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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@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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There are two different things going on: the effects of the medicine in terms of what it does in the body to result in estrogen depletion and, secondly, the effects of estrogen depletion.

I haven't seen any studies that attribute all of the side effects of the aromatase inhibitors strictly to their result (the blockage of estrogen production) and none to how they work to achieve that. I guess we can't look at cases where women had hysterectomies, in comparison, as they don't result in zero estrogen production but it would be interesting to identify if an estrogen-less state has significant side effects beyond what is already known.

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@callalloo

There are two different things going on: the effects of the medicine in terms of what it does in the body to result in estrogen depletion and, secondly, the effects of estrogen depletion.

I haven't seen any studies that attribute all of the side effects of the aromatase inhibitors strictly to their result (the blockage of estrogen production) and none to how they work to achieve that. I guess we can't look at cases where women had hysterectomies, in comparison, as they don't result in zero estrogen production but it would be interesting to identify if an estrogen-less state has significant side effects beyond what is already known.

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Patients taking aromatase inhibitors are post-menopause, so their ovaries' estrogen production is similar to that of those who had hysterectomies. Neither group is in an "estrogen-less state." Aromatase inhibitors affect estrogen produced by the adrenals. It stands to reason that reducing estrogen by "natural" methods (I don't know what these would be) would produce hot flashes and joint pains and perhaps other side effects that result from further reduction of estrogen in the body.

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@pbnew

Thanks for your comprehensive post as always. Do you have a medical background? It’s disappointing that we can’t get straight answers in a medically sponsored forum. Some of us are spreading misinformation and we don’t know it. Some doctors appear to be spreading misinformation which is totally unacceptable. This isn’t a book club. It’s life or death so we need to be sharing facts not just our opinions and feelings.

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Thank you, I'm blushing. I don't have a medical background but my mom was a doctor. And I'm curious about a lot of things so a researcher by nature. When I got the Bad News Biopsy last fall, it was my habit to dive into the literature. For one thing, I wanted to learn as much as possible so my doctors' consults didn't waste time on the basics but we could spend the time looking at treatment possibilities. I took quantitative analysis coursework in school so that helped put the studies' statistics in perspective.

There was a brilliant article by the New York Times writer, Natalie Angier, about medical statistics. She wrote about the scientists Stephen Jay Gould was diagnosed with a rare, vicious cancer in his 30s and, basically, could expect to die soon. He analyzed all of the studies and found a lot of holes in the studies, bad statistics, corrupted data pools, etc., and picked his own treatment path and decided the data against survival were basically junk. Then he lived another 30 or so years and died of something else.

I read that article in a book of her science essays and never forgot it. All studies of human subjects are inherently flawed because we are not perfect substitutes for each other so isolating just one variable and freezing all the other identical variables is impossible. If we can do our best to get, and remain, healthy, we're already better than the mean (average) versus most study data universes. I find that very encouraging. And liked Stephen Jay Gould. And Mark Twain's, "There's lies, damn lies and statistics?"

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@windyshores

Patients taking aromatase inhibitors are post-menopause, so their ovaries' estrogen production is similar to that of those who had hysterectomies. Neither group is in an "estrogen-less state." Aromatase inhibitors affect estrogen produced by the adrenals. It stands to reason that reducing estrogen by "natural" methods (I don't know what these would be) would produce hot flashes and joint pains and perhaps other side effects that result from further reduction of estrogen in the body.

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Correct. Women are still producing estrogen after menopause or surgery to remove ovaries. My understanding is that the AIs block production of estrogen no matter which system is triggering that, including fat. Fat does not produce estrogen, but triggers the production elsewhere, presumably by the adrenals.

I don't know of any 'natural methods to stop producing such an important hormone so share your caveat about that.

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My Bad News Biopsy was 12/24/21 in Milan, Italy.

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@callalloo

I'm kind of on the same page. I declined anastrozole but know there are people who have good reasons to take it, understand how it works and will keep a hawkeye on bone density and basic blood work and tumor markers to minimize risks. And who tolerate it well. And some people who don't tolerate it well but do fine with a different aromatase inhibitor.

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Thank you for the valuable information. please clarify what are tumor markers? My oncologist has not mentioned this. It sounds like a test other than blood work which I do have done every 3 months for 1 year. Thank you.

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@gillooly

Thank you for the valuable information. please clarify what are tumor markers? My oncologist has not mentioned this. It sounds like a test other than blood work which I do have done every 3 months for 1 year. Thank you.

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The definition below is from a government cancer website. But basically there are a few that my oncologist will check with periodic blood work. An increase in the number could suggest cancer cell activity or reproduction but could be caused by a lot of other inflammatory processes in the body. From what I understand, a decrease is never bad news.

"A tumor marker is anything present in or produced by cancer cells or other cells of the body in response to cancer or certain benign (noncancerous) conditions that provides information about a cancer, such as how aggressive it is, what kind of treatment it may respond to, or whether it is responding to treatment."

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@callalloo

The definition below is from a government cancer website. But basically there are a few that my oncologist will check with periodic blood work. An increase in the number could suggest cancer cell activity or reproduction but could be caused by a lot of other inflammatory processes in the body. From what I understand, a decrease is never bad news.

"A tumor marker is anything present in or produced by cancer cells or other cells of the body in response to cancer or certain benign (noncancerous) conditions that provides information about a cancer, such as how aggressive it is, what kind of treatment it may respond to, or whether it is responding to treatment."

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Thanks

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Hello
I start another round of chemo on Monday 4/11.
I had a successful bi lateral mastectomy.
For HER2 + invasive breast cancer stage 3 on 3/22.
I am healing and recovering well.
Herceptin and per(sp) are what my targeted chemo drugs were and I will continue with them.
Radiation will start soon for 5 weeks.
I feel sore but great, i had very little side affects from my 7-8 hour chemo on the first round.
This round should be 4 hours, yeah.
I have requested with my Dr. That my lymph node tumor be sent to the tumor board to confirm what type of breast cancer - they did not respond well to chemo and what may be the plan…
Xeloda meds orally?
Waiting for some summer flowers to start blooming.

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@boathouse

Hello
I start another round of chemo on Monday 4/11.
I had a successful bi lateral mastectomy.
For HER2 + invasive breast cancer stage 3 on 3/22.
I am healing and recovering well.
Herceptin and per(sp) are what my targeted chemo drugs were and I will continue with them.
Radiation will start soon for 5 weeks.
I feel sore but great, i had very little side affects from my 7-8 hour chemo on the first round.
This round should be 4 hours, yeah.
I have requested with my Dr. That my lymph node tumor be sent to the tumor board to confirm what type of breast cancer - they did not respond well to chemo and what may be the plan…
Xeloda meds orally?
Waiting for some summer flowers to start blooming.

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Hello, I am glad to hear you are doing pretty well after your chemo. Herceptin in your frontline is a good thing even with all the possible issues. Having to go back through to get it wasn’t really great either. I am really happy that you can tune out some of the noise and look at the positive. You can do 4 hours easy after the marathon infusion! I thought I would send you some flowers today. Do you have a scheduled start date for radiation? Are they waiting until after chemotherapy?

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