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After breast cancer: 12 years out, questions about recurrence
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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Glad you'll be here when they do, your post is reassuring that life goes on and cancer just a part of it.
A friend's mango tree is abloom with a bumper crop. I don't have a photo but they look and smell lovely and the bees in his yard look a tad drunk so might be busy pollenating. I'll think of you at his first harvest. Cheers!
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1 ReactionThank 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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1 ReactionHi everyone, there is a lot of information, some of it conflicting, that is being shared here. The good news is that everyone has shared information that can be interpreted as correct. Let me try to summarize.
From the American Cancer Society https://www.cancer.org/cancer/breast-cancer/treatment/hormone-therapy-for-breast-cancer.html
"Because AIs drastically lower the estrogen level in women after menopause, they CAN also cause bone thinning, sometimes leading to osteoporosis and even fractures. If you are taking an AI, your bone density may be tested regularly and you may also be given bisphosphonates (zoledronic acid [Zometa] for example) or denosumab (Xgeva, Prolia), to strengthen your bones."
Key takeaway
Not everyone experiences the same degree of bone thinning, loss or osteoporosis. But bone health must be closely monitored for all women (and men) taking anti-estrogen therapy.
BreastCancer.org explains anti-estrogen therapy very clearly in plain language.
- Hormonal Therapyfor Breast Cancer https://www.breastcancer.org/treatment/hormonal-therapy
(I encourage everyone to include links to the studies or information you are citing so that all members can read the original source and do their due diligence in researching for themselves.)
Breast cancer treatments have come a long way. We are luckly that there are different options for estrogen-positive tumor types of breast cancer, including the option to not take estrogen suppressing therapy.
Forums like Mayo Clinic Connect can provide valuable insight into first-hand experiences of other survivors like you. However, we are all different. Even if you have the same breast cancer type and stage, there will be other personal medical histories and personal preferences that contribute to your choice of treatment. Not everyone experiences the same side effects.
As stated in the forum's disclaimer (https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/):
"All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community."
I encourage you to use the experiences shared in the Breast Cancer Group to inform the discussions that you have with your oncologist to choose the therapy that is right for you and to discuss options when side effects are affecting your quality of life negatively. There are options that are right for you.
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4 ReactionsHi Monigue, if you're referring to the oncologist who posits that a second breast cancer (which is a kind of cancer and can be discovered outside of breast tissue) might not be a recurrence in a true sense, but an independent event, I'll try to find it again. When I came upon it, I was in the shock of having breast cancer and preparing for surgery and recurrence was the last thing on my mind. I didn't realize until later that it his is an interesting speculation ....he seemed to be questioning the process by which breast cancer can later occur in a different area of the body years later without somehow spreading to that area but the spread theory wouldn't account for the time lag. As I say, when I read it, my focus was on the immediate present so I read it half forgot about it. It's probably a moot point for anyone but research scientists as no matter how cancer shows up, the only thing we can do is deal with it and hope to not have it again.
Thank you Callallo
You right. We deal when it come!
Well said. Thank you.
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3 ReactionsI 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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1 ReactionGood for you jeaniebean! That's really positive results supporting the old duet and exercise recommendation. And your results are further nudging me that my diet, while improved since lumpectomy, has a long way to go, sigh.
My mother's med school professor liked to remind his students that the human body has a powerful propensity to self-heal if given the right environment. He used to say food is medicine. That might have been truer before so many chemicals are sprayed on crops or in the soil and it most everything was, by default, organic though...
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1 ReactionCongratulations! Are you following Dr. McDougall’s diet?
I sure am! Best thing I ever did!