Long term effects of Cancer Treatments.....from the news

Tony, I do not disagree with a word you just said, but even doing exactly what you say, still not guarantee a patient any particular results, or even freedom from severe side effects or damages. It may increase your odds, but that is about that.

Yes, you have to be you own best advocate with all of your medical decisions, but in the end, despite researching, diligence, and study, there will always be that element of "luck", for the sake of a better word.

David

I do think it is important to remember that the article David linked is talking primarily about chemo drugs. And that the man in the story had undergone cancer treatment with four different chemo drugs nearly 25 years earlier. The heart complications he experienced were apparently connected to one of those drugs.

An important point made in the article concerns the inability of primary care doctors AND oncologists to identify long-term side effects of chemotherapy drugs.

In reading back over this thread, I am struck by the good points that sequoiaranger made, and I'm going to try to remember them when I start worrying all over again about what my husband may face down the road.

Since the majority of men who post here have received radiation after failed surgery, I'm not sure what else they were supposed to have done, besides waiting for an indeterminable period of time while testing hormone therapies. David, you just cannot blame yourself. I'm sure you felt the pressure to decide in the face of rising indications that your surgery had failed to eradicate your cancer. You just wanted to live.

There are no easy answers here.

Juliet

David,
There are no such thing as guarantees in the medical business. I fully understand that luck is always a part of anything. But I live in Las Vegas and I know the value of improving the odds to come out a winner. Education is that one thing we as patients have control over and my comments to the forums I run will always start with the theory that an educated decision is your best bet for a best outcome. Otherwise you're really spinning the wheel and hoping your number comes up.

Casey,
I think over treatment is unethical today. The problem is that we truly don't have a definitive way to make that determination as to where the ethics stop and the disease control begins. We have an idea but according to the NCCN guidelines only 15% of patients qualify for not treating a detected cancer. And I truly believe that the current recommendations on screening by the USPSTF are unethical for a guy like me...:-(

Tony

I think the other thing to consider is that today's studies and results are being reported from techniques in use 20 years ago. The early radiation machines are nothing like today. The Rapid Arc takes CT scan prior to every treatment. My oncologist said that if I needed additional radiation, he could treat an area within 1 cm of the area treated.

I know there are side effects, but the radiation field has grown in leaps and bounds. Same with chemo.

Medicine is improving every day. Reporters can always dig up horror stories to sell stories. We have David on HW as an example of malpractice, but we have hundred of guys on here who had successful therapies with little short term side effects, and many at 10 or 15 with few side effects.

All these kind of things do is rile us up.

Goodlife

You cannot prove or disprove anything with examples. There is a substantial amount of spin involved in the originaly linked article. You could just as well make this same set of fact to praise the miracles of modern medicine.

I think we need serious long term studies to show effects and effectiveness of cancer treatments. I am sure not all drugs/therapies are equally impactful.

I have had surgery, chemo, radiation and hormones. I sure hope to live 20 more years even if I have to start worrying about the SEs of these in my seventies. What's the alternative?

Geebra,

Perhaps you would feel differently, if you were being strongly limited or effected by some of the serious side effects or other medical maladies from the treatments in the future. There are some that suffer tremendously long term from treatments, greatly effecting their daily quality of life in big ways.

Every person has to be able to weigh out the relationship between simply extending their life, and being able to enjoy being alive, and of course, there is no right or wrong, its very subjective and personal. Living 20 more years, wouldn't be ever person's goal, if it meant they had to be in pain, or be constantly miserable all the time. Comes down to that personal choice again.

My wife is a nurse in a long term facility, and she sees patients all the time, that are forced to live for long periods of time, sometimes against their will, because someone in the family is their medical power of attorney. Some would rather be left alone to die on their own terms, and others are suffering without any real hope. Definitely a tough subject to be sure.

David in SC

davidg -

i know you have great success with your surgeon (wont mention the name - as it always solicits some negative replies). i am most happy you are on the winning side of this PC right now. However, how would you be feeling now, having made that same choice, based on your same decision process - if your surgery had either failed immediately, or soon after? i ask this for a reason.

we have 2-3 men here, who did everything tony suggested, as far as learning and due diligence, went to the best of the best surgeons and hospitals (won't mention any names again), otherwords, they did all the right things One of them had immediate failure, and the other two have quick reccurance.

what does that say about that decision process? does it mean these big name surgeons suck? i don't think so particually. does it mean these men made the wrong choice somehow? i don't think so either.

i agree with a premise of yours from above, we shouldn't be coming across to new patients, that they have to almost become doctors themselves, before they can make a rational treatment decision. that is what the experts are for. and from a legal perspective, once you enter into a patient-doctor relationship, the burden and standard of care is squarely on the had of the doctor, not the patient.

being informed? absolutely. the far majority of men i have seen here in nearly 4 years, either made their treatment decision before finding HW, or made it soon after. i can't hardly remember a single case, where someone changed their mind after coming to hw. and they shouldn't. we are not doctors or specialist or even medical professionsal (with the exception of "brainsurgeon").

the very first thing my uro did, on that fateful night that he gave me my diagnosis, was a copy of a primer on prostate cancer. and no, it was no biased toward surgery. it covered all treatments. he told me to read it, and when we met in 2 weeks, we would go over the options one by one. that was the beginning of my education. i immediately bought the "Surviving Prostate Cancer " book on my own, and as my nature, literally read it cover to cover before meeting my uro again.

my point, we need to encourage, not discourage, new men here in several ways. not to rush into an immediate treatment, few if any, need instantaneous treatment. we need to encourage to read something at the beginner's level, like the Walsh book, and others. we need to give them both hope and support, unconditionally. kind of the same way that love is suppose to work, lol. and we need to encourage them to find good doctors, and to be compliant to their care. again, they are the professionals, not we.

and finding a great doctor, doesn't mean it has to be a "brand name" or "top ten list" person. that is nice if one has access and resources to it, but there are great doctors all across the country. some of the best, are ones some of our "experts" here at HW have never heard of, and why should they, they don't live in a member's particular area. some one posted elsewhere, about not finding a great doctor in "opie land or mayberry", can't remember the wording, insinuating that you aren't going to find a great doctor in a rural area. that is the furthest thing from the truth.

i think we all have to be careful how we come acroos to the new men in general. let's leave the real medical advice to the doctors.

david in sc

Purgatory said...
davidg -

i know you have great success with your surgeon (wont mention the name - as it always solicits some negative replies). i am most happy you are on the winning side of this PC right now. However, how would you be feeling now, having made that same choice, based on your same decision process - if your surgery had either failed immediately, or soon after? i ask this for a reason.

we have 2-3 men here, who did everything tony suggested, as far as learning and due diligence, went to the best of the best surgeons and hospitals (won't mention any names again), otherwords, they did all the right things One of them had immediate failure, and the other two have quick reccurance.

what does that say about that decision process? does it mean these big name surgeons suck? i don't think so particually. does it mean these men made the wrong choice somehow? i don't think so either.

i agree with a premise of yours from above, we shouldn't be coming across to new patients, that they have to almost become doctors themselves, before they can make a rational treatment decision. that is what the experts are for. and from a legal perspective, once you enter into a patient-doctor relationship, the burden and standard of care is squarely on the had of the doctor, not the patient.

being informed? absolutely. the far majority of men i have seen here in nearly 4 years, either made their treatment decision before finding HW, or made it soon after. i can't hardly remember a single case, where someone changed their mind after coming to hw. and they shouldn't. we are not doctors or specialist or even medical professionsal (with the exception of "brainsurgeon").

the very first thing my uro did, on that fateful night that he gave me my diagnosis, was a copy of a primer on prostate cancer. and no, it was no biased toward surgery. it covered all treatments. he told me to read it, and when we met in 2 weeks, we would go over the options one by one. that was the beginning of my education. i immediately bought the "Surviving Prostate Cancer " book on my own, and as my nature, literally read it cover to cover before meeting my uro again.

my point, we need to encourage, not discourage, new men here in several ways. not to rush into an immediate treatment, few if any, need instantaneous treatment. we need to encourage to read something at the beginner's level, like the Walsh book, and others. we need to give them both hope and support, unconditionally. kind of the same way that love is suppose to work, lol. and we need to encourage them to find good doctors, and to be compliant to their care. again, they are the professionals, not we.

and finding a great doctor, doesn't mean it has to be a "brand name" or "top ten list" person. that is nice if one has access and resources to it, but there are great doctors all across the country. some of the best, are ones some of our "experts" here at HW have never heard of, and why should they, they don't live in a member's particular area. some one posted elsewhere, about not finding a great doctor in "opie land or mayberry", can't remember the wording, insinuating that you aren't going to find a great doctor in a rural area. that is the furthest thing from the truth.

i think we all have to be careful how we come acroos to the new men in general. let's leave the real medical advice to the doctors.

david in sc

Yes, success "so far" is definitely how I see it and live it. There is no doubt about that. I don't believe I'm unique btw, I just think that the vast majority of guys who do well just move on with life and put this behind them. Perhaps they cope with it better than I do, I don't know.

I can honestly tell you that even when I was 100% sure I chose the right path and the very best surgeon I could find, I still knew that surgery could fail (or worse) and that the margins would be positive and that I'd be in diapers and impotent. I knew this was a real possibility and still I was 100% sure of what I was doing. So, I can only assume I would feel the same if things hadn't worked out. Of course the optimism I had and th ehope I had would no longer be viable so i'd probably be far more depressed than I already am. That is the honest truth.

There are no guarantees and we all know that unfortunately. The most anxiety I had through the process was waiting for biopsy readings and post surgery pathology. Surgeons can't change those results regardless of how good they are although I've read about great surgeons being better with margins. Some of us are luckier than others in this area but we are all unlucky to begin with.

I've picked up a ton on this site since joining. But as you suggest above, I wouldn't have done anything differently because of it.I would have asked a lot more questions, and I would have understood a lot more vis-a-vis forecasts, but I also think it would have planted more fears and anxiety in me and I already had much of that. Some of the best advice I read on this board (according to me) is really no different from the advise I was given by numerous experts.

And I definitely would never dare give medical advise. I can only share my experience and what I have been told by way of anecdotal examples which is basically what I got from reading hundreds of profiles on Yana prior to my treatment and touching base with some wonderful people there who shared the same with me. I honestly respect what treatment individuals choose and what they choose to eat and how they want to go about SEs. We are all very different and treatments, attitudes and beliefs need to be different among us in order for it to work for us.

I had sort of stayed away from this topic as we are in the middle of radiation treatment with SE's creeping in.

From the get go, my husband was against radiation, for fear of "Pay me later" SE's.

We did go see one of the recognized experts and it was a life changer for us. He clearly pointed out that if my husband wanted quality of life NOW, that dumping surgery was a "no brainer." He confirmed our thought process. So, here we are in the middle of radiation. No chance to second guess anything now... we did all that BEFORE making the decision.

Que Sera, Sera... Whatever Will Be, Will Be.

I think what this highlights to me how important it is to be an informed patient and to own your own medical history.

Doctors save lives everyday but good doctors have bad days and many doctors can't keep up with all that's happening. And of course there are doctors who just scraped through med school, doctors that make you feel great really but don't know what they are doing, doctors that have no bedside manner all at but are brilliant at their specialitity. Or a combination of the above.

The point is that they are human, they might have failed the question on the side effects of a particular drug. Not everyone has the luxury of the time and ability to do this but I think that really questioning your doctors and nurses is very important.

A friend of ours who has cystic fibrosis has to go to the hospital for "tuneups" every six months for about a week. He takes his pharmaceutical directory with him every single time and he looks up everything that goes into his body before it goes in. He checks for method of delivery, side effects and if its not making sense he does not let it be administered. It may sound paranoid and make him a less compliant patient but it has saved his life more than once.

An

AN,

I am the same way about any med I ever take. I actually research it for myself, read the tiny print in the instructions. My oncologist has said, that he respects how careful I am about taking meds in general. Right now, I am on a powerful, and potentially dangerous mix of strong pain meds, and I feel that I can't be too careful, it would be easy to overdose accidentley if I got careless and forgot my dosing schedule. As a nurse, my wife acts as a second set of eyes to make sure that I don't make some silly mistake. Sure don't want to wake up dead, lol.

Hope your husband is still holding his own.

david

green bean,

welcome to HW. Please take off your phone number from your post, and e-mail it to me. Will be happy to call and talk to you privately, you need to guard things like your phone number here. Just trying to help protect your privacy.

unfortunatley, i am the king of strictures, until I had my urostomy surgery late in 2011, it was an endless battle of catheters, dialations, ER situations, and corrective surgeries.

no problem.

when you e-mail me, i will return my number with my reply

thanks

david in sc