Breast cancer-free anniversaries

Posted by callalloo @callalloo, Oct 3, 2022

There are many Mayo Connect members who continue to survive breast cancer and have remained remission free for years. I thought a thread celebrating those deserves its own topic as reading about them encourages all of us.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@hjtkyhl

My celebration is daily… as a 10 year survivor of breast cancer… and a survivor of over 21 years of bladder cancer !! At age 85, I am grateful….need I say that smoking for over 50 years contributed / caused my first cancer. I had outstanding care ( early immunotherapy ) at our only state comprehensive cancer center for the 1st cancer , and continued their quality care for the mastectomy in 2012. Life is Good ! @ hjtkyhl

Life is good !

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Daily celebration sounds perfect! Thanks for encouraging all of us with the 10 years and going strong...

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@callalloo

The NCCN's newest guidelines recommend an oncologist consider not recommending radiation for women over 70 with certain early stage breast cancers. I think, but don't know, that the revised guideline reflects the fact that certain cancers grow more slowly in older women and can be adequately treated with drugs. The NCCN is continually revising guidelines for certain cancers in an effort to correct from what it now considers 'over treatment' in the past.

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Thank you. 🌸

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@callalloo

Daily celebration sounds perfect! Thanks for encouraging all of us with the 10 years and going strong...

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Fabulous and encouraging! 🌸

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@callalloo

I read that the fastest growing 'first breast cancer' demographic is among women over 60. Many of whom discontinue mammograms as they age.

I pester everyone I know with that statistic so they pester their female relatives in turn to keep vigilant. We don't 'age out' of breast cancer risk and the prognosis for effective treatment is excellent.

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Exactly!

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@callalloo

Aha, a hair question. As someone whose stylists complain has 'too thick' but healthy hair, here's some of what I learned while keeping it that way.

Biotin Forte (brand name) was recommended on some post-chemo website and got great reviews on Amazon. A male friend stopped losing hair when I gave him a few bottles when he was in physical rehab for several months after an accident. I use it but haven't noticed a big difference but also haven't lost hair while getting old-er.

There are two Biotin Fortes on the market the last time I checked. The recommended one has zinc as well as Biotin. Another product that some people swear by Viviscal (sp?). It is also biotin-based but costs a lot more.

Alternatively, look for any good 'hair, skin and nails' supplement (from a reputable, established manufacturer) that includes biotin, zinc, silica and trace minerals. Also, use a clarifying shampoo once every few weeks to help prevent the build-up of hair product residue on scalp and hair follicles. Then once a month or so if still using a lot of hair products, especially anything with silicones and other non-water-soluble ingredients.

Try to use simple-formula, water soluble shampoos that clean hair but rinse thoroughly. Trader Joe's sells a body-and-hair 'shampoo' that seems to work well. Don't use Wen or similar 'clean and condition' 'one-products' unless checking them against FDA consumer complaints lists. [Wen is the target of multiple class action lawsuits for causing balding.] I'm a fan of Ketastase shampoos. They clean well with a very small amount of shampoo and fully rinse out.

There are a lot of new peptide-based products for hair and scalp that seem to help. Deciem's The Ordinary's hair and scalp peptide stuff gets solid reviews and is under $20. Worth a try and free-shippinh on orders over $25. I was curious, tried it for a week then forgot, and my hairdresser later noticed a small clump of 2" long hair where I'd been applying it. It can't hurt to try it and Deciem has a really generous return policy. [I'm a fan of their no-frills products that include a healthy amount of active ingredients and no nonsense.]

The less stress on hair the better. If you're not already using one, a Wet Brush is a necessity. The less heat damage the better so, if you can, air-dry after shampooing. Or wrap in large microfiber towel to dry. Wet hair is somewhat fragile so the less done to it, the better.

I've never done this, but a natural blonde friend only cleans her hair with a baking-soda-and-water slurry and has beautiful hair. She said it took a month or so of a rough period of adjustment. These are some ideas that might help...

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Thanks. I appreciate all the suggestions. I had been using a Biotin and Collagen shampoo but when it ran out and I didn't see any improvement I didn't buy it again. Maybe I'll try it long term and see. I'll also try cutting out the hair dryer and use a wet brush.

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@anjalima

Thank you. 🌸

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While understanding that radiation has its medical demerits, I question this recommendation as possibly ageist and $$$ oriented. While mortality may not decrease for those with early stage BC who do not choose radiation at age 70 and above, recurrence risk remains and may even increase with age. So if you have a lumpectomy at 70 with no cleanup radiation, how about the possibility of mastectomy at 75 or 80, especially if a woman cannot tolerate AI's? https://pubmed.ncbi.nlm.nih.gov/32441018/
There is no doubt that no radiation and AI's are less expensive than radiation treatments, a cost analysis benefit which insurance and hospitals no doubt prefer. I recommend checking with your BC surgeon, medical oncologist, and radiation oncologist when making this important decision.

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@vivi1

While understanding that radiation has its medical demerits, I question this recommendation as possibly ageist and $$$ oriented. While mortality may not decrease for those with early stage BC who do not choose radiation at age 70 and above, recurrence risk remains and may even increase with age. So if you have a lumpectomy at 70 with no cleanup radiation, how about the possibility of mastectomy at 75 or 80, especially if a woman cannot tolerate AI's? https://pubmed.ncbi.nlm.nih.gov/32441018/
There is no doubt that no radiation and AI's are less expensive than radiation treatments, a cost analysis benefit which insurance and hospitals no doubt prefer. I recommend checking with your BC surgeon, medical oncologist, and radiation oncologist when making this important decision.

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Be assured that I checked with all my doctors and there was absolutely no barrier, financial or otherwise, to my decision ( not saying this cannot happen but it does not apply to me). I had a unilateral mastectomy with reconstruction.

If you familiarize yourself with phase III of clinical trial TAILOR RT, ( ongoing right now) you will understand this new possible protocol shift in the thinking of the medical community regarding radiation. It’s being administered by Radiation Oncology departments in major health establishments; I interviewed for the clinical trial at MSK for example.

Both my breast surgeons recommended AI only but suggested I have a conversation with ROnco… which I did… the standard fraction protocol was recommended… 5 days x 5 weeks. But the character of my BC suggested that radiation may not be necessary based on the TAILOR RT trial requirement. Bottom line; the rad oncologist who recommended the standard protocol called me up, was excited about my participation in a clinical trial, wished me well and “ hoped” I was randomized into the AI only group as she knew I preferred that course.

Ultimately I was eliminated for a reason not related to my BC characteristics…

Believe me, I was offered EVERYTHING! No barrier to any treatment I would choose. They will even reconstruct the healthy breast if I wanted that. All legally mandated through the ACA that Obama Sugned into law. It’s an extraordinary opportunity for women right now.

Thank you for your concerns. Blessings🌸

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@vivi1

While understanding that radiation has its medical demerits, I question this recommendation as possibly ageist and $$$ oriented. While mortality may not decrease for those with early stage BC who do not choose radiation at age 70 and above, recurrence risk remains and may even increase with age. So if you have a lumpectomy at 70 with no cleanup radiation, how about the possibility of mastectomy at 75 or 80, especially if a woman cannot tolerate AI's? https://pubmed.ncbi.nlm.nih.gov/32441018/
There is no doubt that no radiation and AI's are less expensive than radiation treatments, a cost analysis benefit which insurance and hospitals no doubt prefer. I recommend checking with your BC surgeon, medical oncologist, and radiation oncologist when making this important decision.

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I had the same exact same thoughts....that not recommending radiation for breast cancer for older women was, essentially, writing them off or some 'economic triage' thing as recommended by policy advisers (Ezekiel Emmanuel and Cass Sunstein opinions come to mind).

And there might well be an element of that but both oncologists I saw noted that the NCCN revised guidelines were very specifically aimed at 'low risk' cancers that have better treatment options. And the NCCN guidelines still recommend radiation for older women with breast cancer for other kinds, and stages and grades, of cancer.

And the NCCN guidelines don't suggest an oncologist not recommend radiation even in low-stage ER+ small tumors. They just revised the guidelines to suggest that radiation no longer be automatically, or dogmatically, recommended in all of these cases as had been the previous policy.

I'm sure that the economics of health care for older patients (and maybe especially women as I didn't see a 'softening' of prostate cancer recommendations) continue to be a hot issue but am thinking that the NCCN guidelines are aimed at better medical decisions which aim to prevent rigorous over-treatment and overlook not-uncommon toxic side effects therefrom.

And there's some encouragement in the medical establishments increasing respect for the human body's own propensity to heal if not sledge-hammered by medical protocols that are proving to be effective at lower, gentler levels in some cases.

At least that's my thought after an early skepticism about possibly 'writing off' the elderly. I have an economics background and read much of the arguments 'against the too-expensive to treat' arguments that, in my jaundiced opinion, border on sanctioned elder abuse. But I think the NCCN policies are defensible as just better medicine?

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@callalloo

I had the same exact same thoughts....that not recommending radiation for breast cancer for older women was, essentially, writing them off or some 'economic triage' thing as recommended by policy advisers (Ezekiel Emmanuel and Cass Sunstein opinions come to mind).

And there might well be an element of that but both oncologists I saw noted that the NCCN revised guidelines were very specifically aimed at 'low risk' cancers that have better treatment options. And the NCCN guidelines still recommend radiation for older women with breast cancer for other kinds, and stages and grades, of cancer.

And the NCCN guidelines don't suggest an oncologist not recommend radiation even in low-stage ER+ small tumors. They just revised the guidelines to suggest that radiation no longer be automatically, or dogmatically, recommended in all of these cases as had been the previous policy.

I'm sure that the economics of health care for older patients (and maybe especially women as I didn't see a 'softening' of prostate cancer recommendations) continue to be a hot issue but am thinking that the NCCN guidelines are aimed at better medical decisions which aim to prevent rigorous over-treatment and overlook not-uncommon toxic side effects therefrom.

And there's some encouragement in the medical establishments increasing respect for the human body's own propensity to heal if not sledge-hammered by medical protocols that are proving to be effective at lower, gentler levels in some cases.

At least that's my thought after an early skepticism about possibly 'writing off' the elderly. I have an economics background and read much of the arguments 'against the too-expensive to treat' arguments that, in my jaundiced opinion, border on sanctioned elder abuse. But I think the NCCN policies are defensible as just better medicine?

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You state the issues well. The NCCN guideline is to "consider" omission of irradiation for locoregional treatment for patients 70 or older with early stage negative node invasive breast cancer after breast conserving surgery (not mastectomy) who receive endocrine adjuvant therapy. It seemed to me that the dropping of radiation is based on mortality from metastatic spread, and, as you say, on lessening harmful medical treatment where advisable. But my questions are--what if the patient can't tolerate an aromatase inhibitor, and would such an omission incur greater risk of locoregional recurrence that would lead to more surgery and even radiation at a later age when it would be harder to endure? Like you, I have read research on this subject that discusses costs, which I find objectionable and ageist. As always, it is up to the individual woman to weigh benefit and risk and feel comfortable with those choices. Good discussion!

REPLY
@callalloo

Aha, a hair question. As someone whose stylists complain has 'too thick' but healthy hair, here's some of what I learned while keeping it that way.

Biotin Forte (brand name) was recommended on some post-chemo website and got great reviews on Amazon. A male friend stopped losing hair when I gave him a few bottles when he was in physical rehab for several months after an accident. I use it but haven't noticed a big difference but also haven't lost hair while getting old-er.

There are two Biotin Fortes on the market the last time I checked. The recommended one has zinc as well as Biotin. Another product that some people swear by Viviscal (sp?). It is also biotin-based but costs a lot more.

Alternatively, look for any good 'hair, skin and nails' supplement (from a reputable, established manufacturer) that includes biotin, zinc, silica and trace minerals. Also, use a clarifying shampoo once every few weeks to help prevent the build-up of hair product residue on scalp and hair follicles. Then once a month or so if still using a lot of hair products, especially anything with silicones and other non-water-soluble ingredients.

Try to use simple-formula, water soluble shampoos that clean hair but rinse thoroughly. Trader Joe's sells a body-and-hair 'shampoo' that seems to work well. Don't use Wen or similar 'clean and condition' 'one-products' unless checking them against FDA consumer complaints lists. [Wen is the target of multiple class action lawsuits for causing balding.] I'm a fan of Ketastase shampoos. They clean well with a very small amount of shampoo and fully rinse out.

There are a lot of new peptide-based products for hair and scalp that seem to help. Deciem's The Ordinary's hair and scalp peptide stuff gets solid reviews and is under $20. Worth a try and free-shippinh on orders over $25. I was curious, tried it for a week then forgot, and my hairdresser later noticed a small clump of 2" long hair where I'd been applying it. It can't hurt to try it and Deciem has a really generous return policy. [I'm a fan of their no-frills products that include a healthy amount of active ingredients and no nonsense.]

The less stress on hair the better. If you're not already using one, a Wet Brush is a necessity. The less heat damage the better so, if you can, air-dry after shampooing. Or wrap in large microfiber towel to dry. Wet hair is somewhat fragile so the less done to it, the better.

I've never done this, but a natural blonde friend only cleans her hair with a baking-soda-and-water slurry and has beautiful hair. She said it took a month or so of a rough period of adjustment. These are some ideas that might help...

Jump to this post

Apologies for such a long post on hair stuff. But it's info I gathered for a friend dealing chemo-induced hair loss a few years ago so just posted it in case it would be generally helpful.

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