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Has anyone had Serous Uterine cancer + Positive Peritoneal wash and decline Radiation?

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

Hi Ladies

I was just at my Post op check up appt today and they said they want to go with the 25 full torso radiation treatments and the 3 rounds of Chemo because my UPSC was in the Uterine lining as well as a tumor inside 4.5 cm. It had not gone into the muscle or middle layer of the Uterus. It was not in my lymph nodes and all was contained (So was Stage 1A) they thought till the Peritoneal Cytology came back malignant. My Dr., being old school, follows the original protocol that caused it to be Stage IIIA Because of it being the highly aggressive type, they being my Surgeon Obgyn Oncologist, wants to be super aggressive from his experience. I have just heard too many horror stories for radiation of that level basically burning out their insides--bladder--colon and more. I am scared and not sure what to do. They said at the Drs that if no treatment is about a year? But that even with treatment at the level, full blast, that it a lot of times MOST of the time comes back in 3 to 5 or 6 yrs to start all over again.... but the recovery from 1st treatment will not even be resolved/healed (if at all possible even) before it comes back basically. So please tell me if anyone here did not op to go through the full treatment and have the Malignant Cytology and how you are doing also if you did have the same but DID do the full treatment and how you did, I am young and this hit like a ton of bricks. I have always been active a fitness freak Body builder so this all make no sense to anyone! I had not even gone into menopause yet,,,, Now they think it maybe a side effect of the radioactive dye I had muiltiple times and damaged my kidneys causing Toxicity. UGH I have a 5 acre farm of Horses and cat rescue that I have no help with and I cannot be down,,, I only took a few days off for the surgery so I am not one to lay around.  I understand with the treatment it is rough and leaves no options but to lay down. So any input is appreciated! Thank you so much. Trying to stay positive but looking at it realistically as well

God Bless and prayers for us all in Healing!

   Hugs
~Diane

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

My UPSC was only a tiny bit in uterine(1A) so after hysterectomy, I was not interested in chemo and rads. However, after asking the advice of ladies on this board, I did chose to do 3 carbo/toxol and 4 brachys as doc was worried about vaginal cuff. That was 2017. 2018 had lesion on cuff so did 25 pelvic and 4 more brachys and cisplatin. 2019 had sac in vagina that was removed by surgery. 2020 has metastized to peritoneam. Choosing to do no more treatment as for now am feeling fine with no side effects. I am incontinent, but am also 80 years old. Had no problem during rads. I always bounced back from all treatments and returned to normal living. I was also on a farm with horses so I understand how you roll. Hopefully more ladies will chime in. But UPSC is a booger and it may be best to have a second opinion.  Good luck as you wage this battle.

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

I do hope you are well and thank you so much for your input!  God Bless and Happy Thanksgiving to you!!

MAbound
Posts: 1098
Joined: Jun 2016

Don't beat yourself up about how/why you got UPSC. It is not hormone driven, so it doesn't care if you are younger, active, slim or anything else. There is nothing you did wrong to cause it, and it is totally unfair that you got struck by this particular bolt of lightening.

That said, UPSC is particularly stubborn about recurring, even when it is caught early. But it is not hopeless if you go after it with both barrels blazing during frontline treatment. With your pathology, I have to confess that I am a bit surprised that only 3 rounds of chemo are being proposed for you instead of the usual 6. That's what's considered the gold standard or sweet spot for chemo treatment and why, if I were you, I'd get more than one opinion as to how to proceed for your circumstances. If you are going to save radiation for a recurrence, it makes getting adequate chemo that much more important because it has a better chance of getting cancer cells that have traveled elsewhere in the body as its presence in the peritoneum has shown to be the case for you. 

Different doctors have different practices, experience, and philosophies for treating uterine cancer. Be certain that you are getting opinions from gyn-oncologist(s) who have more experience with UPSC than others. It's a rare cancer and not all gyn-oncs have extensive experience treating it. They are more likely to be found at centers known for treating cancer. I don't know what you have available around you, but it is possible to consult with such doctors remotely when traveling to them is not an option. Dana Farber, near me in Boston, has such a remote consultation program and they are the #4 ranked hospital in the US for this kind of cancer. I believe others have said that MD Anderson in Houston, TX also does this and they are the #1 ranked hospital.

As far as radiation goes, I had the 25 rounds of pelvic radiation. Radiation delivery is much improved over what it was like in the past and most of us find it a breeze to get through compared to chemo. Don't listen to others stories about it because they are more than likely really out-of-date for how things are now. Frontline treatment is your best shot for a cure of this cancer, so you want to do all that you can now so that you don't have regrets later. There will still be some fatigue and probably issues with diarrhea or constipation, but at your age and fitness level, it probably wouldn't seem that bad to you. It's very doable, but it is a localized treatment that you can only have once to any given area, so some people do save it to use for if/when they have a recurrence. You really need opinions from other oncologists to understand the pros and cons of it for your particular pathology.

As much as you clearly love your animals and they depend on you, you have to take care of yourself first now in order to be there to continue to take care of them. Please contact other charities or media for outreach in finding help to get through this if you truly have no one else to help you. There are a lot of animal lovers out there that I'm sure would be willing to step up, especially during this season of giving. Let yourself be surprised by the goodness in others who only need to be made aware of your need.

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

Hope you are doing well and thank you again and Happy Thanksgiving!

Maxster
Posts: 61
Joined: Apr 2020

I too had UPSC and was advised to take an aggressive approach to treatment because this is an aggressive cancer.  I had 6 rounds of chemo and 25 rounds of pelvic radiation.  It is a pretty standard treatment though brachytherapy of 3-4 rounds had been initially recommended.  I had a suspicious lymph node that the radiation oncologist saw and recommended the pelvic route.  I had a second opinion at Memorial Sloan Kettering in NYC, the No.1 ranked center.  I also had radiation done at UW-Madison (WI) in order to have a specialist. I was more afraid of the radiation than the chemo.  I think I had heard horror stories as a child.  It has much improved through the years.  Anyway the side effects were not bad at all.  Much easier than the chemo because I really had no down time of excessive fatigue.  I had some temporary urgency with urinating and diarrhea but that disappeared a few weeks after treatment ended.  It is great that you are active!  That help with getting through treatment.  I encourage you to exercise as much as you can.  I am 72 so I was no spring chicken when this happened and am optimistic for you.  Memorial does virtual consultations.  You may want to check out what your insurance will cover and go that route.

Diane The Fighter's picture
Diane The Fighter
Posts: 15
Joined: Oct 2020

Hope you are doing well and thank you for the ideas to look into and sharing your experiences. Happy Thanksgivivng!!

 

kansasgal's picture
kansasgal
Posts: 125
Joined: Aug 2009

Hi, Diane!

My diagnoses and treatments all occurred in 2009. I have had no recurrences. A local gyn/onc performed a vertical abdominal radical hysterctomy with bilateral salpingo-oophorectomy following a D&C which found grade 1 endometrioid adenocarcinoma. My final post-hysterectomy pathology report additionally found grade 2 endometrioid adenocarcinoma at stage 1B plus grade 3 UPSC at stage 1A in several sections of my uterus. Only 9 lymph nodes were taken and examined. None contained cancer cells. The pelvic wash contained NO cancer cells.

The local gyn/onc recommended just chemotherapy. I obtained a remote 2nd opinion from a gyn/onc at Mayo Clinic, an in-person 2nd opinion from a UPSC specialist in another state, and a 2nd opinion from a local rad/onc. All 3 second opinion oncologists recommended adding vaginal brachytherapy to chemotherapy. That is the treatment protocol I selected.

I had a Groshong (sp?) catheter implanted in my chest for chemo administration. Following 3 rounds of Carboplatin/Taxol I had 3 rounds of brachytherapy and another 3 rounds of Carbo/Taxol.

I took a week off work following each chemo infusion session. I worked part-time the following two weeks. I worked in the evenings after my co-workers had left for the day as I tried (successfully!) to avoid catching any illnesses. I did no shopping and did not see any friends in person. Outside of treatment visits, I saw only my husband and my daughter. I was somewhat fatigued and experienced chemo-brain throughout my treatment. My blood labs steadily declined, but I managed to squeak through treatment right on schedule without needing any blood "boosting" therapy.

I send you BIG HUGS as you make your way through choices and treatment!

 

Sally

BluebirdOne
Posts: 369
Joined: Jul 2018

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takingcontrol58
Posts: 263
Joined: Jan 2016

Diane,

I read your post and wanted to ask you a question.  I am a six year survivor of metastatic endometrioid cancer
(diagnosed at Stage 3b, Grade 3, then metastasized 2 months later).  I have been totally cancer-free for over
five years. Grade 3  endometrioid is put in the same category as USPC. It was initially recommended that I receive
6 infusions of Taxol/Carbo and pelvic radiation with Cisplatin. When my cancer metastasized two months after
my hysterectomy (which was before I started any treatment), the radiation treatment was cancelled.  I have
never had any radiation treatment. My last chemo was in May 2015- I have used no cancer drugs since then.
Cancer is systemic, so cancer cells are floating in our blood and lymph which circulate around the entire body. 
Radiation will not kill all those floating cells. At least chemotherapy is systemic.  It is up to you to weigh all the
pros and cons of the various treatments.  But in addition to standard cancer treatment you select, you have to
determine the root causes of your cancer and address those issues.  What led to the development of your cancer
that could cause it to recur.

You mentioned that you are a body builder.  Did you ever take growth hormones or do you use them now? 
If so, you should get a blood test for IGF-1 (insulin like growth factor hormone-1). It is driven by growth hormone
which you can also test (GH). It is a key driver of endometrial cancer and many other cancers like breast, prostate,
colon, liver, pancreatic, and others.  Many cancers are driven by an imbalance of hormones- IGF-1 is one of those
hormones (though the cancer industry does not address this hormone). I've known women who developed USPC
who used hormone replacement therapy, which is a risk for many of these female cancers. Too much growth hormone
can also cause a condition called acromegaly.

IGF-1 was one of the key drivers of my own cancer.  If your levels are too high, there is a non-cancer drug that will 
lower these levels (the drug that helped shut down my cancer, metformin). I have had no recurrences since Jan 2015.

 

Takingcontrol58

 

 

MAbound
Posts: 1098
Joined: Jun 2016

"Grade 3  endometrioid cancer is put in the same category as USPC". Category means whether a cancer is considered Type 1 or Type 2. All grade 1 & 2 adenocarcinomas are referred to as Type 1 cancers. Type 2 cancers are everything else: grade 3 adenocarcinomas (hormone driven, most common and treatable type), uterine serous, MMMT, and the other rarer, more aggressive uterine cancers.

Just because grade 3 adenocarcinomas and UPSC are both type 2 cancers does not make them alike. They are two completely different animals and will not respond the same to Metformin as Eldri (Easy Living) and others who were taking it prior to diagnosis can attest. From Wikipedia: "Unlike the more common low-grade endometrioid endometrial adenocarcinoma, USC does not develop from endometrial hyperplasia and is not hormone-sensitive. It arises in the setting of endometrial atrophy and is classified as a type II endometrial cancer."

As to what causes UPSC, Wikipedia goes on to to say: "Initially there is a precursor lesion called serous endometrial intraepithelial carcinoma. Mutation is found in TP53 gene which is a tumor suppressor gene even in precursor lesion suggesting early involvement of this gene. Also many missense mutation and mutation in PI3K and PP2A genes are involved which also contribute to this tumor." 

That said, TC's point is to investigate what may have precipitated genes to mutate. It's important to give some thought to because fighting one cancer does not make you immune to having second or even third cancers. Believe me, when you finish frontline treatment, your thoughts are going to turn to "What's next?" because you never want to deal with this again. TC's story and advice is a good place to start if you want/need to be proactive. It's just that right now, you've got to focus on what frontline treatment will be best for you because you need the best shot possible for a cure first of all. 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Just want to encourage you to breathe for a few days.  You've just been through surgery, and you're hearing news you didn't want to hear, and you're having to decide on treatment (because you do get to have a vote in this!), and you're trying to figure out how to care for your animals as well.  It's a lot!  In a pandemic!  So please take a few days to catch your breath and be kind to yourself.  Your body needs to heal. Please be careful about lifting and over-exerting until your recovery time is up.  It really does matter.  You have very few stitches outside, but you have MANY stitches inside that all need to heal.  Please, as MA says above, reach out to fellow animal lovers and allow them to bless you with some help during this season.  I imagine chemo will come first for you.  It is do-able, but you will want to have some days in bed as it goes on, and you'll want to stay away from public places to protect your immunities. I strongly encourage you to get a second opinion as well about the radiation.  Read the article just posted from the New England Journal  - one of the authors is head of the department at MD Anderson where I got my second opinion, and she is widely known as absolutely brilliant. And lastly, you're not alone - we are all here for you and there's a LOT of experience and acquired knowledge on this board.  

takingcontrol58
Posts: 263
Joined: Jan 2016

MABound,

You know I value your postings but I want to clarify a few things in your recent post of "Clarification."

1) It is true that endometrial cancer is classified as either Type 1 or Type 2, but unfortunately diagnoses are
not that cut and dry. I was diagnosed with more of a "hybrid" stage. But you see no definition of a Type 3.
Unfortunately the cancer industry just doesn't go through all the possilble variations. Everyone is unique.

2) When I had my hysterectomy, my surgeon thought I had serous carcinoma. But the pathology report and
Foundation One report confirmed endometrioid carcinoma. My cancer was already spreading outside the
uterus- had spots on my ovaries and a 1/2cm tumor on my outer colon. My cancer was very aggressive
right from the start.

I was diagnosed with an atropic endometrium and a high-grade intrepithelial lesion (HSIL) during my
endometrial biopsy. I also have a mutation on the PIk/Akt/Mtor pathway ("pick")- my mutation was
PIK3R1 which is more common in endometrioid carcinoma- PIK3CA is more common in serous carcinoma
but both these mutations are found in both endometrioid and serous. I also did not have the TP53
mutation which is very common in serous carcinoma. Also, metformin is a drug that helps restore
the function of a TP53 mutated gene. I think this gene makes serous so aggressive, and it can be
mutated by viruses.

My tumor was also triple negative - negative for PR, ER and her2)- the hormones defined by the
cancer industry. My tumor, though endometrioid, was not driven by these hormones. But my my
tumor was hormone driven by the hormone insulin and its cousin IGF-1, which the cancer industry
ignores and which drive some of the most common cancers. 

3) I am well aware that serous carcinoma is very different from endometrioid-my cancer was probably so
aggressive because it was a combination of both. In working with many different women, I've noticed that
of the ones who have serous, many have had hormone therapy before they developed cancer or have the
herpes virus. 20% of all cancers develop from viruses.

4) Since mutations of the PIK ("pick") pathway are common in both serous and endometrioid, metformin
can be helpful in individual patients. I have worked with women who have both serous uterine and serous
ovarian that were helped by metformin. But we all usually have many issues to address.

But more important, once you identify your mutations, you have to determine what caused those mutations 
in your body. Genes don't mutate without a reason. Mutations of the PIK pathway are caused by high
levels of IGF-1 (which I had) and loss of the tumor suppressor PTEN (which I had). So you have to treat
the underlying causes to help your genes "reexpress" themselves as normal. My gene may no longer be
mutated since I have not had a recurrence. There are no guarantees but I continue to make sure I keep my
IGF-1 levels in a healthy range to ensure that.

5) It is very important for Diane to review all her options for treatment-and there are many options-
but the sooner you start to understand the drivers of your cancer and address them, the better outcome
your will have. Chemo and radiation do not prevent new cancer growth- My chemo didn't lower my insulin
or iron levels or help me lose 35 pounds or change my diet.  It is when you are attacking the cancer from
multiple fronts that people have the most success. Standard cancer treatment alone is not enough when you
have an aggressive or metastatic cancer, and I had both. I've seen too many people say "let me get the
treatment my doctor recommended first," then I'll look into other options.  Most of them are no longer here.
Standard cancer treatments do not have a good success rate with the more aggressive and metastatic cancers.
Diane should evaluate all her options and determine what she feels is best for her that will give her peace of 
mind. I think people often rush too quickly into treatment before evaluating all their options. A comprehensive
plan right from the start is the best route to prevent cancer for the long term. 

Takingcontrol58

 

 

 

 

 

 

 

 

 

 

MAbound
Posts: 1098
Joined: Jun 2016

AlL of this just goes to show how uterine cancer is so complicated because there are so many variables that make each of our cancers unique from everyone elses. I hope that we are not confusing or overwhelming Diane because her circumstances are uniquely her own and she has huge decisions to make that she shouldn't have to along with life issues that make knowing which way to jump so difficult for her. That's where getting input from more than one source matters. Our collective experiences and knowledge here can only go so far because none of us are doctors here, but hopefully we have given her some options to consider that will be of help. It's all overwhelming in beginning for all of us, but taking it one-step-at-a-time makes it doable. It helps to just focus on the absolute next thing that needs to be done before worrying about what comes after.

BluebirdOne
Posts: 369
Joined: Jul 2018

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MAbound
Posts: 1098
Joined: Jun 2016

Denise,

We all come here initially seeking advice and support and many stay to pay forward what they have recieved. We share what we've experienced and learned as a result from many different perspectives. We don't always agree with each others paths, but there is always respect for what is generously shared even when bringing up caveats regarding advice given.

No one here has ever shared anything with the intent to blame anyone about getting their cancer. To do so would be petty and mean and there is no one here that I would call guilty of doing that. Far from it. We're all just trying to help each other get down the road as best we know how.

To read other's posts and take them in such a light is extrapolating too far from what isn't there in my opinion and I'm surprised that you didn't stop yourself to think about it before making such an accusation. That's really disappointing.

We all wonder "Why me?" when we get cancer or when anything else terrible happens to us for that matter. Understanding "why" helps us to cope and feel less powerless. This is a cancer with many possible whys that are only recently being researched and understood better and better. It's not shaming to share what we know about them with others here, it's just something for someone to look into when they are wondering "why me?" Information is power. Power to cope and power to be proactive.

Forherself's picture
Forherself
Posts: 483
Joined: Jan 2019

There are reasons to say that the message is sometimes given that lifestyle choices causes cancer.   That is the case sometimes and sometimes not. SO like everything else about cancer, its hard to say what causes it.   Increasing your odds it NOT the same as causing.  Serous carcinoma has no relation to obesity, or horomone replacement.  They can tell by studying clusters of patients.  And it was said earlier that gene mutations don't happen randonly and that is simply not true.  Mutations do happen randomly all the time.  Our immune systems are constantly removing cells with DNA mistakes.  And cancer runs in families.  THAT is a genetic relationship.   Nothing about cancer is a cut and dried, absolute fact.  There is always the exception.  

MoeKay
Posts: 309
Joined: Feb 2004

Hi Diane,

I would definitely want additional opinions on the rationale for or against radiation in your case.  I remember when I had my initial consultation before surgery with my gynecologic oncologist, he told me that some women need no radiation after surgery, some need internal only, some need external only and some need both.  Of course, I won the lottery and required both internal and external.  However, my gyn-onc explained to me exactly what all of my risk factors were and the basis for his conclusion.  In fact, when I went for a consult with my radiation oncologist, she initially only talked about my getting external radiation.  After I contacted my gyn-onc and told him what she said, my gyn-onc said he would call her to discuss my case.  Ultimately, she agreed that both types of radiation were appropriate and warranted.  I completed radiation in mid-1999, and was able to work every day after the external treatments.  I was in my early fifties at that time, and the only time I missed work was when I spent two days in the hospital in isolation getting the internal radiation, which was the way it was done back then. 

I did get another opinion on my case at Johns Hopkins, and the gyn-onc there agreed that the treatment I was being prescribed was appropriate for my situation.  Of course, a lot has changed in the past 21 years.  At that time, chemo was not standard of care for my stage and grade of cancer and that was also long before genetic testing, molecular screening and the like became standard of care. 

Wishing you the best of health! 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Diana, I had UPSC Stage 1A as well.  I did the full treatment - 3 chemo, radiation (external and brachy), 3 chemo.  If you read my story feel free to PM me as well.  We all have to do what we feel is best for us.  That was the road I chose - and I didn't know anything at the time.  For me, I would make the same choice knowing what I know now, but that is me.  

 

barnyardgal
Posts: 271
Joined: Oct 2017

Diane, I had regular endometrial cancer not UPSC, but I was 3a also. I had chemo and IMRT radiation - 25 rounds. Other than a hemorrhoid, I have had no issues from the radiation. Its been about 2.5 years since I completed treatment.  

zsazsa1
Posts: 551
Joined: Oct 2018

26 months ago, I had UPSC/clear cell, negative pelvic wash but isolated tumor cells in one of the two sentinel nodes that they took, so cat was out of the bag.  I had 6 rounds of carbo/taxol (although I declined the last dose of taxol due to developing neuropathy in my left foot), had trastuzumab because my tumor was her2neu positive, and had whole pelvic IMRT because I felt that if it was in the one lymph node, even as isolated cells, it could be in other nodes that they hadn't sampled.

It was all do-able, and I'm glad I had it done.  I did have horrible diarrhea during the radiation, but taking a probiotic helped a lot once I'd started it, and others have said it's even more helpful if one starts it a week before radiation.  I didn't have significant urinary tract issues, and the diarrhea completely resolved by about two months after I completed radiation.

I know how terrifying it is!  But I am glad that I decided to just bite the bullet and do it.  To me, especially since my children are not yet launched, it has been very important to do everything possible to stick around for them.  It wasn't fun, but I got through it, and even if the treatments only were to add another year to my life, it is worth it to me, to have gotten my youngest through high school and into college, and the two older ones farther along.  And if I'm lucky, I'll have more time than that.  In your case, there is definitely the chance that the chemo and radiation could give you a very long remission, even possibly a cure.  There are other women on this board who have experienced just that.

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