One patient with glioblastoma still alive nine years later
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Certain types leave survivors with worse mental and physical well-being, study finds
Wed Oct 31, 2012 11:23 PM
It also depends on the stage of the cancer and the general condition of the person when they were diagnosed. If someone who had stage 3 or 4 of some kind of cancer but feels fine now, don't put thoughts in their head that they should feel run down. There are a lot of variables, and the scientific community should think twice before issuing blanket statements.
Wed Oct 31, 2012 11:37 PM
This is very hard to quantify. My cancer was caught at a "late" stage, III, but it usually is, and it's highly curable in most forms. However, the treatment is very often brutal, and most often leaves people with some permanent changes. For us throat cancer folks, this can mean feeding problems, some type of physical disability, and pain, all to various degrees. Hardly anyone escapes without at least one. Whether you feel that this is a decrease in quality of life, though, is subjective. Is my life quality compromised by the fact that I can't eat many things anymore? I don't really feel that it is, but others may not have the same perception.
Thu Nov 01, 2012 02:12 AM
I also feel that the "low quality of life", especially in rarer or harder to cure cancers, can come from the fear that it may return. After going through something so traumatic, it's difficult to live a life where you're constantly looking over your shoulder.
Thu Nov 01, 2012 02:57 AM
Esophageal Cancer survivors also face many of the issues listed above for throat cancer survivors by Sdurnell. The surgery to remove the esophagus and reshape what is left of the stomach is brutal and can leave the survivor with eating issues, fatigue, nutrition problems and many other problems that add to poor physical / mental health.
All survivors face some issues either physical, mental or both.
Thu Nov 01, 2012 03:19 AM
After having nasophyngeal carcinoma in 2009, my quality of life has changed dramatically. I have dry mouth which causes eating problems being only able to eat moist soft foods. I cannot enjoy the activities that I did before my cancer. My throat is in constant pain from the dryness. I now have severe arthritis in my jaw joints and am told that my only option is to total joint replacement. I am in a state of fight or flight at all times due to my dry mouth. This effects my concentration and ability to focus. This side effect of head and neck cancer is very hard to deal with.
Thu Nov 01, 2012 07:11 AM
Agree about oesophageal cancer - in my case I had to be resussitated 3 times after the surgery and was on dialysis for 3 weeks...that is going to affect you mentally, not to mention the physical limitations...and because I look 'normal' people do not allow for the fact that I have been through so much and fatigue is called laziness. Am a 6 year oesopheagel cancer survivor )diagnosed 2nd October 2006 at the age of 32). Mother of a 17 and 30 month old.
Thu Nov 01, 2012 01:56 PM
I was diagnosed with cancer of the tongue in 2008, had surgery, re-diagnosed 2 months later, had that removed, had chemo and radiation in 2009 after lymph node in my neck was also found to be cancerous. Was cancer-free until April of this year; another cancer of the tongue, this time further back. Big chunk of the right side of the back of my tongue removed, plus my right tonsil ( no cancer in it, though.) Woke up with trach, feeding tube, and a big space in the back of my mouth. Couldn't swallow even drops for a long time after...was re-hospitalized after I got back home, got a PEG tube put in. Just had it removed last month. I can eat much better now, but still very slow going, and there's still a few things that are hard to eat. When the first scan after surgery showed a "suspicious" spot, I was sent to MD Anderson in TX. I had lots of prayers going up for me. The scan they took, AND the biopsies they took, showed NO CANCER! Prayer works! I can attest to the fact that all this is hard to go through; the pain, the choking, hard-to-breathe feeling, the worrying, the "chemo-brain", the fatigue and very low energy...If it weren't for my faith in God, this would have been almost impossible for me to deal with.
Thu Nov 01, 2012 09:56 PM
I have had 3 different cancers in 7 years. All have been caught early. But the latest one, diagnosed in July 2012, really caught me off guard, so I'm experiencing that 'looking over your shoulder' syndrome. Now I will always dread the next checkup as well as continually be thinking about the end of life. I'm grateful for the 3 survivals; it can be mentally challenging at times, however. I've had very good medical care, but I can't seem to find a lot of emotional care from professionals.
Fri Nov 02, 2012 07:48 AM
Fri Nov 02, 2012 05:01 PM
I believe that there will be a need for more "long-term survivor" care. With the advances in medical care, many more of us are living long enough to exprience the long term effects of the treatment that saved our lives. We are in a position where we have to be thankful for such things as joint problems, chronic pain/ headaches, GI trouble, fatigue, changes in body image, etc. (the list is unending for some) because the alternative would have been unquestionably worse. Although for some experiencing severe depression along with all their physical issues, death seems almost preferable.
But we press on. Daily balancing our (necessary) hyper-vigilance with positive thinking and thankfulness for whatever health we have (also necessary). And we support each other because unless someone has 'been there' they just don't get it, no matter how hard they may try.
There needs to be a specialty in the medical communitee for survivors that is staffed by survivors. Too bad we're so tired...I'd go to med school...
Fri Nov 02, 2012 05:06 PM
I should have mentioned, I'm a 32 year hodgkins and 20 year NHL (brain) survivor.
why did that message post twice?
Sat Nov 03, 2012 05:21 PM
I have to agree with all of this. I had a stage IV tonsil tumor that spread to lymph nodes. But I just want to add, and this is a very odd feeling to have: this whole cancer thing was both the worst and best thing that ever happened to me. And my quality of life is both far worse, and yet often, far better. There are some amazingly positive things that have happened, only because I had the cancer. Would I recommend throat cancer as a way of self-improvement? Of course not. On the other, for me, it did work. As one person pointed out, there are too many variables; one of those is how a person judges "quality" and then WHAT a person judges as being worthy of being judged at all. To some of us now, some things just don't matter, and one or more of those things may be part of this study. And vice versa.
I applaud the effort though, esp. anything that brings attention to an area of health care that greatly needs it. As 'npride' noted, we need survivors to staff these programs, but we're mostly too fatigued. On the other hand, 10-20 hours/week wouldn't be so bad........ but that's why I enjoy going to my support group, AND, when I meet someone at a party, function, etc., who has "been there". As noted also above, they "get it", and I find great comfort in talking to those who do.
Sun Nov 04, 2012 08:59 AM
I work full time and am a mother of a 1.5 and 2.5 year old and a 6 year oesophageal cancer survivor - I would not have time to help others as well as any good time that I have is devoted to my children. I find it fustrating that others mistake genuine fatigue for laziness, even my closest family...I am supposed to be 'over it' but the physical and mental effects remain. Yes, I am luckt to be alive but do not call me lazy...
Mon Nov 05, 2012 03:31 AM
I hope our cancer support dollars are going to more productive work then this article. These trends seem to be stating the obvious. Call me a dis-satifisied customer, but the article closing with planning horizons of improvement or 5-10 years, doesn't give me any warm feeling either. Authors get moving, the EC clock is ticking.
Wed Nov 21, 2012 10:10 PM
Thu Jan 03, 2013 02:36 AM
Fri Aug 02, 2013 03:48 PM
Cancer totally changed my life...physically, mentally and financially. I've been NED 4 years, but now having my liver "watched". I am to the point if it recurs, I am going where it takes me. If it is time to go, it is time to go. My quality of life is low. I wish everyone peace.
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