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Radiation PSA bounce or NOT

Steve1961
Posts: 246
Joined: Dec 2017

So I finished the depocle combo radiation treatment almost 1 year ago . 25 Ebrt which tore me to pieces and 1 hi dose brachytherapy.still on flomax 2 Times a day ...bowels are a mess .oh yeah had bloody hemmeroids for 5 days and I mean bloody ..gues I need to worry about rectal cancer now as well ...haven’t seen my RO for a followup just messaging him back and forth , finally going to see him on Friday .it won’t be good ..all I am going to do is accuse him of not caring about my quality of life and basically tell him why should I believe a thing he says ...sadly it’s all my fault .i should have known better .i will ask him why he didn’t give me the brochure telling me all about radiation treatment and all it’s side effects ,,what will he say ..Oh you didn’t get that ..uhmm not until I got diarrhea and the nurse gave me the handout 2 weeks into it..I asked if I would need to change my diet ..he said NO he only maybe had to change one persons diet ..I asked him about my BPH and would radition make it worse ..he said no it wouldn’t ...all this and wayyy more...
Lies lies lies ....the surgeon at the same place tells me I can’t make a bad decision,do radiation if unr not comfortable with surgery ..really..he said the outcome most likely would be the same ....this 32 year veteran hotshot with a chip on his shoulder told me oh yes you can remove the prostate after radiation if need be ....he does it himself only ...because he had done over 6500 surgeries and he is God ...but he didn’t tell me that it’s rarely done and has major side effects and that I really shouldn’t make my decision thinking I could later remove it if need be ..this is no fly ny night little local hospital this is UCSF ranked #5 in the country fir cancer care ..REALLY KCUF THEM ...below is my past 4 PSA results treatment started at 7.1 not good just had a .6 bounce in only 6/weeks ...oh also this hospital who Pathology dept ranks 4th in the nation decided That they see things different than the first 2 reports ..they say I hsve cribiform ...which now I find out is very aggressive and is a sure marker for distant mastisus which of course the RO didn’t believe and he doesn’t cate about the decifer test either ..
Name
Standard Range
11/6/18 2/7/19 5/2/19 6/18/19
Prostate Specific Ag
<4.00 ug/L
4.159 3.454 3.408 3.998

Looks like quite ..a bounce well I’m not waiting ...I am bugging the surgeon to monitor me closely as he is also the head of urology...I swear if he wants to experiment with me and take it out I will let him ..I don’t care if a leak like a faucet or never get an erection again ...but I am worried about rectal damage ..I am not waiting for this to keep rising and have That a hole radiologist tell me to start Lupron or something else and have only maybe 10 miserable years before it becomes resistant ...everyone knows That if radistion fails all it does is piss off the cancer and it comes back harder and faster... HOW SCARED AND STUPID COULD I HAVE BEEN ...anyone ever thinking about radiation over surgery DONT .

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Looks like you need to get a lot off of your chest.  My bet is still at the 2 year point you will be a lot closer to where you want to be.  I can't base this on my experience as I had a RARP 3/18.  But I do read about the radiation, hormone paths because if I have a surgical failure, those are some paths I may have to take.  Anyway, hope you feel better after you rip your dictors a new one and wish you the best on your journey. 

MK1965
Posts: 177
Joined: Jun 2016

Steve,

I know, your treatment did not go as expected and; don’t blame yourself for choosing it. You have chosen what you thought was best for you in time you made your decision. You wouldn’t be any happier with surgery. Compared surgical and radiation SE, give yourself 1 mile marathon advantage ahead of surgical guys. I had surgery RARP with nerves sparing and still ended up with 100% ED which poorly responded to any rehab. Your SE might look very bad to you and I agree they are. On the other side, surgery side, you might have same SE you have ( change in BM) and plus incontinece, impotence (ED), shorter penis, urinary issues like urgency, stress incontinece, frequent urination, urethral strictures, you name it.

I hope, your symptoms will improve and you will change your point to being glad you went that route , not surgery route.

wish you all the best.

 

MK

Steve1961
Posts: 246
Joined: Dec 2017

not many guys had a lot of SE with surgery ..maybe one or the other and at least You all know you are cancer free ..I am trying my best but it’s tough ...I work with a young man who disappeared fir 6 months he just came back ...he isn’t saying much but he is a mess I feel for him  ..looks to me like throat or Neck cancer ..the lady in the office left in dec ..apparantly cervical cancer ...surgery radiation chemo she isn’t back yet ..all I had to do was a small 2 hour surgery and I probably would have been just great now ...this is rough ...

MK1965
Posts: 177
Joined: Jun 2016

Steve,

On every forum I checked and posted, I see way more surgery guys complainning about terrible SE in surgery aftermath.

Very seldom, radiation guy complains about anything And all are happy with their treatment and outcome. 

Seems to me, you are worried about future of reoccurrence which is possible and it happens more often to surgery guys. Just look at positive margins of 11-22% even with best surgeons And they can go to 30+% with less experienced.

Surgery is POSSIBLE after radiation and more and more surgeons are doing it nova days. 

I was very unhapply with my post surgery recovery especially, my sexual function recovery. Being unhappy was taking me nowhere good.

i changed my outlook at life and started ENJOYING EVERY DAY AS IS THE LAST ONE.

That made big change in my happines. LIFE IS GOOD ( beer, vine, BBQ,staying late at night outside, gaining some pounds, don’t care what going to happen tomorrow etc).

Life was never better!

I don’t advice you or anyone to do the same, just my experience.

MK

Steve1961
Posts: 246
Joined: Dec 2017

u r right 

Steve1961
Posts: 246
Joined: Dec 2017

Just worried tough to mettle thru

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

If it was me I would go see another RO doctor for an evaluation of what has been done and the course of action in the future.  Sounds like your Psa is generally going down with a very slight up tic every once in a while which could be normal as the Prostate tissue dies off. Surgery can always come at a later time. Sounds like you are done with your present RO and need another viewpoint.

Dave 3+4

Georges Calvez
Posts: 276
Joined: Sep 2018

Hi there,

I would not get too hung up about the changes to your PSA in that range as it is stable as far as the assay is concerned, you could go for another one next week and get a 3.50.
Patients and doctors read too much into PSA results, you really need to look for trends rather than isolated results which are indicative only.
If I was in your shoes I would request another assay, here in France I do not need to request one, I can go down the lab in the morning, wave my credit card, have the assay done and collect the result that evening.

Best wishes,

Georges

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