1. < Breast Cancer

After breast cancer: 12 years out, questions about recurrence

Posted by bigfootx2 @bigfootx2, Mar 18, 2022

I had ER + stage 3 bc 12 years ago. Within 2 months of chemo after a double mastectomy i developed severe myasthenia gravis and rhumatoid arthritis. I get plasmaphoresis every 6 weeks a year ago had my thy.us gland out to see if it would help and my treatments went from every 2 weeks to every 6 weeks and rituxan every 4 mo ths. My question is , i have small hypodensities in my liver, inditerminate, could be nothing, probably is nothing but my tumor markers for 27-29 went fromm 11 to 38 even though in normal tange they are on the edge. My question is can plasma phoresis lower the tumor marker count as protiens are replaced? Just curious as my body is complex. My onocologist said reoccurance doesnt happen at 12 years, but i read an article that it can happen at 15,and even 20 years. My tumor was over 5 and no lymph node, 2 areas in left breast and pre cancer in right breast although i understand bc doesnt spread from on side to the other so that was different in itself. I also have MlH1 lynch syndrome , my mother,sister,2 uncles had colon cancer, aunt stomach cancer, uncle breast cancer, uncle brain cancer, aunt ovarian and throat cancer. Wondering if following up with just my gastro doctor is enough with another CT in 6 months. My BC ono pretty much said my tumor markers are ok and even though I have lost 24 lbs without trying there is nothing to worry about.

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raebaby | @raebaby | Apr 5, 2022
In reply to @monigue "The Tamoxifen is proven for 30 years. The new one aren’t appropriate for all . Many..." + (show)
@monigue

The Tamoxifen is proven for 30 years. The new one aren’t appropriate for all .
Many people has changed to Tamoxifen .But.,,, everybody are different!
Diet ( organic) and physical activities are plus !!
Good for you’

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I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable in menopause, I said i didn't want to take Tamoxifen. He said, "fine. At my age, if it comes back in later years, I will deal with it then rather than feeling horrible with the years I have now.

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3 replies
lisman1408 | @lisman1408 | Apr 5, 2022
In reply to @oahu "Had masectomy March 9 And prescribed anastrozole for 5 years, I am 86 and take no..." + (show)
@oahu

Had masectomy March 9 And prescribed anastrozole for 5 years, I am 86 and take no prescribed meds, just vitamins and herbs for 50 years. I want no part of this med because of side effects. It will affect my complete way of life. Can I not find some natural way to lower estrogen? Am I destined to spend the end of my life taking this drug. I would appreciate any ideas on where to go from here. I see Oncologist this am to tell him I feel very uncomfortable with this drug. I hope he is understanding.

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Oahu, good for you to take control of your life. At 86 you have obviously taken very good care of yourself! Your doctor can inform and advise you about your medical care, but the decisions about your health remain with you. At age 86, your body likely isn’t producing much estrogen anyway. Thus, I’m with you on your decision not to take drugs that lower your estrogen even farther. Why should you put up with the side effects of these drugs if it’s not truly necessary. Hopefully your doctor will be understanding and can suggest other alternatives. Good luck, and keep posting to let us know how you are doing. 😀

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2 replies
monigue | @monigue | Apr 5, 2022
In reply to @raebaby "I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable..." + (show)
@raebaby

I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable in menopause, I said i didn't want to take Tamoxifen. He said, "fine. At my age, if it comes back in later years, I will deal with it then rather than feeling horrible with the years I have now.

Jump to this post

After my lumpectomy I didn’t want do either chemo or radiation, taking into consideration AFIB (arrhythmia).
OncoDX test isn’t significant because chemo was out of
question. Therefore, having tamoxifen is prevention ( as I have been explained) from metastatic to other body organ.
The Tamoxifen can affect endometrial and ovary. Those issue should be watched because the estrogen reduction .
It is many topics on NCI( national cancer institute) website .
What I relay on is the some injection, that
supposed to improve the immunity .
And if the cancer is reoccur I will deal with it later???

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monigue | @monigue | Apr 5, 2022
In reply to @lisman1408 "Oahu, good for you to take control of your life. At 86 you have obviously taken..." + (show)
@lisman1408

Oahu, good for you to take control of your life. At 86 you have obviously taken very good care of yourself! Your doctor can inform and advise you about your medical care, but the decisions about your health remain with you. At age 86, your body likely isn’t producing much estrogen anyway. Thus, I’m with you on your decision not to take drugs that lower your estrogen even farther. Why should you put up with the side effects of these drugs if it’s not truly necessary. Hopefully your doctor will be understanding and can suggest other alternatives. Good luck, and keep posting to let us know how you are doing. 😀

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You brought good points about estrogen !
We still need some at older age . Therefore, we should level up the cancer reoccurrence later or medicine side effects affecting life now. ☺️😇

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raebaby | @raebaby | Apr 5, 2022
In reply to @raebaby "I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable..." + (show)
@raebaby

I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable in menopause, I said i didn't want to take Tamoxifen. He said, "fine. At my age, if it comes back in later years, I will deal with it then rather than feeling horrible with the years I have now.

Jump to this post

I'm a retired RN I've found doctors are more than happy to get into deep explanations with someone who understands medical things. Plus, I had a friend who had the same cancer treatment as I did. She took Tamoxifen for over 2 years, then she couldn't stand how it make her feel any longer. We have the same oncologist. In reality, he said it only cut the chance of reoccurrence down a little bit. So, we are opting out. For someone that can stand the side effects, I would be all for it.

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1 reply
aloha66 | @aloha66 | Apr 5, 2022
In reply to @lisman1408 "Oahu, good for you to take control of your life. At 86 you have obviously taken..." + (show)
@lisman1408

Oahu, good for you to take control of your life. At 86 you have obviously taken very good care of yourself! Your doctor can inform and advise you about your medical care, but the decisions about your health remain with you. At age 86, your body likely isn’t producing much estrogen anyway. Thus, I’m with you on your decision not to take drugs that lower your estrogen even farther. Why should you put up with the side effects of these drugs if it’s not truly necessary. Hopefully your doctor will be understanding and can suggest other alternatives. Good luck, and keep posting to let us know how you are doing. 😀

Jump to this post

Had lumpectomy and radiation treatment in August 2021. Been on Anastrazole for 5 mos. now and it has made my quality of life miserable. I am at that point that is it worth it to take this med knowing the effects it causes. Wishing you good health in years to come.

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windyshores | @windyshores | Apr 6, 2022
In reply to @raebaby "I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable..." + (show)
@raebaby

I'm , 80 and just finished having a lumpectomy, chemo and radiation. I was so miserable in menopause, I said i didn't want to take Tamoxifen. He said, "fine. At my age, if it comes back in later years, I will deal with it then rather than feeling horrible with the years I have now.

Jump to this post

Curious why would you take tamoxifen at age 80? Wouldn't you take an aromatase inhibitor? As I wrote before many of us have few or no side effects from these meds. If your pathology showed low risk, including Oncotype, size, ER status, grade etc. this could be a reasonable decision, but I would not be afraid of AI's until tried.

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1 reply
pbnew | @pbnew | Apr 6, 2022
In reply to @windyshores "I had virtually no side effects from an aromatase inhibitor and neither did my friends. Please..." + (show)
@windyshores

I had virtually no side effects from an aromatase inhibitor and neither did my friends. Please don't assume side effects will happen. This is the downside of forums and med reviews: people tend to post more when they have side effects. I miss my Femara! I felt safe on it.

As for a "natural way" to lower estrogen. People need to understand that any side effects from the aromatase inhibitors are FROM estrogen deprivation. If there WERE a way to lower estrogen to that extent naturally, you would have the same side effects!!

What was your estrogen score? What was your Oncotype score? These are also relevant to your decision.

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When you say you and friends had no side effects from aromatase inhibitors do you mean that none of you experienced bone loss? My understanding is that bone loss is a given. I’d be happy if my understanding is wrong. Please elaborate.

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4 replies
windyshores | @windyshores | Apr 6, 2022
In reply to @pbnew "When you say you and friends had no side effects from aromatase inhibitors do you mean..." + (show)
@pbnew

When you say you and friends had no side effects from aromatase inhibitors do you mean that none of you experienced bone loss? My understanding is that bone loss is a given. I’d be happy if my understanding is wrong. Please elaborate.

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Good point. I had bone loss the first year, similar to at menopause, and then it evened out. I had osteoporosis to begin with but still took an aromatase inhibitor for 5 years. Now I am on Tymlos. Many take Reclast during treatment but my doc did not want me to. In terms of day to day side effects that are FELT, I had almost none.

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pbnew | @pbnew | Apr 6, 2022

Thank you. I wonder why it evens out.

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