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Newly Diagnosed In AZ, Need A Little Help

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Prostate Cancer
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Posted 4/11/2021 12:23 PM (GMT 0)
Kay, Don’t be shocked if they suggest some Clinical Trials.
Posted 4/11/2021 12:35 PM (GMT 0)
Kay, as Halbert said, being at Mayo gives you an extra ounce of confidence that your team is a good one.
The incontinence at first is very common and for most men, it does improve over time.

As far as being down, I’m sure I don’t have to tell you, it’s not surprising. Hopefully he fights it. Walking a lot may help, being as active as possible, I found, brought back a sense of normalcy.
Good luck with next steps.
Posted 4/12/2021 12:01 AM (GMT 0)
Sorry that Dwight caught a bad roll of the dice with his surgery pathology results. Please encourage him to focus on his surgery recovery and continence while walking a lot and drinking water. It takes a few months after surgery to start feeling better and he may have the effects of the hormone therapy to deal with while he is physically recovering. It will be a long haul as you noted. Hope his follow up visits with Mayo go well and they can outline a solid plan to battle the disease.
Posted 4/12/2021 1:01 AM (GMT 0)
Kay and Dwight so glad that you got involved with the Mayo team in Phoenix. I am also a G-9 as you can see from my signature and really appreciated being involved with my team at the Mayo in Rochester. I was glad to read that the scans came back clean for Dwight. Let's hope for a undectectable at his first psa check which probably will be around 3 months after surgery. Dwight should walk as much as he is able to as this is one of the best things to help fight incontinence along with doing kegals. Tell him not to worry too much right now about his incontinence pretty early in the game it will get better! Hopefully with ADT and possibly radiation for the lymph node he will be undetectable the rest of his life!!

Larry
Posted 4/12/2021 1:50 AM (GMT 0)
Thanks Mumbo and Skypilot56. We are taking short walks already and I have him drinking lots of water and doing the kegels. From what I read it seems that treating this aggressively is the way to go and we will definitely discuss that with the doctor when we see him in six weeks.
Posted 4/12/2021 2:08 AM (GMT 0)
Hi Dwight & Kay. Even if your husband's post-op PSA is undetectable, given the several adverse findings in his path report, I would expect his docs to recommend adjuvant radiation after a healing period to complete his primary treatment. Despite the seriousness of his PCa, a good oncological outcome is quite possible. Please keep us posted.

Wishing you all the very best,

Djin
Posted 7/25/2021 12:17 PM (GMT 0)

Hello, Dwight & Kay ----

Summertime is here now, and when we last heard from you, you were pursuing treatment with Mayo Clinic in Arizona.

I visit Mayo Clinic in Rochester, Minnesota, as part of my healthcare plan. Mayo Clinic's history stretches back to the 1800s.

I'm a fan of Ken Burns' award-winning historical documentaries --- sit down and watch his documentary on Mayo Clinic sometime soon ---- the story of how Mayo Clinic began is inspiring ---- it all begins with a devastating Minnesota tornado --- Dr. Mayo and his two young sons rushing to help the injured --- and an inspiring "vision" to build a hospital for healing.

Today, it is a mecca for patients around the globe ---- I have met many patients from faraway lands, in my visits there.

How are you both doing? I hope you are both faring well in Arizona ---- and by now, you likely have a trusted bond with your medical team.

Just a line of greeting ---- and you have the encouragement and support of all of us here!

With my best to you,
CYCLONE --- # Iowa State University
Posted 8/11/2021 12:43 PM (GMT 0)
Hello Cyclone-ISU. I just saw your post. I am sorry I didn't reply sooner. Dwight is doing well. He had his prostate removed on 4-2-21. Surgery went well, but 11 lymph nodes were removed and one of the 11 were found to have cancer. The doctor said there is an 85% to 90% chance the cancer will comeback. When he last saw the doctor on 5-27-21 he was given a 6 month Lupron shot. He is due for a PSA next week and will see the doctor the end of this month. As a reminder he is a Gleason 9 and T3bR0N1.

I've been wondering, if we should ask the doctor for follow-up radiation since the cancer is out and will most likely return? Would it be better to get radiation now before the PSA starts to rise again?
Posted 8/11/2021 5:02 PM (GMT 0)
Hello - Dwight has a few adverse factors in addition to his G9 diagnosis so it would prudent to consider adjuvant radiation (ART) including his lymph nodes. ART is loosely described as within 6 months of surgery and PSA < 0.10 without ADT/Lupron. My guess is that the doctor will bring it up at your meeting (PSA should be good with the Lupron effect). If not, certainly ask about ART or any other next steps since the time would be right now.

I went the ART route and it was not too bad given I started at 5 months and was healed up from surgery. It is another few months spent on this disease which extends the journey but gives you another shot at a home run with better odds.
Posted 8/11/2021 5:07 PM (GMT 0)
Has he seen a radiation oncologist yet or just the urologist? If he hasn't seen an RO, I think that would be a good next step. At the very least you can have the discussion with him. Lupron is a typical step prior to radiation so I'm thinking your doctor is leaning that way anyway.

Good luck to you and keep us posted!
Posted 8/11/2021 10:16 PM (GMT 0)
The ART sounds like a good idea and we will most certainly ask the doctor about it in a couple of weeks when we see him. We saw a radiation oncologist prior to making the decision to have surgery, but not since. Michael_T, I hope the doctor is leaning that way.
Posted 8/12/2021 10:46 AM (GMT 0)
D&K, it would be a good idea to call the RO yourself and set up a consultation. In many ways, your Urologist/surgeon will be moving out of the picture, except in a coordinating role. The surgery is done, and now Dwight's treatment will be done by the RO and MO (medical oncologist) and their teams.

They probably won't start any radiation treatment for a while--at least 3 months post surgery, perhaps longer, to allow healing to get well ahead and minimize the double-whammy effect on his system. The Lupron will keep things at bay while that all important healing takes place.
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