Hello and best of health to all. I was recently diagnosed in 10/2019. Gleason 7 (3+4) grade group 2b and my last PSA 4.0. DRE detected lump and an MRI confirmed a tumor which lead to a biopsy. My Urologist/surgeon at Mem Sloan NYC deemed the tumor as moderate and localized. He recommended either surgery or radiation. The radiologist that I met with recommended surgery. I noticed a notation on the MRI extra capsulary extension probable as well as perineural invasion on the pathology report. I was told that nothing indicates any outside invasion and that the PC is localized. Basically micrometastasis cannot be detected as of yet. Im wondering if surgery and radiation are the typical choices for localized pc at MSKCC or in general. Something positive and confusing happened after the biopsy. My symptoms have gotten better in regard to urine flow and late night bathroom trips and I just feel better. I'm leaning towards surgery thinking that with removal any outside invasion is seen or found with further pathology of the gland. Any feedback or advice is appreciated. Sorry for all of your diagnosis and I am available to help in any way that I can. Im just another man with with a cancerous gland.
Best Regards,
Tom
I opted for Davinci style prostatectomy on 01/30/20. I made this choice based on my age and MRI mostly. The radiologist who actually recommended surgery told me that I would need to have Brachy and ext beam or ext beam and Hormone if I chose that route. I had some drama with the surgery but it was cleared up quickly. The next day I was weak and my blood pressure dropped. I had to get trans to ICU for a blood transfusion. They had to go back in an put in a clip and evac the blood. My surgeon sits on the board of urology at Memorial Sloan Kettering so I didn't expect any complications. There was no blood in my urine the whole 7 days with the catheter in. 3 days after I was passing big clots for about 4 days. I had a few blockages but they passed with time. They told me that it is part of the healing process. The clots subsided and cleared up with water and time. I stopped doing Kegels for that period despite what the surgeon said. I have been lucky regarding incontinence. Im down to the shields now after 1 month. I did kegels months before the surgery and I was very active. E D is a problem of course. I think Im getting nocturnal erections. I am on 20mg of sildenafil 6 nights and 1 100mg challenge dose on the 7th day. I can orgasm and shoot blanks but I only have 20% of something happening. The tumor was to the right side so the whole left side was spared and the surgeon spared what he could on the bad side. The pathology confirmed pretty much what the MRI showed. 1 positive margin was found. It was less than 3mm. Nothing in the lymph nodes or seminal vessels. I was told that the location was in my favor and my chance of needing add treatment is 30%. My first PSA check will be on 03/13/20. I was told that it has to stay less than 0.05. I had to pull this info out of these people. Some of them live in a bubble my friends. I will update again then. Best wishes to all.
Best regards to all. I had my first PSA test post surgery on 03/13/03. My value is now undetectable. Hopefully it will remain that way. ED is still an issue. The Viagra is not doing enough yet and I will be moving on to injections in a few weeks to get more blood flow. I'll follow up with that outcome next month. I've been having tired bouts here and there. I cant tell if it's immune,low testosterone or depression. It's not the worst thing considering...
Best wishes,
Tom S
Best regards to all. I had my first PSA test post surgery on 03/13/03. My value is now undetectable. Hopefully it will remain that way. ED is still an issue. The Viagra is not doing enough yet and I will be moving on to injections in a few weeks to get more blood flow. I'll follow up with that outcome next month. I've been having tired bouts here and there. I cant tell if it's immune,low testosterone or depression. It's not the worst thing considering...
Best wishes,
Tom S
Best regards to all. I had my first PSA test post surgery on 03/13/03. My value is now undetectable. Hopefully it will remain that way. ED is still an issue. The Viagra is not doing enough yet and I will be moving on to injections in a few weeks to get more blood flow. I'll follow up with that outcome next month. I've been having tired bouts here and there. I cant tell if it's immune,low testosterone or depression. It's not the worst thing considering...
Best wishes,
Tom S
Hello, hope all is well amid this COVID19 environment. I recently started using a penile pump wich has been successful at bulding up erections,however, I need a cock ring to keep erect or I deflate. The Viagra is working more like a vitamin and still dosen't do the trick for me. I assume that the nerves are still offline and not fully recovered yet. I haven't been able to get an appt to move on to injections because of the COVID19. You need to produce blood work and they inject/instruct you at the first visit. I am sticking to the 20m 6 nights a week and 100m once a week Viagra protocol. The pump takes work but it's promising at this point. It has actually streched me back to damn near original lenght. It takes a lot of patience because your limp and need a nub to begin with. I'LL update my status after my next appt wich keeps getting cancelled but hardons are not priority in a pandemic...
Regards,
Tom Santillo
Hello and best wishes to all of you. I finally had my 1st injection on 06/10/2020. The 1st two injections are administered by the doctor. My 2nd visit is on 06/23/2020. On the 2nd visit you will be trained how to DIY. The 1st was a low 5mg dose. It worked but still not firm enough for long enough, however, very promising. The dose will increase in time appropriately as you communicate your result w the doctor. I has some weird pain that went away but not from the injection itself. That was the only side effect. The needle pricking your prick is no big deal. I will follow up in detail on my progress regarding dosing and self injection. By the way, Sildenafil did not do much for me. The vacuum penile pump was more effecteive at getting blood flow to the penis. I hope the injections bring me closer to somewhat normal. I still cant produce an erection firm enough for long enough to have regular sex.
Best Regards,
Tom S
My nerve function is pretty much normal now. I developed pyronies disease temporarily wich cleared up. It took a full year for my erections to return and got better at 18 months. I still use a vacuum pump to try and get back the 1 inch that I lost. Besides, it works for me. I only use a low dose 20 m Sildenafil here and there for sex. Of course my function will prob never be what it was prior to surgery but It's not bad. I had no idea that I would continue to improve 2 years or more down the road. I used a warm castor oil massage with the back of an electric toothbrush and a heating pad to treat my scaring or pyronies disease. I can't prove that it is a cure but after a month my situation straightened out if you know what I mean. I also did manual stretching. I hope this info helps someone.
Best Regards,
Tom S
3 years and 9 months post surgery. I still don't take anything and I have normal functioning erections. I still use the pump sometimes to get erect for hope of lengthening. The scar tissue is still there in one small spot on top but no bend or pyronies disease has returned luckily. My PSA went from 0.01 to 0.02 wich is still minimal but I got a follow soon after and it was the same 0.02. Best Regards Tom S
Tom's e-mail address is: tsant9710 AT gmail.com (replace "AT" with "@")
