I would appreciate it if people would limit the statements bashing the current standards of care in cancer treatment. If you have something better to offer that's backed with scientific evidence, that's fine. Offer it along with links to trials or peer reviewed papers so we can all evaluate it.
Making comments about how the current cancer treatments are terrible, barbaric, cancer causing, etc. is insensitive and discouraging. Many of us here are depending on these treatments to keep us alive. And as imperfect as some of them are, they are proven to work and backed by scientific evidence. Like it or not, that's what we have today.
Many of the individuals who make these derogatory statements have not had to face a skyrocketing PSA, extensive prostate cancer metastases and opiate-level pain throughout their skeleton. I'd be willing bet you'd be singing a different tune if you had. Please show some respect and sensitivity for those of us who have suffered or are suffering from this disease.
I totally agree. Having PCa with a Gleason score of 9 and having spread to 4 bones areas, the treatment I have had- 6 monthly Eligard, with 5 weeks of radiation therapy followed by 6 cycles of docetaxel every 3 weeks , my recent bone scans has shown that 2 cancers in my bones areas are not descernible and the other two areas have reduced in size. My psa are negligible and my testerone is under control. I have complete faith in my oncologist and the treatment I have had. The rehabilitation program he referred me to has reduced my fatigue and at 69 I feel fitter than I have for years. I still have side effects with bowel and urinary issues and aching legs and lack of feeling in my feet. But I am so positive about the future, not negative at all.. I am still enjoying life as much as possible and can see my grandchildren grow and nurture.
Close to the same.. RP when tests showed no spread. Inside- not so good.. Next scan six weeks later showed 2 lymph nodes and 3 bone mets.. Now in the middle of lupron and Taxotere. PSA went from 52 before surgery to 61+ 6 weeks later. Looking forward to retiring and moving to north Idaho to teach grand kids and son in law all I can while I still can. Planning to beat this back just like you and enjoying years to go.
Well put Gregg. I can only sing the praises of my Urologist who told me I had cancer and there was nothing he could as a surgeon - I was inoperable, beyond radiotherapy BUT he would hand me to a Consultant Oncologist. She opened my first visit with 'You don't just have prostate cancer you have Incurable metastatic prostate cancer.' Would you like to sit down she added. No thanks, what's next? was my reply. For four years to date I have been so well looked after I cannot and will not ever complain about the team nor my treatment. I began on palliative care and so remain. God bless all the Uros, Oncos, Doctors and nurses that keep us all running. Everyone, say a little prayer for your teams and your families. David with thanks to Gregg.
Right on with your comments to Gregg who was also right on with with his positive outlook. My urologist/surgeon operated and removed prostate as rest showed no spread. It was a nice dream but not right....no clear margins, lymph nodes +, and positive margins. Gleason 9-10, PSA 52 before surgery and 61 at 6wk checkup. Started hormone therapy and handed off to oncologist. Taxatere in process of killing what it can. First treatment burned vane out of my right arm and got PICC line for second--so far so good. PSA before first treatment dropped to 6.5 so hormones seem to be working, now for the rest of my life long battle with this condition....
I thank God regularly for docs, nurses, techs, advanced equipment, new drug discoveries, and the people on web this site. Even my "friend" the MRI coil is a blessing. All have given me hope and reasons to endure.
Amen. I continue to advocate for early chemo as it is science-based and becoming more acceptable to the arsenal of PCa standard of care which existed 14 years ago. All based on trial data analyses. And I recognize that not all "chemo" treatments are equal. However, who am I to disagree with any PCa patient and the treatment that they decided upon. I would pray that they are able to find a Medical Oncologist that specializes in metastatic Prostate cancer.
Hi Gourd Dancer, when I was dxed stage4, over a decade ago I did an online consult with Dr Strum, he highly reccomended early chemo for me then, though my local experts disagreed at the time,and I did not do early chemo, likely missing my only chance at complete remission and undetectable psa ,just going to show, There were levels of expert medical Oncologist that were way more forward thinking back then, and this is true even today. Your treatment with Dr A is one I really wish I had found back then.
Thank you Dan. I think that the word "expert" is really overused. Most Oncologists are very good at what they do, however, in the spirit of do no harm, they rely on proven standards and are not on the cutting edge of research. I was very fortunate to have a Doctor in academia and research who like Dr Strum spent their time in study rather garnering the big bucks. Both my Professor Radiation Oncologist and my private practice Radiation Oncologist, who were roommates in the Air Force, took the time to explain this to me.
We all play the cards dealt with no guarantees. Don't regret your decision, move on and kick the bastard. I had the opportunity to follow a path similar to yours. When I made my decision I asked two simple questions after being told that anyone could treat me. "Doc, if you were me, what would you do?" After thinking about it for about 15 seconds, responded, "I would find the best Medical Oncologist available that only specialized in Prostate Cancer, not Breast, Lung, etc. as they are really generalist following certain protocols."
Second question, "Do you know one?" Response, "No."
I asked my second Radiation Oncologist the same question. He laughed and said, "Brad told me that you would ask. The answer is yes. I sit on a Prostate Research Committee with one. I don't know if I can get you in, but I will call him"
An hour or so later at home, I received a telephone call telling me that Dr A has seen my scans and that he wants to see you tomorrow.
Dr A spent two and a half hours with me in explanation.
GD , That is it in a nutshell on experts, I first went to Myers, then switched to Sartor at Dana, to be closer ,when he left Dana ,Dr William Oh, who himself is a great researcher, author of many peer reviewed studies in Prostate Cancer
I have no regrets, I made my choice for taking least toxic first, and feel very fortunate to still be alive and pain free, and enjoying life, a part of life where we realize what is important in life. Your story on finding Dr A is pretty amazing to have a radiation Onc with such a connection to such an expert MO, and in 1 hr Dr A had seen the scans and called you back, That is impressive!
I didn’t realize it was happening. Probably brain fog . I think the fact that we have treatment options and there’s disagreement among the experts causes frustration. Thanks Gregg.
I cant say that I remember posts that discount SOC out of hand. I do remember vaguely some people say that they were putting off chemo because it seemed too strong to them. I remember more of people advocating treatments that have not (yet?) been proven in trials, some of which I think will not ever be proven against cancer, and some of those I think do no harm (fruit juice).
I, too, prefer the peer-reviewed science approach to things, and I tire of constant streams of negativity.
With my starting PSA of 5,006 and morphine-level pain, I am grateful for my successful treatments, even with some significant side effects, during nearly 4 years of survival, so far.
(I also find some measure of empathy and compassion in my heart for men who are still coming from places of pain and fear and loss, when it comes to their disease and any treatment with serious side effects - even when they may be slipping into misinformation, quackery, or flat out error. We here obviously cannot allow gross irresponsibility to lead someone astray. At the same time, we can still do what we can to listen, gently confront, and to soothe some of those pains, fears, and senses of loss that some men do feel. In the end, we are all still interconnected in this world, and especially in this forum.)
An outline mantra for us all to consider. Use our knowledge to helo and reassure newbies and their families. I find great 'pleasure' in talking to recently Dxd guys who are stunned by being told they have cancer. We are always advised to bring someone with us for this consultation for it is well known that the very word cancer prevents us from taking in the full import of the Consultant's words, every friend helps. As proved by HealthUnlocked.
I think it's one thing to be misguided about this new diagnosis of prostate cancer, and we should show empathy for those who are in shock and trying to find their way. Most of those people will readily admit they don't have much knowledge and accept advice if it is presented to them. All of us were in that same place at one time.
However, it's entirely another thing when people try to come off as experts, spouting out unproven nonsense while simultaneously criticizing the valid and proven treatment options that others have chosen.
I have no patience for the second group of people and I feel we all have an obligation to call them out on this troll-like behavior. I think they should be warned first, then kicked off the forum if necessary.
I am concerned for those newly diagnosed people who come to the forum looking for direction. They see ignorant comments like "chemotherapy causes cancer" or "all this modern medicine is doing is poisoning our bodies" etc. What are they going to think? At a minimum, they will be discouraged at a time they really need encouragement and assurance.
Great points, Gregg. If in doubt, we can click on the little down arrow to the right of the "Like" button and promptly "Report" these kinds of things to the Moderators, and get some extra eyeballs on it for consideration/action before too much disturbance, or discouragement of the newly diagnosed might happen.
While I agree that bashing the current system to discourage patients from using the system is unhelpful I do feel that without some rather vocal criticism nothing will be done to improve it. Sadly many GUI oncologist still group prostate cancer as 1 disease, all metastatic patients are given a similar protocol such as the ADT 3 approach that has been popular the last few years. Sadly this isn't appropriate for many advanced patients who experience a rapid decline in their quality of life when they get the "kitchen sink" thrown at them while their cancer only spreads. Even at the so called "best" clinics in the world such as MD Anderson which is advertised aggressively with the word CURE and a line through it can offer many advanced patients is treatment protocols of chemo going back 30 years unless they wade the through bureaucracy of their clinical trial boards and are maybe lucky if their cancer fits the criteria that might make a clinical trial's outcome favorable to a pharmaceutical company . The men who posted above are the lucky ones even though many have a terminal disease, the dead and the dying can no longer voice their opinion. We must be their voice.
We should always be advocates for improving treatments, not just accepting the status quo. We all wish there were better treatment options that worked longer and had less side effects, etc.
But in order to make progress, we need constructive criticism and solutions that are based on science, not anecdotal evidence or what someone "believes in."
We also have to do our own homework so we can make the best informed decisions possible. Many of us here have disagreed with our doctors and went in a different direction on our course of treatment.
One other thing. A lot of the men who posted above are more than just "lucky". A lot of them are here today because they made good treatment decisions based the best science available instead of relying on unproven alternatives.
I'll take the other side on what many would consider a minor issue. I am annoyed that I wasn't offered a known treatment (radiation) to prevent gynecomastia. I learned of this too late.
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I'll take the other side on that. I think you are much better off not irradiating your body for that.
But that's just my opinion. Everyone should be able to choose their own treatment.
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They can only choose their own treatment when they are fully informed of treatment options. I wasn't. Isn't that the doctor's responsibility?
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I think it's the doctor's responsibility, but we are the ones that end up paying if they make a mistake or don't tell us about something that's available and could help us. With that in mind, we have to do our own research to make sure we are getting the treatments that we want.
I was diagnosed with a PSA of 133, a Gleason Score of 7b and a stage 3 after a prostatectomy as I had SVI and extra prostatic extensions but no detectable lymph node involvement and all scans were clear.
After five weeks my PSA had collapsed to 2.07, after two weeks on Firmagon it was 0.27, after three months it was below the limit of detection.
I have also had 66 Gy of radiation to the prostate bed and after 19 months it is still below the limit of detection so I have stopped the Firmagon.
What next?
Maybe the cancer was really very localised and I might have the rest of my life free of the pest or it might jump back after 6 months, a year, five years, etc.
I have talked this over with my various doctors and really we are in crystal ball territory.
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