Still Terrified

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Comments

  • janaes
    janaes Member Posts: 799 Member
    MAbound said:

    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.

    Yea talking to my doctor was

    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. 

  • MoeKay
    MoeKay Member Posts: 476 Member
    MAbound 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. 

    Good Questions

    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

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited October 2016 #44
    MoeKay said:

    Good Questions

    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

    Maureen, What a great post!

    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

  • MAbound
    MAbound Member Posts: 1,168 Member
    MoeKay said:

    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

     

     

     

     

    Thanks Maureen

    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!

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited October 2016 #46
    One other consideration in decision for radiation

    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

     

  • Scotgirl
    Scotgirl Member Posts: 31

    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.

    Thank you for the bluntntalk

    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.

  • MAbound
    MAbound Member Posts: 1,168 Member
    Decision Made

    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.