One Year Update & how much info do you share??

[Benz_16]

Hello - I first checked in here about 1 year ago, reporting a PSA of 13.8 in January 2019 [up from 4.2 in May 2016], followed by TRUS biopsy in February 2019, with results of 3 of 12 cores positive 1 @ 3+4 + 2 @ 3+3, with a further CT bone scan [negative for metastasis] & 3T MRI in April. I met with both the Surgeon and Radiation Oncologist and ultimately chose SBRT. I had the gold seeds installed in September and completed 5 SBRT sessions by the end of October 2019. PSA dropped to 2.34 by December 2019; 1.43 by January 2020 & 0.67 from a few weeks ago - so excellent progress. For those interested, I had treatment through the Genitourinary Care Team at the Odette Cancer Centre at Sunnybrook Hospital in Toronto, ON. I'm also happy to report that the Provincial Health Care Plan [OHIP] has covered everything except parking and a few prescriptions!

My recent issue [past ~2 weeks] revolves around urination problems - nocturia [5-7x per night], urgency and difficulty voiding during the daytime. I've been prescribed Flomax and have been taking it nightly for about 1 month - but not much improvement so far. A visit to my Family Doctor is scheduled for this week.

My big question - Do most people share their condition/journey with others? I'm divorced, father of 2 sons [14 & 21] - and have only discussed this with one other person [a colon cancer survivor friend]. I did all of my consultations + treatment on my own. Also, I don't want to worry my elderly parents. I see prostate cancer, especially when following the radiation treatment route, as a non-visible ailment. There are no obvious signs that I have any condition whatsoever. Is this normal? Have others struggled with the same question? How do people perceive you when you tell them?

Thanks in advance!

[treedown]

In my experience responses are different in everybody. Comfort levels vary greatly, but I found after a while even I don't feel like discussing it much and neither do most of the people I have told. I find it hard to view life without the filter of PC so I come to this forun often.

[Tall_Allen]

I found that 1 Rapaflo worked better for me than 2 Flomax.

Whatever you keep in the closet gives it power over you. I tell anyone who will listen.

[Hobierat]

I'm with you, thought about telling and decided to keep it to myself and I'm ok with that. Dad always said , "don't tell people your troubles 80% don't care and the other 20% are glad".

[Benz_16]

Hobierat - your father sounds like a wise man!

[azcanuck]

This forum has a number of informed perspectives and experiences to benefit from, no matter one's challenges; mind/body/spirit.

PCA has been a type of filter, sorting through friends vs acquaintances....and for me, learning how to share sensitive info while asking for help....

and the majority of people seem more than willing to help when I let them know how....

[cpcohen]

When I was diagnosed, I told a bunch of people, including family. Nobody reacted badly, several gave me useful information.

. ,charles

[CHPA]

Great question. I think men by their nature don't tend to share like women do. Look at the hoopla around October breast awareness month as opposed to September prostate month... does anyone even know it is prostate awareness month. Thus the value in forums like this.

I was very fortunate to become acquitted with an OB/GYN, about my age, who went through prostate cancer about a year before I did. He was more than willing to answer any question I tossed at him both from his perspective as a physician as well as a prior patient. I have a couple other friends who are doctors and they have been good with general guidance. But the more minute details I have often dealt with on my own.