Chronic Radiation Enteritis
Comments
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Hi Tonora--
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.0 -
Tonora
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.0 -
MarynbMarynb said:Tonora
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.
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.0 -
Tonorasephie said:yes be cautious
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
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?0 -
Chronic Radiation EnteritisPhoebesnow said:Tonora
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?
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.0 -
Tonora
Hi. My deepestTonora
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
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Hi Jan--jvds said:Tonora
Hi. My deepestTonora
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
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
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Thank you Jan for the info.jvds said:Tonora
Hi. My deepestTonora
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
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
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Lorikat--Lorikat said:Thank you Jan for the info.
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
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!
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Green Vibrancemp327 said:Lorikat--
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!
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
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My daughter has the same
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.
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Farmer60Farmer60 said:My daughter has the same
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.
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.
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Farmer60Farmer60 said:My daughter has the same
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.
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.
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My daughter Kimmp327 said:Farmer60
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.
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
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Linda...Farmer60 said:My daughter Kim
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
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!
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farmer60Farmer60 said:My daughter Kim
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
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.
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Radiation Enteritis
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.
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Adenocarcinoma Endometrial cancer.DVR2010 said:Radiation Enteritis
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.
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?
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