Post Cancer Fatigue
Comments
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I'm a stage four colon cancer survivor. I'm one year out of chemo with a clear report form my Onc, but I had a two week fatigue stint that had me spiralling into depression. My joints ached and my energy was low. I felt anemic, but my blood work was fine. I had similar responses from my Oncologist as well. I feel my energy getting low from time to time, but I've been pretty good overall. I keep physical and watch my diet, but I would like to know more. Can something trigger it? I was fine for a year. what can prevent it? Any tests?...0
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Hi:
I want you to know that I suffer from the SAME thing... I'll be relatively ok for a couple days if I pace myself, and then I am DEAD TO THE WORLD. My mind says go, but my body literally won't move. I too was SO validated when I read the CURE magazine articles. I also have CHRONIC extreme pain treated with meds and acupuncture. I have seen MANY specialists and am 3 years post dx of Stage 3C Rectal Cancer. I had Oxyaliplatin/5FU/Leucovorin and 8(?? hard to remember)weeks of radiation. Then I had an 8 hour coloanal pull through surgery to resect my rectum. They got clear margins and 10 nodes removed. Turned out, even after therapy,7/10 nodes came back positive for cancer. I had a temp ileostomy, reversed after 6months. I had a heck of a time healing due to the radiation. I ended up stricturing at the anastamotic (connection site) and painfully dilated my anus/rectum daily as well as going in to the hospital for several dilations. Despite all this, the diameter of my rectum was the size of the tip of my pinkie. Despite this, I was still incontinent. To top it all, I have been and still am unable to pee (I self-cath 6+ times a day)and I have no erectile functioning, even with trying every device and medication and needle, since my original surgery. I know you are probably saying-- "you had a crappy surgeon." Truth be told, I knew this BOARD Certified Colorectal Surgeon, had seen his work in the OR MANY times and knew he was well qualified. I believe the placement of the tumor (2-3 cm from the anus and the size of a golfball) caused permanent damage to the tissue and nerves. When I had my colostomy surgery, the surgeon reported SO MUCH scar tissue and adhesions that he couldn't enter the pelvic cavity. Oh, and I DID have Adjuvant chemo... EVEN MORE AGGRESSIVE because my oncologist was so worried with the positive nodes, and the fact I was diagnosed at 31. I had the Saltz regimen for Adjuvant chemo...Irinotecan/5FU/Leucovorin. It was SO brutal I could only complete a couple months of treatment. I am currently "in remission" and am VERY HAPPY for this.
So now I, like you, would like to know how many people ACTULALLY suffer from Chronic Pain and Severe fatige... not to mention decreased cognitive functioning (a neuropsych has evaluated me and said I have a profound deficit in cognitive functioning and short term memory due to chemo). I would just like to hear other stories to know I'm not the only one suffering these "After Effects of Cancer or Treatment."
Fondly,
CancerDad0 -
Many thanks for your response to my post cancer fatigue message, I appreciate knowing that others are having bouts of this fatigue long after their treatment has ended. I just feel that much more needs to be done in keeping cancer survivors informed of what can go on in their lives due to all they have been through. I found a lot of interesting and helpful information on the Lance Armstrong web site. Go to www.livestrong.org, under All Topics, go to Late & Long Term Effects, then Fatigue, then Detailed Info. As to your questions, can something trigger this fatigue, prevent it or any tests for it? I really have no idea, but I do know I am going to certainly go into it more when I see my oncologist in a few weeks. I recently had several weeks where I felt much better, had very little of this fatigue, then all of a sudden, would have days when it was back again. So, it is a strange thing that you just never know when it will appear and all you can do is get a lot of rest and pace yourself.levensweg said:I'm a stage four colon cancer survivor. I'm one year out of chemo with a clear report form my Onc, but I had a two week fatigue stint that had me spiralling into depression. My joints ached and my energy was low. I felt anemic, but my blood work was fine. I had similar responses from my Oncologist as well. I feel my energy getting low from time to time, but I've been pretty good overall. I keep physical and watch my diet, but I would like to know more. Can something trigger it? I was fine for a year. what can prevent it? Any tests?...
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I am a two-time cancer survivor. Stage 3 nasal cancer and stage 2 prostate cancer. I am only 47 yrs old, but after four surgeries I have bouts of fatigue. Doctors cannot figure it out and it is driving my wife crazy because I am tired most of the time. I have researched some Cancer manuals that say Fatigue after multiple surgeries is not uncommon. I have been lucky in the fact that I did not receive chemo or radiation, but the fatigue factor is a very puzzling situation, even for my doctors. I try to excersize as much as possible and try to watch my diet. I don't think the doctors have any answers for fatigue.CancerDad said:Hi:
I want you to know that I suffer from the SAME thing... I'll be relatively ok for a couple days if I pace myself, and then I am DEAD TO THE WORLD. My mind says go, but my body literally won't move. I too was SO validated when I read the CURE magazine articles. I also have CHRONIC extreme pain treated with meds and acupuncture. I have seen MANY specialists and am 3 years post dx of Stage 3C Rectal Cancer. I had Oxyaliplatin/5FU/Leucovorin and 8(?? hard to remember)weeks of radiation. Then I had an 8 hour coloanal pull through surgery to resect my rectum. They got clear margins and 10 nodes removed. Turned out, even after therapy,7/10 nodes came back positive for cancer. I had a temp ileostomy, reversed after 6months. I had a heck of a time healing due to the radiation. I ended up stricturing at the anastamotic (connection site) and painfully dilated my anus/rectum daily as well as going in to the hospital for several dilations. Despite all this, the diameter of my rectum was the size of the tip of my pinkie. Despite this, I was still incontinent. To top it all, I have been and still am unable to pee (I self-cath 6+ times a day)and I have no erectile functioning, even with trying every device and medication and needle, since my original surgery. I know you are probably saying-- "you had a crappy surgeon." Truth be told, I knew this BOARD Certified Colorectal Surgeon, had seen his work in the OR MANY times and knew he was well qualified. I believe the placement of the tumor (2-3 cm from the anus and the size of a golfball) caused permanent damage to the tissue and nerves. When I had my colostomy surgery, the surgeon reported SO MUCH scar tissue and adhesions that he couldn't enter the pelvic cavity. Oh, and I DID have Adjuvant chemo... EVEN MORE AGGRESSIVE because my oncologist was so worried with the positive nodes, and the fact I was diagnosed at 31. I had the Saltz regimen for Adjuvant chemo...Irinotecan/5FU/Leucovorin. It was SO brutal I could only complete a couple months of treatment. I am currently "in remission" and am VERY HAPPY for this.
So now I, like you, would like to know how many people ACTULALLY suffer from Chronic Pain and Severe fatige... not to mention decreased cognitive functioning (a neuropsych has evaluated me and said I have a profound deficit in cognitive functioning and short term memory due to chemo). I would just like to hear other stories to know I'm not the only one suffering these "After Effects of Cancer or Treatment."
Fondly,
CancerDad0 -
I am right there with you all. I am an almost 5 yr survivor of Acute Lymphoblastic Leukemia. I had an almost 7 in tumor wrapped around my heart at the time of diagnosis that was spreading. I spent 17 weeks in the hospital over a 7 month period. Only 8 of those weeks were actual chemotherapy, the rest was all the lovely side effects. After chemo I had 22 days of radiation on my heart which caused lung and heart damage, so I now have asthma & 2 leaky heart valves. I "almost" had a stem cell transplant and was given additional radiation on my head, as this cancer reappears in the central nervous system and brain. I am still unable to return to work, due to the severe long-term, late-effects of my treatments. I still struggle with daily acceptance of my "NEW NORMAL". This includes poor long-term and short-term memory, chronic fatigue, low energy, joint inflammation and pain with increased arthritis and bursitis, menopause at 33yrs, mitral valve prolapse, neuropathy in feet and hands, poor flexibility and physical strength & trouble sleeping among other things. Add to the fact that my platelets have been dropping for a year and I have had chronic sinusitis (sinus infections that go on for 5 months and take 3 antibiotics to clear up) and it's no wonder I get more depressed. The more depressed you get, the worse you feel physically and mentally. I try to combat all this with positive "self-talk" and I try to REMEMBER that this is my "new normal" I can't get mad or upset, just try to get thru each day and stay as healthy as I can. I realize that there is no magic pill or cure. My body had significant damage from my treatment. It can't overcome things that wouldn't bother someone else as easily now. It takes my body more energy and strength to get thru what is considered an easy task, like vacuuming. That always wears me out and I can count on more pain from doing it. I talk with a psychologist on a regular basis ( you get 45 min with them compared to 15 min with a psychiatrist) to make sure that I am maintaining my mental health, as I try to maintain my physical health. I have to SCHEDULE fun for myself. It might be going to see a movie, taking a walk on a nice day, getting together with friends, going to a scrapbook store -- whatever it takes to keep me balanced. I volunteer as a reading tutor at my son's school for 30 minutes each week, which helps me to feel like I have a purpose. I just try to do what I CAN do each day and give myself the grace to not be perfect, to make mistakes and to even have "rest days" where I do nothing but rest on the couch or in bed. They seem to help my overall energy.
Yes, chemo-brain and chronic fatigue after treatment are very real, but you can find a way to live with them. Give yourself a break and DON'T expect to live at the same hectic pace you did prior to cancer. Remember to LIVE - cherish each day with family and friends and NEVER give up! Blessings to you all! Tiggertoo0 -
I'm so sorry you all have been through so much - makes me feel almost (but not quite) "lucky". I have (or had, depending on how one looks at it, I guess) State 2b invasive breast cancer; 4 surgeries; chemo (8 rounds) and am supposed to be on entiestrogen treatment, but have stopped taking it for the very reasons described - chronic fatigue, joint and bone pain, neuropathy, "chemo-brain", etc. I haven't read the CURE article, but will get the magazine. I feel relieved to know that others are experiencing these after effects, or whatever they are. I'm not very far past treatment (last chemo was Nov. 11, '06), and was already discouraged because I'm not feeling that much better than when I was on chemo - but now (after reading your stories), I guess I'll just work on adjusting my attitude! Thank you so much for sharing - and blessings to each of you.CancerDad said:Hi:
I want you to know that I suffer from the SAME thing... I'll be relatively ok for a couple days if I pace myself, and then I am DEAD TO THE WORLD. My mind says go, but my body literally won't move. I too was SO validated when I read the CURE magazine articles. I also have CHRONIC extreme pain treated with meds and acupuncture. I have seen MANY specialists and am 3 years post dx of Stage 3C Rectal Cancer. I had Oxyaliplatin/5FU/Leucovorin and 8(?? hard to remember)weeks of radiation. Then I had an 8 hour coloanal pull through surgery to resect my rectum. They got clear margins and 10 nodes removed. Turned out, even after therapy,7/10 nodes came back positive for cancer. I had a temp ileostomy, reversed after 6months. I had a heck of a time healing due to the radiation. I ended up stricturing at the anastamotic (connection site) and painfully dilated my anus/rectum daily as well as going in to the hospital for several dilations. Despite all this, the diameter of my rectum was the size of the tip of my pinkie. Despite this, I was still incontinent. To top it all, I have been and still am unable to pee (I self-cath 6+ times a day)and I have no erectile functioning, even with trying every device and medication and needle, since my original surgery. I know you are probably saying-- "you had a crappy surgeon." Truth be told, I knew this BOARD Certified Colorectal Surgeon, had seen his work in the OR MANY times and knew he was well qualified. I believe the placement of the tumor (2-3 cm from the anus and the size of a golfball) caused permanent damage to the tissue and nerves. When I had my colostomy surgery, the surgeon reported SO MUCH scar tissue and adhesions that he couldn't enter the pelvic cavity. Oh, and I DID have Adjuvant chemo... EVEN MORE AGGRESSIVE because my oncologist was so worried with the positive nodes, and the fact I was diagnosed at 31. I had the Saltz regimen for Adjuvant chemo...Irinotecan/5FU/Leucovorin. It was SO brutal I could only complete a couple months of treatment. I am currently "in remission" and am VERY HAPPY for this.
So now I, like you, would like to know how many people ACTULALLY suffer from Chronic Pain and Severe fatige... not to mention decreased cognitive functioning (a neuropsych has evaluated me and said I have a profound deficit in cognitive functioning and short term memory due to chemo). I would just like to hear other stories to know I'm not the only one suffering these "After Effects of Cancer or Treatment."
Fondly,
CancerDad0 -
I too am cursed with fatigue. I am going into another bout with cancer after a 7 month remission from Ovarian cancer stage 111c, But even before the new cancer was found I was exhausted all the time. I am sure this is an after effect that should be documented and addressed. Thanks for letting me know I am not alone.0
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I am fatigued all the time too. Having survived cervical cancer stage 3b. 7 weeks of radiation therapy, both internal (brachytherapy), and external and 5 weeks of chemo. That was a year ago, am now cancer free but suffering all the after affects including constipation, nauseous, vomiting, and pain. God knows what other side affect I may suffer since my oncologist didn't tell me nothing about the after affects!!! I have also been having severe heartburn too. I wonder if that's another after affect also!!!0
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fatigue
You aren't alone. I am an 18 year survivor of NHL and I am just as tired as ever after treatment, maybe worse. I now also have other cognitive problems like forgetfulness and confusion and excluding main points from my conversations which leads to all kinds of misunderstandings. I have other major late effects as well but wont go into them here. I had total body radiation as well.
Good luck with your fatigue issue, all you can do is rest when you can I suppose, I haven't been able to get back to work since transplant.
God Bless.0 -
im glad im not alone. inblueroses said:fatigue
You aren't alone. I am an 18 year survivor of NHL and I am just as tired as ever after treatment, maybe worse. I now also have other cognitive problems like forgetfulness and confusion and excluding main points from my conversations which leads to all kinds of misunderstandings. I have other major late effects as well but wont go into them here. I had total body radiation as well.
Good luck with your fatigue issue, all you can do is rest when you can I suppose, I haven't been able to get back to work since transplant.
God Bless.
im glad im not alone. in 1998 i was diagnosed with molar pregnancy and recieved iv chemo. ive been cancer free for 10 years and im extremely tired all the time. I can wake up and be so tired 3-4 hours later and actually go back to bed even when I was up I didnt do anything to be tired. So what can be done about this? what type of do you see or what blood tests? I already know rest but I am always so tired and its really hard to fuction. What other side effects are there cause my hair still falls out time to time0 -
Diet, Stress, and Sleep loss!
In my effort to maintain a saturated fats and reduced sodium diet, I denied myself red meat and other protein rich foods, becoming borderline anemic. My oncologist advised me to treat myself to a hamburger one a week, yielding a return of my hematocrit and hemoglobin to well within the "normal" range.
Stress and sleeplessness, due to worry about damn near everything also continues to sap my body of energy leaving me fatigued, despite my dietary progress. What generally happens is that I become totally worn out to the point of falling asleep on the couch early in the evening and sleeping for 10 or 12 hours to catch up on the sleep I didn't get that week.
I find that keeping my life as simple as possible is my key to retaining what remains of my sanity. I now work in a low-paying field that allows me to conclude my work day by 3PM; keep my monthly expenses low by not subscribing to either cable or cell phone service; and, using my car only for getting to and from work, getting in my cardio by hauling my groceries in an old gym bag. By keeping it frugal and simple, I can have more energy for what counts!
Love and Courage!
Rick0 -
side effectsterato said:Diet, Stress, and Sleep loss!
In my effort to maintain a saturated fats and reduced sodium diet, I denied myself red meat and other protein rich foods, becoming borderline anemic. My oncologist advised me to treat myself to a hamburger one a week, yielding a return of my hematocrit and hemoglobin to well within the "normal" range.
Stress and sleeplessness, due to worry about damn near everything also continues to sap my body of energy leaving me fatigued, despite my dietary progress. What generally happens is that I become totally worn out to the point of falling asleep on the couch early in the evening and sleeping for 10 or 12 hours to catch up on the sleep I didn't get that week.
I find that keeping my life as simple as possible is my key to retaining what remains of my sanity. I now work in a low-paying field that allows me to conclude my work day by 3PM; keep my monthly expenses low by not subscribing to either cable or cell phone service; and, using my car only for getting to and from work, getting in my cardio by hauling my groceries in an old gym bag. By keeping it frugal and simple, I can have more energy for what counts!
Love and Courage!
Rick
Carolyn asked about cancer treatment side effects so I will throw out a few of mine. The hair problem is something I have not faced. But 5 years out of treatment I always have dry skin. I can never get enough fluids. Memory loss! When my smoke detector goes off to remind me I have something on the stove its not a good thing. Or I am listening to the rain on the roof and my poor dog is standing out in it. Its lucky he can't talk and has a short memory too. Everytime I go to the store someone keeps moving my truck because I can't find the dang thing! Learning new things is a struggle. Like Terato I have no use for adding stress in my life. I would rather live in a tent in the woods. But I help others in my area with cancer as it has its rewards. I have no use for a cell phone because I hate phones. For years everytime I got a call it was bad news. My immune system is half of what it was. If there is a virus or infection going around I will proubly have to deal with it. A good day is when I don't wake up in pain. Radiation progressed arthritis in my spine and it finally put me on disability. My neck fell apart and my left arm quit working. It took 3 months to get it back. I try to do things around the house. But as my coordination is off sometimes, my wife has very few good dishes left. And after a cup of coffee goes flying across the living room or kitchen my wife usually tells me to sit my butt on the couch. My kids just say "Geeezzz Dad". I am about to make a T-Shirt that says "Cancer Survivor, One day at a time, AS IS NO WARRANTY". That might remind my family that I still struggle everyday and I am not perfect! Slickwilly0 -
hair and fatiguecarolyn17603 said:im glad im not alone. in
im glad im not alone. in 1998 i was diagnosed with molar pregnancy and recieved iv chemo. ive been cancer free for 10 years and im extremely tired all the time. I can wake up and be so tired 3-4 hours later and actually go back to bed even when I was up I didnt do anything to be tired. So what can be done about this? what type of do you see or what blood tests? I already know rest but I am always so tired and its really hard to fuction. What other side effects are there cause my hair still falls out time to time
I had thinning hair from time to time and I was diagnosed by a dermatologist with stress trauma. Apparently he said that there was a shock to my system (physical or emotional ) and this caused the hair loss and that it goes in cycles with this type of reason for the hair thinning that is why it comes and goes. I forget what the cycles are (how many months) but it made sense. Fatigue, I am the same. I sleep and 3 or 4 hours later have to rest. Because I have so many other reasons for the fatigue they can't actually diagnose Chronic Fatigue Syndrome but one specialist is sure that is what it is. Do you have flu like symptoms that come and go for no reason? Sore throats same thing? These are other symtoms of CFS. There are sites that tell you about it online. It was suggested that accupuncture might help the fatigue but it's too expensive for me to keep up.0 -
post surgery/treatment fatigue
I had cervical cancer surgery/treatments back in 1998 & to this day even THINKING about doing something as simple as cleaning my glasses, blowing my nose, much less get up to go to the bathroom is a MAJOR energy drain.
I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.
This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.
Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.
Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.
I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)
Hang in there!!0 -
Post cancer fatigue and memory lossblueroses said:fatigue
You aren't alone. I am an 18 year survivor of NHL and I am just as tired as ever after treatment, maybe worse. I now also have other cognitive problems like forgetfulness and confusion and excluding main points from my conversations which leads to all kinds of misunderstandings. I have other major late effects as well but wont go into them here. I had total body radiation as well.
Good luck with your fatigue issue, all you can do is rest when you can I suppose, I haven't been able to get back to work since transplant.
God Bless.
I am a MDS/AML cancer survivor, I was wondering if any other survivors recieve long term disability payments. I cannot manage at a job well enough to be successful, I need ADD meds and sleep meds to sleep and function, I worry all the time about being cut off of disability payments, does anyone have these same concerns and problems.0 -
fatigue - long term
I am a 18 year survivor of NHL and the tiredness just gets worse for me. It's common to have fatigue right after treatment and the fatigue can get worse over time. Many have reported this. Like someone else said on here all you can do is rest when you have to and try and not overdo it but of course as soon as I am feeling up to doing something FINALLY I have to overdo it or it never gets done. Like someone else said, mine too goes in patches, a couple of days feeling not too bad then flat out for a few days recouperating. Sheesh. No choice but to try and work with it. Unfortunately oftentimes friends/family don't understand why we aren't fine after treatment so this adds another dimension to our issues. This board does understand and that is invaluable. Blessings to all, Blueroses.0 -
Fatigueblueroses said:fatigue - long term
I am a 18 year survivor of NHL and the tiredness just gets worse for me. It's common to have fatigue right after treatment and the fatigue can get worse over time. Many have reported this. Like someone else said on here all you can do is rest when you have to and try and not overdo it but of course as soon as I am feeling up to doing something FINALLY I have to overdo it or it never gets done. Like someone else said, mine too goes in patches, a couple of days feeling not too bad then flat out for a few days recouperating. Sheesh. No choice but to try and work with it. Unfortunately oftentimes friends/family don't understand why we aren't fine after treatment so this adds another dimension to our issues. This board does understand and that is invaluable. Blessings to all, Blueroses.
Hi blueroses - I had ovarian cancer in 2004. I ended up with Stage IIIC. I worked up until last November when I couldn't do it anymore. The overwhelming fatigue is awful. I can't think clearly. Only have about 4 good hours a day to do what I need to do. I've tried provigil, but it stopped working after 3 weeks. My doctor has put me though I don't know how many tests - all came back normal. I recently read the article about Post Cancer Fatigue and was relieved to know I'm not crazy. I'm 51 and thought that leaving work would help me - it hasn't. Same old fatigue is still here. I exercise and improved my diet. Do you happen to know if SS Disability supports Post Cancer Fatigue?0 -
Fatigue, Disability, ADAtamiwv said:Fatigue
Hi blueroses - I had ovarian cancer in 2004. I ended up with Stage IIIC. I worked up until last November when I couldn't do it anymore. The overwhelming fatigue is awful. I can't think clearly. Only have about 4 good hours a day to do what I need to do. I've tried provigil, but it stopped working after 3 weeks. My doctor has put me though I don't know how many tests - all came back normal. I recently read the article about Post Cancer Fatigue and was relieved to know I'm not crazy. I'm 51 and thought that leaving work would help me - it hasn't. Same old fatigue is still here. I exercise and improved my diet. Do you happen to know if SS Disability supports Post Cancer Fatigue?
I see a late effects doctor at Sloan Kettering who specializes in those suffering from treatments that cured their cancer. In my case, over 19 years ago, for Hodgkin's Disease. Though I don't recall the conversation from last October exactly, we did talk about the fact that my fatigue has increased, especially following emergency heart surgery (late effects related) last April. The important thing that he told me, it was "normal". It was definitely a relief to have this conversation in front of my wife, totally unprompted. So at least, now, she knows I'm not just being lazy, and I don't feel like it.
As far as social security covering disability for fatigue, not too sure. Perhaps this is something that can be talked about with your doctor first, and then perhaps a representative from your social security office.
That being said, under the last presidency, the ADA (Americans With Disabilities Act) was amended to include (and please forgive my political incorrectness), that people with cancer, being treated from cancer, or dealing with issues as a result of, are considered disabled. The writing is actually more detailed than my summary, but perhaps that may give hope that since we fall under protection of the ADA, that it would make it more possible and less complicated to get SS benefits.
I don't know if that answered your question, but I hope it gave you some direction.
Paul E. (hodgkoid2003)0
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