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The Importance Of Sharing Experiences
I wanted to write about this because it was such a positive thing.
Today I met a friend, who is also a customer of mine, for coffee. We hadn't seen each other since before my surgery and I'm pretty private and didn't share anything more than 'some medical issues I'm having to address'.
Over coffee, we talked about what we had planned and discussed what a crazy year it's been for us both and he asked how my medical stuff went. I told him that it's still going for a few years as I get tests done. He asked "wow, so you have to keep doing tests huh?" and I told him it was PSA tests because I had prostate cancer.
He shared with me that he's currently going through a bit of a scare on that front, how he has had his PSA jump quite a bit over the past year and it's at 4.8 now, the same mine was when I started with biopsies and all of that.
He was really privately concerned about his prostate issues and after spending an hour talking about my experience and what I went through and how I'm doing now, he was greatly uplifted from what was becoming a bad funk for him every day, dreading the possible reason for his PSA jumps - and this was due to another friend of his having a VERY bad experience with PC (ED/incontinence/depression/etc) so his point of view was very tainted.
The moral of the story is that we've gone through something very scary to all men - including us when we first found out. I've written so many times how impossible it was for me to find positive experiences for me to talk to in order to offset the deep funk I was getting into over nothing but bad news. We don't have to be preachy about things, or some kind of martyr, but we can share our experiences with others and we might just help them overcome something we weren't even aware they were going through until we shared and suddenly hear "wow, I'm dealing with that right now too and am really scared".
Helping him made my month, maybe my year. I told him, I'm the poster boy, I'm the success story you may want or need if this proves to be PC and know that I'm here for you day or night to talk about my experience and knowledge on the topic and he got misty because I think that's the first good news he heard.
In this case, sharing really was caring.
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Survivor
thanks for sharing that I'm very glad you did because without the support of this forum and advice from you and others I don't think I would be doing as well I am. I'm an introvert and haven't really shared my diagnosis with anyone. No one at work knows and I don't think I'm ever going to tell anyone I know outside of work. My therapist knows and he's super helpful but I feel better about my situation posting on this forum and sharing our experiences fighting this disease head on. I'm glad you were able to share your experience with your friend. It's scary as hell having this. Your post made my day. Thank you for sharing and If I could give you a hug I would. 🙂
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11 Reactionsyes..its a scary road- the doctors are not much help..but knowing I am in good company with this journey helps immensely...I wish us all health and remission/cure from this nasty disease..which disrupts all our plumbing and sex play..( at least for me)..
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4 ReactionsThat's such an unfortunate circumstance that so many men bear the weight of - and because of that weight, so many men just entering into this crappy little club of ours fear the most. We always hear about the bad things, rarely the good. It's sort of like online reviews - if the place was crappy you are 10X more likely to write a review than if it was excellent.
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4 Reactionswhen I say "doctors not much help" I mean they really dont want to sit and listen to your fears/tears...regarding prostate cancer diagnosis..however, I do believe they do their very best for all of us...and really, less than 20 yrs ago, PC could have very dire outcome for many...but was not discussed much...
in fact, even today, most men do not know what is going on with their prostate..it can get out of whack real quick..like mine: for over 30 yrs, PSA was around 1..+ or minus a few tenths..then suddenly May '25 it started spiking to over 40..luckliy, I took the reigns and got under oncologist care within 2 months and started hormone therapy...my urologist was worthless.. she was huge disappointment...altho she did order PSA test in early May..after that..I had to beg to see her...
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2 Reactions@yayhall
When they did the Spotlight on me I cited the biggest benefit I found on MCC was an introvert and found that I could speak out and talk on MCC. This allowed me to open up and discuss things I would never talk to friends or family about.
My wife has serious medical problems and I really tried hard not to add to her stress by adding mine to hers. I had many questions and feedback I was able to get. I was surprised that the center I got my prostate radiation from asked me to be a ambassador. I agreed as the amount of information I was given and can get from UFHPTI is outstanding.
I am a patient of Mayo and they are outstanding. If they had proton radiation would have stayed with them. However I have not one negative comment on my treatment at UFHPTI they are outstanding and have been doing proton radiation on prostate cancer since 2006.
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4 Reactions@survivor5280
I sometimes hesitate to post my good results and my optimistic outlook on my status of my prostate cancer.
But I thought good news and good results could help see there is good results with good treatments and care.
I am a long-range study on prostate cancer and treatments. UFHPTI got a 25-million-dollar federal grant to do it. The study in now closed as they got the 2500 participants needed. Requires a lot more surveys, questions answered, inputs, visits, but anything I can to to help the future of prostate cancer prevention, diagnosis, and treatment I am happy to be part of.
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4 ReactionsAbsolutely!! I also had the opportunity to help a friend who was on the cusp of having PCa surgery - which would have been the absolute worst treatment for his situation.
He was in total dread and You could literally see his face change when I told him to get a second opinion for possible radiation. He was NEVER even told by his urologist that this might be an option for a 75 yr old man with diabetes, liver and heart problems.
He is currently undergoing HDR brachytherapy at Sloan.
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4 ReactionsI feel we need to demystify this disease too. I am a retire sports official as of this past February once I started ADT and Radiation. Over the past couple of years I have discussed my prostate cancer journey with many of the men in our association. A couple are high risk with brothers and fathers dying from it and they opened up with many questions. Busted a few myths and had a few laughs doing so. Got them talking about it which can be a big deal for many men. Seems women are more open talking about breast cancer while wearing their badges and license plates. I have never seen a man with a prostate cancer plate or badge.
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2 ReactionsI know MCC has really helped me, it seams like if you do try and talk about PC everyone says it’s no big deal most men get it and they only have to monitor it and that you will die with prostate cancer not from it. But for me it was a really big deal that I didn’t want to be going through with. My wife has memory issues so I can’t really talk to her about anything and the kids all live in other states so there is really no one to talk honestly with about what you are feeling and having to deal with. I am relatively new at this now six weeks on Orgovyx and starting radiation next Wednesday for 28 treatments. I also suffer with PTSD from Vietnam which makes me not want to talk to anyone about anything. This form has allowed me to open up some and really just reading what others have experienced has helped me so much. It was here that I found out about asking for a Decipher test which my Doctor requested and it confirmed what my Gleason score of 8 said that my cancer was aggressive but at the same time my PMSA PET scan said that my cancer was small and still contained in just my prostate. I thing because you hear so much that prostate cancer is no a big deal it make us deciding to follow the Doctor's plan that much harder. We all want a quality of life and no matter what you do the treatment for PC is going to reduce your quality of life but at the same time it will also increase your life expectancy.
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6 ReactionsSo true, Max…prostate cancer is NOT teenage acne, although it is often treated as such…just a normal part of the life process.
And for how many decades - centuries even - was PTSD poo-poo’d, called shell shock and other inaccurate names before it was recognized as a true disorder affecting millions.
So many things hidden for no damned reason at all…Hang in there,
Phil
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