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PSMA scan report is in : (((
Ok .... First I want to say that PSMA obviously works at very low PSA, at lest worked for us at 0.14. Tracer used was F-18.
There are 4 nodes with mild uptake in pelvic area and one in the groin area (inguinal) which they think is possibly not PC and will be checked by biopsy or incision. My husband will ask for it to be removed and examined since it is on the surface, and he likes "things removed"in general. Other nodes are 3 iliac and one mesorectal.
So yeah 😔, I wish there was "nothing" but at least we know where the cancer is and it can be targeted. RO thinks that this does not change initial plan but it will be intensified , more Gys to nodes and he will talk to MO regarding ADT. Possibly now a year of ADT with addition of Nubeqa. So far my husband has zero SA from Orgovyx, but only 7 days passed since he started it, so we will see.
Warning to new patients :
1) - INSIST on node sampling during RP (we did but we were ignored) , so I do not know - maybe tell that you will raise the hell if they do not sample nodes (???). I am so angry, I can not even describe the state of me at this moment. We asked numerous times for nodes to be dissected since one was faintly glowing, my husband asked for that even right before he was wheeled in for surgery - and surgeon did not do it "since nodes looked normal" - somebody just sho*t me already !!!! 🤬
2) DO NOT WAIT for uPSA to go to over 0.2 - things will bee seen on PSMA even with mild uptake ! The earlier you start with sRT , the better.
Hugssss to alllll 🤗 and hoping that you are all having much better day.
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@surftohealth88 It’s not funny, but you really do seem
to have attracted the less -ahem- competent members of our medical establishment.
What is up with that??🤷♂️
@surftohealth88
It was interesting that you are contacting UCLA RO when you live in the Bay Area. Are you considering getting treatment at UCLA or is this just for a second opinion?
The heart issues I’m having with ADT are starting to concern me. I’m speaking to my oncologist on the 15th and I’m going to bring it up with her, that maybe I should stop for a while. I know the Nubeqa will keep my PSA down, Just not sure how high my testosterone will go.
Recovery after the surgery is interesting. I’ve got At least four pretty thick stitches in my perineum. That makes it difficult to sit down, it hurts a lot. I rolled up a thick towel into a horseshoe shape and can sit on that without much pain. That’s the only thing that’s bothering me, This morning, it was burning a lot. I took two Tylenol and one 5 mg OXY and the burning is gone, And I’m having no Constipation issues, The surgeon told me no pushing, Have soft stools. I quit taking calcium for a few days and that seems to have made the difference. I’m not taking oxy continuously only when it’s really bothering me. Not being able to sit and lean forward means I have to tie my shoes by putting them on my knee sitting on the horseshoe towel. I can get dressed, standing up holding on with one hand and putting on all my underwear and pants one leg at a time. I put on my socks laying down, I have even alternately put on my underwear and pants laying down. Those are things you normally sit and lean forward to do. Maybe that’s too much information but at least it leaves people reading it an idea of what they can do if they get an AUS put in.
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9 Reactions@surftohealth88
Jeff, clearly I am behind and didn't realize you were now having surgery for incontinence. All the best with that and I hope it fixes the "plumbing" once and for all.
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1 Reaction@heavyphil
Nope - I am just more competent and have more wits than them lol, that is all.
I know a TON of people who were misdiagnosed and are still suffering consequences of that. Most doctors are mediocre and definitively uninterested in their job - just sitting there to fulfill their quota and just do basic care without ever using their brain. I also have couple of doctors who are my friends and they concur with me , so ...
@jeffmarc
Oh that is definitely not too much information !
This will help many people who ever have any kind of pain in perineum area after surgery or biopsy and definitely to all that will have AUS device installed 👍.
You are doing really great considering that you are "fresh of the table" 😌 and try to rest as much as possible. Perhaps try to sit reclined so that perineal area has zero pressure for couple of day. Yes, towel can redistribute the weight but it is still a pressure around that area and it can perhaps even slow blood circulation somewhat. I know that it is tough for active person as you to stay still and rest, but perhaps just 2-3 days would be sufficient. ; )
It is good that you are doing everything to prevent constipation, don't forget Colace and some extra fiber too.
Keep us posted about your recovery : ))) , we definitely want to know how are you doing 💗 ! When is activation day ?! : )))
@surftohealth88
I have been taking two Colace and one senna twice a day for a long time. It seems the calcium makes me really constipated without those 2 drugs. I quit taking calcium yesterday, What a difference.
The day after surgery, I had gone a couple of days without pooping. Normally, when I go, it comes out in balls. Quite Dense and not real easy to push out. A calcium feature, I had to take it three times a day to keep my calcium normal. My surgeon had specifically told me not to push because of the stitches in the perinium. Had the wife go out and get me some bisacodyl Suppositories. They’re supposed to work in 15 minutes To one hour. Ha ha ha. Six hours later I go to pee and realize I have to do a lot more than that. That stuff has lasted for three days. Just one time I used it. Cleared me right out. It says don’t use more than once a day, I wonder if it should say once a week.
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3 Reactions@jeffmarc
Oh yes : (((, calcium is VERY constipating. I can not take any at all *sigh
I tried all brands, even those "chews" ets. I never have constipation since I literary live of fruits and veggies and "go" 3 times a day but if there is even a hint of calcium in any supplement, I would very soon "know it".
I even have to check for fillers in all supplements to make sure that no Ca is present . For some reason it is often added as a filler - probably because it is cheap, bulking and make tablets very compact and hard. I pray to god I will never need to take it as supplement since I would need to take "stool softeners" with it every day too. Not a big deal though, what is necessary is necessary.
I never heard of Bisacodyl suppositories - good to know ! One never knows when one might need some extra help in that department. ; )
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1 Reaction@surftohealth88 Don’t know if I agree with all that. I’ve met a few boobs in my day but also a lot of top notch, caring people.
True, the health care system of today, having been taken over by venture capital, has definitely become a quagmire; many dolts just going thru the motions to qualify for their 401K or profit sharing plan…really sad.
It wasn’t like this 20, 30 years ago when doctors wore suits in their offices and had self respect based on their accomplishments.
Today, hoodies and sneakers and the ubiquitous scrubs embroidered with the name of the health care system is the attire of the day…what’s next, endorsement patches worn on the sleeves??
You may think it untrue or trivial, but how a professional person presents themselves really gives some insight into what motivates them inside.
Whatever health care system you’ve been involved with during this entire chapter has truly seemed incompetent - from the myriad delays in testing and reporting to the surgeon who didn’t remove affected nodes…
I sincerely HOPE🤞🤞 your radiation team sets this ship on course and gives your husband the care he deserves. Best,
Phil
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4 Reactions@jeffmarc Whenever we traveled to Europe, the ever present ‘mineral water’ would destroy my system. All the dissolved limestone in that alpine water is like putting a giant plug you know where…
And Jeff, now you know firsthand what a woman goes thru when she has an episiotomy during childbirth.
Just imagine BOTH openings stretched, torn, cut and sutured - YEOW!!😩
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3 Reactions@heavyphil
What do you mean "both" lol ? 😆
PS: I wanted to mention those sutures but than decided not to lol 😬 , very painful memory indeed ... My second child was born using forceps and even my tailbone was broken, enough said ...
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