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Still Terrified

MAbound
Posts: 797
Joined: Jun 2016

I go Wednesday for my post-op and 2nd pelvic wash results on Wednesday. Time is running out for me to accept or reject 28 days of EBRT. 

Part of my concern is that being diabetic now doubles my risk of developing pelvic radiation disease up to 5 years afterwards. 

I have a lot of trust in my gyn-onc, but let's face it: his focus is on curing my cancer and damn the consequences. Here's a link to a relatively recent article pertinant to that titled "Pelvic Radiation Therapy: between delight and disaster" 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663381/

I'm not as concerned about getting through the acute side effects that will eventually resolve themselves, but as regards the likely late onset side effects, I'm absolutely terrified and not sure if I can do this. To understand what I'd be agreeing to, this is one of many things that I've read, but probably the most thorough:

http://onlinelibrary.wiley.com/doi/10.1002/cncr.28849/pdf

It's interesting that no matter how many different ways I've searched, I can't seem to find anything on why pelvic radiation is the go-to treatment with or without chemo for stage 3 and 4 endometrial cancers. No studies, no articles that summarize studies, just listings of what the standard treatments are for different stages. Have any of you had better luck?

I know that none of you can make this decision for me, but your thoughts and experiences really matter to me and would be greatly appreciated. It would help to know if there are other stage 3 survivors who only had chemo but no radiation and what if anything they had or did after chemo to stay NED.

I intend to talk to my onc some more because I have a hunch that radiation is a treatment that can be revisited should I have a recurrence. At least then they'd have something to aim at rather than just blasting everthing in my pelvis, but I know not having radiation will make me that much more anxious about recurrence. It so feels like a no-win situation!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

One thing I would recommend is to find out what kind of machine your radiation center would use. I'm being treated with the TrueBeam system (https://www.varian.com/oncology/products/treatment-delivery/truebeam-radiotherapy-system), and have had remarkably mild side effects through 20 treatments (knock on wood it will continue this way). It targets the beams very precisely to minimize damage to healthy tissue. I'm not sure how long this system has been around, but it's brand-new at my center. Some insurance companies resist covering it, but with your medical history your radiologist should be able to make a case for it.

MAbound
Posts: 797
Joined: Jun 2016

I sort of consider you our current radiation therapy expert based on posts from earlier threads and you make a strong case for submitting to RT. I looked at your link for the Varian True Beam and it looks like that is a brand name for what is generically called Stereotactic Body Radiotherapy (SBRT) which the oncology clenter I'm being treated at does offer. It looks like they offer everything as regards RT options, but what gives me pause is their criteria for who gets which kind. Most of it depends on where tumors are located as they are designed to laser in on the tumors to spare surrounding normal tissues.

I no longer have identifiable tumor (my PET/CT scan just before my second pelvic wash was negative), so I think that's why I'm being encouraged to undergo large field EBRT to cover the bases just in case there is microscopic cancer remaining somewhere down there. I have to weigh the odds of that versus the certain damage RT would do to me down the road.

I'm not quite in the same boat as those of you with USPC, serrous, clear cell, MMT subgroups of endometrail cancer. I'm high risk becaue my cancer was into an ovary and fallopian tube before it was diagnosed and of course the grade. I was told that 0-1 positive pelvic lymph nodes are interpreted as a negative, so Im presuming my risk comes comes from cells having possibly escaped elsewhere into the body from that ovary and fallopian tube and it's the chemo that's either taken care of those or hasn't. I guess I need to ask if the aim of RT for me is to sterilize the pelvic lymph nodes remaining like you said is being done for you. 

Thanks for your understanding and repeated replies as I wrestle with this. The decision is certainly consuming all of my focus at the moment!

 

brissance's picture
brissance
Posts: 192
Joined: May 2016

Boy. there is no real answer for you.  Not until you have gone through the predicate time to see what the future holds.  I am pleased you are studying the consequences as well as the value of the treatment.  I believe that the radiation is for local or adjacant recurrence and the chemo is more targeting the system or distant recurrence.  My tumor was in the upper part of the uterus but the radiation (brachy) was more geared for the cuff.  I honestly do not know if doing the radiation was the best move but I decided to be as aggressive as possible.  I was terrified of getting a recurrence and then always wondering if my failure to have radiation had cost me a recurrence.  And actually I think that was more of the reason.  Agian, no correct answers just the answer that I felt more comfortable with accepting the consequences.   You are smart and you will come up with "your" right answer.  God bless you.

MAbound
Posts: 797
Joined: Jun 2016

Ah Patti, thank you so much for your encouragement. You've been so good to me. I'm the professional worrier in the family (somebody has to do it!) and I really, really hate being in such a catch-22 situation. I make myself and everyone else a bit crazy at times, but it's never been for such a life and death decision. This really sucks!

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I was diagnosed with a mixed mullerian tumor (MMMT) arising in background of endometrioid adenocarcinoma. Stage IIIB, grade 3. I had a greater than 50% myometrial invasion, which is hard to assess when all is morcellated in a laparascopic surgery, and a positive pelvic washing. I had 6 rounds of Taxol and Carboplatin. I did not have radiation. I  too had a very hard time deciding about it.

In the end, my decision not to have radiation was not based on statistics, but was made by default. A lot of time passed as I struggled to get clear answers from my gyn/onc, who was against it, and get opinions from a tumor board (for it) and another gyn/onc (50/50 for/against). Time passed and I got worn down, and had a work trip I had to make. Since the first radiologist I spoke with said that I should have radiation asap after chemo, and no later than a couple of weeks after chemo to be effective, as more time passed, I lost my initiative to see the matter through. It felt like an uphill battle anyway.

I saw results of one study, which I think might be the only large study they have to reference regarding MMMT, from 2008 or 2009.  If I am remembering correctly, it showed a slightly higher percentage of patients with stages III and IV of MMMT who had combined chemo with radiation to have survived more than 5 years than patients of the same stage/grade who have had chemo alone. One of its drawbacks is that it lumps patients in 2 groups: Those with stages I and II, and those with stages III and IV. And I don't think the case for radiation was overwhelming. I am sorry that I don't have quick access to it. I will look for it, scan it, and send it as an attachment if you can give me your email address. 

I think you will find a variety of opinions among doctors. The thing is, we have rare cancers for which there is very little research, and which are known to be aggressive, scaring the living daylights out of everyone. So it seems to make sense to throw everything possible at it, in hopes that something will work. But you are absolutely right to consider the toll or possible problems with radiation. I have considerable pain problems every day from the treatment I've already had, and do not regret having not had more. This is my experience.

Praying for peace and healing for you,

jane

MAbound
Posts: 797
Joined: Jun 2016

Thank you for sharing your story with me again in this thread and the offer to send the study if you can find it. I'd really like that as I haven't had much luck on my own. I'll PM you shortly with my email.

You and I are pretty close as far as staging and grade goes, except that I don't have the MMMT variety of cancer. I think mine was hormone driven and why I'm going on progesterone therapy next. Those facts about me are in the not-doing-RT column for me.  Congratulations on being 3 years NED, BTW! :-)  

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Hi Pat,

Can't reach you by email tonight...Gmail and the Mexican government have built the wall!! But the following link, if pasted in your browser, might bring you to the few articles I mentioned and was able to scan today. Two are reviews of the European study of 224 MMMT patients, with data from 13 years bt published in 2007 (oh argh!). The other is a review of controversies regarding treatment of uterine sarcomas published in 2011.

https://www.dropbox.com/sh/wapvarjc1au0826/AAA0WqWNK_xoC6IsFYZvegJJa?dl=0

Not perhaps as helpful as we wish they were for you or even for women with sarcomas, but voila.

best wishes,

jane

Soup52's picture
Soup52
Posts: 888
Joined: Jan 2016

Ok, well I had radiation external and internal after surgery and before chemo. My doc wanted to be agressive clear cell endometrial cancer 111c. Maybe I'm stupid but I didn't feel I had time to question etc. I had to get on with the treatment. So far I am clear after the first ct scan post treatment. Do I have lasting affects from radiation, yes unfortunatelY. While not on a daily basis, I do have some abdominal pain and constipation etc. I'm never sure if there are any foods that trigger it. I am considering going to a gastroenterologist for help. These Fter affects are something I was told about, but I'm not ready to die and felt it was worth a chance to live. I am enjoying many good days.

MAbound
Posts: 797
Joined: Jun 2016

I'm counting myself lucky that I've had a bit of time to research RT and think about it rather than being rushed into it. I was worried about never having been offered the "sandwich treatment", but I've come to terms with that and am not worried that I missed out on something that would have been a better option for me.

We are all in such different places as we get diagnosed and begin treatment. If anyone is stupid it's the docs who follow a standard algorhythm for guiding our treatment without regard to our understanding and ability to question or be confident in what's being proposed. I would have done the same as you Soup when all of this started for me. Now that I know more than I did when all of this started I'm a bit more of a pill as a patient. You have the assurance that you've done all that you could to be NED, while I'm angsting about whether or not I'm about to shoot myself in the foot and live to regret it. It seems like this whole business is one trade-off after another. It really makes us want to second guess ourselves and that's not any more comfortable to live with than treatment side effects.

Your posts are always so helpful, so keep them coming. I'm hoping you'll get the help you need with your GI issues and having a gastroenterologist on your team has got to be a good thing as time progresses. Thank you for being here for me.

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txtrisha55
Posts: 684
Joined: Apr 2011

I can only talk to my experience with my gyn onc dr. I was at stage 3c1 grade 3 carcinoma sarcoma uterine cancer in 2011.  My Dr said she only did chemo saving radiation for later  if it came back.  That was because the nnational cancer institute ( NCI)  found that having chemo & radiation did not  show  a significant impact against the cancer than just chemo on its own.  You can always get a second opinion.  I am a 5 year survivor from my cancer and just had chemo. If they removed all female parts then there is not anything left to radiate except the bones and organs.  Radiation is supposed to be able to pinpoint a point not the whole area.  Good luck in your decision. Praying for you. Trish

MAbound
Posts: 797
Joined: Jun 2016

Thank you for sharing your story with me again! I remembered you from the earlier thread I posted and was thinking about you. I'm so glad you responded. Thank you for your support!

I've been to the NCI site and haven't yet found the study you were refering to. Did your doctor tell you about it or did you actually get to read it yourself? I'll keep digging around in there, but if you have a copy or link to it, I'd really like to read it. I understand the mechanics and implications of RT pretty well at this point, but can't help but wonder where the studies are that have made it such a standard of treatment.  It's a big part of why I'm having such a hard time with making this decision!

 

 

takingcontrol58
Posts: 235
Joined: Jan 2016

MAbound,
I was diagnosed with Stage 3b, Grade 3 adenocarcinoma in Nov 2014 at the time of my surgery. In addition
to my 4.3cm tumor, I had a 9CM fibroid, plus a few cancer spots on my ovaries and a 1/2cm tumor on my
outer rectum, which was removed.

Recommendation was for 2 infusions of Cisplatin plus 28 days of external radiation (IMRT), plus 6 infusions of
Taxol/Carbo. Goal for radiation was to get all the "micrometastases" floating around.  There would be no tumor
to target. They called this insurance.

Before starting treatment, had CT scan in Jan 2015 that showed my cancer had metastasized all over my body
- liver, spleen, 5cm tumor on outer rectum, nodules on lungs, kidneys, spleen and outer colon. Total of 34cm of tumors.
My husband was told I had 4-6 mos to live.  Radiation was taken off the table. I was also told that radiation destroys
your liver (by Sloan Kettering).

The week I had the CT scan, I was having nightmares about getting the Cisplatin and radiation, because I had studied up on
how dangerous Cisplatin was along with the radiation. If there was no tumor to target, they would just shoot radiation at my
entire pelvis.  I have since learned that radiation increases your risk of bladder cancer and aiming radiation at the pelvis can
destroy the colon, stomach and bladder.  A few days later after these nightmares, I was told no radiation because my
cancer had metastasized.  So now I had more cancer but no radiation. I was so happy my cancer metastasized. My husband
thought I was crazy,  I call it divine intervention. I wasn't meant to have radiation.  At the time, I would have just done what
the doctors said.  But now that I have spent 1 1/2 years researching cancer, I know getting radiation probably would have made
my situation worse. Radiation causes cancer and mutates your good cells while it is supposedly killing your cancer cells. 
If DNA damage can lead to cancer, why would you actively want to get a treatment that causes more DNA damage?

I mentioned previously that I only receeived 6 infusions of Taxol/Carbo.  After 2 infusions, my doctor put me on metformin,
500mg, 2X day. I took the metformin with the remaining 4 infusions.  After the 3rd infusion and on metformin for one month,
I was down to 4cm of tumors (88% shrinkage). This was March 2015. Finished 6th chemo in May 2015 (the last chemo I
ever had). Still had 2cm of tumors. They wanted me to get 4 more infusions of Taxol/Carbo which I refused. Was completely
NED in August 2015. Have remained NED to this day- progression free since March 2015. As I've mentioned, the metformin
just stopped the cancer in its tracks for me, because I believe it was my high insulin growth factor levels that were fueling my
cancer (endometrial cancer cells have many insulin receptors on their surface which is why metformin is so successful in
fighting EC).  So I went from a death sentence to complete remission in 7 months (and no radiation).

You have to make your own decisions on treatment, but I believe everyone should weigh all the facts and do what they feel is
right (in your gut). Don't let the doctors pressure you. I personally believe that the only way to heal your cancer is a combination
of "minimal" standard treatment with complementary treatment (which for me was losing 40lbs, exercising, radically changing my diet,
eliminating almost all sugar and alcohol, taking metformin, 2 aspirins a day, 44 supplements a day (many that target
cancer) and doxycycline (an antibiotic).  Most of what I did to heal myself had nothing to do with cancer treatment.  You have to
find the root causes of what is making cancer grow in your body or you will never heal. The cancer industry does not address
the causes of your cancer- and your cancer grew because your internal environment was toxic. You just need to figure out what
your own health conditions are - and oncologists are not the doctors doing the proper tests to figure that out.

I would high recommend a book entitled "Cancer is not a Disease", It's a Survival Mechanism, by Andreas Moritz. I lost my fear of
cancer after reading this book. I personally believe he may be correct on his theory of what cancer is.  It is not out to kill us. 
It is really a last ditch survival mechanism our bodies have to try to save us (the tumor is sopping up all the excess toxins and
metabolic wastes floating around in our bodies, which would kill us if the tumor wasn't trying to stop it).  So if you cut out the tumor,
the cancer goes on to form more tumors because you still haven't gotten rid of what was causing the cancer in the first place. 
This is what happend to me.  I had more cancer after surgery than before surgery, before I started any treatment. A tumor needs a
certain internal environment in which to grow. Doctors don't even discuss this with you.  Cells are damaged by gene mutations, toxins,
viruses, bacteria. There is a reason we get cancer. You will have to figure that out for yourself. To me, a tumor is like a big alarm bell
going off- trying to wake us up to the fact that we have a major problem going on in our body. A fever indicates a more minor problem,
a tumor indicates a major problem.

Here are two quotes from the book - "Disease is the body's way of healing itself and modern tratment is a sure way to impair or
even destroy this ability."

"Tumors act like sponges for the poisons that circulate and accumulate in the blood, lymph and tissue fluids.  These poisons
are the real cancer, and they continue circulating unless a tumor filters them out.  By destroying the tumor, the real cancer
remains and keeps circulating until a new tumor is generated (called recurrence). ... Cancer cells don't endage a person's life,
but whatever causes them does."

 

Think about it.  You have cancer because you have a very toxic internal environment ( from chemicals, bacteria, viruses, damaged
DNA, excess hormones) in your body.  So now our treatment is more toxins (chemotherapy and radiation).  You have already
pushed your body too far which is why we get cancer- so we now push it even further with dangerous drugs and radiation- no wonder
most people do not survive. I think it is a delicate balance you need to figure out as to how much treatment you want. I believe the less
the better, so your own immune system can take over again. Your own immune system is the only thing that can heal you. It has been
keeping you alive after all for all the years up to when you got cancer, and it is still working to keep you alive, if you don't
completely destroy it with more dangerous treatments.

I know most people believe cancer treatments alone can cure them but I personally do not believe this. I mean this for those
of us who have advanced or late stage cancer. I believe you have to do much, much more, which is not related to cancer treatments. 
There are no cancer treatments today that will cure people like me, yet here I am, healthier than I have ever been in my life and still
cancer free. I would have stopped after 3chemo infusions (but didn't know then what I know now). Will I remain cancer free? Nobody
knows. But now I am doing all the things I should have been doing before I got cancer, that perhaps would have prevented me from
getting cancer in the first place, the same things that I hope will prevent a recurrence.

May God guide you in making the right decision. He certainly helped me.

Takingcontrol58

MAbound
Posts: 797
Joined: Jun 2016

Thank you for sharing your story. You've certainly given me some good options to look into for after treatment regardless of the direction it takes. If my pelvic wash comes back positive, radiation will no longer be an option for me either and I confess to not feeling too anxious about that scenario just like you were happy when told you could not have radiation. I so get that! Having responsibility for the decision taken out of my hands would probably feel like a relief, but confirmed metastasis in spite of chemo would be crazy scary.

Everyone's cancer is different, but it sounds like you have the same type (adenocarcinoma) as I have have and I've see a lot that supports what you said regarding diet, excercise, metformin, supplements, etc. and have been looking into such things for what I can do for myself after treatments end. No naturopathic doctors specializing in cancer to guide me so far, but I've still got my ear to the ground to find one. I've lost 30 lbs. so far, but working on losing more which oddly keeps my blood sugars elevated the less I eat. My laid back PCP only has me on 500mg. Metformin daily, which was started with my 2nd chemo cycle,  but I'm changing to my husband's PCP when I can next year because I think he's a lot more conciencious about managing his diabetes these past 20 years than mine is. My cancer probably got as far as it did because my PCP took such a wait-and-see approach to risk factors I had, especially the late, late menopause. 

It never hurts to do what we can to make our bodies less accommodating for any lingering cancer cells. May you stay NED forever!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

If you want to find a naturopathic oncologist, this website is a good place to start.  It lists board-certified naturopathic oncologists in the US and Canada.

https://oncanp.org/world-map/us/

MAbound
Posts: 797
Joined: Jun 2016

OMG. There's actually one just a 2 hour drive from where I live. Thank you so much! I was just getting nowhere with this on my own. I'll definitely be looking into her more once I get past this RT issue. One step at a time, but you really helped me with this one. :-)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

I understand you anxiousness.  I did have radiation but never really could wrap my mind around that one.

Pelvic Radiation Disease is real.  My dear friend had suffered from it and found lots of information on it across the pond - not so much here.  Sadly, she has passed away from cervical cancer, but was a very real advocate and was recognized for her work.

Listen to everything and in the end, do what you decide is best for you. 

MAbound
Posts: 797
Joined: Jun 2016

I see that you had both the external and internal RT. What side effects did you/are you dealing with and which ones were temporary. Thanks for responding....you always seem to come through for me and that means so much!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

MAbound, I am happy to share.

I had external RT in Sept 2012. For external radiation (it was IMRT) I had very mild diarrhea and then it got better before I even finished all 25.  For me, I think it was because I took probiotics PLUS the type of radiation.  If you read about IMRT it really is pretty advanced and it is to help minimize burns and side effects known by RT.  It did do a number on the bone marrow in my hips so I think it really hurt me getting the last 3 chemos done. (I had the sandwich) The chemo nurse told me going in to it - if there is going to be a problem on getting this done on the proposed schedule - it would be on the back end.

I had brachy in Aug 2012.  Of course, as we have talked about, that causes vaginal stenosis.  One wonderfully, beautiful women, who used to post here advised me to use the dialator every day for 10 minutes (they say 3 times a week).  I did it every day and think here I am 4 1/2 years out and don't have to use it every day.  I will say - this is radiation so when I saw pink on the dialator I went to see the onc in the office and she said it is just 'burned' from the radiation and she said it isn't bad - she has seen worse.  Surprised I still see a little pink, and I have talked to the onc about this.  When you think about the radiation burns peopel suffered after the atomic bomb - they weren't regular burns that healed, these are a different type of burn - and that is what I have.

My gyn onc had recommended a Large dialator a few years ago, and that was hard, but persistence paid off and pelvics which I still get are not a problem.  (no hubby, no boyfriend Undecided

As I said, I had a hard time wrapping my head around radiation.  I don't know if I was a very good patient.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

BTW, here is one of the articles my beautiful friend, Tranette had done for Pelvic Radiation Disease. 

http://www.expressnews.com/lifestyle/health-family/article/Cured-from-cancer-but-at-what-cost-6431691.php

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I, too, went rounds with whether to have radiation or not.  If you check the thread "Change in Treatment Plan Carcinosarcoma MMMT" it will show you what I went through in making my decision.

In a nutshell, my doctors disagreed on the value of external radiation for me.  My gyn/onc was strongly in favor of both brachytherapy and external radiation.  The first radiologist originally agreed, but after consulting with colleagues, decided against recommending any radiation.  The second radiologist I met with said I certainly did not need both, as he could design an external plan that would encompass the vaginal cuff, however, he also said that the value of external for my stage and type was not clear-cut.  I actually went through the simulation process getting the scan and tattoos, but had also arranged for yet another opinion with a panel of medical, gynecological and radiology oncologists.  I was hoping to seek some sort of consensus, but they could not offer that, as they disagreed as well.  In the end, I decided to do brachytherapy only, reserving external for recurrence, should that happen.

I also searched for studies, and found only one that showed a slight advantage for later stage grade 3 cancers but as I remember there were some problems with the study.  It may well be the one DrienneB is speaking of.  I am looking to see if I can find it.  Many of the studies only addressed early stages and/or lower grade cancers.

This was by far the most difficult decision I ever made.  But I had already decided to incorporate other methods in my healing from cancer, much as takingcontrol has done.  The day of my first external radiation session, I called and cancelled.  I just had a very strong feeling that this was not the right choice for me. 

If you are interested, PM me, and I can provide you with even more details.

Chris

 

MAbound
Posts: 797
Joined: Jun 2016

I agree with Becca that this site is clunky when it comes to searching. Still haven't found your thread, but I've read some of your earlier posts that are quite interesting. How the heck do you keep up with and keep track of all that you do on this site? It's beyond me! I wish I had started taking notes when I first joined. I'd go back a few years and start something like that if I could find some more time.  In any case, it seems like the more I learn, the more there is to learn and I'll take any help I can get. Thanks so much. I don't know where to start, but I'll PM you my email address in a bit.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

Here is the Thread Chris talked about:
http://csn.cancer.org/node/299071

MAbound
Posts: 797
Joined: Jun 2016

Chris also emailed me a link. This thread must have been a real trip down memory lane for those who have been her awhile! It's eerie how closely I'm mirroring Chris's struggle last year. Thanks for all of your help ladies! Not sure how I'm going to sleep until this decision gets made, but eventually I'm going to have to throw the dart!

MoeKay
Posts: 191
Joined: Feb 2004

Has your gyn-onc provided you with the specific findings about your tumor on which he's basing his recomendation for EBRT?  I had both EBRT and brachytherapy for endometrial cancer in 1999.  Before surgery, my gyn-onc said that depending on the surgical and pathological findings, I may need no radiation, internal radiation, external radiation, or both. 

 It turned out that I won (or lost, depending on how you look at it) the radiation lottery, and needed both types of radiation for the following reasons.  First, I had a deeply-invasive tumor, which had invaded more than 80% of the thickness of my myometrium.  Second, pathology determined that I had extensive lymph-vascular space invasion (LVSI), which is a significant risk factor for recurrence in endometrial cancer.  See: http://www.sciencedirect.com/science/article/pii/S0959804915004463.  Third, my tumor arose in the lower uterine segment close to the cervix, which is another risk factor for local recurrence.  

I do not have diabetes, so I'm not familiar with how this fits into the radiation picture.  I'm assuming you've discussed the information you've found about diabetes doubling your risk of pelvic radiation disease with your gyn-onc?  I guess I would want to know doubling of what?  How common is pelvic radiation disease in non-diabetics?  If it's an extremely rare side effect, doubling the risk may still make it quite rare.  I would also thoroughly discuss with your gyn-onc, and maybe a second-opinion gyn-onc at another institution, whether declining radiation now under the theory that you can always get it later would jeopardize your chances of long-term survival. 

Just a few of my thoughts on the issue. 

Maureen

 

 

MAbound
Posts: 797
Joined: Jun 2016

Ok, that helps me to understand why RT is a standard of care that makes some sense and will help direct some of my questions on Wednesday with my gyn-onc. I don't have the extensive LVSI situation you were in, but after a lot of back and forth between my onc and multiple pathologists from different institutions, they ultimately decided that my cancer originated near the neck of my uterus and spread down to the cervix (but was contained there) and up into the fundus from there. I was an interesting and challenging case for them. Lucky me! That changed my original invasion extent from 30% of myometrial thickness  to 70% because the muscle is thinner there. Bummer, heh?

As far as the claim that diabetes doubles my risk of developing pelvic radiation disease, that came from a March/April 2013 article in OncologyNurseAdvisor.com titled Radiation and Your Patient. It was written by a medical journalist, but he cited the following as his source for that:

http://www.cghjournal.org/article/S1542-3565(12)00900-7/pdf 

It's twice the risk as compared to non-diabetic patients. I don't like the implications of being in that group regardless of any percentages because those will vary depending on what you are reading. The 2nd  link in my original post in this thread did give some percentages for incidence of GI complications for their study, but the first link, which is more recent, considered the under-accounting of the incidence of PRD and thinks it's as high as 90%. Yikes!

I'm really taken with how long its been since your diagnosis and treatment and I'm curious as to how RT went for you and how it's impacted you since.

Thank you for your response, it's giving me more to think about than I was able to achieve on my own. 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

My own view of the possible long-term side effects of radiation or chemo is this (warning: blunt talk coming): Anyone with advanced or high-grade endometrial cancer is in a fight to be alive after two years--if we make it to five years with no recurrence of cancer, we're in a very small and fortunate group. That is the reality of our situation. Bargaining with our doctors over treatment choices won't change that. So getting there is the first step. For me it would not make sense to forego treatment now in order to avoid possible side effects down the road if doing so increased the chances that I wouldn't even live long enough to face those possibilities. I do worry about some long-term effects, lymphedema in particular. But I hope that if I'm still alive in five years and dealing with lymphedema every day I'll still be glad to be alive.

Given the development of new technologies, I would pay careful attention to the type of treatment used in evaluating any research on long-term effects.

I think that any Grade 3 endo ca is treated under essentially the same standard as serous, UPSC, MMMT, clear cell, etc. You should ask your doctor, but that is the impression I have from things my doc has said.

In the end, though, I agree that doing what you think is best for you is the thing that matters most. I hope you have support from family and friends to help you get through whatever you decide.

MAbound
Posts: 797
Joined: Jun 2016

Blunt talk is what I appreciate, need, and want. This decision is too important to take umbrage with any input offered. I truly appreciate it and your concern for me.

You're a treasure, Becca!

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Scotgirl
Posts: 31
Joined: Oct 2016

My head is reeling, no radiation, radiation, no to this chemo drug, no to that chemo drug. I can do the research to be informed but in the end if I don't trust my doctors who are expert in their fields, I am alone and I can't do this alone. So side affects or not, I need to know that I gave myself the best chance at survival from the get go because I want a life. I don't want the crappy side affects but like my chemo doc said, cancer does a lot better job at killing than chemo.

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henhill
Posts: 123
Joined: Aug 2016

My gyn/surgeon at first rejected the idea, but later was pursuaded by her team to agree to do it.  She said I needed to use every tool.  I did it a year ago and suffer all the side effects, which are many, and difficult to live with.  With all that, my disease returned in the para-aortic lymph nodes (a common place for reccurrence) and I think that, of all the things I wish I had done differently, this would have been the one.  My doc had originally said not statistically positive results and very possibly damaging.  Do what you will, and I pray for the very best for you, but this is what happened to me. 

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EZLiving66
Posts: 1305
Joined: Oct 2015

How long did it take for your cancer to return?  I had Stage II (slight spread to cervix), Grade 3 UPSC and my gyno/oncologist said no radiation unless there was a recurrence - it's been a year.  He did order 6 rounds of chemo but I only made it through 3, as a preventative.  

Love,

Eldri

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henhill
Posts: 123
Joined: Aug 2016

Hi Eldri

I finished radiation in February and it was discovered to be back in June at my regular visit,  This showed up according to my CA125 blood work.  I had surgery a year ago in June, and was NED until this.  Stage 3a UPSC spread to both fallopian tubes.  I was devastated, but according to the 2nd doc at MGH, Boston, it is very minute at the time and I am not being treated right now.  I go back on the 13th for checkup and will likely get a CAT or PET scan from there.

 

MAbound
Posts: 797
Joined: Jun 2016

Thank you for sharing your story. That's the problem for all of us with this disease, there are so many variables and options for treatment with no guarantees for the end result. We're all willing to do what needs to be done, but a little certainty that we're doing the right things would make such a difference! You haven't been on this site long, but I'm hoping you can find some help here or at least some pointers that will help you with what you are dealing with as you go forward. You are not alone! 

God bless you!

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

I did not have external radiation as part of my frontline treatment but did get it when I had a vaginal recurrence a year later. I think there is something to be said for saving it to treat a recurrence. It would then be used to target only the area of the recurrence. I have been NED for three years since my external radiation ended. 

MoeKay
Posts: 191
Joined: Feb 2004

Hello MAbound:

In your above post, you commented, "I'm really taken with how long its been since your diagnosis and treatment and I'm curious as to how RT went for you and how it's impacted you since."

Starting about midway through radiation and for about a month after completing treatment, I became very tired and developed diarrhea.  That was it as far as short-term radiation effects were concerned.

If I had to describe my most significant treatment side effect, it would not be radiation-related, but rather (at least as best anyone is able to tell me) surgery-related.  I get intermittent partial small bowel obstructions that are quite painful, and put me out of commission for the better part of a week.  Fortunately, these are really "intermittent" in that I sometimes can go a year or a year and a half between episodes.  Intermittent partial small bowel obstructions are in most cases caused by adhesions formed after abdominal surgery.  There are other less common causes, one being trauma to the abdomen or pelvis as the result of a motor vehicle accident. 

The other gastrointestinal issue I have is microscopic colitis.  This is also intermittent, although it occurs fairly often.  When it occurs, I have frequent  bowel movements and/or a small amount of diarrhea, some bloating and gas, but no pain.  While the exact causes of microscopic colitis are not known, it is believed that bacteria, viruses, or toxins may be some of the causes, and it may also have an autoimmune component, although it's not a true autoimmune disease.  An increased risk of developing microscopic colitis is also associated with a variety of drugs, both prescription and non-scrip.  I just switched blood pressure medications last week, because a recent study I read reported an increased association between ARBs (my old BP medication was an ARB) and microscopic colitis.  I'm now trying a calcium channel blocker.  I never feel sick due to my microscopic colitis.  How much of a factor, if any, radiation played in the development of my microscopic colitis is unknown.  I should add that there are drugs that are used to treat microscopic colitis, but so far I have not considered my symptoms severe enough to take that path.

Good luck at your appointment this week!  I hope you are able to get all the answers to the questions you have so that you can make a fully-informed treatment decision.

Maureen

 

 

 

 

MAbound
Posts: 797
Joined: Jun 2016

You've been so helpful and patient with all of my questions. Everybody has. Now it just remains to be seen what tomorrow brings to fill in spme more pieces. I'll let you all know when I know. It sure is turning out to be quite a week for many of us, isn't it? Positve thoughts and prayers for everyone. Love you guys!

MAbound
Posts: 797
Joined: Jun 2016

Thanks for taking all the time you have for me Maureen. I've printed out the pdfs you sent me. It took me awhile because I'm a newbie to how to work with dropbox. I'll read them later tonight, but they look very interesting.

I realize that I'm getting a bit personal, so feel free to ignore this, but I am curious about why they are attributing your issue with small bowel obstruction to the surgery rather than the radiation? Adhesion formation in bowel is also a chronic side effect of pelvic RT as well as from surgery. Did you by any chance have any GI studies with Barium to identify where the adhesions are to help with what to attribute them to? How is it dealt with when you have an obstruction? A week must seem like an eternity when you are in what I imagine must be a lot of pain! I guess I'm kind of trying to understand what it must be like to be living with this issue and thus all of the nosy questions. 

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Lou Ann M
Posts: 996
Joined: Feb 2015

I have had two bowel obstruction issues in the last 13 months and neither were caused be radiation.  The first was a complete obstruction caused by a tumor that intwined itself between my intestines.   Second was a partial obstruction caused by adhesions from the two abdominal surgeries that I had.  Both were diagnosed with a CT scan with contrast.  The first required surgery, the second cleared on its own in less than 24 hours, thank goodness, or I would have had to have anothr surgery.  I was told during the first time that you have to wait 10 days to see if it will clear on its own before Medicare will cover surgery.

Lou Ann

It is really hard to write with a puppy jumping on you!

MAbound
Posts: 797
Joined: Jun 2016

So in otherwords I need to be aware of the possibilty of this happening whether or not I have radiation? Oh, goody! The fun never endsm does it? Thanks Lou Ann and Soup for the info. 

MoeKay
Posts: 191
Joined: Feb 2004

Now I'll try to provide good answers.  The conclusion that my intermittent partial small bowel obstructions are surgery-related is mine, not that of my doctors.  I can't say with 100% certainty that radiation could not have played any part, but after thinking about this issue for many years, I concluded that in all probability I would have experienced this side effect even if I had not had the radiation, due primarily to the nature of my surgery.  Because my gyn-onc saw some troubling findings when I was on the operating table, he performed a radical hysterectomy and pelvic and paraaortic lymphadenectomy.  He explained that my surgery ended up being much more extensive than he typically performed for EC.  Over the years, I've spoken to women who also experienced SBOs after abdominal surgery that was less extensive than mine and who didn't have pelvic radiation.  I seem to recall seeing the statistic that the cause of approximately 60% of SBOs is abdominal surgery.  Therefore, I came to the concludsion that given the extent of my surgery, even absent the radiation, I would in all likelihood have developed SBOs. 

I've made several trips to the ER, and in most cases the SBO could be seen either on plain x-rays or CT scans.  Sometimes nothing was seen, probably because the obstruction had begun to resolve on its own by the time I got to the ER.  Now I don't go to the ER unless the pain does not begin to resolve after the better part of a day, usually after I vomit to release the pressure caused by the obstruction.  I avoid the hospital to the extent possible because I don't want more tests or surgery unless the obstruction does not resolve on its own and becomes life-threatening.  I've had enough obstructions over the pasts 17 years to know what they are and in most cases the severe pain begins to subside after I vomit 5 or 6 times.  I've been admitted from the ER a few times, and the standard treatment has been nothing by mouth for a day or so and intervenous hydration, with IV pain medication, as needed.  Typically, I'm in severe pain for about 12 hours, but an SBO leaves the bloated area close to the obstruction very sore for several days.  I'm often extremely tired after the ordeal, and not back to normal for the better part of a week.  After I've rested and can eat and drink again, I'm as good as new, and it's as though nothing ever happened. 

Hope this answers all your questions!

Maureen

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TeddyandBears_Mom
Posts: 1483
Joined: Jun 2015

Maureen, What a great post! Thanks so much for the information. I hope I never have to experience this, but at least I feel like I'll know what it is should it happen. Love and Hugs, Cindi

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Soup52
Posts: 888
Joined: Jan 2016

I might be off base in commenting here, but I know it is not uncommon to have bowel obstructions from abdominal surgery. I personally know two people who have had this and they do not have cancer, but they have had abdominal surgery.

janaes
Posts: 727
Joined: May 2016

MAbound, I read your first post shortly after you wrote it but have not had time to respond Sorry! Ive been thinking about what you wrote and have read some of these posts after.  I wanted to tell you i have had some of the same thoughts you have had, as i am preparing to do bracytherapy in about a week and a half.  It was tough for me to make my decision.  I still know i really could change my mind if i wanted to.  One thought i wanted to mention from my perspective is the idea of doing radiation if a reacurance happens.  My dad esspecially doesnt even want to think about me having a reaccurance but for me doing external radiation just seemed too unbenifitial to me. I have previosly had radiation from my chin to my bellybutton for a previous cancer i had twenty three years ago.  Athough the radiation didnt cause any painful sideffects for me in all those years i did have a few that were just annoying or that changed my apperance a bit.  to be honest nothing i really worried about too much.  Two of my  currant doctors have told me the radiation i had back then caused my uterine cancer.  With my research i have found, at least in part, that is true for me.  Now im not choosing  external radiation only because of that, but that alone i think would make me seriously consider not to. I also am not doing external radiation because it would be done close to the same area that has already been radiated and i dont want to risk too much radiation to do any long term damage. ( my doctor wont do it for that reason any ways).  It just feels better to me to do  external radiation only if there is a reacurance and at that time the doctors would have something to aim at.  I have MMT stage 2 grade 3 uterine cancer.

Best of luck in your desision.

MAbound
Posts: 797
Joined: Jun 2016

I've been busy making a list of questions for my doctor, making a pros and cons list to get opinions on, and still reading studies to back up what goes into which column. Everybody's input has been such a big help. I still need to have the chance to discuss everything with my doctor before I can make this decision with confidence. There are such strong reasons to both do it and not do it.

janaes
Posts: 727
Joined: May 2016

Yea talking to my doctor was something i had to do before i could make a desision.  Talking to him helped me to feel care for. 

LindyLu
Posts: 72
Joined: Sep 2016

Sounds like you are doing all you can to make an informed decision.  Only you can make this choice.  Stick with your own instincts and I think you'll feel much better once you decide.  Hugs and best to you!  ~LL

takingcontrol58
Posts: 235
Joined: Jan 2016

MAbound,

One other thing to consider before deciding to get radiation.

Have you ever had radiation before, and if so how long ago and to what part of your body?
Every CT scan we get is equivalent to 3-5 years of the radiation we get just from the
environment.  Then you can add on the radiation from mammograms.
Remember, radiation is cumulative, so cancers can show up years later.

Perhaps those who have had prior radiation treatment then get it again are more at risk of side effects 
or are more at risk for cancer in the future.  

I don't know if your onc has discussed this with you but they all should.  My treating onc never
asked about my past history with radiation (which I had) before recommending more for my EC cancer.

Just another thought about who should or perhaps should not get radiation.
Good luck with your onc today.

Takingcontrol58

 

MAbound
Posts: 797
Joined: Jun 2016

Well, I had some atypical cells in my pelvic wash, but my gyn onc is still calling it negative. I'll need to get a copy of the pathology report to see all of the particulars that went into that determination, but that's the good news.

With the negative wash resuts, radiation therapy was back on the table and my gyn onc strongly advocated for me to have it. Just the external because I had the radical hysterectomy. His reasoning pretty much followed a lot of what MoeKay listed, so understanding that ahead of time really helped me a lot today. If I'm going to get a date with NED I need to first spend some time at the radiation spa to get ready. I'm not doing my happy dance about it, but I think with everyone's help I'm feeling a lot calmer. I probably scared myself witless with everything I was reading about acute, chronic, and latent side effects, but hopefully this will mean I'll live long enough to have to deal with them as they arise. I need to follow my own one-step-at-a-time advice. 

Thank you everyone for all of your support and patience with me as I was freaking out. I'm getting a sense that more women than just me were helped by your input, opinions, and advice. It means so much when those of you who are past active treatment are willing to stay on this board to help those of us still going through it instead of just getting on with your lives.

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