Gleason 9, advice pls

User

Posted 14 Apr 2024 at 04:57

Hello everyone,

I am unhappy to be diagnosed PC but happy to find this nice forum, I was reading all night here...

I'm 56, I live in Lebanon, and I am diagnosed PC psa 76.4 when I had a urine retention, gleason 9, pet psma show that cancer did not spread to other parts of the body but gland itself is enlarged enough and one lymph node is affected and probably the rectum wall could be affected as no visible edge there. I saw 3 doctors, first one about 60 yo want radio therapy, he is affraid that surgery punch the rectum;

On another hospital, they have latest da Vinci robot, the doctor and the professor (who visit from Europe every month and operate the robot) want me to start a severe HT immediately for 4 to 6 month and they say I must have great results in shrinking the gland so we can remove it, according to them using this robot they can preserve the erection nerves and the bladder muscle..

So sever HT and we re-evaluate and new pet psma and if Operation is possible we do it.

I need ur opinion on this because I have another problem, the country here have sever financial issue from few years. No gov assistance whatsoever, The RT is covered by my health insurance but if I opt HT the drug itself is so expansive and if we could get to robotic surgery, also it's not yet covered by health insurance here.. (they cover only old butcher operation!!!!) I can post all details if needed..

Thank you all.

User

Posted 14 Apr 2024 at 13:52

Hi DJ,

If you have RT would you also have HT? In the UK I believe the HT drug is about £250 every three months.

This is only my opinion and your medics and others on this forum may disagree. You say it is close to the rectum wall and in a local lymph node. I cannot believe an operation would get all the cancer. RT would seem the highest chance of getting the cancer, but I guess it may do some damage to the rectum, so maybe that is the reason for doing the op instead.

Dave

User

Posted 14 Apr 2024 at 17:00

Hi DJ

Welcome to the community and sorry to hear about your difficult situation.
Hopefully someone on here that was faced with similar situation as yours would see your post and share their experience and how they navigated it.

As a lame person looking at your situation as described, one can see the rationale of the two doctors. It does look like you would need HT either option you take.
Good luck.

Eddie

User

Posted 14 Apr 2024 at 19:41

Most prostatectomies are robot assisted these days but in certain cases in the UK surgeons sometimes still recommend open surgery (old butcher operation) in preference to robotic. Open surgery was recommended to me. I was stage T3bN0M0 so it was locally advanced (breaking through the capsule and seminal vesicle invasion). The surgeon argued that being able to feel around the prostate there was a better chance of getting it all out. The theory might be good but it didn't quite work out in practice for me. On a positive note the surgeon was able to achieve full nerve sparing on one side and partial on the other side. My urinary continence is now around 99%. Please be aware nerve sparing can not be guaranteed whichever type of surgery you have. Choosing which radicle treatment is always a difficult decision but it is made worse for you by having to consider the financial cost as well.

User

Posted 15 Apr 2024 at 04:27

Thank you all,

In total i saw 3 doctors; one old school it seem (about 60yo) who said he is thinking RT because he is affraid than normal op will hurt the rectum and this one i still did not see him after PSMA PET. because he was right and PSMA report say no visible edge rectum side.

i saw a french professor who only work in robotic surgery only prostate and always visit here to make robot prostate surgery's and a local doctor that work in same hosp where the advanced robot is available (da vinchi IV), both opted for severe HT for few month and we re-evaluate. they say last year this was adopted (in french hosp Paris where the professor work) and 38 case treated like this with good results, sever HT will shrink the prostate and then it can be removed with min damage regarding nerves and continence.

also this doctor said that anyway i need HT even if we will opt for RT.

both want me to take same HT drug, Xt@ndi 40mg 4 capsule per day (i don't know if it's allowed to post the name) and some injection also. injection cost about 250usd per month and available but the drug itself that they insisted on taking this one exact is priced about 2500usd per box that contain 128pill and out of stock in local drug stores. on black market i found it made in india at about 1000usd.. which is already too high too for me.

I made a request for GOV aide and still did not get if they accept the demand yet and i asked around, they provide another drug at reduced price if they accept the demand.

i hope i explained well this part.. i still did not started anything for cancer treatment... awaiting reply from health ministry... is it ok to wait like this or this can get really bad?

BTW, if we get good results with HT as they expect, robotic is un-comparable to old open surgery they say. for too many reason....

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