Still Terrified
Comments
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MAbound, I am happy to share.MAbound said:How long since RT for you?
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!
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.
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
As I said, I had a hard time wrapping my head around radiation. I don't know if I was a very good patient.
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Clunky siteEditgrl said:I, too, went rounds with
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
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.
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Here is the Thread ChrisMAbound said:Clunky site
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.
Here is the Thread Chris talked about:
http://csn.cancer.org/node/2990710 -
ThanksNoTimeForCancer said:Here is the Thread Chris
Here is the Thread Chris talked about:
http://csn.cancer.org/node/299071Chris 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!
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Those Promised ArticlesMAbound said:Yes!
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! :-)
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
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My own view of the possible
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.
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Radiation
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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How long did it take for yourhenhill said:Radiation
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.
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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Hi EldriEZLiving66 said:How long did it take for your
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
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.
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I only had chemo and internal radiation as frontline treatment
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.
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In Response to Your Question
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
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Thanksbeccabtown said:My own view of the possible
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.
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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Thank you for sharing yourhenhill said:Radiation
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.
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!
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I always seem to have more questions
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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I might be off base in
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.
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Bowel obstructionMAbound said:I always seem to have more questions
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.
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!
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So in otherwords I need to beLou Ann M said:Bowel obstruction
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!
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.
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MAbound, I read your first
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.
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Thanks Janaes
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.
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