Recently diagnosed - PSA 15.1 with only 1 core positive @ 3+3. At 44yrs old - any thoughts?

Thabks Hawaii.... i agree must be due to biopsy. Well had my appointment at MD Anderson

I was very impressed with the people and knowledge... however I didn't know they didn't offer HDR... and also the surgeon (Ward) mentioned that he doesn't so frozen samples and his backup is an apprentice not a surgeon... as opposed to my local urologist who would use a surgeon to assist... but I'm not really sure that's a huge deal... he did mention that Dr Davis was the highest volume prostate surgeon at MD anderson, so I set a date to meet with him.

Since the radiation team lacks HDR completely.... I'll have to look elsewhere if I decide to pursue that.. hmmmmm

Anyone have any links or views of Low dose brachy vs high?

Now I'm off to the laser focal ablation team :)

Zzarth

PeterDisAbelard. said...
Zz,

Cancer in the apex isn't worse cancer, it is just in a place where a surgeon finds it hard to get at it reliably without getting into the nearby tissues that he wants to leave alone. All the nerves and blood vessels taper in close to the prostate in that area and it is also close to the urinary sphincter.

I'm not sure if your 3+4=7 and your 15 PSA puts you in a high risk category or in a high-intermediate risk, but still, both are risk factors and I think you are justified in seeking treatment at this point.

I think SBRT might be a good option to explore. (Cyberknife is a type of SBRT but there are others). With your young age and your cancer in the apex surgery might not offer as good a side-effect risk profile and you would have quite a few years to put up with those side effects.

That last is definitely something to consider, and then consider some more. But if you are able to wait(mentally), you have almost all the time in the world to decide the right approach for you!

I came home from houston yesterday, posted the last post about waiting 3 months ... and happy that a doctor told me he couldn't see anything on a 3T mpMRI that resembled cancer ....

However ... since then I've had second doubts.

"Am I being stupid not to seek immediate RP or RT sooner than December just because my MRI appears to be clear"

"Should I just get FLA and see how the impacts me, then if not, go and get RP and RT"

"Should I listen to the majority of the doctors and just opt for surgery"

The Radiologist at MD Anderson I met with ... when I told him "how come people in my shoes does get RT, like HDR? ... his response was "The surgeons get to them first""

So ... still I am confused.

I wish I could just hire someone to tell me what to do... I can't pick my clothes in the morning let along pick or decide on a treatment for PC!

AHHH!!!!!

Zzarth

Thanks pratoman

Dr. Walser prescribed me a low 5mg dose of cialis to see if that helps at all with the prostitis.... anyone ever hear of cialis being used for that?


Also before the 3 month mri Dr walser wool perform I'll take a short antibodic regiment to "clear things up" on the mri

The original idea was to wait 6 months for the new mri / biopsy ... but u said I was not comfortable waiting that long

Zzarth

It's anterior (are you African-American?)- You have to biopsy that. I think a transperineal template-mapping biopsy may be a good idea to discuss with your Uro. It would be useful if you are considering FLA too. That may explain your elevated PSA.

I don't know. I think that I would ask for template mapping rather than just mpMRI-targeting, and go transperineal given the anterior location. You just had an MRI - will your insurance pay for another one in December?

@Tall Allen -- thanks for your feedback, I'm going to head to a new urologist here in Austin armed with all my results and my latest MRI and MRI report to see what he thinks about doing a TTMB on me.. words can't express my gratitude to you TA, "thank you"

Jeff / @Worried Guy --- yes, I'm working out, and I also have changed my diet. I'm 5' 9" about 200 lbs ... I used to work out constantly, but over time I defintely ate too much red meat and most of all, I drank TONS of milk ... way to much. So today it's more salads and no milk at all ... also limiting red meat and other foods that might have any hormones in them. I'm also working out more to keep my spirts high... my days are filled with switching between "look for new job mode" and "figure out what to do with PC mode" ... it's like I have a full time job :) not sure where the days go.. so I make sure to work out to keep my spirts high.

@Pratoman -- I called and setup a consult with Dr Mark Scholz like you suggested ... man they are so busy I couldn't even get a phone consult with him until November, so I setup a time to talk to one of his team mates in October...

Thanks all!
Zzarth

@Hawaii-Guy -- unfortunately Dr Scholtz would be a phone consult and my cost out of pocket just for a call under 1 hour would have been $800 ... so ... I had to cancel.

:(

I reached out to FLA at University of Chicago today to get them to look at my MRI as well... I spent some time trying to get Aetna to pre-approve FLA today, what a nightmare.. ;(

Zzarth

So I saw Dr Shaw here in Austin, I asked for a transperineal template-mapping biopsy, but he said he didn't do them ... and suggested we do a MRI guided fusion biopsy in a few weeks (I guess he is getting the equipment in soon).

He mentioned he could get pretty far back with the trans rectal biopsy ...

Should I get the Fusion or try and find a urologist who does transperineal?

Is finding a urologist who will perform a transperineal biopsy harder to find? .. should I go along and get the Fusion, or continue to push for transperineal? thoughts?

Zzarth

I'm going to PM you if you want to chat.. I had about the same path as you, and seemed to have done the same investigative approach - and trips around the country.

HAD anterior 7mm tumor G6/G7 diagnosed 12/2015 (47 yr old) (actually it was visible in 2014 but the radioligist didn't catch it. Did about six months of research, meeting with the best around the country in in BT, HDR, RAPL, MRP and Hopkins, UCLA, UCSF, Stanford, etc..

WANTED to rule in AS (UCSF has an excellent AS program) and ruled it out
WANTED to rule in BT, but long term effects and research and consults (with BT and Surgeons) ruled it out
WANTED to rule out RALP but ended up ruling it IN and found arguably the two best surgeons and facilties in the country and ruled it in.

Had the RALP done 8/2/16 and was 98% continent after four weeks, 2.5 weeks post catheter removal.

Started penil-rehab about 7 days post surgery (including last few days of catheter) and am about 85% there as of now. Eight weeks post op. Have solid erections (using 5mg cialis still for penil rehab) and have strong orgasms - although no ejaculate. I can live with that.

Now that's WELL ahead of the curve, I know that and they know that but one of the things I distilled from all my research - which i'm happy to share with you - is that

A: you'll never be better than you are now, continence or ED (although you might improve with the weak stream as I think whatever is going on in your prostate could be impacting the stretch of urethra inside the prostate and hence urinary flow)
B: If you choose surgery, I think RALP performed by a highly qualified surgeon who has done this procedure in the 1000's is the best predictor of surgical success and post surgical recovery.
C: start penil rehab as soon as you can, pump, pills, stimulation, kegels, etc.. any facility with a surgeon as described above is going to get a patient on such a program quickly and completely.
D: there is on ONE best choice. based on several factors, age, cancer stage, cancer location, cancer grade, current morbidity and mindset there are a couple VERY GOOD choices for each patient. Get it down to your two and then decide.

when they finally located the tumor (first MRI read they missed it, anterior location) and the first biopsy of 12 cores showed nothing, but the standard 12 core doesn't SAMPLE the anterior (dark side of the moon) area as standard - okay some people do) *I should add that the biopsys and MRI's were NOT done at the location I chose for the surgery..

Once they say it on the MRI, reconfirmed it, specifically targeted the anterior apex they had 2 of 8 cores positive, 50% 3+3 core 1 and 45% 3+3 and 5% 3+4 core 4

I ended up going with Dr. Peter Carroll at UCSF. He's done 1000's of RALP, and equal manual.

I really liked his team, core participants have been with his team 15-20+ years.. primrary nurse, anesthesiologist, 2nd surgeon 8+ year with team (a RALP requires two surgeons) there are actually 3 here.

Primary does all the delicate bits, secondary I believe does ports, closing, other steps.

Can't recommend it more..pre-op, surgery, post op, facility, etc.

*I should add that the biopsys and MRI's were NOT done at the location I chose for the surgery..not that I didn't trust them (other institution that did initial uro, MRI, biopsys) but their surgical team and experience was not up to my defined expectations - that's why I looked further to johns hopkins, UCLA and UCSF

I guess there isn't a chat, but if you want to talk email me at

paulmerc gmail

Post Edited (paulmerc) : 9/29/2016 12:17:37 PM (GMT-6)

@zzarth

my psa started rising about five years ago.. 1.4, 2.8, 3.2, 4.5, 6.5, 7.5, 8.8, 9.3

Paternal history as well, so there's that.

It was only when it hit 4.5 that we started looking and doing biospys. Two total, one 12/2014 and another 12/2015 (after PSA continuing to rise and free psa BAD and PCA3 negative. Since it was anterior apex it was harder to get to but certainly doable through the back entry port. I'd prefer that to a through the scrotum or otherwise.

By 1/2016 I was meeting with oncologist, surgeons and radiation specialists around the country.

Of the seven people in total I met with, 6 of 7 said surgery was the best option for healthy, young man, looking for absolute cure and high expectation of high quality of life. Everyone, even the RT specialists said either "your're better off with surgery at this stage" or "you'll do best with surgery"

The simple summary for this stage with containment and young healthy patient is, surgery MAY have some very low probability limited downsides in the hands of a skilled surgeon but it's essentially a 100% cure rate at this stage and after recovery there shouldn't be any impact.

(well, no ejaculate means no making babies naturally so think about that - and store some sperm or get ready to harvest sperm from the testes)

Whereas radiation, while having a high cure rate of course as well EBRT, BT, SPRT, even proton there are most likely going to be some downsides in various areas of varying degrees and, nearly to a man (yes, they were all men except for the copilot on my actual surgery) they said "we just don't like recommending radiation for a young man with arguably 4-5 decades of life ahead unless something about the tumor location, possible metastasis or preference of the patient dictates it.

And then the old adage is that once one does Radiation, doing surgery after (pretty rare but it happens) is less of an option and what they call a "salvage" procedure, and the downsides are much greater than had surgery been done initially.

BT and other RT therapies CAN be cheaper than a RALP for sure. sometimes half to 40% of the total cost. But, if you're insured you're probably looking at some sort of annual OOPM regardless.

If you want me to, I can email you all the restricted research reports I collected (I had a medical researcher assigned to me at Stanford at first who did any research I asked for and had access to normally unavailable clinical trial reports and research reports) that helped guide my thinking and analysis.

Post Edited (paulmerc) : 10/1/2016 2:50:30 PM (GMT-6)