The Decision (And More)

I just wanted to provide everyone with a quick update.  Things are moving quickly, so quickly I feel like I can hardly breathe.  But maybe that’s a good thing.  No time to  over-think.   

I saw the oncologist yesterday, Dr. A.C., who had conferred with Dr. D.L., the HIPEC surgeon.  They both agree that HIPEC is my best shot at a cure.  Chemo after chemo after chemo for those who have Stage IV colon cancer in the textbook case inevitably ends in death — that’s the reality.  In Dr. A.C.s words, “We have to throw another modality into this.”  We need to change things around.  We need to do something different. Unless I’m somehow extraordinarily lucky with chemo, I will eventually die from this disease without HIPEC; maybe I could manage to live with it as a chronic, ever present disease that is controlled with chemo for a good number of years, but I would never be free of it.  HIPEC offers me the best chance of a cure.  I have to take that chance.

I spent last weekend reading all the HIPEC studies, (while Josh reread all of them).  It seems to me that the primary argument against HIPEC is that there hasn’t been a big study to truly determine its effectiveness, the kind of study that assesses the results of a thousand HIPEC recipients as compared to a control group.  There in fact have been less than a handful of studies that consider small numbers of cases (i.e. 100 or fewer) within the last 11 years. In light of potential serious complications, the question is whether one should subject oneself to a procedure that hasn’t been widely studied (even if it has been relatively widely performed).

The procedure was pioneered in the early 1990s for various types of cancer that spread to the peritoneum (e.g., ovarian cancer).  Limited data shows that it has been more effective for treating other types of cancer (i.e. 50% 5-year survival rates versus 38% for colon cancer).  38% still is substantially higher than the 8% you generally see with Stage IV colon cancer cases.  It certainly seems to me both from the studies and from the anecdotal evidence I’ve gathered, that HIPEC is almost in all cases a life extender, and sometimes a life saver, a result that is dependent on the extent of disease at the time the surgery is performed.

Since we agree on HIPEC, the question is then one of timing — when to do HIPEC.  As Dr. A.C. said, I’m at high risk for both nodal spread and peritoneal spread.  It isn’t possible to quantify which risk is greater.  HIPEC will address the latter but not the former because it is a treatment localized to the peritoneum.  IV chemotherapy would address the former.  Do we do a few treatments of folfiri first or do we just proceed immediately to HIPEC?  If I knew where the disease were, that question would be easier to answer, but I don’t.  The truth though is that peritoneal spread is deadlier than nodal spread, meaning that in cases where people have tumors all over their peritoneum, the average life span is 6-9 months whereas people who have disease in their lymph nodes and then it spreads to their lungs or liver have a longer life span.  Based on that data point, I think it’s better to do the HIPEC sooner rather than later, to really get at it while it’s microscopic disease (which is the best case scenario) before it has a chance to grow out of control.  There is also a less critical argument that the more chemo I have, the weaker I will become, and it’s better to have the surgery with less accumulated toxicity.  I don’t think this is a compelling given my general youth and fitness, but the argument exists.  I should also note that my CEA rose again as of yesterday, another 0.5 points, which suggests to me that the maintenance chemo is not working and that the disease is more likely in the peritoneum.  Getting that news made me even more anxious to have HIPEC sooner rather than later.

When it will be is to be determined.  It could be as early as next week, mid-March at the latest.  I didn’t have any chemo yesterday in the expectation that it could happen quickly.  There’s a lot to do to prepare from a logistics as well as mental and emotional perspective.  Some might be wondering whether I’ll be getting a second opinion.  The answer is likely no.  I don’t think any HIPEC surgeon would tell me differently.  I’m the “easy” HIPEC case, not the patient with spread everywhere, where the debate is whether HIPEC would be effective and should be done.

So there you have it.  That’s my decision, and I feel good about it.  It feels good to actually have a plan.  Now to actually get the details worked out.

Some other more light-hearted news I wanted to share — I and a bunch of others will be on the Today Show tomorrow morning (March 1).  Look for the crazy people painted blue standing outside in the cold outside the studio to promote the beginning of Colorectal Cancer Awareness Month.  Here’s my public service announcement — 90% of all colon and rectal cancers are preventable through screening.  If you are 50 or older, you should get your colonoscopy and younger if you have any family history.  Don’t subject yourself to what I’m going through.

I myself will not be painted blue (although I will be wearing the “Love Your Butt” ( t-shirts; Love Your Butt is a national awareness campaign) because right after my appearance on the Today Show, I’m doing Cycle for Survival for four hours!  I wrote about Cycle for Survival in Fight With Me.  Thank you so much to everyone who has donated.  If you haven’t and want to, please remember to do so by clicking here.  Any amount would be appreciated.  Play a role in saving your own life and those of your loved ones.  Cancer is a prevalent inevitability in today’s modern world; this is why we need to find a cure.  Read (or reread) Fight With Me to hear all my arguments for donating to cancer research that are quite personal to everyone.

I have a feeling that I’ll be turning to my writing and this blog a lot in the days leading up to my surgery as I mentally and emotionally prepare.  So stay tuned for more very soon.  Love to you all.


5 Comments (+add yours?)

  1. Bill Ide
    Feb 28, 2014 @ 12:41:47

    Love your “bring it on” spirit! Your positive spirit and love jump off the page.Am tuned.


  2. Lisa
    Mar 06, 2014 @ 05:11:37

    Julie I think your strategy makes sense! Why not go for it, because , as you say, chemo is ultimately only palliative. I think the most aggressie treatment makes most sense. I am thinking of you and wanting the best possible outcome! x


  3. TheAstonishingFartMan
    Mar 06, 2014 @ 11:31:07

    Thanks for blogging. You write beautifully–so intelligently yet so artlessly. (I’m jealous!)

    Diagnosed 08/13/2010 with Stage IV Colon Cancer with liver mets, I’ve been through a couple of big surgeries (not HIPEC), chemo, recurrence of mets in the liver, etc., but am now celebrating two years of clean scans and normal CEAs. Even though I’ve been through some things similar to what you have experienced (including the emotional up and downs and the emotionally worn-out flat-line stall-outs), I know everybody is different and everybody comes at this cancer thing differently, so I’m never quite sure what to say . . . except “I’m pulling for you, praying for you.”

    (Of course, when I say, “I’ve been through” it, I’ll never really be “through” with cancer. It could come back tomorrow, odds are it probably will come back some day so I have to keep myself psyched up to face that possibility, and even if it never comes back, cancer has altered my body, my mind, and my life forever. But I’m still here, so maybe I’ll figure it all out tomorrow!)


  4. heidi
    Jun 25, 2014 @ 21:57:34

    Oh my goodness. We have so much in common! My husband was diagnosed with Crc at 37 in June 2012. He underwent 12 folfox and the cancer was back Oct 2013. He had 7 rounds of folfiri and just had a hipic done on may 16 at ctca at Midwestern regional hospital. It has been 6 weeks and he just had his scan today. Results tomorrow as well as the meeting with the oncoligist to see about future treatment. Ar also have 2 children- a 9 year old ans 20 month.
    you are such an inspiration!! I wish you the best of luck and will continue reading your bloc.
    Love – heidi


  5. Emma
    Sep 02, 2014 @ 03:15:11

    Dear Julie, I just wanted to say thank you for your amazing, raw, brutally honest and beautifully written blog sharing your journey. We live in the UK and got to hear about you from mutual friends. My husband is going through related experiences with an initial diagnosis of bowel cancer at 46 (stage IIIC), discovered last year during emergency surgery, (when I first read your blog) but which turned out to be appendix cancer. We are looking at HIPEC right now as a possible treatment option, after chemo didn’t work, so will be following your experiences with great interest. What a comfort, and how empowering it is to find others in similar circumstances. I wish you the very best of luck with your own treatments. With very best wishes to you and your family, Emma, Lincoln, UK


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