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Surgery vs Hormone therapy/radiation - struggling to decide

Posted , 14 users are following.

bobbyk
bobbyk

I have been diagnosed with Gleason 7 PSA 9 prostate cancer.

Biopsy showed cancer was in entire prostate and towards the edge but no evidence it had gone outside.

Bone scan normal.

Age 60. Generally healthy.

I have been advised surgery or hormone therapy for three years together with radiation.

The surgeon preferred surgery as did the consultant who would have been in charge of hormone therapy.

I think their logic was that surgery gave the greatest chance of 100% cure.

However I am very apprehensive about surgery and really struggling to make up my mind....

Please could you help me in thinking through some of the pros and cons and your experiences in particular to help me decide...

Every few hours I keep changing my mind. ...

2 likes, 24 replies

24 Replies

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  • alfred5
    alfred5 bobbyk

    Posted

    Hello, if you read statistics, the chance of removing the cancer is fairly similar, though with prostate cancer I don't think they ever class treatment as a complete cure. The statistics of it returning are exactly the same with radiotherapy as with surgery. The only real thing I have noticed on other forums is that people realise if it returns after removal (it returns in the same area) you can then have radiotherapy, if you have radiotherapy and it returns you cannot have more radi treatment. We were never offered surgery, offered brachytherapy or radiotherapy, no hormones needed. My other half had brachytherapy back in January. He was never told if it returns then the treatments are more limited, I read that myself. As I said he was not offered removal but with the surgery and incontinence problems he would have found his job as a farmer very difficult. So he would have been very reluctant to have it removed. 

    Another downside to brachy is it takes a year or so to know whether it has been successful, I think it is quicker with radiotherapy, obviously even quicker or instant with surgery. I hope you come to a decision to suit you, please don't let a surgeon or radiologist persuade you to go for the treatment you are not happy with. All the best.

    • bobbyk
      bobbyk alfred5

      Posted

      Thanks.

      That's what I was told as well. That if I have surgery and it returns then there is a second bite at the cherry with the radiology treatment.

  • norma72045
    norma72045 bobbyk

    Posted

    Hi bobbyk, I'm the wife of a 73yrold man,who recently was given your dilemma.  He was Gleason score 7,he had 12biopsies taken and 3 came back cancerous,he also ended up with Septecemiecicemia due to the biopsies.  Right then,after overcoming that he was given the same options as you,but he wasn't pressured with either option.  After coming home and talking about it,he decided on hormone therapy and radiotherapy. He took tablets for about 2wks he then had the three month injection,he's due a MRI scan next week then he will start his radiotherapy.

    So far his only problem has been tired ( which is getting less) and 1-2 hot flushes.  Now like yourself this is a man with no health problems and walks every day.  He's had an awful lot of stress due to the NHS, not his oncologists he's been brilliant.  I would say he's doing great.

    But at the end of the day ,I can only tell you how my hubby is.

    The decision has to be yours.  My advise would be to gather up as much information as you can ,ask questions then make your decision.

        Good luck and take care 

    • bobbyk
      bobbyk norma72045

      Posted

      Thanks.

      Is the oncologist not part of the NHS?

      I am glad to hear that your partner is doing well.

    • norma72045
      norma72045 bobbyk

      Posted

      Hi Bobby,sorry if that didn't make sense.The oncologist was a part of the NHS,but he was the only one my hubby felt he could depend on.

      Now one of your questions I noticed you ask,was " how you get to speak to an oncologist " Well in my hubby's case he can just ring his secretary and get another appointment. Now if you do this,or even speak to an expert I suggest you write all your questions down,anything you want to know ask.

      They don't mind.  And don't make your mind up until you understand all that's being told to you.

      Another way of getting answers is to go on the Prostate cancer Macmillan site. You can even ring them for advice,they are brilliant and very very helpful.  You take care and get it all right in your head.😀😀

  • peter06554
    peter06554 bobbyk

    Posted

    I was diagnosed with Prostrate cancer in 2009. Gleeson Scale 9 stage 4. I was given 12 months to live. I had 6 weeks of radiation treatment and injections every three months. I took medication daily. It took them several months to realise I did not produce PSA and I then had regular CT Scans. The aledged cancer in my lungs did not alter over a period of time and they came to the concluion it was a result of heavy smoking. In 2010 i was diagnosed with Cancer of the throat and had a second dose of radiation. The worst experience of my life with burnt throat and skin on my neck.

    in 2013 I was again given 12 Months to live and the scan looked pretty bad but I went on to Abriterone which is around £900 a week. I think it was intended  to expend life by three or four months. Im now on months 25 and the cancer has shrunk back and dormant.

    No one tells you that there are side effects from Radiation treatment because it doesnt discriminate against cancer cells and normal cells. It destroyed the lymph glands in my groin causing sever lymomedia  which i have a carer come in twice a day to fit stockings. was it worth it. im still here and my answer is do what the consultant suggests. you cannt avoid the inevevitable  you can only delay it. and keep fighting.

    good luck

    • bobbyk
      bobbyk peter06554

      Posted

      Thanks.

      I am glad to hear that the cancer has shrunk back. I hope you are able to manage the side effects of the treatment.

  • Attempt82
    Attempt82 bobbyk

    Posted

    Hi bobbyk

    I strongly recommend that you see an oncologist before you go under the knife.

    My PSA was 7.4 when my gp . referred me to a consultant surgeon.

    The surgery was uncomfortable afterwards with a catheter fitted for 2weeks, a while later I had a chance to speak to the oncologist he told me that surgeons are men of action and they like to " go in", he said he would have taken a watch and see policy and that possibly I would not have needed invasive surgery but I'll never know.

    As a matter of urgency I suggest you see an oncologist.

    Good luck

    Attempt83

    • bobbyk
      bobbyk Attempt82

      Posted

      How do I arrange to see an oncologist? I thought I had already spoken to an oncologist.

      This was the person (I think) who reviewed the biopsy and discussed the hormone therapy and radiation treatment before suggesting the discussion with a surgeon.

      It's hard to keep up with who the different consultants I have spoken to actually are.

    • Attempt82
      Attempt82 bobbyk

      Posted

      You can ask the consultants secretary, if he is a surgeon then you have the right to speak to an oncologist, the secretaries are all helpful, if you haven't been given any leaflet's describing the various treatments ask for them, you're in a difficult place right now because no one can tell you what to do, you have this decision on your own, talk the choices over with your family, make a decision and stick to it don't try second guessing yourself.

      Good luck my friend my thoughts are with you

      Regards

      John

      Attempt 83

  • carl05115
    carl05115 bobbyk

    Posted

    Bobby,

    This is clearly not enough evidence to make a decision.  What does it mean "cancer was in entire prostate?"  Apparently you went through a needle biopsy and they found cancer in all of the core samples (how many samples, was it a guided biopsy in some way and if so how, how many were Gleason 3, how many were Gleason 4, how many mm cancer was each of the sample cores, were the samples diploid or haploid)?  Was your Gleason 3 + 4 or 4 + 3?  A PSA of 9 means nothing. How many times have you had PSA tests and what is the doubling time over five or six tests (remember, no sex for several days prior to a test).  No one could advise you whether to have surgery, radiation, or simply nothing based on the information that you provided.  Tell us more!  

    I wish you the best,  Carl  

    • bobbyk
      bobbyk carl05115

      Posted

      Thanks for your reply.

      11 out of the 12 cores indicated cancer.

      5 on the lycert scale.

      Further there was evidence that it was on the edge of the prostate. The term "epscicular membrane " might have been used

      When I spoke to the surgeon he said it was unlikely this was cancer (ie in the membrane) as in his experience when they review the prostate after extraction it usually proves otherwise.

      Unfortunately I didn't know to ask about 4 +3 or 3+ 4 as I wasn't familiar with this.

      What the doc did say was that it was at the low end of the Gleason 7.

      All through the consultations the thing they have most been worried about is that the cancer is all over the prostate and indications are that it is in the membrane. And this is why 3 years of hormone therapy was recommended rather than the standard 1 year.

      I have had two psa tests in a month and both were around 9.3.

      I don't know how I would go about getting more detailed information or even what to do with it.

      I am so confused.

    • carl05115
      carl05115 bobbyk

      Posted

      Sorry to hear of your confusion.  Also, sorry to hear that you feel rushed to make a decision.  That has to make you very anxious.

      Thankfully, prostate cancer is almost always slow growing and yours sounds like it is with a 3 + 4 ("on the lower end of Gleason 7").  That is the only indicator of aggressiveness or lack thereof in your report and it suggests a slow-growing cancer.  PSA of 9.3 means absolutely nothing and you don't have enough data points to indicate a doubling time (an indicator of aggressiveness).  You would need to get PSA tests over perhaps a year, three months apart, and then determine doubling time.  I don't know of anything called a "Lycert Scale" and there is no reference to such a scale in medical journals or on Google, although a Likert scale is a seven point scale developed for psychometrics by psychologists.  How it pertains is beyond me unless it is a measure of how anxious you are (not a good reason for intervention)!  Finally, 11 of 12 cores with cancer is concerning, although the Gleason of 3 + 4 (measure of aggressiveness isn't).  This means that you MAY have a lot of non-aggressive cancer in your prostate (many dull needles that probably won't harm you in the haystack so to speak).  This would also depend on whether the biopsy was guided (color doppler where they are more likely to hit the cancer or blind biopsy where they aren't as likely to hit the cancer).  

      Back to my original position, I wouldn't do anything quickly, but would get more data to see how aggressive the cancer is.  

      But then it is your call.  Many men get anxious and the surgeon or oncologist will operate or radiate to address your anxiety (again, not a justifiable reason for medical intervention).

      I Wish You The Best,  Carl 

    • bobbyk
      bobbyk carl05115

      Posted

      Likert scale is a measuring scale for MRI scan that I had before biopsy.

      See below for an article that refers to it.

      The doc said I should definitely have a biopsy after a 5 rating following the MRI.

      https://www.auanet.org/university/abstract_detail.cfm?id=MP7-16&meetingID=14ORL

      I will speak to my oncologist again and try and get more details about the findings themselves.

      What's your take on "lots of non aggressive cancerous cells" on a worry scale? My biggest worry is spread outside the prostate as the chances of a cure are then faded.

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