i am feeling numb

Posted , 11 users are following.

i had my prostate removed 3 months ago i had the catheter in for 9 weeks due to slow healing and infection the last 5 weeks of that time was hell,once removed i felt great even the incontinance although heavy i could live with.I've just seen the surgon for the first time for a review he has just informed me my psi reading before the op was 16 and the last one which taken 12 weeks after the op was 10 he said he thought he ahd got it all 7 linth nodes plus the prostate he believes i have incureable prostate cancer im not sure what to think there is a scan i can have forgotten what its called but there is a waiting period and that he believes is the problem it could be to late as i said i don't know how to feel is it a death sentence i'm trying to be positive but its hard

 

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11 Replies

  • Posted

    My prayers are with you Greg, I don't know what else to say, maybe a second opinion

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  • Posted

    Hi Greg, I'm no expert, but have you had an MRI? Any other tests? What country are you in? Don't give up! Prayers inbound 

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  • Posted

    Hi, Greg,

    You have every right to feel numb right now. This news knocked the wind out of you, as it would any of us. Give yourself some time to regroup. When you're ready, start reseaching again.

    In your cancer research did you check out Focused Laser Ablation (FLA)? One of our posters, J12080, recently had this done for BPH, but it's mainly used for prostate cancer. Check out the Prostate Laser Center in Houston, TX. Maybe they can be of help.

    Wishing you the best.

    Stebrunner 

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  • Posted

    Hi Greg,

    Could you supply us with your PSA history, when was it above 3. and how fast it got to 17?   I am guessing it took a long time.  Looks like you need to think of your surgery as pushing it back, and you also need to wait and retest and calculate the growth - and it could also come down, your slow rate of healing could mean a whole lot.  Could mean everything as you were still infected!  Infection raises PSA, everyone knows that.   There is a PSA calculator on line.

    If it isn't the infection raising the PSA then rising PSA after surgery means he didn't get it all..... but it also means many years of life first as it is a really slow growing cancer.  20+ years and a PSA in the thousands with no symptoms is not uncommon.

    The test that is the most sensitive to show PSA is called the F-18 Pet scan, medicare covers it. 

    Take care, I think you will be just fine!

     

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  • Posted

    Greg you must feel gobsmacked. See if you can have the scan done privately. It may cost you but worth getting an early report rather than wait and worry more. How old are you Greg.

    Regards 

    Robin

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  • Posted

    Yeah Greg, not the best news....Usually, when prostate cancer cells have spread from the prostate to the body, it is incurable. That said, there are many drug regimes that can keep it at bay for many years. During this time, more advancements are being made. 

    You need to get the Pet scan asap. If you can afford it, go private. It will show if the prostate cancer has metastasised and set up home somewhere. If the scan comes back indicating 'hot spots' then there are several drug/radiation options. If the scan is clear, then there are also several drug options to help keep it this way.

    Some people, at the same stage you are at, have been battling this for a further 10-15+ years, so while at present it must all feel hopeless. Regroup, research and continue the battle.

    On a different tack, but similar. Remember AIDS, it is also incurable. But, these people live pretty normal life spans due to better drugs.

    ?Geoff

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  • Posted

    We are all thinking of you here...however I would guess that you may still

    have, may still have a high leucocyte count...which would mean that an

    infection may be still lingering.. .You did say that infections

    were present...

    One day at a day ..lots of very powerful options in todays medical arsenal

    Take Care

     

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  • Posted

    Those are sh*tty news. Let's hope that PET scan shows you are cancer free.

    Meanwhile google for "prostate cancer immunotherapy", perhaps it is an option you could pursue

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  • Posted

    Greg! This isn't a death sentence!!!! Don't think like that. I have prostate cancer started in 2001. I have been at 78 of PSA (yes, 78). Right now, still with cancer, my PSA is 30. I have taken 3 or 4 shots of Decapeptyl since 2013 (nothing before). Don't trust doctors. Be critical. Stay here and go on other forums. You might like to read some books about hormone therapy. Your operation was very serious. You have every right to be numb and not to be yourself for a couple of months. Take care!

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  • Posted

    Greg,

    Very sorry to hear about your situation. Hopefully, you will move on from feeling "numb" to looking into your options and becoming proactive. You didn't say where you are located. You should definitely seek other opinions on how best to move forward. There are a number of top rated medical hospitals that will review your information - Johns Hopkins, Cleveland Clinic, UCSF (San Francisco) etc. These should be covered under your medical insurance in you are in the USA. 

    IF the remaining PSA is due to cancer that was not removed then there are medications that will stop the cells from growing until you can get scans and other tests to find out what's going on. There are genetic tests that can be performed on the prostate tissue that was removed to determine if the cancer cells are slow growing or aggressive. These tests can be run up to 6 months after the tissue was removed, so there is still plenty of time to have this done. 

    Also, you didn't say what the Gleason grade of the cancer was. Did you have a biopsy before your operation? What was the result? How many cores were positive? What percent of each core had cancer, etc. This is all critical information. Did you have a MRI done during the evaluation process and what was the result? 

    All of this information needs to be evaluated before you come to any conclusions. I don't know what your numbers were and are, but it's possible your surgeon did get all of the cancer cells. Did you get a report of clear margins? 

    A 16 PSA is high, but it can also be a symptom of an enlarged prostate. There are many here on this forum with much higher PSA readings due to BPH and no cancer. That's why they get a biopsy and/or MRI scan

    So, if I were you (and I went through a similar situation a few years ago) I would gather up all the information I have, and definitely seek that second opinion from the best urologist you can find. Even if you have to private pay, a review of your information and meeting with a doctor isn't that expensive considering the benefit. 

    Before I had treatment for my prostate cancer I visited four doctors - each one specialized in a different type of treatment - then, I finally moved forward with treatment. Don't come to any conclusions before you get at least a second and possibly several opinions. 

    My very best to you,

    Tom

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