of grade 3's have low Oncotypes. It would be no different with Oncotype at this point.

I also worry all the time about it coming back but as I said my docs don't do tumor markers. I had a Breast Cancer Index done and a Prosigna Assay, at the 5 year point, using specimens from post-surgery pathology. The Breast Cancer Index showed no benefit from AI in years 5-10 so my only treatment has been mastectomy and 5 years AI. You have done everything possible and I wish you good luck!

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If you don’t me asking what stage were you, and did you have a lumpectomy or mastectomy ?
I was stage 1, no nodes, grade 3, lvi… I had lumpectomy, chemo and radiation… and now AI.
Seems our treatments are very different. Just curious.
Thank you

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