NED from Stage IV metastatic endometrial cancer

takingcontrol58

Hi,

This is my first posting to this site.  After reading many of the entries on this site, I felt I had to join.

 

August 2014 - experienced post-menopausal bleeding - had ultrasound- endometrial
lining was .8-.9cm-double what it should be(normal is .4cm)

Sept 2014 - endometrial biopsy was not totally conclusive but precancer found-
recommended repeat of test or D&C

October 2014- diagnosed with Grade 3 endometrioid endocarcinoma with a D&C.  (endometrial cancer)

November 2014- total hysterectomy, plus removal of ovaries, fallopian tubes, cervix, 11 lymph nodes, part of omentum and perirectal tumor <1cm, cancer went into lymphatic system.Staged as Stage IIIb,Grade 3.

January 2015- CT scan prior to recommended treatment of radiation and chemotherapy.

Cancer had metastasized to liver, spleen, vaginal cuff/outer rectum (5cm) plus nodules on lung, spleen, kidneys &outercolon- 34 cm of measurable tumors in total - two months after surgery priorto any treatment - MSK radiologist told my husband he believed I had 4-6 months to live.  Now Stage IV. No radiation.
Was told radiation destroys the liver.

My gynecological oncologist/surgeon recommended I meet with integrative oncologist, Dr. Mitchell Gaynor (NYC) - He wrote The Gene Therapy Plan - he saved my life. He died a few weeks after I went into complete remission. 

January  30, 2015- started chemo infusions at MSKCC of Taxol/Carboplatin-joined a trial that added metformin or placebo to Taxol/Carboplatin treatment
(may have been getting a placebo-will find out when trial ends in Sept 2019)

end of February 2015- met with Dr. Gaynor, after 2 chemo infusions - tested various blood markers- were extremely high - CA125 was 280 (there are many other cancer markers that I am tested for regularly ).  

Dr. Gaynor put me on the real metformin because I am insulin resistant (and metformin is known to have anticancer properties for many types of cancers)
I removed myself from the trial at MSKCC.  Metformin was discovered in the 1950s- approved in 1995 by FDA. 125Million people around the world take drug for
diabetes and insulin resistance plus a few other conditions, like PCOS, and has been known for quite some time to have anti-cancer benefits for
some of the most popular cancers. Dr. Gaynor also put me on 34 supplements.

Mid-March 2015- third chemo infusion. 

March 23, 2015 -  met with Dr. Gaynor after 3 chemo infusions and one month on metformin- CA125 was down to 20

March 31, 2015- another CT scan- went from 34cm of tumors to 4cm- MSKCC could not explain why

April - May 2015 -Had remaining  3 chemo infusions of Taxol/Carbo

June 2015-  another CT scan - now down to 2cm of tumors (on spleen and rectum). MSKCC wanted to give me up to 4 more chemo infusions- I refused.

Dr. Gaynor increased my dosage of metformin and added 9 more supplements to my regimen.

August 2015- PET/CT declared NED, two weeks before Dr. Gaynor died. 

 You can research thousands of articles on metformin at www.pubmed.gov (National Insititutes of Health).
One of the articles calls metformin a "magical" drug. Made from the French lilac.

My surgeon had genomic testing performed so I was able to research that metformin targets two of those mutations, for which there are no
successful targeted therapies yet, except Everolimus was recommended for one of my mutations by my integrative oncologist but I refused
it because the metformin was working so well.

If you have advanced or metastatic EC, I believe you have to attack cancer from many directions. You have to correct the issues that are
driving YOUR cancer. You have to address theroot causes of your cancer.  I stopped eating processed food, eliminated almost all sugar
(I was a sugar junkie), eat mostly organic, hormone free meat and chicken, drink only purified water, walk 2 miles five days a week, 
and cut out 99% of the wine I was drinking, also down 40 pounds. 

I also take 1 low dose aspirins each day along with the metformin and supplments. I also get monthly massages using frankencense oil. You
need to figure out the causes of your cancer and address your underlying health issues. I figure you have to get back to your healthier self,
prior to when you had cancer. You have to figure out what was fueling your cancer. For me, I believe it was my high insulin growth factor-1 
(IGF-1), high serum insulin and high iron levels (ferritin). Every cell in the body needs iron to divide, and cancer cells are dividing rapidly.
Cancer cells have an enhanced dependence on iron relative to normal cells- a term called iron addiction. High iron levels are seen in many
patients with cancer.

There is no one single treatment that will heal you. You have to address all your own health issues to fight your cancer, or at least those you
have control over. And you have to boost your immune system (I do this with supplements and my healthy diet). Standard cancer
treatments are only a small part of the picture. You need a comprehensive plan to heal cancer and you have to follow it for the rest of your life.

Goal is to remain in remission.  Last chemo May 2015.  Continue to take metformin, aspirin  and 44 different supplements each day, 
have maintained my ideal weight, exercise everyday and eat a healthy organic diet.

Still NED as of February 2020.  It is now five years since I began this journey.

Hope this helps some of you looking for other solutions. My message is you can heal metastatic cancer.
takingcontrol58

 

TeddyandBears_Mom

thanks for joining

wow, what a journey you have had!  and quite different than anything else I have seen.

thanks for taking the time to document your treatment. that really is amazing.

so glad you are NED and I pray that you stay that way!

Love and Hugs,

Cindi

EZLiving66

 I'm always glad to hear

 I'm always glad to hear "NED" especially from a Stage IV diagnosis!!  You sure have been through a lot in a short time but things seem to be going your way.  I have just been prescribed Metformin for my high A1c caused by the chemo.  Hopefully it will keep my UPSC from spreading!!!

Love,

Eldri

molimoli

Priceless.

Takingcontrol58 your information is priceless Thanks for sharing.  I wish you continued positive progress. Welcome to the board .

Moli

Cucu me

Welcome

and WOW, such a story!

Copy and paste your whole post in "About me " place, so more people can see it.

Your case is like miracle.

I read about few doctors treating patients with alternative methods died in 2015

and I'm very sorry for them.

I'm stage 4 too, finished chemo in October and so far ok with some complains.

My next scanner is in March, so we'll see.

I'll deffinately have in mind metformin.

Thanks for sharing

BC Brady

Thank you so much for this!

I am so thankful for this site. The fact that you are willing to share your experience is so informative. My genetic testing was so discouraging - 3 markers and no therapies - one with all the worst stats attached to it. But I am living on the "I am a statistic of ONE" mantra and will never stop questioning my treatment.

At Roswell, no one is talking to me about supplements. I will ask about the metformin, but would you mind sending a list of the supplements you are on? I would like to ask my doctors specifically. When asked, they don't offer - they say I'm doing everything I need to do. Maybe if I asked more specifically they would offer some support. 

takingcontrol58

BC Brady said:

Thank you so much for this!

I am so thankful for this site. The fact that you are willing to share your experience is so informative. My genetic testing was so discouraging - 3 markers and no therapies - one with all the worst stats attached to it. But I am living on the "I am a statistic of ONE" mantra and will never stop questioning my treatment.

At Roswell, no one is talking to me about supplements. I will ask about the metformin, but would you mind sending a list of the supplements you are on? I would like to ask my doctors specifically. When asked, they don't offer - they say I'm doing everything I need to do. Maybe if I asked more specifically they would offer some support. 

To "Thank you so much"

Brady,

I take so many supplements that I can't list them all here.  Many I took focused on the immune system and liver, my hair, my brain, anti-bacterial, anti-fungal and canti-ancer specific. 
Curcurmin, resveratrol, garlic, oil of oregano, bosswelia (frankencense, like the wise men's gift), arteminisin (used today to treat malaria), graviola and medicinal mushrooms (Maidake-D
fraction, Shitaki, Chaga).  Also Krill oil and Vitamin D3. Just to name a few.  Excellent book to read is Natural Strategies for Cancer Patients, by Russell Blaylock.

Also take two low dose aspirins a day. One in AM, one in PM. Aspirin inhibits COX2 enzyme, which causes inflammation. That's why cardiologists recommend to their heart patients. Plus
aspirin thins the blood- cancer patients have thicker blood, which is why heart patients take as well. Talk to your doctor.

I never once got sick on chemo- never had nausea or threw up -still have my original bottle of Zofran.  White blood counts never dropped so didn't haveto take Neulasta or Neupogen,
which have their own bad side effects. I think the supplements helped me never get sick.

You should viisit with a naturopath or integrative doctor who specializes in these supplements as you need to take what would be relevant to your situation.  Plus you need certain
formulations to be effective. I wouldn't just go out and start taking supplements without the supervision of a doctor.  My  integrative doctor was a molecular biologist.

A site that is very useful is www.thetruthaboutcancer.com.  They have a 9-part video series you can watch.  You can learn all about the history of the cancer industry and
many of the alternative solutions available.  They typically post about alot of different types of supplements.  Also www.lef.org, which is where I first learned about metformin.
Very informative site.  You can sign up and receive their magazines which delve into all the various supplements.

Also, what were the mutations you had on your genomic testing?

Takingcontrol58 

Ilda28

takingcontrol58 said:

To "Thank you so much"

Brady,

I take so many supplements that I can't list them all here.  Many I took focused on the immune system and liver, my hair, my brain, anti-bacterial, anti-fungal and canti-ancer specific. 
Curcurmin, resveratrol, garlic, oil of oregano, bosswelia (frankencense, like the wise men's gift), arteminisin (used today to treat malaria), graviola and medicinal mushrooms (Maidake-D
fraction, Shitaki, Chaga).  Also Krill oil and Vitamin D3. Just to name a few.  Excellent book to read is Natural Strategies for Cancer Patients, by Russell Blaylock.

Also take two low dose aspirins a day. One in AM, one in PM. Aspirin inhibits COX2 enzyme, which causes inflammation. That's why cardiologists recommend to their heart patients. Plus
aspirin thins the blood- cancer patients have thicker blood, which is why heart patients take as well. Talk to your doctor.

I never once got sick on chemo- never had nausea or threw up -still have my original bottle of Zofran.  White blood counts never dropped so didn't haveto take Neulasta or Neupogen,
which have their own bad side effects. I think the supplements helped me never get sick.

You should viisit with a naturopath or integrative doctor who specializes in these supplements as you need to take what would be relevant to your situation.  Plus you need certain
formulations to be effective. I wouldn't just go out and start taking supplements without the supervision of a doctor.  My  integrative doctor was a molecular biologist.

A site that is very useful is www.thetruthaboutcancer.com.  They have a 9-part video series you can watch.  You can learn all about the history of the cancer industry and
many of the alternative solutions available.  They typically post about alot of different types of supplements.  Also www.lef.org, which is where I first learned about metformin.
Very informative site.  You can sign up and receive their magazines which delve into all the various supplements.

Also, what were the mutations you had on your genomic testing?

Takingcontrol58 

where do u buy your supplements from ?

takingcontrol58

Ilda28 said:

where do u buy your supplements from ?

Supplements

I get my supplements at Vitahealth Apothecary in NYC    212-628-1110. They ship them to me.

 

Takingcontrol58

Ilda28

takingcontrol58 said:

Supplements

I get my supplements at Vitahealth Apothecary in NYC    212-628-1110. They ship them to me.

 

Takingcontrol58

Oncologist at SK

Taking control, who was your oncologist at SK ?

Now that doctor Dr. Mitchell Gaynor no longer lives, is there another doctor who recommends the supplements?

pgdaughter

Type of endo ca?

Hi takingcontrol58

Could I ask what type of endo cancer did you have? My mother has serous and I'm wondering if the metformin would be effective for her.

 

 

 

pgdaughter

takingcontrol58 said:

Type of endo cancer

I was diagnosed with endometrioid adenocarcinoma, but my surgeon thought it might be serous
because it was so aggressive. It was Grade 3 and growing very fast.  Did your mother have genomic testing performed?

Metformin is very effective for mutations on the P13K/Akt/Mtor pathway. Metformin inhibits the pathway-
My mutation activated this pathway.   PIK3CA, PIK3R1 (a mutation I had) and PTEN. These are all on this
PI3K pathway. If you know your mom has one of these mutations, metformin could be very effective.

If your mom has borderline high glucose levels, high levels of IGF-1(Insulin Growth Factor), which usually raised
at a diagnosis of endometrial cancer or is overweight, I would talk to her doctor about getting on the drug.
If she is diabetic and taking another diabetes drug, you should ask about getting her switched to metformin because
it is the only diabetes drug that has anti-cancer properties.  It also stops angiogenesis, which is the creation of new
blood vessels which exist if you have metastasis. The blood vessels feed the cancer cells so they can grow into a new tumor.

Serous also has mutations of TP53- metformin restores TP53 expression.

There is no harm in trying the metformin- she has nothing to lose.

Takingcontrol58

Will talk to doc

Thanks takingcontrol58. Wasn't aware of Metformin's benefits to such extent. I'll read into it and bring up with the onco. You are right, no harm in trying.

takingcontrol58

Articles on metformin

Pgdaughter,

If you go to the website of the National Institutes of Health, www.pubmed.gov, you will find over 3000 articles
on "metformin and cancer."

Two good ones to read are:
1) The Emerging Genomic Lndscape of Endometrial Cancer - Oct 2013 PMID 24170611
2) Metformin in cancer prevention therapy - Jun 2014 PMID 25333032

The reason metformin is so effective for endometrial cancer is because endometrial cancer cells
have a large amount of insulin receptors on their surface.

One other thing- Avastin is the drug that is also supposed to stop angiogenesis,but has some serious
side effects.  It was pulled off the market in 2010 because of the harm it was causing in breast cancer patients
and had more risks than benefits. Avastin was recommended for me because of all my metastases, but since
the metformin was working so well (after one month),I refused the Avastin.  Your doctor may recommend this drug and
may not want to prescribe the metformin. But it is your choice.  Personally, I would try the metformin first- there is much less risk.
If Avastin had such great results for advanced cancer patients, they would be giving it to everyone.

Takingcontrol58

 

Hma4

takingcontrol58 said:

Articles on metformin

Pgdaughter,

If you go to the website of the National Institutes of Health, www.pubmed.gov, you will find over 3000 articles
on "metformin and cancer."

Two good ones to read are:
1) The Emerging Genomic Lndscape of Endometrial Cancer - Oct 2013 PMID 24170611
2) Metformin in cancer prevention therapy - Jun 2014 PMID 25333032

The reason metformin is so effective for endometrial cancer is because endometrial cancer cells
have a large amount of insulin receptors on their surface.

One other thing- Avastin is the drug that is also supposed to stop angiogenesis,but has some serious
side effects.  It was pulled off the market in 2010 because of the harm it was causing in breast cancer patients
and had more risks than benefits. Avastin was recommended for me because of all my metastases, but since
the metformin was working so well (after one month),I refused the Avastin.  Your doctor may recommend this drug and
may not want to prescribe the metformin. But it is your choice.  Personally, I would try the metformin first- there is much less risk.
If Avastin had such great results for advanced cancer patients, they would be giving it to everyone.

Takingcontrol58

 

I'm talking to my neologism

I'm talking to my neologism also, about the metformin- Stage3 grade 2/3 endometrial adrenocarcinoma- diagnosed June 2016- I go Friday for my first follow up since finishing my treatment- chemo, external and internal radiation- prayers we all get through this

takingcontrol58

Type of endo cancer

I was diagnosed with endometrioid adenocarcinoma, but my surgeon thought it might be serous
because it was so aggressive. It was Grade 3 and growing very fast.  Did your mother have genomic testing performed?

Metformin is very effective for mutations on the P13K/Akt/Mtor pathway. Metformin inhibits the pathway-
My mutation activated this pathway.   PIK3CA, PIK3R1 (a mutation I had) and PTEN. These are all on this
PI3K pathway. If you know your mom has one of these mutations, metformin could be very effective.

If your mom has borderline high glucose levels, high levels of IGF-1(Insulin Growth Factor), which usually raised
at a diagnosis of endometrial cancer or is overweight, I would talk to her doctor about getting on the drug.
If she is diabetic and taking another diabetes drug, you should ask about getting her switched to metformin because
it is the only diabetes drug that has anti-cancer properties.  It also stops angiogenesis, which is the creation of new
blood vessels which exist if you have metastasis. The blood vessels feed the cancer cells so they can grow into a new tumor.

Serous also has mutations of TP53- metformin restores TP53 expression.

There is no harm in trying the metformin- she has nothing to lose.

Takingcontrol58

pgdaughter

takingcontrol58 said:

Articles on metformin

Pgdaughter,

If you go to the website of the National Institutes of Health, www.pubmed.gov, you will find over 3000 articles
on "metformin and cancer."

Two good ones to read are:
1) The Emerging Genomic Lndscape of Endometrial Cancer - Oct 2013 PMID 24170611
2) Metformin in cancer prevention therapy - Jun 2014 PMID 25333032

The reason metformin is so effective for endometrial cancer is because endometrial cancer cells
have a large amount of insulin receptors on their surface.

One other thing- Avastin is the drug that is also supposed to stop angiogenesis,but has some serious
side effects.  It was pulled off the market in 2010 because of the harm it was causing in breast cancer patients
and had more risks than benefits. Avastin was recommended for me because of all my metastases, but since
the metformin was working so well (after one month),I refused the Avastin.  Your doctor may recommend this drug and
may not want to prescribe the metformin. But it is your choice.  Personally, I would try the metformin first- there is much less risk.
If Avastin had such great results for advanced cancer patients, they would be giving it to everyone.

Takingcontrol58

 

Thanks for articles

The issue is Mum started Metformin (oral) in early December last year. At the time we were not aware of her cancer recurrence. She started to experience increasing shortness of breath and weight loss. We mistakenly associated the symptoms with Metformin since it was the only item new to be introduced in her life. We halved the dosage of Metformin and she felt better but the symptoms persisted. When she did the routine blood test and the scans and discovered the metastases to lungs she stopped the Metformin, and alleges that the shortness of breadth improved. Although the week after we felt the shortness of breadth intenstified and now we know it's due to the UPSC having spread to the lungs. 

It's all very confusing. The articles you shared and your positive experience make us want to try Metformin again. At the same time we worry if the Metformin is somehow not suited to Mum? 

takingcontrol58

Metformin

Pgdaughter,

Did your doctor discuss some of the potential side effects of metformin?
They are bloating, stomach pain/upset, diarrhea, gas, indigestion, constipation.
You shouldn't take the drug if you have kidney issues.

Make sure your mother is getting the extended release version- it will prevent some
of these issues. Maybe she was started on too high a dose.  I was started on 1000mg/day,
500MG in AM and 500MG in PM, then was moved to 1500mg/day after chemo. Ususally a doctor
will start you on a lower dose to see how you tolerate the drug.

I also understand that metformin mimics "caloric restriction", which is another of its cancer
fighting abilities, and may help you lose weight. Did she lose alot of weight or a few pounds?
Keeping a normal weight is one of the best thingsyou can do to prevent Endometrial cancer.

The only serious side effect is called lactic acidosis, where the blood becomes too acidic.
Chest pain, rapid breathing, rapid heart rate, weakness, sweating, cold and clammy skin
and unconsciousness are some of the  symptoms. You should be able to read more on
the document that comes with the prescription.

What does the doctor say?  Was it prescribed by her oncologist or a gyn or PCP? This
is one of the most prescribed drugs in the world so her doctor should be aware of the side effects.

The drug really has some great benefits.  Perhaps you can discuss the drug with a different doctor
who is more familiar with metformin.

Also, I had a few lung nodules when my cancer metastasized, but they vanished when I
started taking the metformin (I was also getting my chemo  at the same time).

 

Linda

 

 

rdifatta

Stage 4 UPSC

At this point I am confused about my treatment plan.  My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan

which was "NED".  She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week.  Met with Oncologist again prior to chemo#4, now she is hedging

about radiation; said I should have consult with Radiologist.  I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.

Can any of you describe your treatment plans and how you have proceeded?  Of course I don't "want" to have radiation; just want best chance of survival.  The literature, much of which is

dated is unclear about how to proceed.  Please help.  ROSE

Kvdyson

rdifatta said:

Stage 4 UPSC

At this point I am confused about my treatment plan.  My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan

which was "NED".  She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week.  Met with Oncologist again prior to chemo#4, now she is hedging

about radiation; said I should have consult with Radiologist.  I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.

Can any of you describe your treatment plans and how you have proceeded?  Of course I don't "want" to have radiation; just want best chance of survival.  The literature, much of which is

dated is unclear about how to proceed.  Please help.  ROSE

Radiation Experience

Hi Rose, I do not have UPSC but rather MMMT (another aggressive type). I had 28 external beam radiation treatments sandwiched between 6 rounds of chemo. I received a very low-dose of radiation targeted at: 1) the surgical margins, 2) the lymph nodes that are adjacent to the margins and 3) the vaginal cuff.

My rad-onc told me that because of the very low-dose and the specific targeting (3-D CRT), he expected no long-term side effects and only mild short-term ones (so far, he has been proven correct).

Based on that information and the aggressive nature of my diagnosis, I decided that the potential benefits outweighed the potential risks. I have no regrets with this decision. I have been NED since the end of front-line treatment (June 2016).

Everyone needs to make the right decisions for themselves. Wising you peace with whatever you decide. Kim

takingcontrol58

My Experience - No Radiation

Rose,

I agree with Kvdyson that everyone needs to make the right treatment decision for themselves.  I will give you my perspective
from a person who did not  have any radiation.  Personally, I am extremely happy that I did not have any radiation treatment,
since pelvic radiation is a bit more dangerous, as it can cause other issues and cancers.

I was initially diagnosed with Grade 3 endometrioid adenocarcinoma, which is very similar to UPSC.  It is a very aggressive cancer
and likely to recur, just like yours.  My cancer metastasized all over my body two months after surgery, before I started chemo. My only
"standard" cancer treatment was 6 infusions of Taxol/Carbo, one infusion every 3 weeks. You can see from my story above, all the other
things I do.  If you have Stage IV cancer, you have to attack cancer from many directions. Standard cancer treatment is a very small part
of that picture.

Here are some of the things you might want to consider in making your decision-

1) If you are currently NED, ask your doctor why are they recommending radiation?  My guess is that your doctor will tell you it is to kill all
those micrometastases, floating cancer cells in your body.  The reality is that our bodies create about a billion cells each day and about 1% 
can turn into cancer cells.  There is no way that cancer treatment can kill all the cancer cells in our body. That is the job of your immune
system. Though you want your "cancer burden" to be low enough so that the cancer doesn't overwhelm your immune system. But if you
are NED, you don't have a tumor burden.

2) We are told everyday that radiation causes cancer- so how is it that radiation can heal cancer if it causes cancer?  I wish I would have
asked the oncologist this question when he recommended radiation treatment for me. Radiation can cause new gene mutations that can
cause new cancer to form.

Plus radiation is cumlulative- consider all the other radiation you are getting or have had-
CT scans, PET scans, mammograms, chest X rays, the "sun." It all adds up. I don't get CT scans anymore and will only get one if it is absolutely necessary.

3) You might want to consider boosting your immune system through supplementation and an organic diet.   The only way we can all hope to
remain cancer free is to make sure our immune system is in working order. I personally use a group of supplements to boost my immune
system and an organic diet.

4) Did you have genomic testing on your tumor?  I would highly recommend you do so.  Your gene mutations can tell you what caused
you to get cancer, as genes mutate in response to a hostile environment in our bodies- the cells mutate in order to survive.  If you can
determine what caused your body to develop cancer, that is what you need to treat, the root cause of your problem.  You might find that
a more targeted treatment would be appropriate for you rather than just "generic" radiation.

5) Also, I believe once your have radiation to an area, you can't have it again, though I'm not an expert in this. Perhaps you would want
to save this treament option in case you ever might need it in the future.  Why use it when you don't have any cancer?  Give your body
some time to recuperate from all the chemo. Your body might thank you for it.

I have now been in complete remission since August 2015, and I did not have any radiation.  It is now over 3 years since I started my
cancer journey. Once I discovered all that caused my body to develop cancer, I know that radiation would have not done me any good. 
I've targeted the factors that grew my cancer and caused it to metastasize- radiation and chemo don't target anything specific.  

We need to focus on healing our cancer. I read on a natural health site that we shouldn't be fighting a war on cancer, it needs to be a
peacekeeping mission. This is so true.  We need to heal the turmoil in our bodies, not add more poison to our bodies.

 Just some food for thought.

Takingcontrol58

 

MAbound

Type of Radiation

I didn't have the sandwich treatment like Kim, but I did also have the 3D-CRT method of pelvic radiation followed by a vaginal boost with few side effects. This radiation method focuses the beams to avoid organs like the hip joints, bladder, and colon to the extent possible and seems to minimize the worst of its side effects. I'd look into if that method would be available for you.

I had my radiation after chemo instead of in the middle of it because my gyn-onc felt the radiation has an impact on the blood vessels exposed to radiation and would impede the effectiveness of chemo there where I needed it the most so there's more than one school of thought on when radiation should be given.

Chemo is systemic cancer treatment wherease radiation only treats what it's aimed at and they aim it where recurrences are most likely to occur. Because of your stage and type of cancer, both chemo and radiation are SOP. While you're being told that you are NED now, that just means there's nothing that they can detect with the test(s) you've had, but there can still be microscopic cells that won't show up until later when they've grown larger. The radiation is no guarantee that they'll get everything, but it ups your odds of remaining NED.

Did you have any genetic testing done? Given your stage and type of agressive uterine cancer you have, it seems prudent to keep going to keep this beast at bay and you may want to look into other treatment options you might be suitable for that such testing might reveal. It's good to hear you're already NED and I sure hope you stay that way for many years to come!