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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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The OncotypeDX is solely designed to help the client evaluate the risk/reward payoff of chemo given that persons unique genetics. Oncotype is adamant that it does not help with a decision as to radiation. They do not currently offer any tests addressing the benefit of radiation with respect to a radiation decision.
Thank you
I would like to think that while our discussion with the surgeon the risk of having chemo and/or rad was greater, than don’t .
Honestly, I haven’t heard from the doctor strait forward explanation/ advice and came to the conclusion myself ( NO)
based on my present AFIB ( arrhythmia ) and age factor !!
If the heart isn’t strong enough, thinking😇 about cancer reoccurrence should come second !
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2 ReactionsMonigue, other writers here can opine on this better. But if you're 80, did your oncologist first recommend anastrozole or another aromatase inhibitor? They are usually the first choice for postmenopausal women and have a different side effect profile. Thanks for the name of the mistletoe product. I'd heard something about it but didn't know the name.
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2 ReactionsThanks for reply.
No, the Tamoxifen is more appropriate for my health .
The new line of hormone therapy have more pronounce side effects for heart and bones !
I am not experimenting for now !
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1 ReactionAh, then it makes sense then. Will be curious to hear how your experimenting goes. My only experimenting is to improve my diet and increase exercise.
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1 ReactionThe 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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1 ReactionHad 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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1 ReactionDid you do any genetic testing? If not, perhaps you still can. The OncotypeDX test yields a predicted "risk of recurrence local or regional within 5 years" if the patient takes an aromatase inhibitor (such as anastrozole) or tamoxifen. The breast cancer industry assumption is that taking the drugs can cut that the risk of recurrence of breast cancer by approximately 50%. So one can calculate that, if taking anastrozole yielded a 4% risk, based on the analysis of the 21 genes Oncotype tests, the person would have an 8% risk if not taking the drugs. There aren't any foolproof ways to deplete the body of estrogen that I've heard of other than the aromatase inhibitors. And if someone has a high risk of recurrence, just lowering estrogen, by some other means, for estrogen-positive cancer, wouldn't be sufficiently conservative I'd think.
I look forward to others posting any natural ways of reducing estrogen keeping in mind that radically reducing estrogen deprives the body of estrogen benefits, including somewhat protecting bones and heart. It's a bit of a rock and a hard place situation. Ot at least it was for me. I have a low OncotypeDX risk so decided not to take any drugs, partly because I have mild osteopenia and hope to avoid osteoporosis. And hope to keep my heart healthy and cholesterol in check as I cannot take statins. Only time will tell how it turns out but two oncologists I consult with give high marks to the validity of Oncotype's test.
I know this is a personal decision and at 86 I think I’d skip meds and enjoy my comfort.
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3 ReactionsI 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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