More Decisions

Yesterday S and I visited my radiation oncologist, Dr W. We were a little early but soon I was called by a young woman who introduced herself as Dr W’s registrar. (Basically a doctor in training). It was soon apparent that she knew nothing about my condition. She read the clinical notes and said “you have to have chemotherapy, there are no other options for you.” She had almost as much empathy as a lizard. I say almost, because I had a pet lizard as a child and I am fairly certain that it was more caring than this doctor.

I asked her how soon could I see the medical oncologist? At least 3 months was the reply. I asked if I could see someone privately? She got her secretary to check. “You can see Dr L next week”. It then transpired that Dr L would not see me as I had no private health insurance. I told her I was prepared to pay for the consult. The answer was still no. She suggested I get private cover. Pre-existing condition? I think not. That was it. We were both very disheartened.

As we left the registrar’s office, Dr W was in the corridor. He saw the looks on our faces and told us to wait a bit and he would call us in. What a difference! Dr W examined the recent scan results and explained the extent of the cancer’s progression. He discussed why chemotherapy is the only treatment available to me at this time. The Australian government will not pay for any of the other treatment protocols until chemotherapy has been tried and proven ineffective. The only chemotherapy available is Docetaxel, or Taxotere. The only follow up treatment available is Zytiga, or Abiraterone Acetate.

I asked him about other treatments, Xtandi-(not available in Australia) and Provenge, known as Keytruda in Australia and is only available as part of a clinical trial after all else has failed.

My psa on 14 June was 160. I have been taking an Australian plant based substance called Gumbi Gumbi, a well known Aboriginal herbal medicine, 4 times daily. My psa 6 days later was 140. Is this a slowing of the rate of growth of the cancer? Or is it that the Gumbi destroys psa in the bloodstream? No way to tell apart from nuclear scans. However, I will continue taking it along with Curcumin and black pepper.

As if the cancer is not enough to worry about, I have a complete blockage of my sinuses with a severe fungal sinus infection, that can only be treated by surgical intervention. I was being treated with antibiotics and I am now told that they only made the condition worse. At least now I have an accurate diagnosis and a referral to an ENT specialist and treatment is in the pipeline.

Current status, I have been referred to a medical oncologist for chemotherapy. I am awaiting a date for my first appointment, and there are many pros and cons to weigh up. I have requested a referral to an independent medical oncologist for a second opinion. Now it is just a waiting game, so S and I plan to have a few days away at a seaside resort, while we await developments. After that, I will learn all I can about chemotherapy benefits and risks. All we want to do is get it over and get back to Canada to enjoy what remains of the summer!!

6 thoughts on “More Decisions

  1. For some reason, WP wouldn’t let me stick a “like” on your post…..but “like” is a stupid word for dealing with cancer.
    I just wanted to let you know that I think of you frequently, as there but for the grace of God go I. I’ve had my share of “bloke issues” but nothing like yours. You are an inspiration.
    Thanks for the great comments on my blog, hang in there and give a big Dookes hug to your good lady!


  2. Palliative care… if nothing else it will help control symptoms. I have started on norspan patches. Now I have no pain in my hip, so that is a plus. We are sleeping late in The Observatory Hotel at Port Macquarie! No doctors for a while at least! The journey is hard, but hang in there my friend, life is still worth living. You are in my thoughts and prayers. Les


  3. What a horrible experience! I have had to deal with few doctors as emotionally detached as that lady. It sapped the life out of me. Fortunately, the real doctor has some compassion.

    Sorry to hear you’re in an insurance bind and looking at chemo. My oncologist tells me that chemo for prostate cancer “isn’t too bad” anymore. He claims they’ve figured out the minimum dose. I still don’t like the idea.

    Zytiga is a very good drug. I was offered zytiga or xtandi when the lupron started to fail. My oncologist claims they are like two sides of the same coin. I picked xtandi because the list of side effects was smaller. For me they turned out to be headaches and nausea. I take it a night and mostly avoid the nausea. It used to be only approved for use after chemo, but the clinical trails finished showing it was effective before chemo. Crazy how our different countries won’t share each other’s clinical trials.

    I’m doing well on the xtandi, my PSA is stable in the teens. Not clear how long this will last. Up next is provenge. It’s supposed to extend survival by 2-3 months. After that he’s mentioned keytruda and chemo (keytruda and provenge are different drugs here).

    Sometimes I just want to give up. All these side effects. The worst are the depression and anxiety I take four different pills for them, and they have their own side effects.

    I hope to post an update soon. Have a good time with S. You’re lucky to have her.

    Liked by 1 person

    1. My friend, you are so right about the craziness when it comes to sharing information between our two countries! When I asked my oncologist about provenge he had to look it up on Google! Then he said it is like keytruda. He seemed surprised that I knew what keytruda was! Ì have a strong suspicion that he would prefer to skip the chemo, but the system won’t let him. The government (aka big pharma) makes the rules, not the specialists who see the results. Chemo also involves bringing in another specialist. Could be a good thing?
      Right now my biggest worry is my sinuses. I can hardly breath or talk and it is getting me down. How S puts up with it I don’t know. You are so right when you say I am lucky to have her! She lights up my life!
      I read about treatments extending life by 2 or 3 months and think, what’s the point? Then I realised they are only statistics and don’t really mean anything when it comes to us as individual human beings. Science sometimes forgets that!
      Don’t give up my friend, you have much to contribute and enjoy! I am looking forward to your next post. Have a great July 4!


      1. Thanks! I plan to have a great 4th. On the 6th I see my psychiatrist and hope to start on a path to resolve the depression and and anxiety. My oncologist has also referred me to a palliative care specialist. He does cure anything, instead he specializes in minimizing side effects of which I have many.

        I hope you get your sinuses resolved quickly. It sounds like a nightmare both in terms of pain and red tape.

        Liked by 1 person

    2. Hey brother, good words and I feel your pain.
      In the words of a song…

      “Don’t give up
      ‘Cause you have friends
      Don’t give up
      You’re not beaten yet
      Don’t give up
      I know you can make it good”

      Keep strong


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