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Chronic Radiation Enteritis

Tonora
Posts: 8
Joined: Oct 2011

I finished treatment (radiation and chemo) in May 2011 for anal cancer. I had acute radiation enteritis while I was going thru treatment, and now 1&1/2 years later I have been diagnosed with chronic radiation enteritis after having many bouts of bowel obstruction. The last bout landed me in the hospital for three days this past week. The obstruction cleared itself, and I am home but very scared of having another bout - exttreme pain, vomiting, etc. Doctors say it is very dangerous to operate after radiation, but I was seen by a surgeon who will be ordering a lot of tests to see if the narrow spots/and or adhesions can be located. Are there others out there with this problem, and if so how are you dealing with it?

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm sorry you are having to deal with this. I really can't speak from personal experience about this side effect, but I hope there is something that can be done to help you. I would tread cautiously towards surgery because your doctors are right to be concerned about healing after radiation. I hope you'll keep us posted on what the plan is for you and I wish you all the best.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I am sorry you are not feeling well. I just want to tell you that i had major surgery for another cancer about 8 weeks after finishing treatment for this cancer. Nobody ever told me that surgerywas dangerous after radiation. I am sure if at were true, they would have told me that. Try not to worry. I hope that they can help you soon.

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mp327
Posts: 3120
Joined: Jan 2010

My reference to surgery post-radiation and possible healing complications deals with surgery to the radiated area only, not to other regions of the body. Once skin has been radiated in the anal area, surgery may result in poor healing.

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sephie
Posts: 544
Joined: Apr 2009

radiated tissue does NOT heal well if at all. just ask about this. i have a major skin tag on my anus that gets irritated but MD Anderson will not remove it due to healing issues. hugs to you sephie

Phoebesnow
Posts: 453
Joined: Apr 2011

Hi,

I am currently having these symptoms. What tests were used for your diagnosis? I had a colonoscopy in July and they could not get past the turn on the left side, this is where most of the pain is. I was doing well for a long time and now I am having these blockages. My doctors are also against surgery as they say everything has fused together. Did you take or do anything to pass the blockage? Do you have difficulty going/straining? Do you have much blood?

Tonora
Posts: 8
Joined: Oct 2011

There does not seem to be anything I can do to prevent an episode. I have had so many episodes now, that I know when one is coming. I have indigestion, pain in my belly and then I start vomiting and when the blockage eases, I start to pass large amounts of stool that was behind the obstruction.All of this takes about nine to ten hours to run its course. In the hospital last week, they put me on a clear liquid diet and then a full liquid diet until the obstruction cleared itself. This blockage was in my small intestine. The surgeon that is working with me wants me to try a low fiber diet for three months along with Miralax.
She will be ordering upper and lower G I series tests to try and determine where the narrow parts of my intestine are. If these tests are not definitive, she may have me undergo a enteroclysis test. Apparently, surgery is only performed as a last resort after having radiation to the pelvic area.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I read all the posts and you bravely sound like you are following it through and it sounds like they can help you. Please keep us posted. This is the first time I have heard of this.

All the best,
Sandy

jvds
Posts: 1
Joined: Feb 2013

Tonora

Hi. My deepest condolences to you. I do not speak out of my own experience, but I can give you an idea of what we are going through and what we are doing.

My mom received radiation in 1989 for ovarian cancer. She was given one year to live even with treatment. Miraculously, she survived after receiving treatment for 2 years. She is still alive today, but it had come with a price – one she had to accept over the past year. She had multiple obstructions the past 10 years and had to undergo an intestinal resection (Dr’s cut out 30cm of the small intestine where the obstruction was) in 2007. Due to radiation scarring, there are always a risk of poor healing and complications. Luckily she recovered, but it took a lot out of her and it was a 2 year recovery process. She is in and out of hospital currently, suffering from reversible obstructions, severe diarrhoea, malabsorption and dehydration. She is incontinent and has to wear nappies. She is only 59 years of age.

What we found out after many years is that Chronic Radiation Enteritis is not curable, but manageable. Obstructions are always a threat, so low fibre is the way to go. Eat smaller portions more regularly, chew food properly  and avoid fresh and dried fruits at all costs! Also try to avoid lactose (a sugar found in milk and some milk products), fried foods, spices, too much caffeine (coffee, pop) and alcohol. Yogurt with live cultures, soluble fibre such as psyllium or oatmeal, probiotic supplements and herbal teas (ie: peppermint) may help in managing some symptoms.

Use a good multivitamin and make sure it contains vitamin D, as most CRE patients are vit D depleted.

Remember that each CRE patient are unique and have different triggers when it comes to diet and that is one reason there is no set diet for all. Keep a food diary, so you can determine what your triggers are and cut them out.

I am a pharmacist and my wife a medical doctor and we have found this to be a theoretical challenge. You will not find everything in books, but by talking to people and applying advice as most things are found out by trail and error.

Best regards, and keep strong.

Jan

South Africa

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I thank you very much for your post, as I was recently hospitalized for an obstruction of my small intestine.  I received pelvic radiation in 2008 for anal cancer and this was the first episode of blockage that I have experienced.  I appreciate you sharing with us the recommendations regarding diet.  I have severely restricted my intake of fibrous foods and found that to be helpful.  I agree that smaller portions and thorough chewing of food is important.  I am tolerating fresh fruits and veggies, but only if they are completely cooked and soft.  Curiously, I had eaten stir fried broccoli before the episode on the Sunday evening prior to my hospitalization on the following Wednesday morning for another episode, following which I had eaten broccoli again.  I have taken to eating creamed soups that I can add lots of veggies to and whiz in the blender, making them easily passable through the intestines.  Yogurt has become a staple for me.  I have also taken a Vitamin D supplement, so I find it curious that Vit D deficiency may be a contributor to enteritis. 

I am glad that your mom is doing well and managing her enteritis.  I wish her all the best and thank you for your helpful comments.

Martha

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

Thank you Jan for the info.  Like Martha I am trying to deal with HOW to eat what I NEED to eat without having what I refer to as a "crappy, crampy day".   I added an apple a day to my diet forcolosteral mantainace and paid the price with oneof those days.

Will try baking apple, or smoothie.  Thanks Martha

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I have found that cooking some fruits in the microwave is a very delicious way of enjoying them.  I cut up apples, pear, peaches, nectarines--whatever looks good at the grocery store--and put them in a big pyrex measuring cup.  You can add a few raisins or craisins if you like, sprinkle with cinnamon and nuke for about 2 minutes on high or to desired tenderness.  Sometimes I will top it with a little vanilla frozen yogurt.  It's almost like having pie alamode without the crust.  Anyway, that has worked for me for several years now, even before the intestinal blockage.  I have tried smoothies, but just can't into drinking my meals.  I'm definitely a chewer! 

Are you taking a probiotic supplement or eating Greek yogurt?  Both are very good for your gut.  I am eating two small containers of Greek yogurt a day now and am feeling much better.  Also, if you are not using something like Metamucil, you might give it a try.  It's definitely a guessing game sometimes--what will not cause issues and what will.  If you find what works for you, please share!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I am a big believer in a product called Green Vibrance. It has billions of probiotics and if you just read the label, you will realize you cannot buy this much nutrition at the grocery store. The Greens are organic and freeze dried. I also am a big believer in Psyllium Husks. The colo rectal surgeon at MSK recommended I take this and, though skeptical at first, but was was advised even though I love to cook and cook with lots, of vegetables,e tc. there is no way we can get this quality fiber without it. I now make two smoothies a day with almond milk, banana, frozen cranberries, blueberries or cherries, Nature's Balance Complete Vitamin Supplement mixture for women (chocolate flavored), green vibrance and psyllium husks. I find it to be yummie. I nibble on granola and walnuts and eat only one "genuine" meal a day now. I am beginning to think I only need to eat that hot meal for the sake of chewing and tasting. Otherwise, I feel pretty satisfied. Oh yeah, I love frozen yohurt even though I don't eat it for the pro biotics since I get plenty. Calcium yes! But plenty of that in walnuts. I hope the walnuts don't prove to be a problem ever. Eating nuts is controversial regarding some of these digestive issues. Anyway, I don't know if this is the answer, or if I will still suffer the same effects described here one day since I also have diverticulitis. Green Vibrance is a wonderful product you can buy at most health food stores. It has been around a long time. Longing for my smoothie gets me out of bed in the morning!

All the best,

Sandy

Farmer60
Posts: 2
Joined: Feb 2013

My daughter has the same thing. She had anal cancer and the radiation has damanged her really bad. She can not eat with out throwing up and having sever pain. We are in and out of the hospital but no answers. She has lost down to 106 lbs and is 5' 9" all bones. I am at a loss as to what to do for her. The doctors just pump her full of pain meds and nausea meds and send her home. We need help.

Phoebesnow
Posts: 453
Joined: Apr 2011

So sorry for your pain and your daughters.  I can hear the desperation in your words.  I too am 5'9, I now hover around 114 to 119.   I was always around 127 to 130 b4 tx.  I have been dealing with these same issues even to some degree b4 tx.  Is that possibly the same for your daughter?  I have been aftermy drs for many years and like you I would not give up and accept this as my fate. 

 

After my most recent partial blockage I had some fibroids emboli zed.  As of right now things are going better and havestopped taking softness and the bleeding has stopped along with pain and vomiting.  Greekmyogurt I think has helped too.  

I am eating again.

As hard as it maybe to find answers and resolutions do not give up.  Fight to be normal again.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I am so sorry your daughter is dealing with this.  From the symptoms you describe, it sounds just like what I experienced when I had an intestinal blockage 3 weeks ago.  It was the most pain I'd ever had in my abdominal area.  It is nothing to take lightly and your daughter's doctors should be investigating this more thoroughly.  The ER doctor immediately ordered a CT scan for me, which showed the blockage.  Has she had this done?  There are also other tests that can be done to diagnose a blockage.  Sometimes surgery is necessary to correct this problem.  I recommend that you take your daughter to a different doctor for a second opinion, taking with you any previous tests or scans she's had.  Something is not right and needs to be diagnosed and dealt with.  My doctors told me that intestinal blockages can cause a rupture, which is very, very serious. 

I have found that sticking to a diet that includes lots of soft foods or liquids has been most helpful.  Sometimes the intestines just need a rest from processing food such as meat, fruits and veggies.  I have been eating a lot of Greek yogurt, like Phoebesnow has suggested, along with creamed soups, pudding and ice cream.  Also, when eating, I am now paying close attention to how much I chew my food.  I am eating some fruits and veggies, but no raw ones, only cooked--and some of those take a spin in the blender first.

Please keep us posted on how your daughter is doing.  I am very interested in these types of things, now that I have experienced it for myself.  My heart goes out to her.  If she is, indeed, suffering from intestinal blockage, it is very painful.  I hope she can get a proper diagnosis ASAP.

Farmer60
Posts: 2
Joined: Feb 2013

It looks like we maybe going back to the ER . Kim has been throwing up for two days non stop. This has been going on since Dec. We are in and out of the ER about every two to three weeks. Kim had anal & rectal cancer back in 2011. She had chem and radiation wich got rid of the tumor. She felt good for about two months after treatment then all hell broke loose. She can't eat anything with out it coming up and has lost so much weight. The doctor she is she is starving to death that her body mass is weigh to low. Last week she was in the hospital for 5 days with a blockage and they ran a tube down her nose to drain it. She was home for two days when the throwing up started again. My child is 42 years old and has no life anymore. My heart is broken because I don't know what to do for her and get no answers from the doctors. Kim said she felt better when she had the cancer how sad is that. Im on here looking for help. I went and bought some of the things that the others are eating and will give that a try.

 

                                                                                 Kim's mom

                                                                                       Linda

eihtak
Posts: 887
Joined: Oct 2011

Just want to say that you and your daughter are in my thoughts and prayers. This is definately not normal recovery side effects. Do you need a different doctor maybe?? I know that is not always easy due to location, insurance, etc., but may be necessary at this point. Are you near a large city with more options? Fortunately I have had a fairly smooth recovery so far, but as a mother I can not imagine watching one of my children suffer as your daughter is. You must be a very strong woman!

Again, ...... praying for some answers that will help!

LaCh
Posts: 537
Joined: Dec 2012

I don't normally reach out to people on the forum to say how sorry I am, simply because others are much better at that than I am.  But hearing about your daughter really affected me deeply. I AM sorry that she's going through what she's going through and understand completely her comment that she felt better when she had the tumor. I can offer you nothing, no concrete help, no ideas, no advice. All I can offer is my heartfelt sorrow that you and your daughter are going through this, and my promise to keep you both in my thoughts. 

claire1705
Posts: 1
Joined: Dec 2013

Im so sorry to hear about your daughter I have the same problem, I had cervical cancer 2009 had radiotherapy but a month after started getting pains and got to the stage youre daughtr is lost loads of weight I then was taken into hospital I then under went in an operation to unstick part of my bowl that was stuck to my womb and take a part out that had narrowed a few hrs after that opp my bowl  started leaking I then was rushed back in and had more cut out I then had an ileostomy bag for 6 months it now has been rejoined, but still have episode lots of thinks I cant eat I.e nuts mushrooms popcorn well the list goes on I stick to what I know is fine as im 38 and have an 8 year old daughter I need to look after, things are ok but every 8 wks or so I have another blockage.  I really hope it gets sorted as I remember how much pain it is. Claire

DVR2010's picture
DVR2010
Posts: 1
Joined: Mar 2013

I absolutely understand how you feel, I read the posts here and I see me.  I had surgery Sept 2010 for Stage IV (4) Adenocarcinoma Endometrial cancer.  I had major surgery to remove the 4 inch tumor that had attached to the colon.  Part of my colon was also removed and I have a permanent descendng colostomy. I then did the chemotherapy and radiation treatments.  After all the treatments were done and I thought I was in the clear and was starting to rebuild my body from the core up, well in June of 2012 I was hospitalized with a small intestine blockage and since then this has been an ongoing problem.  I have had 4 stays in the hospital (including the June 2012) and I have had several bouts at home.  I have been told that this is Radiation Enteritis caused by the radiation treatments to my abdominal area.  These bouts of radiation enteritis are very painful, even childbirth did not hurt this bad.  The enteritis may be incurable but I am constantly searching for ways to avoid, battle, ease, well just basically find a way to deal with it.  

Today I had another episode, but I started noticing a belly ache type feeling under my ribs and above my belly button, then this morning the bad pains set in.  Tonight I am feeling a little better but I will be on liquids, yogurt, jello, broth, etc until it completely calms down.  

I also have a parastomal hernia and this month I get that fixed in hopes that this will help ease things.  Then I have agreed to try a medication called Trental (Pentoxifylline) that has been said to help soften the scar tissue in the intestines.  I am very against medications but I have to try because living with these episodes is bad enough, not trying would be worse.  I am also goiing to start some of the diet suggestions I have read on here, there are so many good tips.  

I am not a doctor, but I have read tons and I am very interested in hearing what others here have to say.  And if my treatments help then I will update and hope that something can be found to ease this side effect. 

So to Tonora, and others, you are not alone. 

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I'm a little confused. Isn't treatment specific for type of cancer and this is the anal cancer bd? Causes and Treatment vary by cancer site?

eihtak
Posts: 887
Joined: Oct 2011

Yes, treatment is usually cancer specific, but side effects often are shared by members on other boards, so treatment of said side effects are common.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

As someone who suffered a very painful small intestinal blockage in late January, I am glad to see you on this board sharing your similar experience.  You are right--a blockage is very painful!  I spent a little time in the hospital with mine and, like you, have had a few less serious episodes since.  Mine, it is thought by my doctors, was caused by the radiation treatment I received for anal cancer in 2008.  However, they did not rule out some type of intestinal bug or infection.  Like you, I have had to tweak my diet drastically since this happened to calm down my bowel.  However, I haven't had an episode for over a week now and am getting a little more brave with my food.  I realize that this can be a recurring theme and after I eat something that's not on the special diet, I sit and wait for the pain. 

I'm sure you know all about following a liquid/soft diet with very little fiber.  I bought a Nutri-Bullet, as recommended by some of the posters on this site, and have been using it to make some very nutritious smoothies.  I also became a fan of homemade creamed soups, as I refuse to eat canned soup!  I just had to keep in mind that altering the texture of any high-fiber food does not change the fiber content, such as blending.  The fiber is still there.

I still eat lots of yogurt, pudding, ice cream, eggs, mashed potatoes, etc.  I do fine with meat, but am not a beef eater, and I eat fish and eggs.  Cheese seems to be okay.  I avoid at all costs anything containing seeds, such as some berries and kiwi, and nuts.  This has definitely been a learning experience for me--someone who has always been able to eat whatever they wished. 

Thanks again for posting here and if you can add any tips on things to help avoid future episodes, I would be most appreciative.  I wish you all the best with the medication.  I hope you'll find it effective and without any bad side effects.  Please let me know how that goes.  My best to you!

jbug2
Posts: 50
Joined: Mar 2013

I had radiation and chemo for anal cancer ending in Jan., 2013.  I found your second paragraph (location of the pain) interesting, as I've tried to figure out what on earth is going on in this area of my bowels.  I frequently am starting to feel "stuffed" like I ate a very big meal.  I sit here with the pressure that's on my right upper side, near the bottom of my ribs, out from my belly button.  My husband and I are trying to continue on with life, but he's complaining that I have a strange diet --- I am starting to avoid meat, beans, anything that might cause this stuffed up constipated feeling.  I think I'll try out some of the Greek yogurt and cream soups, etc., suggested on here.  I'll see the doctor in January.  This has been happening for about a year, but yesterday was so BAD, my husband finally went out and got Mallox for me, the result was GAS release.  I can't remember gas like this since about the time I started the rad and chemo.

I came on here looking specifically for what this might be, and it's actually comforting to find many comments about this same experience after treatment.  Thanks.

jbug2
Posts: 50
Joined: Mar 2013

I had radiation and chemo for anal cancer ending in Jan., 2013.  I found your second paragraph (location of the pain) interesting, as I've tried to figure out what on earth is going on in this area of my bowels.  I frequently am starting to feel "stuffed" like I ate a very big meal.  I sit here with the pressure that's on my right upper side, near the bottom of my ribs, out from my belly button.  My husband and I are trying to continue on with life, but he's complaining that I have a strange diet --- I am starting to avoid meat, beans, anything that might cause this stuffed up constipated feeling.  I think I'll try out some of the Greek yogurt and cream soups, etc., suggested on here.  I'll see the doctor in January.  This has been happening for about a year, but yesterday was so BAD, my husband finally went out and got Mallox for me, the result was GAS release.  I can't remember gas like this since about the time I started the rad and chemo.

I came on here looking specifically for what this might be, and it's actually comforting to find many comments about this same experience after treatment.  Thanks.

Ouch_Ouch_Ouch
Posts: 293
Joined: Aug 2014

Cautionary tale: Many antacids have magnesium in their formula, like Maalox and Mylanta. (As in the laxative, Milk of Magnesia.) Especially with people like us, prone to enteritis, it has the potential to cause some strong diarrhea, even if taken according to the package directions. If this is a problem for you, ask your pharmacist to recommend a non-magnesium-containing alternative and remember to drink a lot of replacement fluids.

cbernt
Posts: 1
Joined: Aug 2013

I have the same problem as well, however, I just finished radiation for cervical cancer at the beginning of May.  They keep telling me I don't fit the usual symptoms of radiation enteritis because it happened so soon and I don't have chronic diarrea, but that is all it could be.  I am however, having partial obstructions.  Was in the hospital the first time for 4 days then put me right back in 2 days after they released me.  I have dealt with almost weekly flares at home, although the pain is almost more than I can bare.  I had another CT scan last Friday so the doctors could verify it is radiation injury causing the obstructions but no one ever informed me of the results, just called me back to the hospital for another CT because they found blood clots in my lungs.  Wanted to keep me over night but I convinced them to let me go.  So tired of hospitals!  I am so bloated most of the time that when the pain subsides the discomfort is almost as bad.  I am a small person and I look like I am carrying around a beach ball under my shirt.  The reason that I felt I needed to post on this site is not to tell my story, but to let everyone know that my doctors said that the only known treatment for radiation enteritis is hyperbaric oxygen therapy.  I had a consultation with the only hospital in my state that offers it.  It is basically 100% oxygen in a tube that you lay in for a couple hours each day.  I was told it would be 5 days a week for 8 weeks.  I am willing to try anything!  My insurance denied my claim as experimental, but the hospital assured me that the appeal would go through and I will be able to get the treatment.  The only down side is that if it isn't radiation enteritis causing my problems then the treatment won't help.  I guess the oxygen repairs the damaged organs.  I feel for what everyone here has gone through.  Cancer isn't enough but we have to deal with this too?  I have many times felt like the cancer didn't make me sick, but the treatment has, and now I may be this way forever,  Cat

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I am so sorry that you have experienced obstructions too.  They are so very painful!  I have an episode every couple of weeks or so.  I have asked my doctors what is causing this and they don't really know, but are guessing the radiation treatment and resulting adhesions.  However, in my case, I have found that when I have an episode, it usually follows a vigorous abdominal workout or lots of bending and twisting.  I have stopped doing some of my normal exercises and it has helped.  The other thing that bothers me is certain foods can trigger an episode.  I ate some brussels sprouts the other night and the next day I had that oh so familiar pain.  I have found that when the pain comes on, if I lie on the floor on my back and put my arms up over my head, doing a full body stretch, it helps ease the pain.  A friend of mine who is a doctor also told me that lying on my right side during an episode will help, so I almost always sleep on my right side now to avoid problems.  My colorectal doctor and a surgeon who I had a consult with both told me that neither food choices or exercise would bring on these attacks.  However, I have to disagree, since they always come on after exercise or eating a high-fiber food.  I was also able to find information on the internet substantiating my theory about the exercise and abdominal compression being a trigger.  I can usually tell when an obstruction is coming on by looking at my abdomen in the mirrow to check for distention.  Like you say, a "beach ball."  The pain is excruciating and a different type of pain than none other, so I know immediately what's going on.  I have only been hospitalized the one time.  It's dangerous to ride these things out, but I don't want to be going to the ER every other week either.  I have read that HBO is an effective treatment.  I hope you can get set up for it and that it will help you.  Please keep me posted.  I wish you all the best.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

After treatment, the dietician at MSKCC advised me to add back foods one at a time, the last foods being legumes and then, finally anything from the cabbage/broccoli family. She cautioned me that the cabbage/broccoli family was probably never going to be in the cards for me again.

I used to love brussel sprouts, cole slaw was a must with fish and broccoli was a mainstay, but I put them in as instructed and as she thad cautioned me, discovered they are no longer digestible for me. She told me to grate carrots and I could probably tolerate them and I bought a carrot "sharpener" that looks like a pencil sharpener and shaves off carrots into pretty little curls. But otherwise, I no longer eat chunks of carrots unless they are cooked.

Psyllium Husks are the answer for any fiber we need. I learned a new trick. I make home made old fashioned oat meal in a rice cooker with dried blueberries in almond milk. Then I put the Green Vibrance, the Psyllium Husks and the Calcium with boron and vitamin K2 right in there and stir it up. It is such an amazing breakfast. I decided the smoothies I was making with the frozen fruit were just too cold for in the morning now that the weather has turned. I find eating a good breakfast to be really important to my day and how it is going to go for me. The Psyllium Husks are really important. I hope everyone here read the MD and Pharmacist couple's recommendation about them. They have made my bowel issues manageable.

This doesn't mean I won't ever have an obstruction. It could still happen but I am glad the dietician gave me these tips.

Sincerely,

Sandy

Ouch_Ouch_Ouch
Posts: 293
Joined: Aug 2014

I just read this heart-breaking thread. Does anyone know what became of Tonora, cbernt, and especially Farmer60's poor daughter?

Fissures and diarrhea are nothing in comparasin to this.

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