GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Those Old Post Treatment Blues

with 7 comments


Also 23 types of PC

Also 23 types of PC

Well the songs are banging around in my brain like a bunch of old blues numbers creating an earworm. “Won’t you cry me a river,…….. cry me a river,……I cried a river over you” or “You must remember this, a kiss is still a kiss, a sigh is just a sigh,….The fundamental things apply,……….As time….. goes….. by.” Ah Play it again Sam.”

I had read about the mental anguish that can accompany a patient when nearly all primary treatment for prostate cancer is completed and life goes on. Seemingly, the only thing treatment wise, happening for the patient is a three monthly PSA test and more than likely a periodic injection for continuing ADT. However the lack of any major future medical goals provokes these blues attacks and for very understandable reasons.

It has taken me 12 months down the track to arrive at this point in my little journey. Now here I am all treated out, apart from continuing ADT and wondering where the hell I go from here. I have not seen my GP or Urologist for several months, I am in need of my next eligard injection which I fortunately have a script for (The last injection was given at the radiology clinic) and I am now back home released from the radiologists care. Where do I go from here ??

I have issues with my Urologist that I am not happy about and I was constantly thinking up excuses not to phone and make the appointment that I knew deep down I really should make. I feel like giving him a miss completely, but he is all my country town really has to offer a prostate cancer patient like me, as unfortunately the only other Urologist in town may have some issues with me. My last GP had fled from the area some 9 months ago but I do have a good option to see the doctor who owns the family practice. So into the GP I go and after a little chat he advises me to do the thing I really knew I had to do.

So there I was, three weeks later in the urologist waiting room clutching my 4week overdue eligard package. I had spent the previous couple of weeks worrying about the results of my PSA test and wondering if the numbers may have risen slightly. The question is always in the back of a prostate cancer patients mind, has the PSA gone up?? Has the cancer become castrate resistant and is on its merry way ??? There are no guarantees for any of the treatments in this game because given enough time all prostate cancer will progress despite ADT.

To a prostate cancer patient, life can seem to revolve around waiting outside a doctors door for the bad news you do not want to hear. You already know the cancer will get you in the end if you don’t die from something else first. However, onward you go, wishing for the good news every time the door opens and then back to managing your disease until the next time. Prior to this visit of mine to the Urologist I did consider shutting up shop completely, meaning no more ADT, no more Urologist, no more pathology and just get on with my life for as long as I could. To my mind this would be like walking away from the door and throwing off the chains of the side effects of the ADT drugs.

The flow chart

The flow chart

However, here I am and into his office I go…. Before I even sit down, he is reading the riot act to me about “I have a rule with all my cancer patients that they see me regularly and at least every three months in the worse case.” So I bent down, picked up my bag, turned and took a step toward the door. “What are you doing???” He asked. “…….I am leaving” I replied and then my wife and carer sprung into action to diffuse the situation . Nette let fly with news of our past 4 month stint and that we had kept his office up to date with progress, he on the other hand had sent us nothing. She then asked me to sit back down.

The rest of the session did not improve when I informed him that my wife and I were considering leaving private health insurance for financial reasons. This news was not received well from his side of the fence as he failed to conceive that a pensioner could not easily find $5000 per year for private health cover. His last word on the private health dilemma was to offer me the advice that I might consider having a subcapsular orchidectomy ( surgical castration ) to help out with future costs. I received my eligard injection and the good news that my PSA was still 0.04, he asked me to have a bone density test and PSA test and to make an appointment with his secretary for June.

I shook my head as I closed the door trying to work out how surgical castration may help or save me money in the long run. I am sitting here writing this post a week later and I am still pondering his suggestion and wondering what I will do with myself. Oh and by the way, I haven’t made the next appointment yet.

What goes around

What goes around

Lee aka Popeye

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7 Responses

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  1. Ahaa, its fastidious discussion regarding this article here at this website, I have read all that,
    so at this time me also commenting here.

    LiveJasmin

    10 April 2013 at 2:06 am

  2. Hi Lee, I have just read your post……. and feel as if my husband had a hand in helping you write it OMG it is a repeat of what is happening with him, diagnosed at a similar time to you PSA 1170 at the beginning of March 2012, had a stent installed and started on hormone therapy had a 1 month injection then a 6 month one which expired in Oct 2012…. PSA was continuing to decline and in Jan 2013 was down to 22 “Yahoo” still not the greatest but given the overall scheme of things a good result. In Sept 2013 with a PSA of around 80 the urologist recommended surgical castration the offer was quickly declined and since then there has been cancelled appointments, a meeting with the GP to pass on that there will be no further urologist appointments until my husband thinks it is required (unsure if that will be any time soon), the down side to all of this is that he has an eligard injection that has taken residence on a shelf in our fridge since Oct 2012, he has now declined even that so unsure what lies ahead in the near future. He has a PSA rising again and last week had reached 332

    Kathy

    23 April 2013 at 12:47 pm

    • Kathy: My apologies for taking so long to reply to your comment as I have been travelling and also I needed to stop and try and fit the right words into my reply. You mention that your husband was put on ADT treatment with eligard injections. You did not mention if he underwent any other primary treatment apart from the stent. Normally when a patient is diagnosed they undertake (depending on how advanced) primary treatments that include surgery, radiation and ADT. (hormone therapy) I can understand how your husband feels and why the last eligard injection remains in the fridge, the side effects are difficult to deal with.
      I am not a doctor and am unable to advise on medical treatment however, I am a patient and have some experience on how this effects a patient physically and mentally. If you have delved back into my earlier posts you will know the details of my diagnosis and how I came to be writing these articles. I guess in some way my writing is how I deal with this stuff in my head.
      I have decided after a heart to heart with my GP that I will not be going back to the urologist and I will not be taking him up on his offer of surgical castration. My view of this procedure is that it will not save me money, it will not prevent the cancer from becoming castrate resistance and the event is a final degradation of testosterone. At least with the ADT there is a chance I can come off it and the testosterone may return along with my energy levels. At this time I am in remission after 8.5 weeks of radiation therapy and I am remaining on eligard for at least the next 8 months. If things turn pear shaped for me down the track my options then become fewer, with chemotherapy or perhaps with the new wonder drug zitiga. My GP can monitor this and refer me to the oncology department if things go that way.
      I have found the biggest problem when diagnosed with cancer and I include all types of cancer is trying to come to grips with it in your head. You say your husband has left his eligard in the fridge which I might suggest given his rising PSA is not a good decision. I have churned my mental ability recently with just throwing my hand in giving the ADT a miss and getting on with life and deal with whatever comes my way. I was and still am sick and tired of the whole business. However I realise I have come this far and I really have no choice (apart from the choice of doctors) and I have to see how the next several months will turn out.
      My cancer was aggressive at gleason 9 with 18 cores out of 18 and a volume of between 80% to 100% cancerous tissue in each core. It was graded as T3/T4 but all my scans were negative for metastases apart from lymph nodes. It was deemed to be beyond surgery and I was left with the choices of radiotherapy (brachytherapy was ruled out due to my TURP procedure) and ADT. I have received the maximum dose of radiation I will be able to have and am now in remission for the moment. My PSA at diagnosis was only 6.5 and was considered that the cancer was under expressing PSA which is not unusual for high grade gleason score type prostate cancer.
      Kathy I wish both you and your husband all the best with your problems with this insideous disease. If I can be of any further assistance please do not hesitate to contact me again either on the web site or email lee.popeye@bigpond.com

      Kind regards
      Lee aka Popeye

      Lee Gallagher

      27 April 2013 at 11:53 pm

  3. I drop a leave a response whenever I like a post on a site or if I have something to valuable to contribute to
    the discussion. Usually it is caused by the sincerness communicated in the article I looked at.
    And on this post Those Old Post Treatment Blues | GREG’S LEGACY. I was moved enough to post a leave a responsea response 🙂 I do have a couple of questions for you if it’s okay.
    Could it be just me or does it look as if like a few of the comments come across as if they are left by brain dead folks?
    😛 And, if you are writing at other online social sites, I would like to follow anything new
    you have to post. Could you list every one of
    all your communal sites like your twitter feed, Facebook page or linkedin profile?

  4. Hi: I am not to sure if your comment relates to my articles appearing here as your contact details relate to a Samsung site. However I will choose to reply as if it relates to my articles, so I thank you for your kind words. Unfortunately I am unable to suggest any similar sites to you that deal with the personal side of this disease.
    When I was diagnosed in March 2012 I searched the web for both technical and personal information. While there are many sites of value for technical education, the personal experience of a cancer patient dealing with this disease was sadly lacking apart from this one site.

    In my searches I came across this site, “Gregs Legacy” which was started by Greg Naylor back in 2008. He gave his story warts and all and I was able to feel empathy with his journey. Unfortunately Greg passed away from his cancer last September but he has left a wonderful legacy for men diagnosed with prostate cancer following behind him.

    Before his death, Greg asked me to continue to post personal articles from my point of view to add to his personal experiences, so that is how I started to report my personal story on this site. I too believe there is value in the personal warts and all story of a prostate cancer patients view of their travel with this diagnosis.

    Lee aka Popeye

    Lee

    29 May 2013 at 12:23 pm

  5. This is a topic that’s close to my heart… Cheers!
    Where are your contact details though?

    voucher

    25 October 2013 at 11:54 am


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