Home > Cancer Update > Oncology 13.0 – New Developments

Oncology 13.0 – New Developments

For the astute amongst you, you may have noticed that the 42nd round of chemotherapy has come and gone without so much as a blip. This is largely due to the fact that I did not embark on it as per my routine schedule. The reason for which…. there are murmurings underfoot.

I had a CT scan about 4 weeks ago which I have not reported back about, but it basically showed no change, except for the possibility of 1mm of growth in the largest node, but well within the margin of error. This scan has got people talking.

My oncologist, 3 weeks ago made a few comments. Basically, my cancer is not behaving as cancer should. Statistically, I have less than 20% chance of being alive in a years time, but that same statistic was true for me a year ago, and probably true for me a year before that. This cancer does not behave as conventional wisdom predicts it would. The conclusion, after 2 years of very little and very slow growth, in the context of no family history and my unusual presentation, has made oncologists begin to believe that they are dealing with a very different beast than they are used to dealing with. Cancer is a term that encompasses a very broad selection of illnesses, and whilst it follows trends, accumulates similar mutations and characteristics, each cancer is generally genetically unique to that person, and unique to the body habitus it finds itself in. Mine is clearly declaring itself to be on the more unusual end of the spectrum of illness. Forty one rounds of chemo and its tolerance, age, and my unusual response/progression, without organ metastasis (that we know of), ย are all testament to this.

Given this conclusion, people started to think that if this is an atypical presentation of adenocarcinoma, then perhaps it requires an atypical response. Conversations behind the scenes began to happen across multiple teams of multiple specialities. Then, two weeks ago, I was given an offer, which began to set things in motion.

The offer involves surgery. Retro-peritoneal lymph node dissection to be precise. The conversations were had with the urologists who are experts at this kind of surgery, since it is where testicular cancer spreads, and they perform it routinely for germ cell tumors. They were interested. The surgery is technically difficult. I have nodes behind my left renal vein (there is a possibility i could lose a kidney, but unlikely), one sandwiched between my aorta and inferior vena cava (IVC), and another one that is retro-crural, that is, behind the diaphragm where the aorta crosses. This surgery will require input from the urologists and the colorectal surgeons for their respective skills, as well as input from one of the countries leading experts in liver surgery, in order to access the retro-crural node behind the liver/diaphragm. There will also be input from the vascular surgeons as the removal of the node between the aorta and the IVC may in fact require removal of the IVC and the aorta themselves with replacement grafts sewn in.

In short, it is MAJOR surgery, with a number of potential complications that include the usual suspects of bleeding and infection, but with the addition of possible lymph fluid leak (which will delay recovery somewhat) and spinal cord infarction (this means paralysis). The latter of which is fairly rare, but present (1 in 10,000). Recovery is generally in the order of 2-3 months.

This surgery offers me three potential outcomes. The first being that the cancer relapses fast and aggressively (which is what it typically does and why surgery has not been offered up to this point). This means I die from cancer, but sooner than I might have, so in my mind, this is no different to the current situation I find my self in, just a quicker version of it. The second possible outcome is we achieve medium term remission of no cancer progression for 5-10 years, the cancer then returns, and the same ultimate outcome happens but at a much delayed time frame. Finally, the third possible outcome is long term remission, where the cancer does not return and I live for 50 years, only to die from being hit by a bus, or from a new cancer from the ridiculous number of CT scans I have had over the past 3 years. It is impossible to know what the likelihood of each outcome is, but it is reasonable to aim for medium term remission, hope for long term remission, and plan for fast relapse. To think of this surgery as cure would be inaccurate, and probably foolish, but its nice to have an option on the table that is different from my current one.

So, the next step is to get a CT PET scan, which will happen in early January, and will determine more accurately the degree of spread of the cancer in my body. If it turns out there are microscopic metastasis throughout the body, then the surgery will be a no go, if not, then I will be offered it. If the surgery goes ahead, then it’s likely to happen end of January, or beginning of February.

In the mean time, so that there are no false negatives on the CT PET scan, I have no chemo until January. Perhaps the record has been set at 41 rounds, and I shall not be extending it further, only time will tell.

Until next time….

  1. December 16, 2011 at 1:14 pm

    I think this is really encouraging news! Hoping for the best.. you deserve it.

  2. Cherie sharp
    December 16, 2011 at 1:15 pm

    Oh wow that to me sounds truly fantastic news!! I so hope this is an option for you and you get the optimum results!

    You are an inspiration to me, I don’t believe I have ever meet (well officially not meet) anyone as amazing as you in my life. I have been following your blog since I saw your 60 minutes episode, my father had bowel cancer and bowel cancer has now become a part of my life. I refer to your definition of ‘hope’ a lot I just can totally relate to it.

    Anyway good luck I will be praying for you.

  3. Helen Tripp
    December 16, 2011 at 3:24 pm

    Jared, Helen Tripp here – another commenter that you don’t know. I am the sister of Lewis Thompson, which allows me to remember your parents from Palmerston North Days, be an aunty to Simon Thompson (the MAN!) and see your current ‘status’ via Jaime Parry’s facebook page!! I hope i am not intruding by saying that your “hope…aim… and plan” comment is inspired. May you know the Holy Ones favour and pleasure.

  4. December 16, 2011 at 3:44 pm

    This is a staggering update. We will be praying for you and for all those concerned in your treatment planning. Huge decisions ahead, huge risks, but the outcomes so worth it!
    Big hugs for you, Hannah, and your whanau.

    Lyall & Louise

  5. PK - Australian Expat in CH
    December 16, 2011 at 11:00 pm

    Jared, I do hope tis surgery will be an option for you.
    Thank you for sharing your journey with us all! ๐Ÿ™‚

  6. Selena Fox
    December 18, 2011 at 2:09 pm

    prayers…..the power of prayers…

  7. Lynn
    December 18, 2011 at 5:32 pm

    Jared, this sounds so full of hope. I’m very happy for you and yours.

  8. Maree
    December 18, 2011 at 7:33 pm

    Hi Jared, thanks for sharing your news with us. I will be fervently praying specifically for God’s guidance in your decision-making and also for the medical teams involved.
    We love you guys and want the best outcome for you, will continue to uphold you in our prayers. Love and blessings to you and Hannah, Mxx

  9. Dyana Parore-Connell
    December 18, 2011 at 7:41 pm

    Wow thanks for the update of all that is being offered to you and I wish you well on this journey of yours healthwise. You are on hell of a guy, an inspiration to all who have been or had their own journey with cancer. great you have such an awesome medical team on your side and walk the walk with you. Are you a ” a clinical trial patient”. Cheers.

  10. Nathan Reese
    December 19, 2011 at 12:14 am

    Praying for the third option Jared ๐Ÿ™‚

  11. Mandy Phipps-Green
    January 2, 2012 at 9:19 pm

    I’m wishing you all the very best, Jared. xxx

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