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[Deansson]

Hey y'all.

61 yr old, overweight but basically healthy, and I found out I had prostate cancer in August 2018 via biopsy. I had a 2nd biopsy at the end of November and the cancer is growing quicker than my m.d. thought it should. Something about it was growing along the nerve pathways?

So they're yanking it out 12/11. My other options were radiation which Dr advised against, and a cauterizing procedure that is optimum, according to him, but is $20,000 and not covered by any insurance in the known universe.

This is my first ever surgery, and I'm a bit more apprehensive than I thought I'd be.

My main concern is that the visceral lypodystrophy from my meds will hinder the robotic surgery, so I gave my surgeon all the info I could find on lypodystrophy and he assured me it wouldn't be a problem.

Any opinions? I mean, if I have no subcutaneous fat, but fat around my inner organs, it seems like it would get in the way ... or something.

[Tall_Allen]

When you write "My other options were radiation which Dr advised against, and a cauterizing procedure that is optimum," did you actually meet with one or several radiation oncologists? Or is this all coming from the same urologist?

i hope you will cancel the scheduled surgery. That is WAY too soon after your biopsy to have made this decision, and it sounds like you are being railroaded to pay for your uro;ogist's vacation home. i understand the "cancer panic" that sets in when you hear the diagnosis because i've been there myself. i'm not saying surgery is a bad choice, I'm just saying that you owe it to yourself to take some time to let your emotional temperature come down to the point where you are capable of making a fully rational decision that you will not regret later. For now, your best stance is to decide not to decide.

If you say where you are located and what your diagnosis was (PSA, stage, Gleason score/Grade group, cancer volume in cores and # of cores, it sounds like you have perineural invasion) I may be able to point you towards some doctors that you should be hearing from.

[Deansson in reply to Tall_Allen]

I'm in Austin.

[Deansson in reply to Tall_Allen]

This was info from Dr A. I then went for a 2nd opinion with Dr B and he confirmed Dr A's diagnosis. So I'm going to let Dr B do the surgery since Dr A, I found out later, is kind of a dick. I felt very comfortable with Dr B.

D

[Tall_Allen in reply to Deansson]

In my experience, many surgeons are "dicks." However, many dicks are great surgeons. You don't have to marry them and after the surgery you never have to see them again. Here's some pointers about how to find a doctor.

pcnrv.blogspot.com/2017/12/...

Here are questions to ask your urologist/surgeon:

pcnrv.blogspot.com/2017/12/...

In Texas, you have UT Southwest in Dallas and MD Anderson in Houston, among others. You have not mentioned the details of your diagnosis yet, so I cannot tell you which experts practice therapies that are appropriate for you.

[Darryl Partner]

Two biopsies within three months is unusual. Please share what your doctor told you to justify the second biopsy. Also please share your data...psa’s, Gleason scores, etc

[Deansson in reply to Darryl]

I don't know any of that, but I'll look it up tomorrow.

[Cubbiesfan]

My urologist blamed my hiv related lipodystrophy for a difficult robotic RP in 2011. But clearly he could/should have seen the problem beforehand.

PSA was undetectable for years even though I had a positive margin following surgery. As PSA rose later, I had radiation in 2017 and PSA returned to undetectable. I have since found out positive margins are not uncommon even without the extra belly fat.

My only advice is that you fully educate your dr about the lipo, and discuss what can be done to prevent any downsides.

[JimVanHorn]

I was 62 in 2004 when I was told I had PCa and needed 42 radiations. I had no medical insurance. So the hospitals wanted $130,000 ! I had a urologist, radiologist and oncologist/hematologist. They explained everything and the urologist had a cancer clinic with the same radiation machine as the hospitals, and his machine was newer so it didn't have several computer programs that had to be synchronized. He said he would charge me what medicare would pay, $30,000. Four years later my cancer had metastasized so I had 30 more radiations and medicare charged me $42.00. I also used Lupron (Eligard - generic) shots every 3 months for 6 1/2 years. I used Casodex for a month when I started the Lupron. Casodex reduced the Testosterone spikes when I started Lupron. Right now I am cancer free, but my oncologist checks me every 6 months. This is called "active surveillance". I live in Orlando and there were 2 urologists 12 years ago who had PCa. One had his prostate removed, and the other went for radiation and Lupron. They both died in 5 years. I telling you this because no doctor knows the future and what is the best therapy. Both men knew everything about PCa and were considered authorities in their field. PCa grows slowly and aggressive doesn't mean you need to make a snap decision. Also every PCa is a different type of cancer in a different place, with different doctors and insurances, and we all have other diseases. When they gave me a biopsy I was put into twilight sleep. So listen and learn from the computer right now and ask questions and above all else just keep truckin'.

[Hidden]

Great advice!!! Everything went very fast for me. PSA was high which I did not realize and my next psi was even higher. Everything remained on the prostate with one lesion. I chose the surgery and no matter how difficult, I am doing better and getting better and better. I am very lucky because I have good insurance and disability. But I certainly understand because I had the same fears myself. But that is a whole other subject when it comes to insurance. Definitely keep on trucking. I love that. Takes me back to my youth and it means a lot. But do hang in there. You always have this chat to come back to. Although I have never written an the initial comment but have replied, everybody here seems to be great.