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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I feel the same way. I’m about to turn 68 and had a lumpectomy almost 2 weeks ago. My surgeon told me it was very early, very small tumor, etc., and recommended lumpectomy and radiation, followed by anti hormone meds. My follow-up was supposed to be with her nurse practitioner but now I’m seeing the surgeon again because she didn’t think the margins were wide enough. So. I agree-it doesn’t seem to matter-they want to go full throttle no matter what. I had a spinal fusion less than a year ago and am very afraid of what Tamoxifen and aromotase inhibitors will cause. I want to live a long time but I don’t want to to be a horrible, painful life. I am so very confused.

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Breath… take one step at a time. This whole thing is Very Scary and worrisome. Listen to what your doctor presents. Then take some time for yourself to process it - for you. Talk it over with family or friend. Verbalizing helps understanding. Small steps and try not to be overwhelmed. Blessings. We are here for you.

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@auntieoakley

I can certainly respect your choice of not taking AI, but I would question wether or not you need to try and look for a new oncologist. It is possible he got you mixed up with someone else but in oncology, that could be really bad if not for you speaking up.
I am guessing if you have a 62 year old son you don’t have a ton of estrogen naturally to be concerned about. With a small tumor and no history that should further give you peace of mind.
I could not imagine doing this without my husband. My thoughts are with you. When is your next appointment with oncology?

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Not until Aug 4. He doesn't seem to be concerned about much. See surgeon April 21, lymph nodes seem to keep draining but not into my body but in a lump.

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@oahu

Saw onocologist April1 12, to ask about not taking anastrolozle. I had 9 questions to ask but when I handed them to him he said, no, you tell me.. So I started, he then started off how I should take the meds and I needed to go to Swedish hospital and have a masectomy...my jaw dropped. I said do you not know I already had a masectomy? and raised my blouse. He looked stunned and said to excuse him a minute. I saw him about two weeks ago and he prescribed the pills. He came back and said he understood from my question to the nurse on the phone was whether I wanted a masectomy. Really believe he did not have my chart at all. Said he respects my decision to not take pills and left. Lump was smaller than an inch and had not spread to lymph nodes. No history that I know of cancer in our family. So decided to eat lots of greens , take some recommen ded herbs. Still have fluid buildup under my arm. Drain removed two and a half weeks after operation, seemed plugged up , no drainage coming out. She.
took,one and a half cups of fluid and stiill wearing ace wrap . can do the drain one more time and then a drain will have to be installed. my husband of 65 years passed away April 9 21. I miss him to talk to about all my problems so I really do appreciate all the input I have been getting from everyone. I t has eased my mind some. Family is all in KS. I have a 62 year old son who has been helpful. Thanks all

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Oahu, can you switch to an oncologist who is actually paying attention? And see someone sooner than August? I would feel safer having better continuity after such a major surgery. I only had a lumpectomy, last October, and gave since seen the oncologist three times. And another one for a second opinion. Now that we know what plan we're on, I'll see him and the surgeon every 6 months and have blood work, including tumor markers, checked every 3 for at least the next year. Better yet, both onco and endocrinologist answer questions within 24 hours through the medical facility's patient portal. I've only used it once and it's very reassuring that it's there as I can travel and still stay in touch.

You're in my thoughts as zi just realized that the anniversary of the loss of your husband was the other day and know that those anniversaries, well, are difficult.

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@jaynep

I feel the same way. I’m about to turn 68 and had a lumpectomy almost 2 weeks ago. My surgeon told me it was very early, very small tumor, etc., and recommended lumpectomy and radiation, followed by anti hormone meds. My follow-up was supposed to be with her nurse practitioner but now I’m seeing the surgeon again because she didn’t think the margins were wide enough. So. I agree-it doesn’t seem to matter-they want to go full throttle no matter what. I had a spinal fusion less than a year ago and am very afraid of what Tamoxifen and aromotase inhibitors will cause. I want to live a long time but I don’t want to to be a horrible, painful life. I am so very confused.

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Did you by any chance have genetic testing that could give you an idea of risk of likely recurrence? A post-surgical biopsy yields the information as to whether there were clean, sufficiently-wide margins. If you weren't given a copy, you can ask for it. With a lumpectomy that recent, they can likely still submit the tissue for testing. Mine was submitted by my oncologist and I didn't see him until 8 days after surgery.

I'd probably consider getting a second opinion entirely from a different oncologist.. And, if I needed more surgery, get a second opinion on that too.

As to the post-surgery adjuvant anti-hormone drugs, many people have few side effects and tolerate them. With the caveat that the aromatase inhibitors will effect the rate of bone loss. And you might want to pay special attention to that and have a baseline DEXASCAN before starting them. They might have no negative effect on the spinal fusion.

I wish that more patients with breast cancer were offered the genetic testing. Size, location and stage of tumor are data points. Adding the data derived from an analysis of that unique person's genes is a very valuable data point as well. It helped my oncologist and endocrinologist (and me) feel OK with my decisions re: radiation and drugs.

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@callalloo

Did you by any chance have genetic testing that could give you an idea of risk of likely recurrence? A post-surgical biopsy yields the information as to whether there were clean, sufficiently-wide margins. If you weren't given a copy, you can ask for it. With a lumpectomy that recent, they can likely still submit the tissue for testing. Mine was submitted by my oncologist and I didn't see him until 8 days after surgery.

I'd probably consider getting a second opinion entirely from a different oncologist.. And, if I needed more surgery, get a second opinion on that too.

As to the post-surgery adjuvant anti-hormone drugs, many people have few side effects and tolerate them. With the caveat that the aromatase inhibitors will effect the rate of bone loss. And you might want to pay special attention to that and have a baseline DEXASCAN before starting them. They might have no negative effect on the spinal fusion.

I wish that more patients with breast cancer were offered the genetic testing. Size, location and stage of tumor are data points. Adding the data derived from an analysis of that unique person's genes is a very valuable data point as well. It helped my oncologist and endocrinologist (and me) feel OK with my decisions re: radiation and drugs.

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I give up typing forever! "Banana' should read "by any". I'm afraid to look for any other typos. Is there a way to edit text once submitted? Or can I blame the tiny window the software allows for viewing text? It's 0.5" tall on my 10" tablet. Just sayin' ...

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@jaynep

I feel the same way. I’m about to turn 68 and had a lumpectomy almost 2 weeks ago. My surgeon told me it was very early, very small tumor, etc., and recommended lumpectomy and radiation, followed by anti hormone meds. My follow-up was supposed to be with her nurse practitioner but now I’m seeing the surgeon again because she didn’t think the margins were wide enough. So. I agree-it doesn’t seem to matter-they want to go full throttle no matter what. I had a spinal fusion less than a year ago and am very afraid of what Tamoxifen and aromotase inhibitors will cause. I want to live a long time but I don’t want to to be a horrible, painful life. I am so very confused.

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@jaynep what was your Oncotype score? That is a really important factor in the decision on meds. I don't view aromatase inhibitors or Tamoxifen as "full throttle." The Oncotype has saved a good proportion of cancer patients from the once assumed course of chemo. Chemo is full throttle! Many of us took aromatase inhibitors with few problems and if you do not yet have osteoporosis, bone loss either won't be a problem or can be reversed, most likely. Size of tumor is certainly a factor but you need to know grade, ki67%, and Oncotype or Mammaprint to know your risk. Unfortunately risk of recurrence continues and even increases for those of us with hormone-positive cancers.

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@jaynep

I feel the same way. I’m about to turn 68 and had a lumpectomy almost 2 weeks ago. My surgeon told me it was very early, very small tumor, etc., and recommended lumpectomy and radiation, followed by anti hormone meds. My follow-up was supposed to be with her nurse practitioner but now I’m seeing the surgeon again because she didn’t think the margins were wide enough. So. I agree-it doesn’t seem to matter-they want to go full throttle no matter what. I had a spinal fusion less than a year ago and am very afraid of what Tamoxifen and aromotase inhibitors will cause. I want to live a long time but I don’t want to to be a horrible, painful life. I am so very confused.

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Does anyone know what is a “safe” margin? From my pathology report “my invasive carcinoma distance is 0.3 cm from the closet margin”. In addition it reads “Specify closest margin: Deep”. 0.23 seems vey slim. Thanks

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@jaynep

I feel the same way. I’m about to turn 68 and had a lumpectomy almost 2 weeks ago. My surgeon told me it was very early, very small tumor, etc., and recommended lumpectomy and radiation, followed by anti hormone meds. My follow-up was supposed to be with her nurse practitioner but now I’m seeing the surgeon again because she didn’t think the margins were wide enough. So. I agree-it doesn’t seem to matter-they want to go full throttle no matter what. I had a spinal fusion less than a year ago and am very afraid of what Tamoxifen and aromotase inhibitors will cause. I want to live a long time but I don’t want to to be a horrible, painful life. I am so very confused.

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i feel the same way

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These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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