Cancer S**ks and Prostate cancer really ****ks!

On or about May 1st I was told there is a 30% chance of PC due to change in PSA. Had MP Mri which showed suspicious lesion. My Uro, whom I liked also told me he was leaving the practice. Scheduled biopsy and it was not until July 25th that I was told I had cancer (Gleason 3+3; 4 courses all under 30% and that I should have surgery. Went away stunned and confused. Came to my senses and got a new doc at Yale, who is amazing, and had a second opinion of biopsy and one was upgraded to 3+4, less than 5% 4. Also had a Decipher genomics test, which showed an intermediate risk for metastasis. Here it is 10/8/17 and I have studied this disease, went to a conference and an amazing weekend with other couples with this disease and I still am unsure what to do. I have another 3t MRI 11/9 and then appointments with the Radiation oncologist and my doc to determine next steps.

So, five months, many books, many posts, many great insights from guys, etc. And I am still unsure. The most disconcerting thing is I do not see a clear path to the decision. I do like Dr. Walsh’s book and in there he says, paraphrasing, study, ask questions and then find a doc you can trust and in concert with him/her allow the decision to be made and trust that doc. If you can’t trust get a new one.

The challenging part for me is one day I will be clear that surgery is the right decision. Then I will read something and think seeds or proton beam is the way to go, and then I will hear about side effects and known seem like a good idea.

I do know the side effects are what concerns me the most, particularly incontinence. I also am selfish and don’t want my lifestyle to change and I know that is an unreal expectation, that is why this ****ks. I am certain that I need to be treated. I feel good that a cure is a high probability. And I am certain I do not know, at this moment which treatment is the best for me.

I also need to vent about the sentiment about “if you are going to have cancer, this is the one you want” That is not what I need to hear. This is a complex and personal decision. First, do we treat, then what treatment, and then who hold treat us and when. Other than that, this is simple.

Ok, that felt good. I do appreciate all who contribute on the site, all who have shared info and experiences with me and for all the docs who I believe really want to help us. Ok time to go beat a little white ball into the hole. Thanks, Denis

Denis,

I think Allen has hit the nail on the head. Your decision, like mine, will be driven by your feelings about the potential side effects. I say "potential" because although there is a good deal of information about the specific side effects possible and about their probabilities of happening to any single patient, but we cannot know which side effects we will experience, nor how severe ours may be. All we can do is make a decision based upon the best information we have and our own feelings about that info. That's where it becomes so personal.

TA thanks, I do think I am getting clearer, certainly have eliminated AS. I still need to learn more about radiation. Hopefully, my meeting with the docs will help sort it out. Thanks, Denis

Hal thanks, nice meeting you in NY. Denis

Denis

You have covered all your bases in spades. Seems to me you are looking for 100% assurance that whatever treatment you chose will be side effect free, there are none, unless you choose watchful waiting or some form of AS. You have ruled out AS, wisely I think, but its time to make a choice and not look back.

Once you make that choice and commit to it then everything will fall into place. You have done your due diligence choose and go forward...

Best wishes

Subdenis said...
I also need to vent about the sentiment about “if you are going to have cancer, this is the one you want” That is not what I need to hear.

So you've heard this now for the first time? I'm curious what you said in reply...or was your experience like mine where I was so taken aback that I just mumbled my way through hoping to change the subject? I was such a noob; I didn't know what to say. I felt really conflicted because I had just gotten a "cancer" diagnosis, the "big-C," and that statement just didn't sit well with what was in my head at the time.

I'll pass on some professional advice—not from me, but from a medical journal editorial I read soon after that incident which talked about this. The doctor who wrote the article advised that it was a ignorant and uninformed comment, but it shouldn't be just ignored...make it a teachable moment. I can't remember exactly, but paraphrasing the article, his suggestion was to say something like this:

That "good cancer" comment doesn't really describe prostate cancer very well. A better description is that "prostate cancer is one of the most common, but least lethal of all cancers." The problem is that it is very lethal for a small number of men diagnosed with it. It is basically unstoppable when high-grade PC spreads. But thankfully, for the majority of cases [like mine, and yours] it is a very different disease, and typically needs no immediate treatment at all. In fact, doctors have debated about whether "favorable-risk" prostate cancer should even be called "cancer" at all because the "big-C" word often scares men into having unnecessary treatments.

I remember the author then suggested that depending on how well you knew the commenter, you might wrap it up with a smug statement like, "There, now you don't have to make that stupid comment again in the future."

After reading that editorial I thought, that was a brilliant come-back...so I committed the gist of it to memory and have used it several times in person when I've also gotten that stupid "good cancer" comment. The people I've told this to actually seemed to appreciate being informed a little bit about PC. Truly, it seems like it's one of the least understood cancers.

Try that approach...

-Norm

Post Edited (NKinney) : 10/8/2017 8:36:47 PM (GMT-6)

Subdenis said...
On or about May 1st I was told there is a 30% chance of PC due to change in PSA. Had MP Mri which showed suspicious lesion. My Uro, whom I liked also told me he was leaving the practice. Scheduled biopsy and it was not until July 25th that I was told I had cancer (Gleason 3+3; 4 courses all under 30% and that I should have surgery. Went away stunned and confused. Came to my senses and got a new doc at Yale, who is amazing, and had a second opinion of biopsy and one was upgraded to 3+4, less than 5% 4. Also had a Decipher genomics test, which showed an intermediate risk for metastasis. Here it is 10/8/17 and I have studied this disease, went to a conference and an amazing weekend with other couples with this disease and I still am unsure what to do. I have another 3t MRI 11/9 and then appointments with the Radiation oncologist and my doc to determine next steps.

So, five months, many books, many posts, many great insights from guys, etc. And I am still unsure. The most disconcerting thing is I do not see a clear path to the decision. I do like Dr. Walsh’s book and in there he says, paraphrasing, study, ask questions and then find a doc you can trust and in concert with him/her allow the decision to be made and trust that doc. If you can’t trust get a new one.

The challenging part for me is one day I will be clear that surgery is the right decision. Then I will read something and think seeds or proton beam is the way to go, and then I will hear about side effects and known seem like a good idea.

I do know the side effects are what concerns me the most, particularly incontinence. I also am selfish and don’t want my lifestyle to change and I know that is an unreal expectation, that is why this ****ks. I am certain that I need to be treated. I feel good that a cure is a high probability. And I am certain I do not know, at this moment which treatment is the best for me.

I also need to vent about the sentiment about “if you are going to have cancer, this is the one you want” That is not what I need to hear. This is a complex and personal decision. First, do we treat, then what treatment, and then who hold treat us and when. Other than that, this is simple.

Ok, that felt good. I do appreciate all who contribute on the site, all who have shared info and experiences with me and for all the docs who I believe really want to help us. Ok time to go beat a little white ball into the hole. Thanks, Denis

this is me. took a year to "do it" flying all over the country....hell....almost an expert myself in almost all known tx forms.

I didn't want to face the fact nor accept that I actually had to change my life. I just know it would...and I didn't want that.....(I mean....like....I REALLY didn't want that LOL)

then....maybe...just maybe....reading this...and thinking to myself...."Ya know....my fate for treatment was sealed the day I was diagnosed" I knew I couldn't do AS. Just couldn't stand the stress of it.

I never had the big "OMG....I'VE GOT CANCER" moment when the uro told me I had it. Why...I don't know. It just didn't bother me *all* that much. But....lol....the treatment...now that's a different story altogether.

The one time...when I did have that feeling....of disconnection from reality....I was at the post office...standing in line...getting my passport renewed....when my cell phone rang...and the nurse on the other end said...."Good news! Your PSA is only .01 " Well....it might have been good news to her...but it put me into an alternate state of reality. Suddenly...the world looked different. The people in line...."How could they be acting as if life is still the same?" Even the woman behind the counter asked if everything was ok. I just told her...."Sure it is". and walked out the door.

Another time I lost it was when my path report was handed to me at the doctor's office. A NP gave it to me that knew less about it than I did. I was just going down the list...looking at things...thinking...."OK...Ok...Ok...then OH man." That gave me a lot of feelings...mostly indignation with disappointment. .



It's in your future denis. You'll come to it .... when it comes to you....and not before.

Take care of yourself denis

Denis, As you know, I have been following your journey from day 1, across three or four forums.

I admire your indefatigable questioning. You are prodigious in your sharing and asking, and always to the point with where you are at the moment. You have caused me to re-examine some of my basic thoughts on my future.

However, even before your Decipher test ruled out AS, I conjured that you will have surgery by next Spring. Just a premonition. That would give you some finality and closure, at a price. But, it seemed to me that only that solution would calm your (wonderful, but incessant) quest for assurances.

Denis, ASA's post clarifies how the Decipher test was useful in your case, helping you decide to rule out AS. In my case, the Decipher test was not run until over a year after my RALP so it played no role in my decision-making about primary treatment.

I don't know of anyone on the board that used radiation as a primary treatment that has fecal incontince. Where did this notion arise? One person has it from salvage radiation treatment. But that is a different radiation treatment than primary treatment to the prostate.

NKinney, I had double radiation as you can see and I absolutely trust every fart. Please show the studies that show fecal incintinence to be a common and significant side effect of primary radiation therapy for PCa.

You are correct Denis, and the jury on Space OAR is out, according to my RO.

I'd like to see meaningful studies myself.

NKinney said...

There are meaningful studies. I'd like to see meaningful improvement.

NO $hit

Why these lines show up on this old forum software is beyond me

This comment is not "in sequence", so please do not read it to apply to the last post.

1) Rule 3 exists to remind us that we respect the treatment chosen by others, and that we accept their experience. We do not use linked pictures and hidden-in-definitions comments to belittle them.

2) When a Moderator edits a post, do not revise it to try to circumvent a rule violation. The edit was done for a reason.

3) Do not try to revive posts or threads that have been deleted or locked.

This applies to everyone, but in this thread it has led me to simply delete a repeated offense of Rule 3. Just so everyone understands why.