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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?

15 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.

  • PSA was 8.17 U/ L.

    Dr. is repeating PSA test then on the basis of fresh results, he will decide for Biopsy.

  • Good, that is standard procedure here in the UK. Hopefully, the doctor has done or will do a DRE, that is a digital rectal examination. He or she should be able to feel your prostate with a finger into your rectum. They will be able to judge its size and if there any lumps in it. This, if not already done is more embarrassing than painful. The decision for biopsy depends on this as well as a rising PSA. I hope the hospital has the equipment for a 12 needle biopsy. This can be very uncomfortable, but also beware it is likely to cause a nasty infection and fever. You will need antibiotics. It shouldn't be done then unless really necessary. My thought is, even if they don't advise a biopsy, you should have your PSA tested regularly. The risk may be low, but still a risk. This is called watchful waiting. If it goes above 10 Ug/L then the risk is greater.

    You can't be given a Gleason score unless you have a biopsy. This is a minimum of 2 and a maximum of 10. Anything above 2 is a risk, but the higher it is, the more the risk.

    Listen to doctors advice, but also the choice should be yours. Do an internet search to find all you can. Look for good sites, there's good information there, but be careful, there's also rubbish.

    Discovering you have cancer is a frightening thing, keep whatever faith you have, this is shown to help resist disease. You are also not alone, 45000 men are diagnosed with prostate cancer each year in the UK alone. Less than a quarter die from it. I guess they are the ones who have not sought help! You are doing the right thing

  • Thanks for your reply & help. This was very encouraging.

    I will work on your advise.

    Regards.

  • Kindly let me know what can I do care to keep PSA level very low I:e up to 2 u/L instead 8.17 U/ L

    Regards.

  • Before testing again, Dr has prescribed medicines.

    1) Tamsulosin HCl

    0.4mg/0.5 mg

    1+0+0

    2) Ciprofloxacin 500 mg 1+0+1

  • Your doctor has given medicines to treat prostatitis which is where the prostate is inflamed due to infection. Tamsulosin is an alpha-blocker and relaxes the bladder neck muscles (which is where the prostate gland is ). Ciprofloxacin is an antibiotic which works on the urinary tract and therefore the prostate gland. In prostatitis, the gland can become enlarged and can cause trouble peeing. It will also raise your PSA.

    If your problems are due to prostatitis, these medicines will make your PSA go down.

    I had chronic prostatitis for 7 years for which I was given an alpha-blocker. When my PSA was raised in 2011 I was given antibiotics to see if the raised PSA was due to my prostatitis. This is what your doctor is doing. Let's see if it does go down. I hope so.

  • Kind Timz,

    Thanks for guidance.

    My 2nd test of Serum PSA is due on 12th instant.

    Tell me if food contoll/ selection can help in prostate treatment. If any knowledge please inform me & oblige.

    Regards.

  • Ashraf, sorry I can't give you any information on this, but suggest you search the internet. However, I can point out that there is contradictory information about this. For example It was a popular belief at one time that the red in tomatoes (Lycopene) helped prevent Prostate Cancer. There is some recent evidence however that it doesn't. Generally, any food or supplement which has antioxidant properties or anything which boosts the immune system can do no harm and might help There are a variety of products which claim these properties but they tend to be expensive.

    For all sorts of reasons it's good to eat a well balanced diet, i.e. balanced in terms of the relative amounts of protein, fat, carbohydrate, fibre, vitamins and minerals. It's particularly good to limit the amounts of fat and carbohydrate and ensure adequate protein.

    For the inflammation of prostatitis I used to take a herbal remedy called saw palmetto. My personal experience was that it did reduce inflammation, but I still got cancer.

  • Oh dear God bless on you.

    Best wishes are always with you.

    Thanks.

  • 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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