What helps prevent recurrence of endometrial cancer?

Posted by pangasinan143 @pangasinan143, May 28 12:26pm

I want to know more about endometrial cancer
* post treatment
* prevention of recurrence

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for juliejane @juliejane

@ffr I am in the same boat but 2 and a half years out from last treatment. I lost my original care team due to my insurance. Unable to switch because of my diagnosis and being 72. Do you still have your port?

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@juliejane
My port was removed about two years after treatment ended. I was afraid that it would be a jinx to let it go, but I had bumped it so hard that it moved and I saw stars, so my oncologist finally convinced me to get it out. (Insist on anesthesia if you decide to let it go!)
I have had two different oncologists since then, due to the nature of medical groups in the USA these days. I am 71 & facing my 6 month CT later this week.

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Profile picture for ffr @ffr

If only we knew how to prevent recurrence! The theory is healthy lifestyle via diet & exercise, which I try for, but it seems like recurrence is such a crapshoot. And my brain often tells me that if my time is short then I should enjoy the foods that I like. I am almost 4 1/2 years post diagnosis with an 50/50 outlook and 4 years post recurrence with a high grade endometrial cancer. Needless to say, I expect the bomb to drop at any time. My 6 month CT and oncologist visit are coming up, so let the scanxiety begin.

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@ffr I get it. If only we had a step-by-step manual for the prevention of recurrence or new cancers. I also feel, sometimes, like you that I want to enjoy the lifestyle and foods while I can and throw the healthy stuff out the window. But, here's something one of my doctors told me. All of my efforts also help to prevent cardiovascular disease which is far more common in my age group (I'm 74 years old). My mother had congestive heart failure and I've seen many people over the years who have had strokes and lived with disability. So, I'm trying to open up to other positive effects of a healthy lifestyle. At my last visit my doctor told me - "consistency is the key".

I appreciate how active you are in Mayo Clinic Connect. So, please remind myself that your sisters are here with you. We get it. And we understand the scanxiety.

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Profile picture for carointheuk @carointheuk

@naturegirl5
Hi, "Yes", I had the full external beam radiation package, the last two weeks of which were gruelling as I was constantly worried about whether I'd manage to have an empty bowel and full bladder at the right time of day. It also left me with a sensitive bowel and constant burping (which I keep under control with organic kefir). The recurrence is not in the usual vaginal spot, the cuff, but 'introitus', right at outer edge where the vagina meets the vulva, right close to the anus. A CT scan, (chest, torso, abdomen) which was not low enough in the abdomen to register the cancer, was NEF for other mets. I don’t have the results of an abdominal MRI yet but a hysteroscopy and excision with Fenton's flap, are booked under a spinal tap, for 19th July with same-day discharge. Because of the proximity to the anus and mild IBS caused by the external beam, both the surgeon and I are trying to avoid brachytherapy which could compromise anal function. But until the histology on the excised material is done, making clear if the cancer has gone through the vaginal wall, no decision can been made.
I would dearly love and feel reassured by, having regular Signatera tests but they're not available on available on the UK NHS and I can't afford £3k a pop. I'm looking round to get adopted by a trial! If I could have the scientific back-up of that test, I'd feel more confident about eschewing brachytherapy this time round.

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@carointheuk Whew! The radiation you had does sound grueling. While it's a good thing that the recurrence was observed it must be so tiring to go through all of this testing while you and your surgeon are trying to decide how to treat this. These next few weeks until July 19 are likely weighing on you. It's like one wants all of the information available through any means possible but it's anxiety-provoking when leading up to each and every test. Approach and avoidance - that's how I look at this and I've certainly felt that way. I never "want" to avoid appointments and more testing but the anxiety that's generated by all of this certainly "tells" me to run away.

My husband is a pathologist (now retired). He says that many of these "blood biopsies" such as the Signatera test are not particularly reliable. Actual observation through surgical biopsies and imaging are more so. I've read scientific articles on this topic of liquid biopsies and while the Signatera is used for gynecological cancers there is more research available for some cancers than others. So, liquid biopsies can be a useful adjunct but the results generated by the Signatera should not be considered diagnosistc without additional information such as a tissue biopsy. If you are interested, I can dig up the article I read however here is what the College of American Pathologists has on this topic:

College of American Pathologists, The 'Liquid' Biopsy:

-- https://www.cap.org/article/the-liquid-biopsy/

From what you've shared, waiting for the read on the slides by pathology will be key in figuring out what is next. The manner you write about your own history and results makes me think you are a scientist or have a medical background.

What does your surgeon/oncologist say about the utility of Signatera testing?

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Profile picture for ffr @ffr

If only we knew how to prevent recurrence! The theory is healthy lifestyle via diet & exercise, which I try for, but it seems like recurrence is such a crapshoot. And my brain often tells me that if my time is short then I should enjoy the foods that I like. I am almost 4 1/2 years post diagnosis with an 50/50 outlook and 4 years post recurrence with a high grade endometrial cancer. Needless to say, I expect the bomb to drop at any time. My 6 month CT and oncologist visit are coming up, so let the scanxiety begin.

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@ffr You are doing great! Wish it was easier to stay healthy but that is not the boat we are in. Keep your chin up!
I agree that those scans are a tough mental trip. Wishing you continued good health and peace.

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Profile picture for inquirer @inquirer

I try to create an environment in my body where cancer is less likely to grow by taking supplements. I try to avoid "snake oil" treatments and know nothing will be a total cure, but I posted and combed through sites like this and identified supplements that PEOPLE WITH NO RECURRENCES take. No one knows if the supplements truly were the reason for their success, but I generated a very extensive list then reduced it to a few based on my own research and people's stated experiences.

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@inquirer Can you share the list of supplements you have chosen? I find conflicting information when I search the web. One doctor says anti-inflammatories can cancel out anti-oxidants, I really do not think that enough is known about how different supplements work to make that statement.
Any feedback is appreciated!

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These are my personal notes from research on supplements. Each is listed with the amount taken (for example "[8p2x Empty]" = 8 pills 2 times per day on an empty stomach) and a reminder to myself of why I was taking it. My goal was to slow the growth while waiting nearly 2 months for surgery. After surgery, I was diagnosed stage 1a.
Of course, none of these can be proven to have played a role.

LEADING UP TO SURGERY:

** [8p2x Empty] IP6 Gold w Inositol
"Reduce tumor growth and cancer cell proliferation"
** [1p1x Empty] EGCG (Life Ext decaf)
"Promote cancer cell death and inhibit growth"
* [10g2x Empty] Colostrum (Anovite)
"limited trials show anti-cancer effect"
** [1p2x] BioPerine, iherb
"To enhance absorption of supplements]
** [4p3x] GZFL "Proven in trials to reduce OC size"
** [1p1x] Turmeric (Now CurcuBrain Longvida)
"kill cancer cells and prevent growth"
** [1p4x Food] Tumeric (Now curcumin Meriva)
"kill cancer cells and prevent growth"
** [2p1x Food] Kirkland Tumeric
"kill cancer cells and prevent growth"
** [1p1x Food] Kirkland Fish Oil Omegas
"inhibit formation of new blood vessels in tumors"
** [1p1x Food] D3 Cstco Ntr Bnty
"Reduce cancer mortality"
** [1p6x] Flaxseed oil, Erewhon
"Promote cell death in late stage OC"
** [1p1x] Claritin
"Improve survival outcomes"
* Essiac Tea
"Has natural anti-cancer agents"
(Jeans Greens, 1-888-845-8327) drink 4oz 2x/day on chemo & 2oz 2x/day for life Note: (http://www.rem tvedies.net or Shoppers Drug Marts in Canada or Elaine Rylin in Roundup, MT 406-323-2201)
** Mineral Water naturally filtered and sourced to retain minerals
"Cancer survivor in Radical Remission" (Ex Mountain Valley & Mountain Falls)
* Ginger Tea
"kills OC cells" Fresh ginger root; Cut 25 1/2" cubes; Boil in 7 cups water; Stew for ~hour; Strain out cubes; ACV for taste; Store in fridge; drink 1 warm cup per day:

AFTER SURGERY:

** IP6 Gold w Inositol
** GZFL
** Essiac Tea
** Mineral Water naturally filtered and sourced to retain minerals
** Ginger Tea

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Profile picture for inquirer @inquirer

These are my personal notes from research on supplements. Each is listed with the amount taken (for example "[8p2x Empty]" = 8 pills 2 times per day on an empty stomach) and a reminder to myself of why I was taking it. My goal was to slow the growth while waiting nearly 2 months for surgery. After surgery, I was diagnosed stage 1a.
Of course, none of these can be proven to have played a role.

LEADING UP TO SURGERY:

** [8p2x Empty] IP6 Gold w Inositol
"Reduce tumor growth and cancer cell proliferation"
** [1p1x Empty] EGCG (Life Ext decaf)
"Promote cancer cell death and inhibit growth"
* [10g2x Empty] Colostrum (Anovite)
"limited trials show anti-cancer effect"
** [1p2x] BioPerine, iherb
"To enhance absorption of supplements]
** [4p3x] GZFL "Proven in trials to reduce OC size"
** [1p1x] Turmeric (Now CurcuBrain Longvida)
"kill cancer cells and prevent growth"
** [1p4x Food] Tumeric (Now curcumin Meriva)
"kill cancer cells and prevent growth"
** [2p1x Food] Kirkland Tumeric
"kill cancer cells and prevent growth"
** [1p1x Food] Kirkland Fish Oil Omegas
"inhibit formation of new blood vessels in tumors"
** [1p1x Food] D3 Cstco Ntr Bnty
"Reduce cancer mortality"
** [1p6x] Flaxseed oil, Erewhon
"Promote cell death in late stage OC"
** [1p1x] Claritin
"Improve survival outcomes"
* Essiac Tea
"Has natural anti-cancer agents"
(Jeans Greens, 1-888-845-8327) drink 4oz 2x/day on chemo & 2oz 2x/day for life Note: (http://www.rem tvedies.net or Shoppers Drug Marts in Canada or Elaine Rylin in Roundup, MT 406-323-2201)
** Mineral Water naturally filtered and sourced to retain minerals
"Cancer survivor in Radical Remission" (Ex Mountain Valley & Mountain Falls)
* Ginger Tea
"kills OC cells" Fresh ginger root; Cut 25 1/2" cubes; Boil in 7 cups water; Stew for ~hour; Strain out cubes; ACV for taste; Store in fridge; drink 1 warm cup per day:

AFTER SURGERY:

** IP6 Gold w Inositol
** GZFL
** Essiac Tea
** Mineral Water naturally filtered and sourced to retain minerals
** Ginger Tea

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@inquirer
Thanks so much for taking the time to share your protocol. I am very impressed that you have not continued with a grocery bag full of supplements post surgery. You are very fortunate that you had surgery while the tumor was in an early stage. My tumor was not found until stage 4b, so I have a grocery bag full of supplements in an effort to stave off reoccurrence. I will be studying your list to see if I should add anything to my protocol. Thanks again!

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Profile picture for beebe @beebe

@inquirer
Thanks so much for taking the time to share your protocol. I am very impressed that you have not continued with a grocery bag full of supplements post surgery. You are very fortunate that you had surgery while the tumor was in an early stage. My tumor was not found until stage 4b, so I have a grocery bag full of supplements in an effort to stave off reoccurrence. I will be studying your list to see if I should add anything to my protocol. Thanks again!

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@beebe Your welcome. After surgery, I reduced the list to the core items I believed played the biggest role. For example, one poster said she relied heavily on tumeric to fight her cancer after her debulking surgery, and took it religiously for a year. Afterwards, she was surprised when the doctor found "tumors everywhere". Maybe the tumeric still helped in some small way, but I lost confidence and removed it. On the otherhand, a poster told a story of her doctor being surprised that her tumors had shrunk, and had no explanation for it. She, on her own, was taking IP6 Gold. The final list was tailored based on stories such as these.

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