• Another Disappointing Day

    Filed under Health
    Nov 22

    Well, I guess they can’t all be bright and shiny, eh?

    I had my appointment with Dr. Marshall this afternoon. He’s a world class type specialist on colon cancer at Georgetown University Hospital. His view is that I have a (rare) form of colon cancer “that is not going to go away”. He said this is the hardest thing he had to say to me. In his opinion, it’s not going away.

    Then we talked a lot about how my cancer is more aggressive than the typical Pseudomyxoma Peritonei, but is not behaving like the usual colon cancer.

    Let me back up a little here for the benefit of people who haven’t been following along on this whole deal. Five years ago I had a large villous adenoma (a kind of polyp) removed from my colon. It was “dysplastic” but was removed with clean margins and all the lymph nodes they sampled were clean, so it wasn’t called a cancer and I didn’t receive any “cancer treatment” (chemo, whatever) afterwards. In the intervening five years, some cells that escaped during that surgery set up shop in my peritoneum (basically the whole area below the bottom of the rib cage) and have been growing in various abnormal ways. Some of them have formed tumors — one is on my liver and there are at least a couple in what’s left of my omentum (a layer of tissue that covers the peritoneum). Some of the other cells have just formed gelatinous goo that’s sort of sloshing around in my peritoneum. (The goo is typical of Pseudomyxoma Peritonei.)

    Dr. Marshall’s view is that since this is a kind of metastasis from what was originally a colon tumor (though relatively benign), what I’ve got is a form of metastatic colon cancer. He views Pseudomyxoma Peritonei as being only the kind that is slow-growing and (apparently) of appendiceal origin. So… he’s kind of a purist when it comes to terminology. Some other doctors would refer to my condition as being a rare form of Pseudomyxoma Peritonei of an “intermediate” grade that’s a bit more aggressive but still isn’t full-blown “signet ring cell” cancer. PMP is rare and there’s still a good deal of controversy over how to describe it and what is or isn’t actually PMP.

    I guess it doesn’t really matter. Dr. Marshall has a clear understanding of the source of my condition and if he wants to call it colon cancer, it doesn’t really change much other than perhaps make the whole thing a little scarier. I should add that even though he said “it’s not going away” he did at one point make reference to having cytoreduction surgery with HIPEC as “potentially curative”. Of course, I chimed in at that point: “That’s what I want obviously. To be cured.” To be honest, though, my impression is that he doesn’t have a lot of faith in HIPEC as a curative treatment. We all need to keep in mind, though, that Dr. M. is an oncologist who treats cancer with chemotherapy. He doesn’t do surgery. So his tendency would be to see cancer problems through the eyes of someone whose set of tools consist of chemo drugs. A surgeon sees problems with his own frame of reference. Between my two specialist doctors — Dr. Marshall and Dr. Esquivel (the surgeon) — I think I’m going to get the best ongoing treatment for my problem, whatever you want to call it.

    Anyway, on to his recommendation: Dr. Marshall thinks I should have 3 or 4 more rounds of chemo — my current FOLFIRI with Avastin regimen — and then have another CT scan to see whether the new drug is having any effect on my tumors. Oh… I should add here that I now also have a better understanding (and acceptance) of why they’re wanting to do more chemo instead of just diving in with another surgery. Apparently, there’s no way of telling with a CT scan whether my tumors are just clumps of goo on the surface of my organs (liver in particular) or are actually “digging in” and getting nourishment from my blood supply. That I had no tumor shrinkage from the FOLFOX chemo “suggests” that they may not be getting blood (which is good), but the doctors want to be sure and if they ARE getting blood, they want to find a chemo regimen that will shrink the tumors and make them easier to remove. Okay, so… that’s that. So, after the next CT scan (which will be in about 6 weeks), a decision will be made (again) whether to continue chemo with another drug, continue chemo with more of the same drug (assuming results show that it’s working), OR move forward with another cytoreduction surgery — this time with the HIPEC. (Heated intraperitoneal chemotherapy that’s done during the surgery, for those of you new to this saga.) Several factors will come into play. Are the tumors growing or shrinking? If they’re growing, is it fast? Are they starting to impinge on the functioning of any of my organs in a serious sort of way? Would it be dangerous to put off surgery?

    Another thing Dr. Marshall talked about was the possibility of getting into clinical trials with other drugs. Again, it all kinda depends. Also he mentioned the possibility of sometime down the road having a special blood test to find out whether I’ve got a certain genetic mutation that increases the likelihood of colon cancer. He brought it up because several of my paternal relatives have died of colon cancer. If I’ve got this mutation, it would then be wise for, say, my nieces and nephews to also be tested so they could have a “heads up” on the statistical possibilities.

    He also talked about the possibility of continuing on chemotherapy (something I’d get every day, presumably a pill of some kind that he said is well-tolerated) even after crs/HIPEC just to help insure against additional tumor growth. Like I hinted earlier, I don’t think he’s got a lot of faith in HIPEC. But…hey… it’s not one of the tools he specializes in.

    So, I think that was pretty much it.

    I was hoping I’d see him and he’d say, “Oh, heck yeah! You don’t need to be on systemic chemo! You need to have another surgery ASAP and this time with HIPEC! That’ll fix you up!” Sigh…probably unrealistic. So, I’m disappointed and kinda bummed by his less-than-rosy prognosis. I still think I’ve got a reasonably good chance of beating this, though, and that’s the position I’m taking as I move forward with it.

7 Responses to “Another Disappointing Day”

  1. Well. That’s not the brightest news, now is it? Damn. Damnfuckingcanceralltohell!

    Now – let me say this: I am AMAZED at your ability to not only understand what these specialists are telling you, but to be able to explain it so that I understand what they’re telling you (sort of). I would be a blithering idiot by this point and so confused I wouldn’t know my peritoneum from my asshole! You are doing a STELLAR job at being your own best advocate – a true “must” in your situation. Kudos to you for that. I must also say: I am truly AMAZED at your outlook. At the end, when you said, “I still think I’ve got a reasonably good chance of beating this, though, and that’s the position I’m taking as I move forward with it.” An attitude like that is half the battle in this fight for your life and it’s one you’ve GOT to stick with.

    As you know, my thoughts and +++VIBES+++VIBES+++VIBES are always with you. Chin up. Fight on. I love you!
    Jodie

  2. Did he happen to mention which mutation he’s looking for? Because, well, you know what I do, and you know that I’ve got more insight on this area than most people, to say nothing of the fact that I’m one of those nieces who may need to keep an eye out.

  3. He did, but I don’t remember what it was. Sorry! I can email him to find out, if you’d like.

  4. No biggie. I talked to my boss and we’re going to run your DNA once we’ve validated our oncogene assay (until then, the data we pull off the chip won’t be very informative). I don’t know if any of these ring a bell, but the assay will sequence APC1, BRCA1, BRCA2, CDKN2A, KRAS, MLH1, MSH2, MSH6, MUTYH, PTEN, and P53. If the mutation he’s concerned about is in one of those genes, we should be able to see it.

  5. Everything that Jodie said…you always were one to grab the the bull by the horns, glad to see that hasn’t changed. If anyone can beat this, Becky, YOU can!!! I’ll bet your docs have to study and take notes when they know they are going to be seeing you :)

  6. Leah is way ahead of anything I know about but there is something called Lynch Syndrome that involves a genetic predisposition to colon and reproductive organ cancers. I know a family with that going on and they have been tested to see who has/has not the gene.
    Have been reluctant to say anything about my deal given it so pales in relation to yours: I finally went in and had the colonoscopy screening a couple weeks ago. Snipped out 2 polyps and told me that, like 50% of all folks my age, have diverticulosis. No big deal, although still haven’t gotten anything on the biopsy, but I have had a low “gut” ache ever since. No problems beforehand.
    Actually much better with the antibiotics which make me really nauseous. Bet you are thinking “tell me about it!”. What bothers me is just before it is time to take another antibiotic, the region begins to hurt a week in on the antibiotics. I guess my next move will be to tell them this and get a CT scan. That was the next step.
    I have Googled around on this but everything says the same which is not helpful.
    Just when I say to myself-”never have a Colonoscopy!!”-I think of your journey.
    You are an amazingly intelligent patient (person) but you really have get involved, don’t you? I am so reticent when it comes to medical, believe it or not :-)
    Hope you are feeling well and can enjoy the wonderful meal you described on FB. Guess it is good that Thanksgiving stuff is about as low fiber as it gets!
    lvu

  7. Yes, Anne, you should definitely mention the abdominal pain. Maybe it’s just slow healing from where they removed the polyps, but it’s best to be sure. You really do have to be proactive about your health — learn everything you can about your condition (if you have a condition) and report changes to your doctor. On the topic of Thanksgiving, I’m happy to say that my sense of taste and appetite have both returned somewhat with this new chemo I’m on. Yay! So, I’m looking forward to tomorrow. A little bit of each of the things I like. :-)

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