New on the site : Self management

I had a prostatectomy in March 2012 and I'm now into my sixth year as a "survivor".

I am currently in a fairly good positionI No pads and adequate erections.

I have felt though that the outcome would have been very different if I hadn't researched things along the way because the information I was given by medics was often lacking and at least once, wrong.

I have felt that I have had to ask or seek out relevant therapies for myself. I was never "offered" them. I wasn't even told what they were and only had them because I found out for myself.

I wonder if anyone else has found the same?

6 Replies

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  • Kudos to you for doing research! I am a research freak on any think that is pertinent to my well being. And even when it comes to dealing with issues that are not medical.

    Getting second opinions will serve you well also. yes, I have found out things my Doctors were not familiar with. So, it's a good thing to do your homework.

  • timz, I'm curous to know, why you choose for prostatectomie. what was you PSA, was is already in your lymph nodes?

    like hearing from yoy.

    jan

  • Hi Frenchman, my PSA was 6.2, gleason (pre-op) 3+4 =7. MRI showed no local spread and bone scan OK. I was offered radiotherapy or prostatectomy. Originally, one consultant told me that prostatectomy meant 100% I would be impotent. Luckily I did my research and found out about "nerve sparing". So I ASKED for that. I don't think it would have been mentioned otherwise! My logic was that after removal I would know I was OK because PSA would be zero and as long as it stayed zero, I was OK.

    As you may have thought, I wouldn't have been offered a prostatectomy if it had spread widely. I believe they would still have offered one if local lymph nodes were involved as they could remove these as well. This wouldn't be nerve sparing though.

  • Hi,

    This may be a repeat but I didn't see the post on the site after I sent it so here it is again (roughly the same)

    I had a radical prostatectomy 2004 - Gleason about 3+4. Then had radiotherapy of therapy - the theory is that radiotherapy inhibits any remaining cancer cells from proliferating and destroys those directly in the treated area which is the bed of the prostate. With radical prostatectomy I asked for implants of Zoladex ( Goserelin Acetate - goes by slightly different brand names in different countries) before during and after the radiation - it was not the recommended treatment then but I persisted and was given it. Studies were done and now it's the recommended treatment.

    PSA started to go up after radiation and now on three monthly injections of Lucrin. (Originally a space between the injections - to extend the period that Lucrin is effective). Now on continuous three monthly injections because PSA started going up.

    Try and have a nuclear scan using the PSMA PET-CT but specifically the latest which is a Gallium 68A, i.e., a labelled PSMA PET imaging. (The radioisotope is produced on site using a fully automated radiopharmaceutical synthesis device). The Gallium 68A picks up cancer in the cell walls down to 2 microns - the previous scan types such as the Choline based one only picked up down to 5 - 10 microns.

    You normally have a DEXA bone scan also which picks up any bone metastases.

    Cheers, Aussiedad

  • Thanks Aussiedad. Unfortunately, in the UK under the NHS, we don't have such choices or such technology available. I also don't believe in undergoing investigations or treatment unless necessary. The clinicians here act under NICE guidelines based on the latest research and to question their expertise too much undermines men's confidence in them. Your reply worries me.

  • Hi,

    Radiotherapy after radical prostatectomy - the theory is that radiotherapy inhibits any remaining cancer cells from proliferating and destroys those directly in the treated area which is the bed of the prostate. I had a radical prostatectomy and asked for implants of Zoladex ( Goserelin Acetate - goes by slightly different brand names in different countries) before during and after the radiation - it was not the recommended treatment then but I persisted and was given it. Studies were done and now it's the recommended treatment.

    PSA started to go up after radiation and now on three monthly injections of Lucrin. (Originally a space between the injections - to extend the period that Lucrin is effective). Now on continuous three monthly injections because PSA started going up.

    Try and have a nuclear scan using the PSMA PET-CT but specifically the latest which is a Gallium 68A, i.e., a labelled PSMA PET imaging. (The radioisotope is produced on site using a fully automated radiopharmaceutical synthesis device). The Gallium 68A picks up cancer in the cell walls down to 2 microns - the previous scan types such as the Choline based one only picked up down to 5 - 10 microns.

    You normally have a DEXA bone scan also which picks up any bone metastases.

    Cheers, Aussiedad

    p.s. I gave similar rely to another post ... efficiency!!!

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