Tall Allen

It's a good thing you stopped before irreparable damage was done. I'm happy if I was of use to you. What exactly did the genetic analysis say?

Ah, so it was mutation in the ATM gene. Be especially alert for skin cancers, and problems with gait. You probably already wear sunblock and cover up when you go outside. I think you're more prone to cataracts too.

I think I told you before that I've had skin cancers removed and I've already got cataracts but there not ready to be removed. If gait means the way I move that would be "very carefully" I guess you've noticed I'm not happy with the lack of knowledge of my 75 year old Doctor, I expected him to explain things to me but he's not that well versed on genetics. I feel like the whole thing was a waste of money because I already read up on the defect in cell repair that you told me about and all the technical info. was no use to me when the doctor knew less about it than I did! But at least now I know what I have for sure. The cancer my wife had was a very rare form of small cell cancer that is the most aggressive known to man and when it mestastasized she only lived for 3 months and now this with me is very rare so it makes you wonder if someone up there is trying tell me something! I never told you but when I had my last bone scan which was right after my cat scan I was so exhausted I came home and slept for 18 hours. I tried to tell my RO after the first treatment that something was not right and he said you'll be fine, the next day when I couldn't hold my urine for the full bladder he said you'll be fine! The next day after bleeding all night and I could see pieces of my urethra coming out in the blood, no control over my bladder or bowels and blood coming out of both and flu like symptoms I went to the emergency room and they took me right in and a doctor saw me right away. They did the workup and starting giving me blood and antibiotics so fast I couldn't believe it. They wanted me stay overnight but I told them I had to care for my two fur babies so I came home still passing blood but stopped the next day and for 3 weeks I went through hell, not eating or sleeping and spent most of that time in the bathroom. It was the worst I had ever felt in my life. With this happening so soon after my wife died I went from 250 pounds to 210, I'm 6'2 so that was about right for me but very anemic and weak. Now I know to stay away from radiation, I'm back on AD and I feel fine but I know the time will come for the RP and with my luck there's no telling how that will turn out but I'll try to be optimistic and I'll accept it as God's will ! Sorry for writing a book but venting helps and my dogs are tired of listening to it Thanks Allen, your the best, Phil

Thanks Allen, it was my wife that had small cell lung cancer and I wasn't comparing it to my PC, I was comparing her rarity type and mine with the sensitivity to radiation. I wasn't very clear on that, sorry. As far as I know I only have 1 tumor and it has been very forgiving by letting me take care of my wife and not causing any problems until she was gone and I got back on my feet. I thank God for that. I don't recall hearing the words Ataxia or Telangiectasia but as I said before it was all Greek to me and I'm not going to pursue it, I'll just avoid radiation as much as I can and stay out of the sun like I've been doing since the dermatologist got on to me and take it 1 day at a time. I'll be fine until my PC becomes castrate resistant and then I'll have my first surgery in 69 years (or I hope 75 ).
Thanks a bunch my friend, Phil

Okay, I understand now. I didn't know PC could be small cell, that's scary! Now I know what the ATM means and I can see more about how it works. I can't afford to see a geneticist and my insurance won't cover it so I have to concentrate on the PC for now. After taking care of my wife for 2 years my PSA went up to 16.8, last BX I/12 cores 3+3=6 50% involvement volume 68cc 69 years old white man with no cancer in my family. Have slightly high BP but take meds to control. This is second round of HT PSA now 1.2 after 2 months. No problems since I healed from the radiation damage. Urination normal no pain. I feel good!

With Humana everything depends on your PCP, mine is old school and thinks genetics is not important because he doesn't understand it and it makes him look bad when he's in a situation like we were in when he gave me the results of my tests that I made him get. He didn't want to get the tests done in the first place, said it was a waste of time and money. Humana knows how expensive genetic problems can be and geneticist probably won't give them the tremendous discount they require. There are none listed in my provider book so my PCP would have to file a medically necessary request and I know he won't do it. Allen, you have to understand in Fl. you have to take what you can get, not what you want. Waiting rooms are always full and you wait for at least an hour because so many Doctors have left Fl. because of medicare cut backs. It's a major problem in my area and no one is happy about it but there's nothing you can do short of moving to another state. My PCP has never done a prostate exam on me or never done anything but a quick bp check and heart and lungs check, that's it. He sees 50 or more patients a day and if you have a problem he sends you to the emergency room. He is a scrip writer and gives referrals, that's it! I just fired my uro because he wouldn't do anything by the book. The DX I gave you is 2 1/2 years old because he said I didn't need another. So you can see my problem and it's wide spread in Fl. and no one is happy about it but it is what it is, price you pay for living in a retirement state! Oh, the psa fall was when he gave me my trelstar shot, normal 90% drop. If I could find a good uro that would be great. The guy on here from Orlando who is using Dr Patel for his RP may know someone but it's out of my area and it's a pain to get humana to approve. There again, it's up to your PCP. When I have my RP I will insist on the Dr. I choose, may be Patel with 10,000 procedures which is a world record for 1 Dr. has an excellent record and patients love him and his work. I will see when the guy in Orlando has his done, he said he would let me know.

I'm in the Tampa Bay area. I will call because my PCP told me that he would get me on different insurance for the RP. He didn't take the time to explain of course but said to let him know when I was ready and he would set it up. I don't know if he is talking about the Medigap or not. He didn't say it had to be during an open enrollment period so I have no idea what insurance plan he's talking about!

I renewed my DL in July and because of Homeland Security's new "Real ID" law they had to put my name on my DL exactly like my Birth Cirt. which is Gerry and I have gone by Gary all my life and everything is in Gary. Now I have a name on my DL that doesn't match and people have been rejecting it totally screwing up my life so I'm in the process of having it amended. Until I can get this corrected everything is on hold so the open enrolment period is out the window. If and when I get it corrected I can proceed with making changes. If I died tomorrow my estate would go to the state because the name on my death cirt. wont match the name on my will or my estate so it's definitely a very serious matter. My life has been this way for the last year for some reason, everything I try to do ends up a disaster so my PC is only one of many problems I have to solve but I will not stop trying!

Thanks Allen, I don't see how medicare can set me up when my SS number and name won't match!

They can do this over the phone?

You said you went from silver to gold?

Allen, I too truly appreciate your dedication to help us on this board. It is unbelievable how much you have given us.

Akai