Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I had 6 chemo, 29 external radiation and 5 internal radiation treatments that ended one year ago December. I experienced bladder and bowel problems then, and still do over a year later. I also experience alot of pain and ALOT of fatigue. I am unable to return to work primarily because of the fatigue. I also experience falling and numbness in my leg. I wonder if that is normal, and how many experience this post treatment.
Exercise Dehydration Cancer Surgery Motrin Incontinence Back pain Anal cancer Prostate cancer Lymphedema Cervical cancer Tramadol Menopause Pain Neurontin Ambien Diarrhea
Hi Penny,
I got out of those treatments, plus surgery, 2 months before you.
I continue to have bladder problems... mostly a little leaking after I pee. Very frustrating. I was told it was because the radiation left scar tissue in my bladder, and that it would soften over time. The scar tissue has also decreased the capacity of my bladder. I've been to a urologist, beginning 3 months after surgery - after I had some severe incontinence at work... niiiiice.
As for bowels, I have diarrhea more often now than I ever did before diagnosis. My nurse said it could be years before that radiation after-effect gets better. I've been trying to change my eating habits, hoping that it will make a difference.
I can't say I have a lot of pain, but I do get some occasional pains in my abdomen. And the fatigue, well, I was told very early on that it can take over a year to get the chemo drugs out of your system. At the time of treatment, my gynonc extended my leave from work because he could tell I wasn't ready to go back, I was so fatigued.
I did have a problem with leg fatigue... even before I was diagnosed, they had gotten extremely weak. They got better over the last year, but still, even in December, I had to pull my legs up with my hands to get them into an SUV. So I bought a mini stair-stepper from Brookstone. It's made a huuuuggge difference in my leg strength.
Have you talked with your gynonc about falling and leg numbness? The only numbness I've felt is on the top of my right big toe... but that was because of my surgery, damaging a nerve. They said it was common, and were surprised I wasn't told about it beforehand. It has since gotten better. So you didn't have surgery?
I hope some other ladies can help you out here. I know many in this community have not had full-blown cancer, and are dealing with dysplasia and such, so they may not have the chemo/radiation experience. Regardless, it's a wonderful support network, and most of us are pretty darn candid. It's hard not to be, knowing we're all in the same boat.
Take care,
Gerri
Hi Penny,
I think that the effects of chemo & radiation last a lot longer than one would imagine. My treatment (surgery, chemo & external radiation) ended Nov 30 of '06 and I still am experiencing bladder & bowel issues. They've lessened markedly, but I am not the same as I was before treatment. I also had tremendous leg fatigue; it was so bad that I couldn't even walk barefoot. Make sure during this period that you are wearing shoes that support your feet -- a good running shoe, or a clog or even teva sandals -- it really makes a difference( and this comes from a true high heel loving woman!). I also think Kingsley is right about the exercise -- it helps a lot. Maybe start slowly with short walks, swimming or very gentle yoga -- I 've found that it was the one thing that helped me feel like mysef again. Yoga (and core exercises) also have been helpful with the bladder/bowel issues. You may also be experiencing a bit of neuropathy from the chemo which can cause tingling, pain or lack of sensation in your extremities -- that too should improve with time.
As far as pain goes, I sometimes still have some in my abdomen but that is usually a result of a temporary bowel issue or from the lymphedema. I did have horrible pain for about 6 months after surgery because fluid was collecting & scar tissue forming around one of my ovaries but when they biopsied it, they drained it & then I no longer had any pain.
Another thought -- it may sound silly but I started to eat more protein (lean protein) like chicken, turkey fish & I think that also helped me to regain muscle strength, thus lessening the fatigue. I hope this helps. Please feel free to ask more questions.
I had almost the same amount of chemo and radiation and it all ended in August of 2002. I just had a recurrence, but but 5 1/2 years after my treatments, I still had radiation side effects: diarrhea, bladder incontinence, and leg/foot numbness. I was 32 when I had my treatments.
Sorry to give you all bad news, but I think these changes are going to be with us for a very long time. Just be thankful you have your life.
Jodi
hey there, jodi! great to see your posting. how are you doing?!?!? i've been thinking about you, and i hope you're doing well.
Hi Penny, I had 29 ext rad, 4 int HDR and 3 chemos all ended May/07. I recovered from the acute bowel symptoms but have started developing the late onset sypmtoms of bladder cystitis, bowel problems and abdominal pain. The fatigue is better than the in summer but I'm not half as energetic as before treatment. I was stronger and healther with cancer and before treatment than I am now. I am starting to accept and get used to being chronically ill and having less energy. If I get a muscle strain or a cold or sore throat, it will last 2 months instead of 2 weeks. I do what I can to heal. I exercise 2-3 times a week (used to ex. 7-8 x a wk), I am vegetarian and have been for 8 yrs., am trying to eat a 80-20 alkaline/acid diet, gave up caffeine and minimal alcohol. I can only work half time as I don't have the strength to work full time yet. I have recently had a PET scan which stated I was clear for now of all cancer from my eyebrows to my mid thighs. I wear compression stockings most of the time to protect against developing lymphedema. My doctor and I are now investigating the bladder problems with a urologist and then I guess we'll start with the bowel problems and a gastrointestinal specialist. Of course, there is always months of waiting for appts and then results. So I try to manage my lifestyle as best as I can. As I need to rest so much and my eyes get tired, I have taken to renting and watching movie series like Rome, Six feet Under, and now LOST. This is an enjoyable activity that my husband and I can both engage in and is a total distraction from my condition. Oh yes, the menopause symptoms are quite severe, sweats and hot flashes every hour all day and nite. So I use sleeping medication to ensure I get about 5 hours regularly at night. I like you, have no idea what to expect over the next few years. I hope the menopause symptoms burn out in another year and that fatigue does in fact lift after two years. I have definitely learned to be patient this year and I was already a remarkably patient person!
I have not had falling down or leg problems. I am sorry you have this complication.
The radiation side effects are so much worse than I imagined. The Chemo was horrific but once it was done it was done- the radiation seems like the gift that keeps on giving.
As I approach my 2 year anniversary (May 25- yay me!) I'm still dealing with radiation colitis and of course the lovely menopause symptoms. I tried watching what I eat but I'm convinced that the colitis has a mind of it's own - it's a "flare up" type of situation.
I have a love/hate thing going with the HRT and wouldn't wish menopause on my worst enemy. I feel cheated regarding my ovaries (waited too long to have kids- what a dumbass I am) but I'm coming to terms with that one...mostly I'm just coping.
Hopefully one day we'll be able to have a shot of stem cells and all the cancer will disappear without the use of radiation, chemo and surgery!
I am a nine year cervical cancer suvivor dealing with these same types of post treatment symptoms. For several years after treatment I struggled with everything from diahria, neuropathy, edima, bladder cystitus, back pain, etc. I finally found a urologist and an endocronologist that actually listened and over time things have improved some what. In 2001, I did two months of Hyper Baric Oxygen Therapy in the attempt to heal the inside of my bladder. It was a godsend! Not only did it stop the cystitis, but it helped with the colon, back pain, neuropathy and fatigue. For three years life resumed some normalcy. Over time, symptoms returned and doctors have confirmed that the cystitus is back and we are trying to get insurance to pay for the Hyper Baric treatments again.
Also, throughout the years, the one medication that does help with the pain and fatigue is Neurontin. It does give you "brain fog" so I take the largest dose at night before going to bed.
The newest medication in my arsenal is Ambien. Being post menapausal since my mid thirties, I was not getting enough sleep to maintain an active life. Since starting on Ambien, I get at least 7 hours of sleep every night and it helps out tremendously.
I feel your pain and frustration, and I hope some of this information can help you. If anything, please don't wait for them to go away on their own. I have learned to be just as proactive about these post treatment maladys as I was when dealing with the cancer.
Hi, I finished radiation in May 2007 for cervical cancer. My symptoms are worse now. My groin area is sometimes swollen and droopy on the right side. I have pain along with it. Unfortunately when I go to my Gyn Oncologist, my groin is fine. Do I need to see an Urologist? Does anyone know what these symptoms are? Please any help will do.
Hi sidney, are you having any bladder issues? I went to a urologist because I would have a strong urge to pee, but when I did, it was barely anything, and as my bladder emptied, it hurt more and more. And then after I'd leave the bathroom, I'd leak. But there wasn't really any pain in my groin.
So your gynonc doesn't find anything wrong? Have you asked your radiation oncologist about it? It seems like my bladder issues were not a strong subject for my gynonc, as they seem to be radiation-related. My 2 oncs kind of bounced me back and forth before sending me to the urologist.
Hi Sidney, is your swelling worse at the end of a day of standing alot and gone in the morning? I wonder if it could be lymphedema? I had some in my labia and then it progressed to larger areas. It sounds rediculous but to help reduce the swelling during the day I place a rolled up bathcloth between my snug panties and my compression garmet to support the area. I hope I am never in an accident that emergency people will find it. Good luck, keep us posted on what you find out.
Hi Movingforward, My swelling usually happens if I am standing a while, and then it goes away by morning. Other times I swell for no reason at all. I will ask my doctor about lymphedema. Thanks for your help.
Hi Kingsley, I have bladder problems bot no leakage. The pain comes along with the swelling of my right groin area. I will ask my doctors next week. Thanks for your help. I hope your bladder problems are better.
Hi Movingforward, My swelling usually happens if I am standing a while, and then it goes away by morning. Other times I swell for no reason at all. I will ask my doctor about lymphedema. Thanks for your help.
I will be 5yrs cancer free in May. I have had severe pain in my legs and back. I had a bladder caterization a few years ago. The radiation burned holes in the bladder. I am starting to have the leaking and urgency again and my have to have the bladder caterized again. The legs are terrible. I am seeing a rheumotologist and getting ready to see an endocronlogist. i hope they help. Gastro is always on my list do to bowel problems. I think the working out and keeping positive is what we first need to do. My menopause symptoms were aweful, then got better. Now they are picking up again. Sometimes I wonder if seasons, and weather have anything to do with it as well. I agree, radiation keeps giving. If anyone else has experienced low blood pressure, passing out along with these symptoms (high sed rates and protein) let me know. I just had a PET scan and seems good for now.
All of these after effects are not comforting for me because I start radiation on Monday. At least there is a support group and it seems that I will be seeing doctors a lot for a while- or forever. I guess it is better than dying???
Does anyone know anyone who escaped many of these side effects?
I was hoping to at least being able to take care of my kids and home- maybe not go to work again...
and to be able to travel a bit.
This makes me so sad to hear of these physical problems.
I usually like to swim and run...
louiseoliver
All of these after effects are not comforting for me because I start radiation on Monday. At least there is a support group and it seems that I will be seeing doctors a lot for a while- or forever. I guess it is better than dying???
Does anyone know anyone who escaped many of these side effects?
I was hoping to at least being able to take care of my kids and home- maybe not go to work again...
and to be able to travel a bit.
This makes me so sad to hear of these physical problems.
I usually like to swim and run...
louiseoliver
hi louiseoliver, i feel that you are very apprehensive about your radiation treatment coming up on monday.
i had 6 weeks of radiation. and after the 3rd treatment i told my husband that i would drive my self the hour and a half to the hospital because i felt just fine. only on the days of chemo did i need him to drive.
as we all describe our inconvieniences due to radiation, i dare say that there would be a percentage of slim to none that would have, even in hindsight, have chosen to forgo the radiation. the negative side of radiation is something you just live with. as we get older there are tons of things that aren't the same as they were when we were younger and more vital. its part of life. you should still be able to swim, run, take great care of your kids and your home.
but if you have cancer hey what would one expect. its not nor never has been touted as a walk in the park.
i'm glad that i'm still happily alive even if i do have some bowel problems, and am tired. sure beats 6 feet under. : )
Louiseoliver,
Since you like to swim & run, try to keep active while undergoing radiation treatment -- it might help with the fatigue and help your body bounce back a little more quickly. I wish I had been able to be more active while undergoing radiation but I had some surgical complications that made that a little difficult. I was pretty tired during the chemo/radiation stage but I did take walks everyday. Only when I was able to start back exercising did I start to feel like I was beginning to heal. I think trying to keep a lot of your normal routine while undergoing treatment is a good thing but also realize that there will be times when you can't. Allow yourself rest and sleep because both are important for healing too.
I will be thinking about you on Monday.
Tex...
Having read your post and several others I am surprised to find that my prostate cancer treatments have left me w/ some of the same symptoms. I chose to reply to yours because I am considering hyperbaric treatment and looking for any feedback I can gather.
Some background : In 2001 I had a radical prostectomy with some mild, but due to my very oral temperament, very manageable incontinence, in 2007 I had 35 radiation treatments for recidivism of same cancer with a dramatic increase of incontinence, tiredness and some bowel complications. the fatigue and the bowel issues have improved over the year since, plus experience has taught me how to manage them so I don't think of them as issues of concern anymore. the incontinence however has really become life changing.
Could hyper baric improve this? I believe this is totally sphincter muscle driven and not driven by changes to my bladder which are noticeable, but tolerable.
Some things I have learned which may be helpful to you and/or others:
I have backpain issues which I didn't believe had any connection to radiation treatment as symptomology was already there,but after reading posts on this site I am not so sure the radiation is not a contributing factor. Anyway, a physical therapist introduced me to the Mckenzie method of pain management(predominantly one stretch as well as some strengthening exercises) which has been very effective for me.
Pain meds/ My wife suffers from severe chronic low back pain from a serious traffic accident and broken pelvis, she has been taking tramadol for ten years without any known side effects ( liver and kidneys ok), no"fog" she has been able to work full time at very intellectually demanding job.
Hope this helps some.
Happy Easter.
capt
I'm just glad to know I'm not alone and these "side effects" are real and not just in my head! I did 5 chemo, and 25 ext., finished those in Feb. I am now in the process of 6 internal. I have 2 left to go. I will finish those next week.
Add to the discussion