Long-Term Effects from Abdominal/Pelvic Radiation?

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  • Deb9621
    Deb9621 Member Posts: 1
    edited April 2018 #42
    PrettyGirl said:

    Stressed!

    Hello  beautiful ladies! I have a long story like many of you. But on this message I will keep it short. Last summer I received radiation for vaginal cancer. I also received 5 treatments of intravaginal brachytherapy. About 4 months after it ended I began to get "burns", swelling, discharge, itching to name a few. I did the dilators but it didnt help and now I am very worried because the vaginal area is so narrow and painful. Not to mention I have a wonderful UTI! :-( Do you think anything can be done about the narrowng at this point? I am also looking for a new doc, this one doesn't really seem to be interested in helping me.

    vaginal cancer

    I am 2 months post-radiation and 3 months post-chemo for treatment of vaginal cancer (stage 2).  I had 25 external and 4 internal radiations altogether.  I'll say dealing with the burning and diarrhea was much worse than getting sick from the chemo!

    2 months later, my vaginal/anal skin has completely healed :)  and the diarrhea has subsided.  My problem now is an irritation in my gut that I can't quite describe.  Maybe it's acid indigestion?  I can't tolorate coffee anymore and I loved coffee!  Also I do feel pretty achy as if grocery shopping had been a big work out for me.  Maybe it is since I was on the couch for about 2 months during treatment ;)

    I am using a dialator also to try to keep myself open.  The bad news is, my husband "doesn't fit" without pain yet.  We are only 60 years old so I'm hoping over time this will become easier?

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #43
    Deb9621 said:

    vaginal cancer

    I am 2 months post-radiation and 3 months post-chemo for treatment of vaginal cancer (stage 2).  I had 25 external and 4 internal radiations altogether.  I'll say dealing with the burning and diarrhea was much worse than getting sick from the chemo!

    2 months later, my vaginal/anal skin has completely healed :)  and the diarrhea has subsided.  My problem now is an irritation in my gut that I can't quite describe.  Maybe it's acid indigestion?  I can't tolorate coffee anymore and I loved coffee!  Also I do feel pretty achy as if grocery shopping had been a big work out for me.  Maybe it is since I was on the couch for about 2 months during treatment ;)

    I am using a dialator also to try to keep myself open.  The bad news is, my husband "doesn't fit" without pain yet.  We are only 60 years old so I'm hoping over time this will become easier?

     

     

    Dear Deb9621, I want to

    Dear Deb9621, I want to remind you just how much you have been through!!!  2 months post radiation, and 3 months post chemo - holy cow!!! Think of everything you have put your body through and you are still in the healing process. 

    I am a visitor from the uterine board, and I remember one dear woman telling me to use the dialator every day.  It was good advice -  it takes time.  It was hard, but it gets better as time goes.  They also have different size dialators, so keep that in mind as well.

    I understand not being able to tolerate 'something' after the treatment.  For me, it is hot dogs.  No big loss in my book.  Like you, I am a coffee fan, so take it easy and maybe the tolerate will come back.

    Again, be kind to yourself.  

  • GinnyBeach
    GinnyBeach Member Posts: 2
    #44
    Quality of Life after Pelvic Radiation

    I have found this post quite helpful.  Thank you.   I am 6 months post treatment (25 external radiation treatments with weekly Chemo and then 5 internal radiation treatments a few weeks later) for cervical cancer and am cancer free.  Surgery wasn't an option as I was stage 3b due to the location of the cancer cells pushing against my uerter and causing the uerter to be extremely enlarged.  My cancer was considered to be squamous cell and was only showing  in a small area, so the prognosis was positive.  So far, I am cancer free.  The ureter did decrease in size but there was a temporary uretel stent inserted while I was in the hospital about a month ago.

    Let me also say, that in the early 1950s my grandmother in her early 50's (my age as well) had radiation treatments (external and internal) for cervical cancer and lived into her late 80's,  cancer free.  But she lived with the side effects of the radiation treatment for over 30 years.  She had a colostomy, lost a kidney and had numerous skin grafts to heal her burned skin.  She hated being a "sick" grandmother but we loved her and she lived a happy and loved life.  I am wondering now, what all she had to encounter.  My mom said that she dealt with a lot.

    Now back to my story.  I had a relatively uneventful treatment process.  I took the medication as directed before, during, and after each Chemo treatment and had no problem with nausea and fatigue, except the one morning I forget my pills.  My body let me know by noon that I had missed a dose of medicine.  I also had a little diarrhea about 3 weeks into the radiation treatments.  Other than that the entire process was uneventful.  However, I began having unexplained abdominal pain in late January, (3 months post treatment).  My OB oncologist did an exam and said there was nothing he could do and recommended I seek pain management to deal with the pain. 

    It has been 3 months with no quality of life and I've lost 60 lbs in 3 months.  I don't recommend getting sick with severe constant pain as a way to lose weight.  I've had two minor surgeries and spent a week in the hospital and still have no specific answers.

    I did seek a second opinion and have a new OB Oncologist who has been working to get things figured out.  However, about 2 weeks ago, I diagnosed myself with Radiation Proctitis or Radiation Enteritis.  I called my oncologist and he set up an appointment for me to meet with a GI specialist.  I am now on a daily probiotic and daily fiber supplements and have a colonoscopy  scheduled for a month out.  I am continuing to have bouts of diarrhea followed by constipation or very limited output.  I also have abdominal pain and rectal pressure.  I go back to see my oncologist in a few days and I think he's planning to schedule a supracervical hysterectomy, which removes only the uterus.  He said the rest of my internal anatomy is such a mess from the radiation treatment that a full hysterectomy is too risky and could result in the loss of my bladder and bowel.  Besides the GI problems, which are uncomfortable and frustrating, I am also not able to sit up in a chair or even a recliner without extreme discomfort.  The softer the seat the worse the discomfort.  Standing or laying flat are my best options, not the best quality of life in my opinion.

    I have been looking online which lead me here and I've been trying to modify my diet to help with the abdominal and rectal discomfort and the constant need and urgency of using the bathroom.  I hope I don't have a lifetime struggle due to having had radiation treatments but I'll do what I can to help myself have the best qualify of life possible.  Positive attitude and positive spirit is the only way.  Its nice to have a place to come and find out about other similar stories.  Thank you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #45
    Oh miss Ginny, I am so sorry

    Oh miss Ginny, I am so sorry to hear what you are going through.  I am glad you went and found a second gyn onc who is willing to try to help you.  Your side effects are very real and the pain you describe, debilitating. 

    I remember asking the one woman who was running the machine for my planning CT how long she had been doing her job, and she said 22 years.  I said "I bet you have seen this change a lot in that time?" she said, "Yes.  Tremendously".  I remember someone writing on the Discussion Board, "Long Term Effects" or something like that here, and someone said they had COBALT.  Yikes!  That was a different time. 

    People had no idea what the side effects are.  The warriors are always in my prayers.

    P.S - I am a visitor from the Uterine board.  I hope you don't mind.

  • Soup52
    Soup52 Member Posts: 908 Member
    #46
    Ginny, interesting enough we

    Ginny, interesting enough we had a speaker at my local cancer support group from two people who work with hyperbaric treatments. If you are not familiar with it is something that is used to aid healing especially people who have sores that won’t heal and they also maybe diabetic. It involves 5 days a week for usually around 3 months I believe. You wonder what does this mean for us? We were told by the nurse that one approved use of this treatment is for injury to the body caused by radiation, particularly incontinence and diarea . You might speak with your gastroenterologist about this possibility. My gastro PA hadn’t heard of this. I, not sure if I would qualify as I think they believe my problems are from adhesions from numerous abdominal surgeries. Nevertheless it may be worth investigating.

  • RobLee
    RobLee Member Posts: 269 Member
    #47
    Pelvic Radiation Disease

    Hello Ladies - I've been on CSN for a year or so and found this thread thru Google.  I completed two months of pelvic IMRT for prostate cancer (trifecta... RP, ART and HT) back in October. Bowel disruptions started the second week of daily radiation and persisted throughout and afterwards.  RO said I had to wait six months before getting a colonoscopy, which I had yesterday.  Apparently I have radiation colitis.  Most of my searches have landed me on PRD (pelvic radiation disease) pages, with a lot of PROCTITIS posts, but not much on colitis.

    Men do also get cancer (shock!) and I've been looking anywhere and everywhere for information, primarily on coping with the after effects of pelvic radiation.  I'm getting pretty sick of grilled chicken breast and white rice.  My wife prefers "zesty" (or highly seasoned) dishes.  Anyway it's been difficult eating out and not ending up with diarrhea. Heck, I even get it when we don't eat out.  I see two other men have posted in this thread, both of whom have a total of one post each on CSN.

    So I have to ask, please, if anyone knows of any online support groups for folks like "us" who have had to live with radiation enteropathy.  Thanks!

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #48
    Rob, my friend who had

    Rob, my friend who had cervical cancer found that more research on pelvic radiation disease has been done in Europe - not here in the U.S.  Here is a link to a UK site: http://www.prda.org.uk/

    I think there are probably a lot of people out there who suffer from this PRD, and cancer patients are supposed to be grateful they are still living - forget what 'living with' means.

     

  • Soup52
    Soup52 Member Posts: 908 Member
    #49
    RobLee said:

    Pelvic Radiation Disease

    Hello Ladies - I've been on CSN for a year or so and found this thread thru Google.  I completed two months of pelvic IMRT for prostate cancer (trifecta... RP, ART and HT) back in October. Bowel disruptions started the second week of daily radiation and persisted throughout and afterwards.  RO said I had to wait six months before getting a colonoscopy, which I had yesterday.  Apparently I have radiation colitis.  Most of my searches have landed me on PRD (pelvic radiation disease) pages, with a lot of PROCTITIS posts, but not much on colitis.

    Men do also get cancer (shock!) and I've been looking anywhere and everywhere for information, primarily on coping with the after effects of pelvic radiation.  I'm getting pretty sick of grilled chicken breast and white rice.  My wife prefers "zesty" (or highly seasoned) dishes.  Anyway it's been difficult eating out and not ending up with diarrhea. Heck, I even get it when we don't eat out.  I see two other men have posted in this thread, both of whom have a total of one post each on CSN.

    So I have to ask, please, if anyone knows of any online support groups for folks like "us" who have had to live with radiation enteropathy.  Thanks!

     

    My husband has prostate

    My husband has prostate cancer and has both internal and external radiation . There might be some info in the prostate cancer group.

  • JanuaryDaybreak
    JanuaryDaybreak Member Posts: 21 Member
    edited April 2018 #50
    Random radiation musings

    I'm fortunate to have one of the best radiation oncologists in our metropolitan area.  He's been very good about keeping an eye on me.  He said that radiation is very similar to an X-ray in that you're getting a lot of concentrated UV rays at close range.  So it made sense that the affected area would have some pain and rawness.  My RO prescribed Bacitracin (essentially Neosporin) and then silver sulfadiazine for the raw area.  

    I underwent five weeks of radiation after a radical vulvectomy in December 2016, and here's what I've noticed afterward:

    • Fatigue (a mixture of sleepiness and physical exhaustion)
    • Itching (possibly a result of the sunburn)
    • A big lump of scar tissue that became red and warm (Antibiotics helped with this.)
    • Cellulitis resulting from the scar tissue and the itching
    • Abrupt end to monthly cycles (Granted, I'm 46 now, but the RO said that the radiation could have affected my ovaries.)

    Yep, grilled chicken would get pretty old pretty fast.  Embarassed  My radiation oncology team told me to use Imodium AD for diarrhea, since it is a common side effect.  Boo!  The important thing, from what I've been told, is to avoid extremely greasy dishes and foods with a lot of fiber.  A diabetic meal plan might at least get rid of some of the monotony, since you'd be able to enjoy pasta and vegetables.  If your RO office has a nutritionist or registered dietitician, it might not hurt to ask for any information he/she has about the diarrhea and urgency.

    Please, cancer brothers and sisters, know that I send good thoughts your way.  I am so sorry that so many are dealing with the aftereffects of something meant to help us.

  • RobLee
    RobLee Member Posts: 269 Member
    #51
    Soup52 said:

    My husband has prostate

    My husband has prostate cancer and has both internal and external radiation . There might be some info in the prostate cancer group.

    Thanks Soup (and everyone!)

    Thanks Soup, I hope your husband is doing well.  The events surrounding my treatment are covered briefly in my profile and more extensively in my blog here on CSN. FWIW I am very acive in this and several other prostate cancer forums as well as the chatroom here (we may have met before in chat?)

    Reading your profile I see your mention of below the belt cancer in a world dominated by publicity over breast cancer.  Statistics show that PCa and BC rates are the two highest and have approx equal survival and mortality rates. But go to any cancer website and all the photos are of women.  I guess that's because women are more  likely to be active and supportive of each other.

    My wife had non-Hodgkins lymphoma (now in remission for one year) and women who recognoze her salt and pepper hair with the characteristic chemo curl always assume that she had breast cancer. When she tells them that she had primary bone lymphoma it just goes right over their heads. No comprehension. I suggested she just tell them that she had spinal cancer or even simpler, bone cancer.

    Cancer is such a complex disease and there are so many variables. Every case is different. People try to help and say oh I know someone who had that and they are doing fine. It is all well intended but except for those who have actually had cancer they don't know how lonely it can be. Even though both my wife and I have cancer, there are more diferences than similarities. What is similar is the fear and uncertainty, and the potential rammifications of every little decision you must make.

    Thank you all... I will try to reply to each of you later. Today I have another fasting blood draw this AM and need to get going soon......

  • Soup52
    Soup52 Member Posts: 908 Member
    #52
    NoTimeForCancer said:

    Rob, my friend who had

    Rob, my friend who had cervical cancer found that more research on pelvic radiation disease has been done in Europe - not here in the U.S.  Here is a link to a UK site: http://www.prda.org.uk/

    I think there are probably a lot of people out there who suffer from this PRD, and cancer patients are supposed to be grateful they are still living - forget what 'living with' means.

     

    Thank you no time for the

    Thank you no time for the link as I have continued bowel problems and see a gastroenterologist . The info confirms much advice I’ve had from them. I saved the article. My problems aren’t near as bad as some people have. I recommend anyone with bowel problems after surgery, radiation and chemo consult with a gastro doctor . You,ay get some help. The big fear with me has always been has the cancer gone there now.

  • tinapal
    tinapal Member Posts: 2
    #53
    NoTimeForCancer said:

    Dear Deb9621, I want to

    Dear Deb9621, I want to remind you just how much you have been through!!!  2 months post radiation, and 3 months post chemo - holy cow!!! Think of everything you have put your body through and you are still in the healing process. 

    I am a visitor from the uterine board, and I remember one dear woman telling me to use the dialator every day.  It was good advice -  it takes time.  It was hard, but it gets better as time goes.  They also have different size dialators, so keep that in mind as well.

    I understand not being able to tolerate 'something' after the treatment.  For me, it is hot dogs.  No big loss in my book.  Like you, I am a coffee fan, so take it easy and maybe the tolerate will come back.

    Again, be kind to yourself.  

    i just started with my

    i just started with my treatment...i had chemo for 3 months and now i start radiation for 6 weeks   28 external and 3 internal... i then go back to chemo for 3 more months.... i too am scared for the lasting side effects.. i had a total hysteromy and took my uterus out but they said the radiation is due because how the cancer was growing ... it is called a MELF pattern...i am wondering if anyone else has that too.   thanks again i love to read what others have to say too

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member
    #54
    tinapal said:

    i just started with my

    i just started with my treatment...i had chemo for 3 months and now i start radiation for 6 weeks   28 external and 3 internal... i then go back to chemo for 3 more months.... i too am scared for the lasting side effects.. i had a total hysteromy and took my uterus out but they said the radiation is due because how the cancer was growing ... it is called a MELF pattern...i am wondering if anyone else has that too.   thanks again i love to read what others have to say too

    tinapal, this is a rather old

    tinapal, this is a rather old thread - you can see the date in the upper right hand corner of the posts.  Do you have Uterine cancer?  A couple recommendations first:  if you have uterine cancer, please stop in over on that board as it is a little more active and there are a great group of women, also if you want to stay here I would recommend starting a new thread so others can respond to you more easily - I had to search for your post :)

    It is all pretty frightening, so I would suggest talking to the doctor's office, there is probably a nurse who can listen, but I know that can be hit or miss with quality there.  Since you are having internal radiation, brachytherarpy, I would ask if they are going to give you dialators.  They will tell you to use them 3 times a week for 10 mins, but a dear woman I met on these chat boards gave some better advice and she said everyday for 10 mins.  (It was good advice)  I don't know what the MELF pattern is, going to have to look that up, but please know you are not alone.

  • WendyC74
    WendyC74 Member Posts: 1
    #55
    Radiation Enteritis

    My story is a lengthy one. In 2006 I was diagnosed with stage 1A Cervical Cancer. I had a radical hysterectomy. No chemo or radiation needed. In 2008 I was diagnosed with a recurrence stage 3. Another surgery to remove the lesion plus six weeks of chemo and radiation at the same time. I ended up with 32 radiation treatment. I was 33 years old. After radiation I had constipation unable to digest any fruits or raw vegetables. My oncologist suggested hyperbaric oxygen therapy. Other patients had success with it. Fast forward to 2012. That’s when the bowel obstructions started. All of them passed with hospitalization and bowel rest. 2013 I had one that had to be fixed with surgery. They also took my appendix and gall bladder because they looked bad. Ever since that surgery I have had chronic diarrhea. My oncologist said he thought it was radiation enteritis and sent me to a GI specialist. My GI thought maybe blind loop or short bowel syndrome but not much intestine was removed. I had several small bowel follow throughs and colonoscopies. Every test came back with nothing remarkable. Meanwhile I’m still suffering with constant diarrhea and unable to digest anything. I’ve done probiotics, injections in my stomach of meds that were supposed to slow the bowel down. I tried everything you can think of. Finally my GI sends me to a doctor that specializes in the endoscopy capsule. First they want another small bowel follow through. So I go to a different place and the radiologist finds a stricture in the distal ileum. The conclusion was I wasn’t a candidate for the endoscopy capsule because it couldn’t pass. That led to a MRI of the pelvis and abdomen. Why did it take five years for an MRI! The results are Radiation Enteritis! GI doc says they can go in and remove the bad section of the colon. My problem with that is they’ve already removed part of the intestine. What happens if they have to remove a lot? My question is, has anyone else gone through this and do you know of a great place to go. I’m willing to go to the best place for this surgery. I have so much scar tissue and radiation damage to my pelvis and abdomen that they can’t do it laparoscopic. This will be abdominal surgery number 6. So frustrating.

  • Soup52
    Soup52 Member Posts: 908 Member
    edited June 2018 #56
    Wendy, did you have the

    Wendy, did you have the hyperbaric treatment? We had the nurses from the hyperbaric center discuss those with diarea from radiation treatment, but I didn’t hear them say anything about for constipation. I have some of your problems also, like adhesions from prior abdominal surgeries as well as radiation. It’s a real tossup as to what caused my problems, but like you after an incomplete colonoscopy because they didn’t want to get too far in and cause problems, so I then had a virtual colonoscopy. No polops they said so fine. Hmm that doesn’t solve my problems. I always worry about the cancer returning there and  ive heard of others having cancer wrapping around the outside of intestines.

  • Macushla
    Macushla Member Posts: 1
    edited July 2018 #57
    I know this is an old thread, but...

    I was searching for info on Pelvic Radiation Disease and I found this link. I had small cell carcinoma on my cervix that spread to my lymph nodes when I was 23. I am now 52. I was treated with a radical hysterectomy, chemo and 6 weeks of external radiation. In the last 20 years, I have suffered with increasing pain, diarrhea, hemorroids, bleeding, etc. I have seen umpteen gastros, had at least 10 colonoscopies, many scans, and endoscopies. I now know I am lactose intolerant, probably have Barrett's, dumping syndrome, have adhesions, probably don't have celiac or Chrohn's. BUT, am in constant rectal and vaginal pain from going to the bathroom at least 15 times a day. Yet, supposedly there is nothing seriously wrong with me. I believe no one so far has paid close enough attention. It's ridiculous and I'm so sick of living like this.

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