What did you do? Regrets?

mattamx said...
Well Gary,
If you do quick search for any of items I listed you get pages of posts on these topics. Not rare at all.

I agree about regret - hanging on to them isn’t useful. But we can relate our experiences to others so they can see that what their doctors tell them about side effects may not always be the truth, the whole truth, and nothing but the truth.

In my experience, the value of anecdotal reports from those with the symptom, is of minimal value when determining what is and isn't 'rare'. Of course, it sure isn't rare, if you are suffering from the symptom. The same regarding 'regrets'; and searching for the 'whole truth' about most anything, and especially infinitely valuable side effects, is fruitless...but noble... Yes, I do respect your opinions!

Gary

garyi said...
“I found goodness in the place that I once believed to be evil; and found evil in the place that I once always knew to be good! The truth is so far separated from where I thought it existed. It can be such a wild, unbound journey: the journey from the illusion into the truth. Some people take that journey, but more people don't.” ~ Anonymous

That's not "anonymous"...that's a logoslidat quote...

BJ: actually, if you google'd it, it is by C. JoyBell C., a poet and essayist.

halbert said...
BJ: actually, if you google'd it, it is by C. JoyBell C., a poet and essayist.

I don't use google...

I've mentioned it a few times... treatment choices vary GREATLY for those with low grade pathology and single digit PSA as opposed to those with high risk adverse pathology. Just because one guy with 3+4 got away with radiation, that doesn't make it the right choice for everyone. Nor would I recommend RP plus ADT and IMRT for just anyone.

In my opinion it appears that too many guys base their entire decision making process upon protecting their manhood or on their fear of surgery. My objective was to have the greatest likelihood of eliminating the disease. So do you want to win the battle or minimize your potential losses? Often you cannot be guaranteed both.

RobLee said...
.....Often you cannot be guaranteed both.

Or, truth be known, either.

Life, like PCa, is a crap shoot, with lots of surprises and no guarantees.

My biggest regret was not changing urologists sooner. After a psa rise of 1 to 2 in one year and a negative biopsy, my urologist said ' you have no cancer, come back in a year." I was relieved. What he should have said to me, especially since he knew my brother had had prostate cancer) was - " you might have cancer but we did not find it, or you may not have cancer. You should go to a large university hospital and get MRI testing". After the second negative biopsy, he said the same thing but said we would monitor psa quarterly and then do a biopsy at 6 months. Fortunately I wised up, went to a large university hospital which used multiparametric MRI to locate the tumor (Gleason 4+3) and ultimately had surgery. Although no evidence of cancer escaping the prostate was found, I had recurrence and radiation plus 6 months ADT, and still psa has increased. I believe if I had had treatment sooner I might not be in the situation I am in.
Some urologists may be reluctant to refer a patient to another more advanced medical practice because of concern they will lose a patient. Just a caution to consider.

I sometimes rethink whether I would have fared better with radiology, but I am the 'I want it out' kind of person, and since my tumor was near the prostate wall - but not into the wall, I thought the quicker to get it out the better. I have minor incontinence which is not an issue for me (one pad every 2 days), and need ED drugs (Needed them before cancer also) overall I consider myself lucky. Maybe radiation would have given me a different outcome but it would have interfered more with my job than surgery did, and I am 'at peace' with my decision.

At 85 I had no treatment choice with localized g9 dx. Underwent 45 rt and began 2yr adt program. Absolutely no radiation side effects, not even fatigue. Finished in early Dec. Psa now undetectable at 0.1. Adt did at first cause hot flashes, chills, night sweats, etc. Went on megastrol and adt side effects have disappeared almost entirely except for occasional chills. I do have a defunct libido which poses no quality of life issue for me at 85, though this would be for a much younger man. Right now I feel fine, experience no fatique and keep busy with multiple chores. No cognitive issues. No regrets.

gary, exactly. And we need to be cautious about hijacking this thread to grind our preferred axes. There are no perfect treatments--which is why we each need to make our own assessments about our own lives. And take care to not criticize each other.

halbert said...
gary, exactly. And we need to be cautious about hijacking this thread to grind our preferred axes. There are no perfect treatments--which is why we each need to make our own assessments about our own lives. And take care to not criticize each other.

Agree, halbert, although hijacking a thread titled, "What did you do? Any regrets?", isn't an issue.

Voicing an opinion, or referring to a noted hospital's statement isn't, "grinding a preferred axe" or criticizing anyone.

Be well....

Good point, regarding the SE from primary or secondary RT.

I was diagnosed as Gleason 6 in 2009, but had been doing surveillance since 2007.

I joined prostate cancer support forums and in-person support groups then.

Bottom line is that I have read far, far, far too many negative posts from men who had surgery to consider that treatment. I would choose either SBRT or protons instead. Studies show that they have five year non recurrence rates over 90 percent, versus under 70 for surgery.

Just my opinion. I no longer judge other men, who, for whatever reasons, think and do otherwise.

teddy9 said...
My biggest regret was not changing urologists sooner. After a psa rise of 1 to 2 in one year and a negative biopsy, my urologist said ' you have no cancer, come back in a year." I was relieved. What he should have said to me, especially since he knew my brother had had prostate cancer) was - " you might have cancer but we did not find it, or you may not have cancer. You should go to a large university hospital and get MRI testing". After the second negative biopsy, he said the same thing but said we would monitor psa quarterly and then do a biopsy at 6 months... I believe if I had had treatment sooner I might not be in the situation I am in.

I feel for you bro. Similar thing happened to me. When my PSA rose over 4 in 2012, my urologist said it was nothing to be concerned about. Eighteen months later at PSA 9.5 he did a biopsy and told me only that it was negative.

I saw him several times over the next two years. He always did a DRE, told me that my PSA was high but my biopsy was negative and my prostate was normal. He never, ever even mentioned the word cancer. He only gave me more and more Cipro.

Two years later I questioned him about an MRI and he said that required special training and left the room. That was the last time I saw him. A month later, another urologist did the MRI biopsy and I was diagnosed with 100% G8.

Since then I've had two years on Lupron and an AUS implant so that I could undergo radiation. Everything was complicated and much went wrong. I often obsess over everything that happened and how it has affected me, emotionally. The physical aftermath I can live with, because I have to.