Dodging Those Cancer Bullets

Gimme Some Indestructible Gauntlets.

First of all, a word of profound thanks to all my cyber-peeps on Facebook and elsewhere for your understanding and concern yesterday. If love and good will can prevent cancer, then after yesterday, I’m set for life. As I sniffled my way through a few meltdowns, all your comments, messages and emails touched my heart and filled me with gratitude. And knowing that most of you have lived through this nonsense yourselves means a great deal. No one knows how it feels to hear the news of a cancer diagnosis like another person who’s heard it herself.

Many of you have already read of my recent adventures in colonoscopy. To recap briefly, I had scheduled my first, recommended over-fifty colonoscopy in 2008. Then I was diagnosed with breast cancer, so I postponed it. Just over two years later, in January of 2011, I finally rescheduled it. And despite following the prep instructions faithfully, the prep didn’t work completely, so the colonoscopy was not completed.

I scheduled another for a year after that, which took place a week and a half ago, on January 6th. So, I rang in the New Year by avoiding fiber and red food for a week, drinking a few gallons of Gatorade and Miralax for a few days, and off I went. The colonoscopy was completed this time, several polyps were removed, and the doctor said they all looked normal. But I woke up during the procedure, to find myself with severe abdominal cramping, somehow managed to mumble that I was awake and in pain, and got no help for it. Afterwards, I stumbled home, once again disillusioned with the inattentiveness of healthcare clinicians, feeling like I’d been kicked by a horse. I spent the next several days recovering and researching clinical protocols for managing procedural pain.

Last week, I called to find out if the path results were back on all the polyps that were removed. I got a call back from a very nice nurse case manager. Yes, the report was back, but she was out of the office, so she didn’t have it in front of her. But she assured me that I would have been called by then if there was anything suspicious. I explained that I’d already been through the cancer adventure, and that, as such, I hated waiting for path results. She said very kindly that she would check the report and call me back if there was bad news. And she didn’t call. I did have an appointment with the nurse practitioner at the gastroenterologist’s office anyway. So, feeling confident that there would be nothing more onerous at this visit than my feedback about the inadequate prep instructions beforehand and the inadequate pain relief during, I visited her yesterday.

Bad News, Good News

And she told me that one of the seven polyps removed turned out to have a top-dressing of carcinoma in-situ, and was characterized overall as something called ‘tubular adenoma with high-grade dysplasia.’ If you were to Google this, which of course I have, you would find that this is the non-invasive version of colon cancer.

That was the bad news. The good news was that the entire polyp, with its treacherous cancer cap, was removed, along with the stem, and that they got it all. Which makes it sound like a cancer mushroom. [There’s a fungus among us, as my father used to say.] And that no other treatment is needed at this time. Naturally, this means that I do not get to wait another ten years before my next colonoscopy. My next one will be scheduled one year from now.

So. Major gobsmack. It was an interesting sensation to experience a condensed version, as it were, of my previous cancer experience. Sort of like bad speed dating, or the Readers Digest Version of cancer. I felt all the shock & awe, panic, astonishment, relief, miserable awareness of implications, and grim acceptance of the need for lifelong vigilance, all in the space of several seconds. As one of my breast cancer pals succinctly put it, “YIKES!! And WHEW!” Quite a field day for my neurons and adrenal cortex, I must say. It’s amazing I could even speak at all after that.

But I did. And we talked about my maternal family’s cancer history. I brought it up. One of the things that drove me to persevere on this colonoscopy adventure, despite the almost fiendishly distracting circumstances of the last few years, was that my cousin died of colon cancer when she was in her fifties. There is some sort of suspected genetic relationship among breast cancer, ovarian cancer and colon cancer, all of which have appeared on my mother’s side of the family, along with melanoma, which killed my cousin’s dad. Thus, the NP and I visited the subject of genetic testing. It was a revisit for me. I saw a genetic counselor a year or so ago to investigate this, and since my rellies with the relevant cancers were all ‘secondary,’ i.e., first cousins and aunts, genetic testing was only a borderline recommendation. But I don’t have any ‘primary’ relatives who had cancer, no siblings, and my parents died of other things. So, it’s not clear that genetic testing would be beneficial. But the NP is going to look into it and get back to me.

I did somehow manage to articulate my feedback and suggestions. The next several minutes were almost more unpleasant than the preceding ones. But the long and short of it was that the NP, who is a very smart and compassionate woman by the way, could really offer no satisfactory explanation for why the doctor did not recommend that I be given more medication when I woke up. She did, however, assure me that in the future, there would be a separate anaesthesiologist in attendance who would mostly likely use a different moderate sedation cocktail and make sure my recent experience was not repeated.

“Kathi,” she said at the end, “I’m really glad you had this colonoscopy.”

“Me, too,” I admitted. What else could I possibly say? I’ll drink two gallons of Gatorade and Miralax every week if it keeps me from developing invasive colon cancer. And, as I said to one of my BFFs last night, I seem to have experienced every other miserable thing that could occur with a colonoscopy, so why not this, too? You know, just to round things out.

The Zero that isn’t.

So, I’ve had two types of cancer. And thus far survived. Yay me. It’s hard to describe what I feel.

I’ve had a few random thoughts about researching what other sorts of cancer can appear in non-invasive form, but I don’t have the heart for it right now. So far, I’ve had two kinds of high-grade, in-situ cancers that, if left unattended, would have had a good chance of worsening. To all those people out there in oncology-land who have been contemplating the idea of removing ‘carcinoma’ from the names of some of these in-situ tumors: don’t even go there. Because guess what? We’re not off the hook. Because any prudent discussion with your patients has to include the C word anyway. So, who do you think you’re kidding?

I wonder if there should be some sort of Stage Zero Cancer Club. Because I think I deserve honorary life-time membership now. And I think we should all get Wonder Woman’s Lasso of Truth to use during all our follow-up medical appointments. And we should probably consider a name change. “Stage Zero” just doesn’t quite cut it. Maybe “YIKES! WHEW!” would be more apt.

And I’d also like a pair of Wonder Woman’s Indestructible Bullet-Bashing Gauntlets while I’m at it. Because I’m not feeling very indestructible right now.


The “Wonder Woman” movie poster above was, of course, Photoshopped by moi. Please feel free to share your own “YIKES! WHEW!” experiences.

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This entry was written by Kathi, posted on Wednesday, January 18, 2012 at 02:01 pm, filed under Diagnosis, Recurrence, Screening and tagged , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

48 Responses to “Dodging Those Cancer Bullets”

  1. Kathi,

    I so repeat what I said yesterday: I thank you from the bottom of my heart for persevering on your colonoscopy. I’m so, so glad. I have a similar family history, and, as you know, multiple cancers between my brothers and me.

    But for today: I’m just celebrating the “whew” moment and your great message for anyone who has put this test off. Do it, I say to them, DO IT TODAY.

    Hugs,
    Jody

  2. One would think that as sneaky as cancer is, it would have known better then to mess with someone who has already once kicked it’s a**!!!! I for one am so glad this was caught, I can’t imagine a life with you in it! Much love and as usual, a great blog! Muah!!!!!

  3. I am so sorry that you had to go through this. I can’t even imagine. As a BC survivor, I remember the cancer diagnosis well.

    Be patient with yourself. You’ll probably need time to digest this.

  4. Well my love, I welcome you to “I survived fucking cancer TWICE” club.
    Rock on KK, love you to bits <3

  5. My grandmother’s death certificate lists “carcinoma of the rectum” as a contributing factor to her death, and my mom had diverticulosis, so I’ve long known this was an issue for me. My first tubular adenoma was removed in 2005 and in late 2010 another two were removed, just a few weeks before my DCIS diagnosis.

    The colonoscopy path reports don’t mention dysplasia or the lack of it, so what they found in my gut may be a little different from what was found in yours. But what the doc told me was that while a tubular adenoma is the highest grade of the non-cancerous polyps, it’s still non-cancer. I said, “sort of like if you have ADH in the breast, right?” And the doctor said, “Yes, great analogy.”

    As I said, I’ve long known this was an issue for me, and I remarked to the doc that I’ve always known I would die of colo-rectal cancer. She scowled. “There’s no reason that anyone who gets regular colonoscopies should die of colo-rectal cancer,” she replied.

    She says I should have my next colonoscopy 18 months after the last one, and if nothing nasty is found with that one I can go back to a 2 year schedule. She says that colon polyps morph slowly enough that anything suspicious can be caught and removed on that schedule.

    So maybe I should be worried about this, but I’m not. (I freely disclose, however, that I’m 100% normal — in that I’m not the slightest bit happy about more frequent colonoscopies.)

    I don’t know if this provides any additional info or perspective for you, but it’s my story and I’m sticking to it… ;^)

  6. PS: “Clinical, autopsical, and epidemiological studies provide evidence of adenoma-to-carcinoma progression. The mean age of adenoma diagnosis is 10 years earlier than with carcinoma, and progression to carcinoma takes a minimum of 4 years. Multiple sources have provided evidence for an adenoma-to-carcinoma progression: one third of operative specimens containing colon cancer contain one or more synchronous adenomas. The risk of colon cancer is increased with the number of adenomatous polyps. Adenomatous tissue is frequently found contiguous to frank carcinoma. Patients who refuse polypectomy for adenomas develop colon cancer at a rate of about 4% after 5 years and 14% after 10 years.”

    from http://emedicine.medscape.com/article/170283-overview#a0104

  7. Kathi, so scary to imagine what might have been. So happy for what is. There’s good news to be had, even if you, like me, are tired of having to find the good in things that “aren’t so bad.” You’re a super hero to me! You went and followed through with the procedure when so many others would and do, just blow it off. Love to you.

  8. I love you Kathi. <3

  9. O MY GOD. It wouldn’t be appropriate for me to slip the F word and change that opening to OMFG, would it? Yes, it would. I am sick to my stomach reading this but WHEW, Yikes will do for now. I am glad it’s OUT. I am definitely glad that you are done with this portion of the colon cancer program and I am horrified about what happened during the procedure. I had mine done in October. I, too, delayed mine because of BC but, I had a 3200.00 anesthesiologist (the insurance company paid me by accident so I saw the check that I signed over to them) who, apparently, was worth every penny.

    Yes, breast colon ovarian all go together. Somehow melanoma and pancreatic enter the picture, too. If I can find my BRCA recommendations (there was a time I was so organized……) I will share the info. I have no known mutations but both ARE mutated. Big waste of blood when you hear, “it may mean something, it could be nothing, we just don’t know WHAT it means” ….. which means, “act as if it’s the worst possible scenario. Yuk and Whew.

    Stage Zero….. I had a pissy blog post about that back in November when I was waiting for a colposcopy due to a bad pap when I ALREADY HAD MY CERVIX removed due to a prior issue. Here’s what was written in a NY Times article talking about how it just “sounds better” ….

    http://www.nytimes.com/2011/11/22/health/cancer-by-any-other-name-would-not-be-as-terrifying.html

    If the link doesn’t work, this is the highlight for me:

    “Cervical cancer specialists had better luck. In 1988, they changed the name of a sort of Stage 0 of the cervix. It had been called cervical carcinoma in situ. They renamed it cervical intraepithelial neoplasia, Grades 1 to 3, taking away the cancer connotation.”

    Oh Kathi, I am SO TIRED of people trying to repackage words so they SOUND better. Call it like you see it damn it. As one of my girlfriend’s always says (and with no pun given your situation)…

    YOU CAN’T SHINE SHIT.

    So Glad you are OK

    xoxox
    AnneMarie

  10. I have a bullet that it seems I can’t dodge, but I am always delighted to hear of those who do.

    Denis
    deniswright.blogspot.com

  11. Aw, Denis, just peeked at your blog. I’m sorry you are dealing with brain cancer. I will have to read more of your story. And of course we’re all subject to the same crap shoot anyway, and sooner or later, one of these bullets might nail me. So, I’m just living it while I can. What else can we do? Best to you.

  12. Oh, my! Thank you, everybody, for these great comments!!

    Jody, Stace, Colleen, Deb & Tara, I’m very happy to be a bullet-dodger today, believe you me. I’ve said it before, and I’ll say it again: my sheer cussedness & persistence has saved my butt more times than I can count, and quite literally in this case! In another life, maybe I was some kind of terrier…

    Sara, thank you. One thing you learn after having something like cancer is not to sweat the stuff you can’t change. For the next few days, I’m back to work, immersed in my patients’ problems, and glad I can still do my job.

    Gj, thank you so much for sharing your story!!! So, we’re in the same polyp club, eh? Hey, they can just keep taking those damn things outta there. Glad they grow slowly enough to give us a chance to outlast ’em!

    AnneMarie, I Heart you! You are so right, you can’t shine shit. Sooner or later, when they’re ‘splaining these things, they at least have to say they word ‘pre-cancerous’ so we’ll get why we need to have tests and to sacrifice pieces of tissue.

    Or, as my mother used to say, ‘Just call a spade a shovel, will ya?’

  13. “Yikes, whew” – barely covers it, yet says it all… Kathi – I’m so so glad you had that colonoscopy and let this be a lesson to all (cancer history or not) – get the test!! That polyp never has the potential to turn into full-blown invasive cancer, now that it’s been removed. And frequent surveillance with polyp removal is a highly effective form of colon cancer prevention. Invasive, yes. Inconvenient, yes. Painful, sometimes. But trust me as a surgeon, you’d rather have colonoscopies every so often than a colon cancer requiring a colostomy or worse. And many thanks to you for sharing your experiences – hopefully this will prompt someone, at least one person, to not put off screening any longer.

  14. Hell, yeah, Deanna! As I’ve oft said, at least I’m still here to bitch about it!!

  15. Kathi,

    I left you a private message on Facebook. All i can think is how proud i am of you in getting this test and being proactive. I know it sucks, but you did the right thing in getting the test.

    Wishing you as much peace as possible and for good health.

  16. Dear Kath…

    Thank you so much for sharing, love. I can’t begin to tell you how grateful I am for the voice that you put to this experience as it resonates with so many of us out here who love, send healing vibes, pray for and think of you daily.
    Deanna Attai says so much in her comment and I second her thoughts.
    Thanks for letting us be a part of your journey and for weaving you life, love and experience into ours… xoxo

  17. HOLY CRAP. <—I am so eloquent when the time calls for it, aren't I? Seriously, I'm so glad you had that colonoscopy. I am so glad you're okay. And, yeah–dude. You need to get yourself a set of gold bracelets–stat. You earned them.

  18. YIKES and PHEW!! I’m really glad you had that colonoscopy too. Love the wonder woman image too.

  19. Well, damn! I am so sorry about this news!!!
    Kath, I really want you to get the genetic testing or hereditary colon cancer. When I went to my genetic counselor and we found several distant relatives who died of “stomach” cancer, which was the all-purpose term for anything occurring in the abdomen, they immediately added the colon cancer screen to the BRCA. Apparently there are no coincidences between breast and colon (and prostate I found out later.)

    I am so glad they got it all. But you don’t need this! AND the procedure sounds dreadful. I had one done awake once from start to finish and it is terribly painful. It would be nice if a DOCTOR would speak to you and not an NP. Nothing against NPs, but this is cancer- you need an MD.

    Lots of love to you,
    g

  20. “If love and good will can prevent cancer, then after yesterday, I’m set for life” I love that line you use at the beginning of this heart-stopping post Kathi. Isn’t it wonderful to have this community to connect with!

  21. Well, I’m going to concentrate on the “good news” half here. It’s a lot to digest (sorry, poor word choice there perhaps?) so give yourself time to process through again…

    I know you will be a source of helpful information and inspiration to others in this as well. And I’ll take a pair of “Wonder Woman’s Indestructible Bullet-Bashing Gauntlets” too!

  22. I’m still in recovery-land from my DIEP and somehow missed this. I’m sorry you had to go through it again, but very glad to hear that you are doing well…hope you don’t mind if I add you to my blog roll, think you are doing an incredible service with your site.

    Thinking of you,
    ~Jen

  23. Oh Kathi!!!!!! Now is when my vocabulary becomes sailor like (no offence intended to any sailors who may be reading)………….and isn’t worth recording!

    Hugs galore.

  24. Wow. Just…wow. I’ll simply echo the many voices here and say that I am _so_ glad you had the procedure and that all your “mushrooms” have been snipped at the stem. Take care.

  25. Thank you, thank you, thank you, everyone! I can’t tell you how heartening it is to read all your comments. MWAH, MWAH, MWAH to you all!

    And believe me, on this blog, you are all welcome to pun shamelessly, curse baldly, snark with irony, and vent to your heart’s content. I certainly do! And if ever there was an occasion for all the above, it’s this one!!

    Jeez, huh?? I’m still a little stunned by this ‘close shave,’ I must admit. Catching my breath slowly…and glad I’m still here to catch it.

    xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

  26. Am just so thankful that you dodged those bullets and are here to be my friend. I love you girl

  27. Kathi,

    I feel your pain: Seems no sooner did I claw my way thru breast cancer treatment, then it was off to the rectal realm! My spouse pointed out that although we were a year early for our 1st colonoscopy, it made $$ sense to do it now since we’d already blown thru our health insurance deductible for the year. So begrudgingly I agreed. Naturally, his MD reported a “perfect colon”. Mine? Not so much. Had to wait a week for biopsy results on 2 polyps, one mushroomed shaped like you described. Now I’m supposed to get a flexible sigmoidoscopy in 6 months in addition to going in every 5 years instead of 10 for a regular colonoscopy. And the flex sig is typically NOT done with conscious sedation! Geez, I guess I qualify for membership in your club…..where’s the sign up sheet?!

  28. […] I am leaving you with a quote from the Accidental Amazon, who has been dodging those cancer bullets this week: If love and good will can prevent cancer, […]

  29. Thank God you had this colonoscopy!! I’ve never heard of a cancer described quite like that one. Because doctors found a polyp, my colonoscopies are more frequent. I’ve also come to, many times, during my last colonoscopy last summer. It was painful beyond description. At one point, I raised my head and said something like “Are you having trouble making right hand turns?”

    XOXOXO,
    Brenda

  30. LOL, Brenda!!! To tell you the truth, heaven only knows what I might have said myself!!

    Thanks, Jan. I’ve got some catching up to do myself. Those sneaky cancer cells sure cause no end of trouble, don’t they??

  31. Wow, Kathi! I’ve been out of the loop for so long reading my favorite bloggesses’ posts that I missed your latest saga. Thank God indeed for your having this colonoscopy when you did.

    I had my baseline at 50 and next year will have the ten-year follow-up. I’m not looking forward to it. I’d hoped that the prep would be easier than it was nine years ago, but I guess not. And I’m nervous about them finding something, since I have had breast cancer twice.

    I vote for the “YIKES! WHEW! name for your proposed support group. There needs to be something for these Stage Zero heroes, a group that does not dismiss them by saying they really don’t have cancer, so why are there whining.

    You have much love and support here from your extensive group of Internet friends. My thoughts and prayers go out to you.

    XOXO,
    Jan

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