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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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

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Profile picture for kammcn @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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Profile picture for windyshores @windyshores

But NX means "hard to interpret lymph nodes." Confusing.

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I agree. It doesn't make sense. I had a small tumor (7mm including clean margins) and clean sentinel lymph node biopsy. Thus a Stage 1A. [And thank heavens it was caught during a routine, overdue mammo and ultra.]

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Profile picture for callalloo @callalloo

Here's how Sloan Kettering and two other sites define Stage 1B. M.D. Anderson uses the same standard. As does my oncologist at Cleveland Clinic. The definition is the same across the industry.

Sloan-Kettering:
Stage I describes a very early stage of invasive cancer. At this point, tumor cells have spread to normal surrounding breast tissue but are still contained in a small area. Stage I is divided into two subcategories:

In stage IA, a tumor measures up to 20 millimeters (about the size of a grape), and there’s no cancer in the lymph nodes.

Stage IB can be described as either:
a small tumor in the breast that is less than 20 millimeters plus small clusters of cancer cells in the lymph nodes; or
no tumor in the breast plus small clusters of cancer cells in the lymph nodes.
https://www.mskcc.org/cancercare/types/breast/diagnosis/stages-breast
Cancer Center:
Stage 1A: The tumor is very small and has not spread to lymph nodes.

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).
http://www.cancercenter.com

BreastCancer.org:
In general, stage IA describes invasive breast cancer in which: the tumor measures up to 2 centimeters (cm) and the cancer has not spread outside the breast; no lymph nodes are involved

In general, stage IB describes invasive breast cancer in which: there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes

or there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
http://www.breastcancer.org

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But NX means "hard to interpret lymph nodes." Confusing.

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Here's how Sloan Kettering and two other sites define Stage 1B. M.D. Anderson uses the same standard. As does my oncologist at Cleveland Clinic. The definition is the same across the industry.

Sloan-Kettering:
Stage I describes a very early stage of invasive cancer. At this point, tumor cells have spread to normal surrounding breast tissue but are still contained in a small area. Stage I is divided into two subcategories:

In stage IA, a tumor measures up to 20 millimeters (about the size of a grape), and there’s no cancer in the lymph nodes.

Stage IB can be described as either:
a small tumor in the breast that is less than 20 millimeters plus small clusters of cancer cells in the lymph nodes; or
no tumor in the breast plus small clusters of cancer cells in the lymph nodes.
https://www.mskcc.org/cancercare/types/breast/diagnosis/stages-breast
Cancer Center:
Stage 1A: The tumor is very small and has not spread to lymph nodes.

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).
http://www.cancercenter.com

BreastCancer.org:
In general, stage IA describes invasive breast cancer in which: the tumor measures up to 2 centimeters (cm) and the cancer has not spread outside the breast; no lymph nodes are involved

In general, stage IB describes invasive breast cancer in which: there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes

or there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
http://www.breastcancer.org

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Profile picture for slfisher1976 @slfisher1976

And no offense, but why ever shouldn’t they be cheerful and reassuring? Should they be gloomy and in utter despair as a general rule of practice?

The 2 pathologists who independently wrote my report (and of whom I have no knowledge as to their cheerfulness) BOTH classified my tumor as 1b. My surgical and medical team concurs. I had a negative lymph node biopsy and no lymph nodes removed. It was definitely 6 mm with clear margins. And that’s my story.

I’m here to share, not to be lectured to or scolded.

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I think there is misunderstanding here. I was just asking about the contradiction between 1b and NX.

I have noticed a chirpy quality to my two oncologists. It is our choice whether to believe their affect or not. Not judging at all.

Sorry if I expressed myself in a way that made you feel that way. Not intended. I was just curious about the classification especially NX.

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Profile picture for windyshores @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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And no offense, but why ever shouldn’t they be cheerful and reassuring? Should they be gloomy and in utter despair as a general rule of practice?

The 2 pathologists who independently wrote my report (and of whom I have no knowledge as to their cheerfulness) BOTH classified my tumor as 1b. My surgical and medical team concurs. I had a negative lymph node biopsy and no lymph nodes removed. It was definitely 6 mm with clear margins. And that’s my story.

I’m here to share, not to be lectured to or scolded.

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Profile picture for slfisher1976 @slfisher1976

Actually, according to my surgeon, nurse navigator, radiation oncologist and medical oncologist, and pathologist, Stage 1b does NOT need lymph node involvement to be classified as 1b. In my case, the size of the tumor (6 mm) was enough for it to be considered 1b rather than 1a.

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That was what I was saying, sorry to be unclear. I was saying that 1bNX seems like a contradiction, since they were saying 1b supposedly means something found in lymph nodes, and NX means the nodes cannot be evaluated- kind of a contradiction.

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Profile picture for windyshores @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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Actually, according to my surgeon, nurse navigator, radiation oncologist and medical oncologist, and pathologist, Stage 1b does NOT need lymph node involvement to be classified as 1b. In my case, the size of the tumor (6 mm) was enough for it to be considered 1b rather than 1a.

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