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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callalloo | @callalloo | Apr 28, 2022
In reply to @monigue "Thank you for reply. Agree on every word you said I have also checked all searches,..." + (show)
@monigue

Thank you for reply.
Agree on every word you said I have also checked all searches, that coming my way.
I have noticed, the descripancy in thereports not very cleared and have some contradiction.
I asked for OncoDX. test, and tumour marker. Was willing to pay for, because here in
Canada all protocols treatments are under government insurance.Was refused
because I didn't have chemo !!! I also was surprised about my cancerous lamp, I have spotted last year at the age of 80.No history of family cancer.Only my benign nipple discharge more than 15 years ago. Decided to go only for bilateral lumpectomy and watch.
At older age the cancerous cells slowly develop.
Started Tamoxifen ( hormone therapy for ER positive)
I went on for holistic treatment ( Mistletoe injection), that suppostedly support immune
system. Will see result.My cancer is resent surprise for me!!!
Regards

Editor's Note:
When looking for and evaluating complementary therapies, please refer to NIH's National Center for Complementary and Integrated Medicine (NCCIH) website https://nccih.nih.gov/

In the section "Health Topics A-Z" current therapies and conditions are listed explaining the most recent evidence, cautions and potential of future studies.

Here is their information on
– European Mistletoe https://www.nccih.nih.gov/health/european-mistletoe
"European mistletoe is not a proven cancer treatment. It should not be used as a treatment for cancer outside of clinical trials."

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Thank you for posting the mistletoe information. It looks interesting and I'm increasingly curious about things that might help the immune system. I hope that you're doing well.

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callalloo | @callalloo | Apr 28, 2022
In reply to @jeaniebean "I totally agree.... I could not tolerate any of the AIs prescribed. They made me swell..." + (show)
@jeaniebean

I totally agree.... I could not tolerate any of the AIs prescribed. They made me swell up, couldnt stand on my feet, couldnt use my hands, they swelled like baseball mitts, dizziness, and basically bedridden. I tokk myself off of them. My oncologist said all I could do was pray and at least I managed 6 months on the pills..... I did all the herbal things and improved about 40%. Then I went all in on diet and excercise. I eat plant based whole foods no oil starch diet, and I have lost 51 pounds since June. I can walk 2 miles every day right now, and while my fingers still dont bend, I have no arthritic pain. I also do chair yoga. I feel better than I ever have, and am no longer afraid of recurrence. I am in my 3rd year out. I plan to repost for the next 20 years!!! Good luck on your journey. There is nothing wrong with thrying medication free. My blood pressure which was always 170/95 while on blood pressure meds is now an even 110 to 120 over 80 to 90. I have never felt better. Good luck on your journey!!

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Can I ask what 'herbal stuff you did and what results you hoped for and got? I was studying with an herbalist in Asheville, NC before lockdown and, while it was just for fun, I found it fascinating. The instructor grew up in western NC with elderly Cherokee neighbors teaching her what they knew and taking her foraging. I can't wait to get back to it.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Apr 29, 2022
In reply to @boathouse "Thank you for your comments, I have a radiation. Consult 4/14 and I will have a..." + (show)
@boathouse

Thank you for your comments, I have a radiation. Consult 4/14 and I will have a schedule at that time, it will overlap chemo.
Staying strong in attitude and have an amazing family support system
Looking forward to time at the lake I. July - keeping me motivated

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I have been thinking about you and your treatments. I know you were waiting on a schedule, and I wanted you to have time to take it all in. Have you started radiation?How are you feeling now?

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1 reply
boathouse | @boathouse | Apr 29, 2022
In reply to @auntieoakley "I have been thinking about you and your treatments. I know you were waiting on a..." + (show)
@auntieoakley

I have been thinking about you and your treatments. I know you were waiting on a schedule, and I wanted you to have time to take it all in. Have you started radiation?How are you feeling now?

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Hello,
I started radiation yesterday and had my second treatment today.
Easy, first two no issues.
Monday I start T-DM1 for the next 42 weeks.
I am feeling great after surgery(double mastectomy) just trying to stay on a life routine and pushing through this next phase.
My end of rainbow is 30 more years!
Thanks for thinking of me.

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2 replies
jeaniebean | @jeaniebean | May 1, 2022
In reply to @callalloo "Can I ask what 'herbal stuff you did and what results you hoped for and got?..." + (show)
@callalloo

Can I ask what 'herbal stuff you did and what results you hoped for and got? I was studying with an herbalist in Asheville, NC before lockdown and, while it was just for fun, I found it fascinating. The instructor grew up in western NC with elderly Cherokee neighbors teaching her what they knew and taking her foraging. I can't wait to get back to it.

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Facinating and full of false hope. I spents thousands on anything my mentor pushed at me. Then I watched a documentary on the snake oil sellers that are busking these things. When I finally went on my own completely drug free, and only eating the diet of our first settlers, corn, potatoes, and vegetables, di my health turn around for me. I have had nothing in thepast year, ingest NO OILS, and I have never felt, moves, and gotten stronger in my life. I have lost 50 pounds, walk two miles a day now, and feel great, and getting better all the time. There is no such thing as a "natural" drug. A drug is a drug, and even the so called "natural" ones have side effects, as I learned the hard way.

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windyshores | @windyshores | May 2, 2022
In reply to @boathouse "Hello, I started radiation yesterday and had my second treatment today. Easy, first two no issues...." + (show)
@boathouse

Hello,
I started radiation yesterday and had my second treatment today.
Easy, first two no issues.
Monday I start T-DM1 for the next 42 weeks.
I am feeling great after surgery(double mastectomy) just trying to stay on a life routine and pushing through this next phase.
My end of rainbow is 30 more years!
Thanks for thinking of me.

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@boathouse just want to say that your attitude is inspiring 🙂 Good luck with the T-DM1.

REPLY
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 19, 2022
In reply to @boathouse "Hello, I started radiation yesterday and had my second treatment today. Easy, first two no issues...." + (show)
@boathouse

Hello,
I started radiation yesterday and had my second treatment today.
Easy, first two no issues.
Monday I start T-DM1 for the next 42 weeks.
I am feeling great after surgery(double mastectomy) just trying to stay on a life routine and pushing through this next phase.
My end of rainbow is 30 more years!
Thanks for thinking of me.

Jump to this post

Now that you have had a chance to recover from the radiation. How have you been? Are having energy? How are you enjoying the beginning of your 30 more years?

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cctoo. Catherine Crowley | @cctoo | Jul 1, 2022

Probably nothing but I thought 38 was the highest 27-29 marker?

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cctoo. Catherine Crowley | @cctoo | Jul 1, 2022
In reply to @bigfootx2 "Also, My daughter had luekemia AmL and is 6 years out from her bone marrow transplant...." + (show)
@bigfootx2

Also, My daughter had luekemia AmL and is 6 years out from her bone marrow transplant. With that all said I have severe fatigue right now, greater than normal. Why do I feel like this is not okay? I never worry about BC reoccurance or lynch, i get my colonoscopies. I am confused right now. what if anything should I do or ask

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First of all...everyone I know has great fatigue!! My bc just found cancer in lymph node..I was cancer free ..I thought last year.... from lumpectomy six years ago... I am wondering what to do also...since am 85 and pain free. My 27-29 kept going down to 5..then up to 16!..now 17.

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