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What do people think I should do?

Posted , 7 users are following.

tony.w
tony.w

I am 70 and was diagnosed with cancer some 3 years ago. I had a prostectomy and subsequent radiotherapy. For 18 months things went well. my PSA fell from 28 to .1. However over the past 18 months it's been steadily climbing, 2-4 points at a time and my latest blood test shows it to be 19.

i lead an active life, I play tennis every week and enjoy the occasional long walk. My current treatment is quarterly injections of Zoladex an a daily tablet, cyperterone. I feel quite well apart from a drop in energy levels and tiredness which my oncologist says is down to my age and the Zoladex.

in spite of the rising PSA level he is not advising me to have any further treatment as yet. A recent bone scan was clear but the CT scan showed the cancer had spread to second small lymph gland. While I'm felling well and active he doesn't want to put me on a more aggressive regime as it would undoubtedly affect my lifestyle, he says.

whilst I can understand that, I find it hard to accept doing nothing with a rising PSA level. how high does it have to get before it becomes dangerous? 

I realise that the disease I have is incurable but sitting waiting and doing nothing is hard to take. 

Has as anyone had a similar experience? Has anyone any advice what I should do?

any advice would be greatly appreciated.

Thank yOu for reading my story.

Tony

 

2 likes, 19 replies

19 Replies

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  • georgeGG
    georgeGG tony.w

    Posted

    Dear Tony, 

    You are ahead of me on the road I hope I will not have to travel. But it would be foolish  to suppose that I could not follow you. I wish you well but cannot advise. I have noticed some recent studies that have indicated that early intervention has better overall survival stats. But quality of life is very important too. That makes it a difficult call. I hope others further up the road will help. Meantime I hope I may, with your permission, benefit from being one of your followers.

    • tony.w
      tony.w georgeGG

      Posted

      Thank you for those words George and I wish you well.

      Tony

  • carl05115
    carl05115 tony.w

    Posted

    Hi Tony,

    I haven't a clue what you should do, but wanted to write to dissuade you of an apparent misunderstanding that you may have.  PSA is a marker of stress to the prostate gland (it goes up with injury, infection, sexual activity, and cancer).  But PSA isn't cancer and PSA doesn't kill you (there are reports of individuals on the internet with PSAs over 1,000!  I will be turning 70 in October, have had a slow growing prostate cancer for at least twenty years and my PSA is now 86 (because even if it is very slow growing, the cancer and PSA double as the cancer grows).  I have had no treatment for the cancer and, to date, have no symptoms other than having to get up to urinate a few times each night.  I have a good friend in his mid seventies with the same stats as me who is five years ahead of me and whose PSA is now approaching 150, also no symptoms other than getting up at night. 

    PSA is merely a measure of stress and, according to the developer of the test should not, in and of itself, trigger a decision for treatment.  He recommended when he developed the test that it never be used for screening, but rather believed that it could be used to assess doubling time, a conceptually sound indicator of cancer aggressiveness. 

    Do you know what your gleason score was from biopsy, whether the cancer was haploid or diploid, and what your PSA doubling time was based on multiple tests over several years?  Is you PSA doubling time since your prostatectomy different and, if so, is the doubling time less?  These are the things you should be assessing.

    Also, have you read Stephen Strum, M.D.'s book on androgen deprivation treatment?

    Finally, although it may be a little late for you, have you read the U.S. Preventive Services Task Force recommendations on Prostate Cancer?

    I do wish you the best with whatever decision you make.

    • tony.w
      tony.w carl05115

      Posted

      Thank Carl for those reassuring words. I realise that we are all different but I was anxious to learn whether anyone else had a similar experience to mine. It certainly is reassuring to know that there are guys with PSA levels as high as yours and others, I had no idea it could get that high!

      I had had no symptoms before I was diagnosed, not even trips to the loo at night. It was a lucky coincidence that a bowel consultant suggested I see a urologist as he said my prostate felt a little hard. End result - tests revealed a PSA of 28 and a Gleason factor of 9, within 6 days of being diagnosed I was having a 4 hour op to remove my prostate.

      I now tell all my male friends, including my three sons who are all in their 40's to at least get tested once a year.

      thanks again

      Tony

    • tony.w
      tony.w carl05115

      Posted

      PS Carl I wil lookup those references and see if I can determine my doubling rate.

      Tony

  • Kombi_Cruiser
    Kombi_Cruiser tony.w

    Posted

    Tony.W welcome... I'm pretty close to where you are at presently only I am 53.  The fact that you have a PSA reading after having had a radical Prostectomy and Radiation simply means that your PCa had spread. Once spread it becomes incurable therefore it really is just a matter of managing time.

    I have had discussions with my Oncologists regards treatments and basically all they can do is to keep adding another chemical drug to those already being used in an attempt to slow things down. I've chosen not to have any of these additional treatments (apart from the Zoladex) as I couldn't see any sense in breaking down a fit & strong body just to be able to say that I am still alive...

    I am still very active and work 7 days a week to keep myself focused...

    The most difficult thing I am finding is living in the void that has been created...

    Sitting and waiting, as you say, is not a nice place to be but unfortunately there is little to no alternate...

    Keep doing everything little thing that makes you happy...

    Good Luck!

  • Dudley71081
    Dudley71081 tony.w

    Posted

    Hello Tony,

    i am very sorry to learn of your worrying development. It would seem that your PCa must have already escaped the capsule,  before it was removed.  It was explained to me,  that the disease has an in general,  progressive path of attack :  first the gland,  next the seminal vesicles,  then the lymph nodes and eventually metastasis.  Each of those stages affords an opportunity for medical intervention aimed at slowing down the advance of the disease;  but the effects of such treatments to general physical and mental well- being can in certain cases be quite severe and there is much debate hereon as to whether it is a worthwhile trade-off.

    This general scenario plus its extraordinary number of permutations are what makes this disease individually unique.  And as George has said,  if you look over your shoulder there are many following you down the road,   myself included.

    You ask what can be done and whilst wishing to be unpessimistic,  I don't think that currently that there is anything that can be done,  other than following the advice of and support of your Consultant,  who sounds like he has a good awareness of what is important to you.  With him no doubts being abreast of all data,  latest treatments  and etal,  you are likely to be,  notwithstanding financial and geographic constraints, a beneficiary of any advances in the management of PCa.   Amendment to diet along well publicised lines,  can also have a beneficial effect for some at least,  if not all.  It seems you are already avowed of the importance of exercise and hydration and together with getting adequate rest,  there would appear not much else you can do for yourself.

    As to you feeling more fatigued of late,  this may well be because your body is now,  due to PCa's advance,  fighting the disease harder.  I haven't seen this aspect of the body's reaction mentioned by anyone else hereon but this aspect of it was explained to me at least,  by my Consultant.

    Whilst not being defeatist,  my own philosophy is Acceptance.  I value the good life I have had and give thanks for it.   Now aged 71,  I have realised most ambitions my tiny mind could conceive.  I seem to be obtaining increased joy by observing more keenly,  Nature and Humanity ( apart from what I see on the News - of which,  I watch less and less ).

    I am a low-brow Anglican resident in South Australia.  We have the most wonderful Liturgy,  Morning Prayer  and Evening Prayer,  Chapel,  Communion and Sunday Service.  I go to some of these and am wonderfully sustained by the Christian message,  values and Fellow Christians.  I haven't fled there in panic at having a terminal disease.   Rather,  I attend out of Belief,  Faith,  Thanksgiving and Gratitude.

    I both hope you will cope well with your situation and urge you to remember,   that Divine help is at hand if you ask for it.

    Go well Tony.  You can and will.

    Regards

    Dudley

    Thanksgiving 

     

    • georgeGG
      georgeGG Dudley71081

      Posted

      Hi Dudley,

      I notice your comments relating tiredness to the body combating the cancer. Over the three months of hormone therapy before the start of radiotherapy I felt progressively brighter and more energetic. I suggested to a Macmillan nurse with whom I was reviewing my progress that I felt better because the HT was subduing my cancers. She dismissed the thought out of hand. I was not convinced and held my mouth shut and my view the same. Fighting cancer is hard work for the body. Adequate rest is sensible surely

    • Kombi_Cruiser
      Kombi_Cruiser georgeGG

      Posted

      georgeGG from my experience I felt an instant tingle run through parts of me within a moment of receiving my 1st Zoladex 10.8 implant. Since that moment I have felt a gradual and consistent decline in both strength and energy. I do not know if these things are a direct result as I have no benchmark to relate to. In addition I had two really 'up' days where I felt much stronger and even remembering commenting that it was the first time in a months I hadn't felt tired...This was the two days before I had to go back for implant 2... Different injection point and a different overall reaction... Tiredness has however remained the constant...

       

    • georgeGG
      georgeGG Kombi_Cruiser

      Posted

      Hi Kombi Cruiser, yes I was expecting tiredness such as you describe. My start point, cancers and implant are different. The advertised side effects are identical. Nothing is distinguished. Orchiiectomy the same as drugs. I expect it is part of man's raw deal to have general gene risked information when compared to the practices for Brest cancer.

      any way. I started with modest level of vitality. Perhaps fighting off two primary PCa s had me down to some degree. Perhaps Triptorelin is kinder. Perhaps I started with a lower level of testosterone and so had less change to get used to. Perhaps it is a unique combination of these factors. Perhaps with all my variable we shall never know why.

      since radiotherapy vitality has been up and down, part radiotherapy and part urine infections. Some days I attain the vitality as it was immediately before radiotherapy and on others I don't.

      Do I hear the Marta "you are all different"? Probably.

    • Dudley71081
      Dudley71081 georgeGG

      Posted

      Hi Yuos'all ( K & G ),

      The pack of PCa literature I was given by my Treating Hospital covers just about every aspect of the disease :  Physical,  Emotional,  Reactions of Relatives / Carers,  Practical problems,  & etc.,  etc.

      From memory I don't remember fatigue occasioned by the disease itself getting a mention ;  but when I asked if my untreated  'significant amount of disease' of  'moderatively aggressive Prostate Cancer ' had been having a debilitating effect on me,  the answer was  "Oh yes ! ! " ( Like ' Der ' ).

      And then when having Radiotherapy,  the Staff were all so upbeat and cheerful ( quite uplifting really,  but occluding the reality of what was being done to me physically,  i. e. Intense radiation -- as much as my body could cope with )  ... to the extent that I might have thought it the ' Eternal Optimism Syndrome '   [ Actually I think it helps THEM cope ].

      Anyway the Rad / Onc suite is separate from the main Hospital and is down an 80 metre ramp declining at about 1 in 10.  After my first Rad session,  I got half way up,  hit a bit of a wall and thought :  ' Bl-- dy Hell ' is this what it's going to be like ? '. Next day : the same and it lasted about a week before I could get right up the ramp without feeling chronically fatigued on the way up.   Yet when I eventually mentioned it to the Rad Staff they said :  ' Oh really ? '... ( as if ... ' Oh,  fancy that ' ).  Then I realised.   I might have been the only Patient that ever walked up and down.   Certainly I never saw anyone else do it.  They all utilised drop -offs to / pick ups,  at the door.

      So on reflection I think there is definitely the potential for a minor gulf to exist between the cognisance of Patient and Care Giver,   as to what it means to have any degree of aggressive PCa.

      Another Mantra for you George :  ' We are all in this together '.   ( i. e.  Members of Club Carcinoma ).  Actually I've just remembered,  that's what I used to say at Reception :  ' Is this Club Carcinoma ? ...   Admit one please ' ).

      Yeah Baby ... But there's nothing says we can't be Cool !

      Regards

      Dudley

       

    • georgeGG
      georgeGG Dudley71081

      Posted

      Hi Dudley, 

      thanks for that merry bit of writing. There were a few smiles there garnished with a sprinkling of bitter alloes. So no one in that large hot island says "ah! You're the one with the late diagnosis of a moderately agressive cancer? "Strange that, because half the way round the world no one has said to me "ah! Your the one with a late diagnosis of a moderately aggressive primary cancer plus an agressive primary cancer. Mm you don't do things by halves, what?" It is interesting that we all seem to have benign tumours that will curl up and die at the first tickle of radiation. Interesing thought you have that it is for their benefit, so they don't have to think what some of us guys will go through further down the line. Much more comfortable to see us all walking away cured, and not a side-effect in sight.

      of course, side-effects are not totally banned. There are a number of side-effects about which we are warned in advance. There is a further range of side-effects which will be admitted to if the matter is pressed in the light of experience. The mantra played there is, " oh that's quite normal." And then there's the side-effects which are not admitted to and outside the comforting umbrella of the mantra "everybody is different". They are met with flat denial. "No I've never heard of that."

      so so we swim along in a dreamy  cocoon of optimistic nonsense, or we would have, had the professionals not taught us so thoroughly to distrust their veracity. wink They're really doing us no favours at all. As we know from our experience on the forum, comfort comes from telling each other how it is and we have  to come to terms with it and live our lives from that point of reality. That is cool, man real coooool.

  • tony.w
    tony.w

    Posted

    Thank you guys for all your useful and helpful comments. I certainly don't think that the tiredness and lack of energy is totally down to my age (70) as some of the medics have suggested. I was never like this before my prostectomy!

    Anyway Friday's higher PSA really knocked me for six, mentally and I had a really bad day yesterday. Thank goodness I have a caring and understanding wife. 

    This is morning the sun was shining and the weather forecast was good so I said to my wife " to hell with feeling this bad let's go out for the day. So we drove to a great spot in Wales, did a 4.25 mile walk in the sun along a canal (no hills!) through some of the best scenery in the UK, had a nice lunch and then walked the 4.25 miles back to the car. 

    At at the end of a fantastic day you have to say to your self "OK I can't beat this but I'm not going to let it ruin the way I live while I can. 

    I have aver a meeting with my oncologist on Thursday and intent to grill him!

    thanks again for your support

    Tony

  • raymond71733
    raymond71733 tony.w

    Posted

    Hi Tony I have a gleeson score of 3+4 and Psa 13.5 my consultant wants to remove my prostrate but I want to keep it, I take Betmiga 50 mg per day for the water works and 4 bitter apricot kernals for the prostrate cancer per day since taking the kernals my cancer has stopped growing. I was diagnosed just over two years ago. I think you and all cancer patients should look at bitter apricot kernals on the web. Good luck with what you have to go through...............

     

    • tony.w
      tony.w raymond71733

      Posted

      Thank you Raymond for tha quite inteteresting tip. It's not a solution I've come across. Has anyone else?

      I hope your treament continues to have such positive results.

      Tony

    • georgeGG
      georgeGG tony.w

      Posted

      I have had radiotherapy. I take 4 apricot kernels at breakfast as part of my precautionary diet. I hope I have a cure but with one intermediate  aggressive primary PCa tumour and a second aggressive primary PCa tumour some precaution seems sensible. I cannot have radiotherapy and probably not surgery either should a new tumour arise. Better that there is no recurrence.
    • raymond71733
      raymond71733 georgeGG

      Posted

      Hi George I think that anyone going to youtube and reading about bitter apricot kernals and not trying to do something anything about their cancer with the use of these kernals really do need help. I know of two people that have cured themselves with the use of these kernals and I hope I can do the same.
    • georgeGG
      georgeGG raymond71733

      Posted

      I wish you are a successful outcome. I have seen articles that advise against relying solely on dietary cures for aggressive cancer. It may be that there is insufficient time for the diet to beat the cancer.
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