I had my surgery, prostate removed and lymph’s

[Doug47]

Dr Porter removed my prostate and 25 lymph’s. 18 of the lymph’s were G9. It’s been 35 days since the surgery. Rough healing and my junk will never work again. No buggy there but it’s weird. I don’t know how much more 𝙇𝙞𝙛𝙚 this might give me but it’s better than doing nothing.

[JamesAtlanta]

Hang in there! Really does heal and feel better. Just need to make sure you do your Kegel exercises. And get plenty of exercise. Even if it’s only walking. I had my surgery about 9-months ago and feel infinitely better now - but it does take time.

Wishing you a tremendous response to the surgery!

James

[Doug47 in reply to JamesAtlanta]

Thank you for the information James!

[Tall_Allen]

How did they assign a Gleason score to lymph nodes? Are you talking to a radiation oncologist?

[Doug47 in reply to Tall_Allen]

Idk, maybe I misunderstood. What I do know for sure, 18 came back with Cancer and they found cancer in my bladder stem. Prior to surgery my surgeon told me that radiation was not an option for me because my cancer is in my bloodstream and lymphatic system. After surgery he told me that I need to do radiation. I go for my first real follow up with him next month. I see Hilgano next week. I have no idea where I stand. I don’t feel good about how much everything has spread

[GP24]

I think removing the prostate and 18 affected lymph nodes is very beneficial. However, if the surgeon found that most lymph nodes he had removed were affected, there are most probably many more. To determine where remaining prostate cancer is, you can get a PSMA PET/CT, provided you can get to a clinic that offers that, or an Axumin scan and a bone scan. This may show that metastases are not only in the pelvis. Then a radiation of the pelvis would be of limited benefit and you may start ADT instead and avoid side effects from the radiation.

In any case, you will most probably live many years from now. Most of the prostate cancer has been removed.

[Doug47 in reply to GP24]

I like the sound of living, I hope so. I know there is no cure for me but I continue to hold on to hope. Thank you GP24

[GP24 in reply to Doug47]

Doug,

ADT after surgery can be very beneficial for high-risk patients. In this study they report that 95.9 % of the patients were alive after 5 years:

ncbi.nlm.nih.gov/pmc/articl...

A later analysis of this study reports that 87% of these patients were still alive after ten years:

meetinglibrary.asco.org/rec...

The study wanted to determine the effect of a Chemo, Mitoxantrone. However, the figures I mention are just from the control arm. These 481 patients got two years of ADT only.

[pilot52]

If they decide on radiation ask them if Proton radiation would be applicable ...they would know more after the scans....like GP24 says above it all depends on the scans....good luck ...walk walk and walk more ...

[Longterm101 in reply to pilot52]

What is difference between proton and IMRT?

[pilot52]

Proton therapy opposed to Photon therapy...which is IMRT....There are maybe 15 or so Proton units in the States...I have not checked as of late..If you are a candidate it is really a no brainer....The proton is guided to the tumor and stops. It does not pass through the body. I had two large tumors at the neck of the bladder and had 36 treatments in Houston, MD Anderson....played golf and jogged every day...went by myself and just stayed busy waiting for the time to pass. The tumors are gone but this stuff is hiding somewhere and just went on Xtandi...I was on Lupron , Casodex for a while and now Lupron Xtandi. I really stay active in the gym and when I feel tired I get busy get through is and feel great...and really never really feel tired....there should be a proton unit somewhere near you ...I got my radiation plan in Houston where they have both so they will be up front...if you go only where they have IMRT they may try to push it on you....You could go to a proton facility and get a second...then you weigh being out at least 5 days a week for 7 weeks..but other than a mild sun tan on my hips and lower back I never knew I was getting hit...They hit me from 3 directions which is not the norm but again I had two large tumors....Good Luck Blue

Skies Sky King

[pilot52 in reply to pilot52]

Addendum to this long answer .....much less tissue damage with Proton

[tallguy2 in reply to pilot52]

Thanks for posting this pilot52. My father-in-law was one of the oldest active pilots in the USA when he lost his medical at age 96. I got to fly with him quite a bit in his Piper Super Cub and Cessna 180.

[Hidden]

Key words, “blood stream and lymph nodes” meaning cancer, some micro-metastasis is traveling your body through your vascular and lymphatic system. Outside of any magic bullets developed since I was faced with this in 2004, you need a Medical Oncologist that specializes in metastatic prostate cancer. A true genitourinary cancer pro. The only way to kill the little bastards ravishing your body is chemotherapy. Please see a pro and consider aggressive treatment while your body is strong abd the tumor burden minimal.

With this said, there is controversy steeped in poor results to forego chemo as a last ditch effort. My my experience with metastatic prostate cancer, I say BS. While you are healing do some research. Ask a very important question to your doctors, “If you were in my shoes with my cancer, what would you do?” I found my guy in academia and research after I asked this same question to my two Radiation Oncologists - both giving the same reply; one in a for profit practice and the other in a non-profit practice associated with a major medical school.

Heal well.

Gourd Dancer

[j-o-h-n]

TO QUOTE GOURD_DANCER ABOVE:

"you need a Medical Oncologist that specializes in metastatic prostate cancer. A true genitourinary cancer pro." We know you're 47 years old but you'll be around for two more scores. Hang in there and don't forget to live.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/06/2019 9:58 PM DST

[dmt1121]

I think the first round of primary treatment can be the worst, physically, psychologically and emotionally. I recommend you take the time to educate yourself thoroughly about "your disease'. Everyone's condition and best treatment approach is individual. Get opinions of more than one oncologist when you are faced with treatment options and enlist a family member of friend to assist in formulating questions, accompanying you to appointments, and taking notes in appointments.

Always asked questions and if your doc is dismissive or unwilling to give you the time to discuss things with you, time to move on.

Good luck!