For low grade cancer and low grade Gleason very often with life style changes there is no need for therapy, you die from something else.
Here most are high grade, advanced, maybe with metastases, maybe high Gleason, so the majority is trying an aggressive approach, doing whatever possible from radiation, ADT, Zytiga, chemotherapy, etc...
Hoping to gain time and that a new therapy will come up. But with that comes also side effects and sometimes other troubles (heart, etc), lot of stress, examinations, etc..
I know it's human to try, to hope, and also to fear not to do what medicine offers.
But is there any research actually comparing doing all that against just life style changes? How much time do we gain, how much quality do we loose?
Very difficult to find any research on that.
If you still do not have pain and no urge to do something (tumor pressing spine, or other organs) you could also opt to just do life style changes and live and only do something (palliative radiation or other) when really needed, or beginning therapies only at that point.
Do you know anyone decided to go this way for quality of life vs quantity or because couldn't stand treatments, or because of other issues (heart)?
Plenty of proof that your approach will cost you many years. Lots of guys on this stuff over here including me. The consensus is it’s not that bad for the guys who work out regular and hard.
My 2 cents: When cancer is aggressive and advanced, it's gotten out of hand and well out of the reach of what lifestyle changes can fix. My PSA went from 2 to 216 in 13 months while I was a healthy weight and running 20 or more miles most weeks. Without medical intervention I figure I'd be dead within a year, with quality of life declining the whole way.
Aggressive treatment is working very well for me, and I expect to live for many more years with decent quality of life. If the treatments continue to work and I achieve remission, then lifestyle changes could make a big impact in how long I stay in remission, as the tumor load will be much smaller and easier for my body to deal with on its own.
I've had all of the above. ADT to start, surgery to remove a bladder tumor not related to the prostate cancer, radiation to a met on the spine, and now chemo. After chemo Zytiga will be added. Also Xgeva for the bones. I still shovel snow, split firewood, go out to dinner, and ran and walked 4 miles yesterday. I do rest more than I used to and the first week after chemo is no picnic, but life it's still enjoyable.
As usual, Tom is on it. The unique nature of advanced PC simply does not allow lifestyle changes as a remedy.
Yes, I think that the sad nature of PC requires us men to redefine "quality of life" in ways that are extremely personal and are often linked to our identity. I've always played the role of jock and then ex-jock in my life and, initially, PC affected that... or I let it affect that.
But then I realized that I'm still an ex-jock - I love to compete and hate to lose. I've had ADT (still on), radiation, and chemo.... the feeling of being "rag-dolled" by those things pales in comparison to seeing my wife and kids every day and being able to interact and do things with them. - Joe M.
I am a PC survivor (RARP, well-contained, in remission) and it was a life-changing experience for me. It made me realize several profound truths:
1. We are all temporarily able-bodied.
2. We are all mortal.
3. Cancer is only one of an infinite number of things that will take us off the planet.
4. The only thing we can do is live as best we can in this vanishing moment.
With deep respect to those fighting more serious battles, I doubt I would be quite as sanguine if I was looking my own imminent demise squarely in the eye, but quality of life is not to be overlooked when choosing treatment. In some respects, a serious illness can give one the opportunity to clear a few items from their bucket list and get one's affairs in order, which is a gift denied to many for whom death comes suddenly and unexpectedly.
For anyone at any stage of life, and at any state of health, it can be helpful to keep our own inevitable mortality at the center of our awareness at all times. It makes it easier to live more richly in the moment and to better cope when your time comes.
Any research on advanced prostate cancer? With metastases or at least not contained? Because already in this study the 5 year survival difference for prostate cancer is as they say "not significant", maybe because just 5 years.
There's plenty of studies about individual complementary therapies. But no one in his right mind thinks that any alternative REPLACES standard of care. It would be unethical to do such studies.
At least three of the therapies I’ve used were not even approved therapies when I was diagnosed 12 years ago. I think if I had adopted only lifestyle changes rather than being aggressive, I might not still be alive. I still hope for new therapies.
i've been around awhile, going for my 11 year. now whether i die from this disease or whatever is out there no one knows for sure. a person must think draw it out do the treatments and move on. if u run out of different meds, no clinical trials available and your health is good except this then u will die from this disease as it continues to grow and multiply. the good news they are always bringing in new meds trying new stuff and u might go on until u just die of something else. i'm 72 going on my 11 year all i'm mad is i was dx to early in my life. if i had been in my 70-80s i wouldn't have care about my age but--------- i have no pain and continue to fight this disease until when i decide to let it take me.
The Younger that one receives a bad dx the heavier the losses... I too , was pissed off about it at fifty -three... I was angry at self for screwing up not only my existence but more importantly my newlywed wife’s.. Suicidal ideation came after 9-16 chopping of the boys..it’s taken a couple years to be able to take a deep breath and contemplate my lot with APC.. I don’t want to live forever on this planet.. nor shall any of us do so..Ive had some anger managemant problems in life before APC . I reached new lows and anger highs these past years..With acceptance comes peace. We all know that anger damages the vessel it’s carried in more than what it’s poured on.. I dont want to spend Whatever time I have left stewing in my Own juices of anger. Not fair to the innocent bystanders , namely my wife.. If we’re honest we’re all pissed off about something.. That explains man..
Thank you so much for asking this what-if-I-didn't-follow-standard-of-care question, which my husband and I think about every time well meaning friends suggest this or that alternative diet or supplement or "doing nothing." I'm putting Tall Allen's linked blogpost in my back pocket. For men like my husband, and probably most men on this site who presented symptomatically, the horse was already out of the barn at diagnosis. You can't put out a house fire with a water gun. That said, lifestyle changes like a healthy diet, ramped up exercise program, yoga, Tai Chi, acupuncture, etc. can help mitigate side effects of the awful treatments, improve comorbidities, strength, and sleep quality.
Down the road, I'm going to ask the board's advice for a kind, fact-based response to caring acquaintances who offer suggestions for unproven treatments or one-off anecdotal stories when I just wish they'd say: "I'm so sorry. That really sucks."
"Thank you for your concern, but I have an excellent personal relationship with my practitioners. They know me, my medical history and the unique characteristics of my disease, and I trust them."
It’s usually people who care for you and your circumstance. I genuinely want these people to know I appreciate their concern for my husband and me. It can also be people who don’t know us very well, even then, I will smile and thank them. I don’t think anyone offering such advice is trying to harm us, they are looking to help. Many just don’t know what to say...Just my two cents.
We do appreciate caring friends and acquaintances whom we simply thank sincerely. But we're a bit resistant to repeated e-mail links and suggestions by a handful of people who keep offering unsolicited, irrelevant advice without their having made much effort to find out what high-risk, Gleason 9 prostate cancer is. Fortunately, we have multiple siblings in the medical field who do know what that means and offer great advice.
I’ve gone after my G9, Stage 4 cancer aggressively since day one, not sure I’d be here if I didn’t. Sure there’s lots of SE’s but I stay active and eat a healthy diet and adjust to the new normal. I still wake each morning grateful for another day. Dr. Sartor’s advice is to do what it takes to mitigate the SE’s and run the wheels off my current therapies, there’s so many new ones becoming available and more in the pipeline. So that’s the plan, diet, exercise, and meds to counteract the SE’s.
Meanwhile I continue to enjoy time with my wife and family and as long as I can still go fishing I’m good with things and grateful to be here.
The definition of Quality of Life is obviously personal. I like Harvard trained surgeon and medical writer Atul Gawande's end of life philosophy, "Death is the enemy but the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general who fights to the point of annihilation." The general refers to doctors who have one more treatment to try then one more, each with side effects and costs. Age of the PC victim obviously will influence how long and hard to battle. I am in my 88th year of life and after 15 years of treatment, I am close to surrendering.
So what's "quality of life"? We each probably have our own definition and it's always an individual decision. The clinical trial I'm going into now - the previous person who was in it (very small universe of people are eligible - TRITON II) quit because he couldn't take the side effects. That was his decision and from his point of view, it was the logical and best one.
But losing and being defeated are two very different things. You may lose but you are never defeated until you quit. “It isn’t necessary to have hope in order to undertake something nor to succeed in order to persevere.” (William of Orange). Even if your decision is to stop therapies, that doesn't mean you've quit. It just means you're now using your own defenses and not outside ones.
Speaking of good humor, here is a Mark Twain quote, "I didn't attend the funeral, but I sent a nice letter saying I approved of it." Seek things which make you laugh. Laughter is good for your health.
You are exactly right. Surrender was the wrong word to use but it fit the theme of Dr. Gawande's statement. Surrender in the sense that I am not going to pursue one therapy after another at my age. I am far from giving up the fight.
Most of us stage #4’s will be happy to eek out five years let alone 15.. That’s a marvel .. We know it was not without much suffering.. Most people that fear death also feared life... I don’t think that you fear either... we all plead and beg for mercy and to live another day.. until there is only suffering and absolutely no light in my life I will try to emulate your years of living.. Honestly , if we can control our fear of death , life is more fruitful.. death is not the greatest loss in life...it’s the losses we suffer while we live that cut deep.. I think it’s good to talk of these things since it is in the back everyone’s mind living with APC.. There will come a point for most of us when death will be merciful.
That would be grand... Peace to you brother.. we’re all carrying the same packs on our backs ..I Pray for you to find shelter in the storm.. Thank you fore taking time to respond.. you write well.. hang in there big guy... Scott
Hell yah! He never met a man he didn’t like...how many of us could say that...? Not me..I’m running to my tri-monthly testing right now.. It’s all good until it ain’t.. by the way 1976 was a great year. Bi centennial and although I didn’t know it then my wife escaped from Persia to the US in 76.. I stood at 15 years old on the Marin headlands overlooking the golden gate as the carriers and planes flew over in force.. That was awesome... Take care Mc...
Yes, QOL is impacted greatly by PC. In my case RP surgery took away my ability to ever have sex again (which really sucked at only 53). It also caused several months of having to where pads for constant leakage, with the occasional dribble even 2 yrs post surgery. The ADT therapy has robbed me of most of my energy with unrelinquishing fatigue. It has caused me to gain weight, and develop rather painful man boobs. Yes all of this sucks at a very high level, but since my PC is grade 5, and had already spread to the lymph nodes, bladder neck, and surrounding tissues, had I done nothing to enjoy continued QOL, I would have no life to enjoy at all.
Hey joeguy, I too,was struck at 53.. I wasn’t quite ready to give up the life of virility and strength ... oh well. We found out that we are are not in control of the final word or anything else... Our bodies ,our egos,out the door.. But we’re still here.. Without the adt &RT I would have kicked the bucket four years ago.. man boobs, fatigue , I’ve got all of the wonders of castration and limited abilities.. Good thing that I was a bad MF .. I had a lot to lose. a big ego and a feeling of invincibility ..I’m stuck in second gear now.. once the hare ,now the turtle.. I’m in the same boat as you. I’m now 57 and I’ve had four years with our friend APC... Find joy wherever we can. Our life’s cut short. Make the most of our world today .. I’ll just keep kicking this can down this bumpy path until I Can’t kick no more.. for now Live On. I thought I was the only one... ? we’re all kicking .. we need to be able to laugh at ourselves.. keeping laughter just ahead of the crying and emotional torment... It takes all of our being to exist daily with a smile..Thankfully I’m not alone in life. I owe my bride of four years my life. She saved me. Now it’s my duty to be here and love here for as long as God allows. .I’ll take it anyway I can get it.. life with the big “ IF “ in the middle.. I can relate brother.. Take care..
I advocate lifestyle changes to help cope with side effects of cancer treatment. The fitter and stronger you are, the better your body will handle deletorious impact of ADT, chemotherapy, radiation etc. But if you think that these lifestyle changes are gonna help slow disease progression then you may well be dreaming.
I am still young enough (56) to maintain a rigorous exercise program. Up to November last year I was walking 6km a day playing tennis twice a week and going to gym 3 times a week. Along with this, I adopted a vegan diet in 2016 and until recently I was fitter and stronger than I was in my 40s, and this helped me sail through ADT and chemo with virtually zero side effects.
BUT despite all my life style changes and continuing to utilise the best medical care available in Australia, PSA is still doubling every 4 weeks. My exercise program came to an abrupt halt in November when extensive metastasis in my left hip rendered me unable to walk, virtually overnight. I now have further metastis in my spine, liver and mesentry. Every new scan shows further disease progression.
We all have different journeys and we all respond differently to treatment. But I could never recommend life style change as a monotherapy to deal with PCa.
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