Summary of my journey to a treatment decision

[PCInPA]

Note: Links below update to reflect corrections and additions to document.

To date I have made a series of lengthy posts discussing my journey from diagnosis to deciding on therapy. In my mind, half the battle was making that decision as there truly are no great or best choices that apply to all. What makes it even harder is that there is no going back once the treatment is underway.

Anyhow, I decided to write up my journey to date and share with others in hope that someone might benefit from my experience. Perhaps my 11 page missive will be of use to some of you who are now going through this torturous phase of your own battle.

linkedin.com/posts/michaela...

The other half of the battle still lies ahead once I undergo and recover from treatment.

Here is an alternate link for those who may not use LinkedIn

sway.office.com/l5UFhSqy6Jb...

[maley2711]

I signed up for linkedin just in order to view your article. All I see there is a one page intro in very small print. ..when I enlarged the print, became blurry? help would be appreciated..I obviously know nothing about using linkedin

[PCInPA in reply to maley2711]

You should be able to tap on the article image and then view or download. If you're still unable to read it, PM me your email and I will send you a copy.

[maley2711 in reply to PCInPA]

Thanks...I'll do that!

[Aussieguy1]

Mate I just read your “journey to date” missive. Thanks so much for this very well written and informative account of your journey thus far.

I can personally say that you have provided me with some excellent information regarding available pro and cons of various treatments that are dependent on the individuals prognosis and parameters.

I wish you only the very best in the future surrounding your health and happiness.

Kind Regards

Ian.

[Haniff]

Thanks for sharing. You write well and honestly.

Appreciate your explaining in detail some abbreviations.

My very best to you and loved ones. Thumbs up to your colleagues and company you work for.

I am looking forward to your update after August. Please take care.

Haniff

[fluffyfur]

This is great. Are the numbers correct on the ED? It can't be only 6% ED for RP.

Also SBRT stands for stereotactic body radiotherapy

[PCInPA in reply to fluffyfur]

Dang, thanks for catching that. A definite typo. I have revised the links above. I also corrected and added some additional info to the document which is now published as a web page so that I can edit it in the future as needed.

[fluffyfur in reply to PCInPA]

You write in the article:

ProtecT Trial

which looked at 1643 patients, 78% of who were randomly assigned to

either radiation therapy (SBRT) or prostate removal (Radical Prostatectomy

or RP).

I think the trial participants got EBRT. I should be an editor for a living. LOL

[PCInPA in reply to fluffyfur]

All good. I want it to be accurate so I appreciate the edits. I will revise accordingly. Thanks.

[chral11]

You've had a long road. Not that dissimilar to mine. Except I am at the stop sign looking both ways still. I am interested to find out what made you choose Retzius over regular RP? I am sure you've done your research. Best of luck.

[PCInPA in reply to chral11]

The main factor for me in choosing Retzius over traditional RP is the significantly reduced likelihood of incontinence. There are also some studies indicating reduced incidence of peyronies and shrinkage.

Had my enlarged prostate not come into play I very likely would have gone with SBRT. Since surgery seems to be my best option I figure that the Retzius procedure, in experienced hands, tilts the crappy odds slightly more in my favor. I also liked the doctor's bedside manner although that was also true for the surgeon at Fox Chase.

There is some inconclusive debate as to if there is increased chance of positive margins via the Retzius procedure. I took that into account. Based on my MRI, it does not seem that this will be an issue. Likewise, the limited evidence seems to be statistically insignificant (within 2%) and could be attributable to any number of other factors. It appears that an increasing number of leading institutions are tsarting to adopt the Retzius approach. There was a similar debate about margins when robotic surgery first started becoming popular versus open surgery.

[Spyder54]

Michael,Dude, you are a great writer. Thank you. I read it like a novel. Your 2nd/lower link worked better. Best of luck in August. I hope your recovery is quick, and complete. It is all we can do. Research it well, listen to the experience of Men here on HU, go with our gut instinct when choosing a positively referred Surgeon/Radiologist (or both!), with a hope and a prayer.

I am now at 8 mos since Dx, with my Pharma Blockade putting the PCa into slumber, and pushing hard for Surgery or Radiology to hit these cells hard at 3am while most are sleeping. Everything is a compromise.

My best to you and yours,

Mike

St Pete

[Spyder54]

Michael,I read your blog. You have done your homework. You are well informed. Now just relax, and let the surgeon do his thing. Please keep us informed of your experience. Bestof luck tomorrow for a great outcome.

Mike