Hey Fellas, Hope everyone is getting on well. I wanted to share a story my medical oncologist told me the other day regarding PSA levels post-surgery. So many of you already know my 3-month post-surgery PSA test came back at 0.7. In discussing treatments, the doctor told me about another patient who had a slightly higher PSA level than I had post-surgery, 1.0 The patient opted to do a PET scan and they found that he had a spot on his collarbone and that the prostate cancer cells were coming from that area. So instead of radiating the prostate bed they treated the neck area. I was totally surprised by this and did not previously know that prostate cancer could exist in another part of the body. Moving forward, I am scheduled for a PET scan on Monday, December 3rd and if all goes well, they will only have to treat the prostate bed in addition to hormone therapy. I am not looking forward to this, but I remain grateful that technology is growing around treatments. On another note...I had my first Trimix treatment for ED/sexual function at MSK this week and was trained on how to self-administer. I have to admit seeing my member come to a full salute after 4 1/2 months of limp and partial erections was very satisfying. I always knew that sexual function is very important to me and that I would need to do all I can to ensure function recovery, but the psychological effect of physically seeing and feeling this experience was very satisfying and gives me lots of hope. I am committed to following Dr. Mulhall's advice and am currently reading his book on sexual rehabilitation post PC treatments. I will post more as I learn more, but I feel as if we are all in this together and it is my hope maybe some of this information can help someone on their journey.
Interesting story from the oncologist... - Prostate Cancer A...
Interesting story from the oncologist, and also my experience with Trimix.
Congratulations on your erection! (feel like I should know you better to say that....). And I hope the PET scan et. al. goes well and the scan shows nothing more than you already know of.
thanks
I hope the PET scan is negative. Good insight that the trimix provides emotional encouragement. Keep the stories coming.
Your posts offer tremendous support and hope for this journey we all share. Thanks too for your articulation of the medical complexities you are navigating and your excellent attitude thru it all.
Great news! Good luck to you, man. You mentioned hormone therapy. A few experiences and observations:
I'm having IMRT and it will be followed by brahcytherapy. The third leg of treatment is hormone therapy. For me, this has been the most difficult part of the whole ordeal. I was given Firmagon and then Lupron. They work but the toll has been great on me: no sex drive, no ejaculate, shrinking genitals, hot flashes, emotional upheaval, depression and sadness. Oh, and, I've lost muscle mass, I've had to change my diet a lot, and I feel 10 yrs older. I'm being told I may have to continue on this for 1-2 yrs. This seems to be my new normal...and I'm not liking it at all. But, like all of us, we adjust. My advice: discuss hormone therapy thoroughly with your docs! and know what you're getting into.
Thanks Ed, I’m taking it one step at a time. My next step is the PET scan this Monday.
I flat out refused to do hormone therapy for more than six months. I told my oncologist that quality of life is more important. Now I've read that, after three months, the damage from Lupron can become permanent. I'm in the third month now and just finished up SBRT treatment two days ago. I'm seriously thinking about just bailing on the whole treatment at this point--no more hormones, tests, blood draws, etc. and letting the chips fall where they may. If the treatment worked--great. If not, I'm lucky enough to live in a MAID state so can go out quickly without pain.
So happy for your Trimix results! I know exactly what you mean about the psychological effect. I did not achieve a full erection on Bimix but just a bit of plumping and suggestion of life down there makes the injection worthwhile. I just had my first appointment at Dr. Mulhall's office. I continually marvel at the quality of care and true science at MSK.
Good luck with the PET scan. I am still confused why PSA (Prostate Specific Antigens) are tested for when I have had a radical prostatectomy. Apparently they do travel.
Thanks for your post. Informative and uplifting.
Hey George, you are in great hands. I met with Mulhall on first visit, but had Natalie for first injection and training. Wishing you the best results as well.
Interesting that a PET scan would be done this early...? I'm at about the same PSA level now 3 1/2 years after prostatectomy and still being monitored with not even the suggestion of a scan. About a year ago I tried for the ultra sensitive PSMA scan with special contrast, which makes any very small cancer cells visible, but was told my PSA was to low for the test to be successful. I'm wondering now if PET is more sensitive than the PSMA? Wouldn't it be too soon to detect anything?
Thanks for the update and I totally agree, lack of being able to achieve an erection is indeed psychologically challenging. I’m due to have instruction for the Caverject injection and I just keep praying that it’ll work. I want my sex life back!!
The Caverject Dual 20 microgram works perfectly for me. I get really hard erection that ables me penetrate. The hard on lasts a bit over one hour and I can give real pleasure to the guy I am with.
That is great news, I'm so happy for you. I may have to try that, I just have to mentally get past the idea of a needle there. Thanks for sharing the good news, keep living and enjoying life my friend.
Always good to hear a positive story. But isn't the big side effect from hormone therapy ED and all the baggage that goes with it? I, too, am a patient of Dr. Mulhill. (In fact I was the patient just before you at your visit. Didn't seem appropriate to greet.) My results were not so positive. They discovered I have a venous leak (blood goes in but doesn't hold for the erection). Moving on. Don't want the implant as I already have an AUS which is controlled by a pump/switch in my testicle sack. It just isn't worth it to me. I've had to rethink my entire future sex life. It seems I may be flipping.
On another note, my PSA has risen very slightly so we are on a wait and see.
And one of my brothers is going in for prostate biopsy with a PSA of 10.
I have another friend who had treatment a few years ago. He is going into a low chemo dosage for what they expect to be lifelong.
Sorry, not feeling real positive at the moment. Thanks for your encouraging posts though.
Sorry to hear that George. This struggle can be overwhelming sometime. Glad we have this community to vent. Keep your head up, You got this.
And don't forget: the Giddy is coming out in September. This little, wearable device works to combat ED on the same principle -- pressure yes, constriction no -- that the Loop does. Giddy should be a wonderful addition to the ED toolkit!
Maybe less than ideal...
Does anyone have experience with developing scar tissue from the Trimix injections? I only got minimal instruction from my surgeon's PA, and nothing to say about repeated injections at the same site (though I have tried to avoid that). On a related note, I discovered that one should not use a strap-on dildo with a Trimix-induced injection underneath the strap-on pad. I'm hoping that the swelling around the base of my penis at the injection site is only a temporary result.
Congratulations on erections returning. Tri-Mix worked well on me as I had not experienced for several months as well and it was a joy to have an erection again. My smile returned for the first time in months. After readjusting the dose the pain subsided and I'm getting better with the Inject-Ease but I'm still not that good on the left side yet. I have my first PSA in about 2 weteks. When you were mentioning the different scans, bone, renal, CAT you brought back memories of the IVP'S, endoscopes, stents in my penis(two), lasers it my penis to get rid of a mass in my urethra between my kidney and bladder. Wow. All of this to determine if there was cancer anywhere else before RP. Dream we are definitely on a journey which takes patience, fortitude, positive attitude and the most important is courage. We are blessed to have all these other brothers to try to help us navigate the path with their experiences strength and hope. Good luck, Dream.
Thinking surgery...
New Member, 62 year old, with my on-going story
RP Aug 2018, Depression Jan 2019
