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Post by Tony Crispino on May 1, 2014 20:51:11 GMT -8
It's with great honor to represent SWOG in a survey we posted last year in October. This was a very important survey on survivorship across all cancers to answer quote a few questions about surviving the disease. This week at SWOG the results were posted and I share them here. Very interesting. The Prostate Cancer International folks, namely Mike Scott, and the New Prostate Cancer infoLink were very helpful. On the day I gave him the information there were 6 respondents from the prostate cancer world. But after he took it and ran with it, the #1 respondents were from prostate cancer. I also posted at various other sites and also Facebook. Combined 32.7% of the 1400 respondents were prostate cancer survivors. Thank you very much to PCai. And to my dear friend, Mike! And to you all. Now have a very fun look at the results. Original PostCancer Survivorship Survey Results. |
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Post by Mike Scott on May 2, 2014 3:22:54 GMT -8
Thanks Tony. Glad to be of help. Please see <a href=http://prostatecancerinfolink.net/2014/05/02/preliminary-data-from-swogcrab-survey-on-patientsurvivor-needs/>here</a>.
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Post by Mike Stanley on May 2, 2014 5:39:50 GMT -8
I was diagnosed just as the survey was closing. It is a really interesting and worthwhile effort. The folks who don't like the survivor label seem pretty passionate. I am still ambivalent. I think I agree more with the folks who would downplay it, however. While the term cancer carries frightfully heavy baggage, at least my daily experience of prostate cancer would not compare to the intrusiveness and quality of life impacts that any number of chronic conditions impose e.g. Rheumatoid arthritis, sickle cell disease, scleroderma, COPD and others come to mind. If it weren't for the treatment, my prostate cancer wouldn't even be impacting my day to day.
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Post by Larry on May 2, 2014 8:33:02 GMT -8
Unfortunately, I don't think the medical community is ready or able to forecast "survivor" status if that term is equal to "cured". If you are still alive - you have survived. A job well done! But, there is no guarantee for future survival. Cancer is too complex to conquer with the knowledge we have right now or likely with the knowledge gained any time in the near future. BUT, progress is being made every day and this gives all of us that have survived hope that we can and will survive in the future. I have an aggressive form of Prostate cancer (Gleason 10, T3aN0M0), although all indications are that it has not metastasized. PSA has been undetectable for 2 years. Even with this great result, I prefer to think that I am battling cancer and will be for the rest of my life. Battles are fought daily. My weapons of choice are a positive attitude and striving to achieve a healthy lifestyle. These are things I can control. Control gives me the perception of power over cancer. I choose to be optimistic - so far made easier for me thanks to positive results. - much harder to maintain if results are negative. I chose to lose 40 lbs and educate myself regarding healthy eating. I chose to build muscle mass efficiently by hiring a personal trainer. Much tougher to control is the complexity, expense and politics of cancer research. Also much tougher to control are unscrupulous medical professionals that choose to perform unnecessary procedures either through ignorance or greed.
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Post by Tony Crispino on May 2, 2014 9:18:19 GMT -8
Larry I appreciate your thoughts. Thank you for them. I look at the term as like this:
sur·vi·vor
sərˈvīvər/Submit
noun
1. a person who survives, especially a person remaining alive after an event in which others have died.
"the sole survivor of the massacre"
2. the remainder of a group of people or things.
"a survivor from last year's team"
3. a person who copes well with difficulties in their life.
"she is a born survivor"
I do not know who would not qualify after a diagnosis of cancer under #1 or #3. I am a survivor under both and proud of it.
:-)
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Post by Tony Crispino on May 2, 2014 9:19:58 GMT -8
Another note: Larry great job of taking control of your health. From my peak weight of 229 on hormonal therapy, I weigh 189 today...That's 40 pounds for me too.
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Post by KC on May 2, 2014 9:29:28 GMT -8
Whoo-hoo, we're #1
Just kidding...great job!
Great SWOG infographic in the link, too.
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Post by Richard Wassersug on May 2, 2014 13:28:33 GMT -8
I wish that the researchers would take this topic further and into the realm of hypothesis testing. Since there is much disagreement in terms of whether individuals treated for cancers accept or reject the label "survivor", it would be nice to know if acceptance or rejection of the label correlates with actual survival. I could imagine it going either way. Perhaps people who openly call themselves "survivors" demonstrate a positive commitment to surviving and actually survive longer. Alternatively it is possible that folks, who use that term are more likely to be complacent (or even delusional), and less attentive to their long term health and welfare.
I personally would be more enthusiastic about embracing the term survivor, if I new that it was more than a buzz word and actually linked to my long term prognosis.
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Post by Tony Crispino on May 3, 2014 9:33:51 GMT -8
Richard how nice to hear from you. I have not had a chance to read your new book as yet but I'll get to it. SWOG will not be conducting such a trial as this was a request of information by our committee to better understand the needs of patients and the way they think. We were not surprised by these results. We fully understand that "surviving" cancer is a term that each of us have to define for ourselves. I don't like being left eternally with the term patient either. It offers me no hope but being a survivors does. Kind like reading the obituary after one dies, I see by whom they are survived by. They are always survived by a future subject of the obituary page. :-) As I always say life is a terminal condition. But until such time as it plays out I am a survivor. For those that may be interested in Richards writings on prostate cancer and other subjects... Click Here |
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