Today’s cancer-related word of the day: scanxiety. It’s the gnawing worry one feels when one is waiting for an upcoming CT scan and suffering through the long agonizing wait for results. It sucks. And yes, it is a thing. It’s a thing I’m dealing with now.
(Disclaimer – I swear I really am not a neurotic nutbag who thinks she’s constantly on the verge of death. This blog was started as a way for me to share my journey with other cervical cancer patients and for me to empty out the words that build up in my head on occasion. I promise, I am not running about willy-nilly 24/7 convinced that the sky is falling. But the fears that sneak up on me…those I need to get out of my head. What’s the old saying? A problem shared is a problem halved? Or some such nonsense? So consider it me sharing and you taking a portion of it from me. You’re welcome. Just wait until this cancer-thing is behind me and I start pouring out the rest of my neuroses. Mwah hah hah!)
Tomorrow we make the long drive back to UCLA for more CT scans. Pelvic and abdominal, with and without contrast. Then we make the long quiet drive home to wait a week or two for the results. As I’ve said before, the worst part of this whole thing is all of the waiting for test results. I wish they were instant. But instead, we have to wait on the experts to examine all of the snazzy little black and white images of my innards and hope they don’t see any new tumors or spots. Then again, who knows – maybe the whole point of the long wait is to purposefully give your mind time to explore all of the possibilities – as awful as they may be. To wrap your head around the what ifs. To run through all of the scenarios. That’s a new thought – I may have to explore that one some more and let that idea roll around my brain for a bit. Hmm.
At this point, I have been in remission/NED for almost 10 months. The ‘normal’ recurrence time frame for ‘normal’ cervical cancer, if it happens, is around 1.5 – 2 years post-treatment. Too bad I’m not normal. I won the odds lottery with a rare sub-set of an uncommon cancer, aka adenosquamous carcinoma, and it likes to come back and visit a lot faster – usually in half the time as ‘normal’ cervical cancer. I think the average is 9 months or so after treatment. I’ve been having some weird and worsening pains in my upper abdomen, hips and pelvis for a few months now. It started as random stabs of pain and has slowly become constant with random extra stabs of pain that take my breath away. I do not like it and I am not amused. Hence the reason for the new scans.
There are, of course, a multitude of other reasons that could, and probably do, explain the new pains. It could simply be adhesions from the surgery – that’s where as you heal inside, things kind of stick together and stay that way via the magic of healing and scar tissue. It could be that my hernias that I had repaired 10+ years ago have re-herniated and need to be repaired again. It could be that I have the new trendy gluten intolerance and it’s messing with my stomach and intestines. It could be that I have an ulcer. It could be that I’m just getting old. It could be any of a thousand things. Or it could be that my cancer missed me and wanted to come hang out again. Because you know, that bitch just can’t take a hint.
As I’ve been poking around the interwebs trying to edumacate myself and see if there are any new advances/breakthroughs in cancer research, one of the truly frustrating things is a lack of information. (What?!?!? A lack of information on the internet? Impossible! But true.) There are two main types of cervical cancer and most research dollars are logically spent on them. Unless you have squamous cell carcinoma (75-80% of all cervical cancers) or the less common adenocarcinoma (20-25% of all cervical cancers), you’re kind of out of luck as far as research goes. If you have either of those types of cancer, you can rest assured that there have been hundreds or thousands of studies done on your cancer and that the common characteristics are largely agreed upon. The less common cervical cancers that COMBINED make up about 5% of all cervical cancers – clear cell, glassy cell, small cell and adenosquamous carcinomas among quite a few others – have scant available information. (Hell, even my spell check doesn’t recognize adenosquamous as a word.) I usually just find a short blurb under the heading of ‘Other Rare Cervical Cancers’ in scientific journals and books. ‘Hey, here’s some other cancers that we don’t see very often so we don’t bother researching. We don’t know much about them, so good luck’ is the vibe I get there. Awesome. I really hope that UCLA is using my info for a study or research or something. It would be nice to contribute in some way that might lead to someone further down the road finding useful information on this cancer. Because the info that is out there SUCKS!
**Warning – the following paragraph is a lot of contradictory statistics and pessimistic snarling. Feel free to skip over it while I get some depressing crap out of my head. Thanks.** It is incredibly frustrating to read contradictory studies that vary so widely in their results. In the past 10 months or so, I’ve read that at stage 1B, my cancer (and no, I’m still not used to typing ‘my cancer’) has a 10-15% recurrence rate. And that it has a 70% recurrence rate. That it has an 85% 5-year survival rate. And that it has a 27% 5-year survival rate. That it’s highly aggressive. And that it’s no more aggressive than any other cervical cancer. That it has a poor prognosis. And that it has a similar prognosis to ‘normal’ cervical cancer. And then there’s my personal favorite that I learned today – one medical textbook reported that the 5-year survival rate in stage 1B patients whose biopsies showed lymphatic invasion is 69%. If there is blood vessel invasion, then it’s around 30%. Fun stuff, huh? Guess who had angio-lymphatic invasion? (‘Angio’ refers to blood vessels for those of you who skipped anatomy.) Turns out having early-stage cancer is good (‘good’ as in treatable. Not ‘good’ as in yay cancer!). But having early-stage cancer with tiny cancer cells floating throughout your lymphatic/circulatory system is bad. Doctors are understandably hesitant to be throwing chemo and radiation at every patient with early-stage cancer, but it turns out that can actually be a bad thing. Surgery without chemo/rad as a follow up is largely the norm for stage 1, but can leave the possibility open to one of those tiny floaty cancer cells finding a new home somewhere else and sneakily taking up residence without anyone noticing. Multiple studies have shown that in later stage cancers (2, 3 and 4), that same finding simply isn’t a factor. That microscopic invasion makes zero difference unless you’re stage 1. Whee hoo! So glad THAT’S the one thing multiple studies agree on. *eyeroll* **Annnnnnd end snarly depressing cancer rant**
So yeah. CT scan tomorrow. I’m feeling a little better about it after rambling through today’s blog. I just have to keep reminding myself that one groovy thing I’ve got going for me is that I know I’m not a number or a statistic. So here’s to being like all the normal ladies with normal cancers and continuing to be cancer-free. I guess we’ll find out soon. Just not soon enough for my liking.
Wishing you lots of luck, hope there’s no bad news x
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I just finished reading your entire saga from start to finish after finally stumbling on it after my 417th google search of lymphadenectomy. As you pointed out in an early entry, there is a startling lack of information about cervical cancer on the interwebs. I was thrilled to come across your story and read about someone who has feelings similar to mine about the whole stupid thing. I hope you are well and disease free. All the best to you.
Hi, my daughter who is 25 is going through the same thing, diagnosed with andenosquamous carcinoma. ( the rare form) Rad hyst with lymph node removal. Chemo and rad. Would love to see how you are doing! Hope you are doing well. We know exactly what you are going though. Love to hear an update! Jen
Hi, my daughter was diagnosed with the same rare form andenosquamous carcinoma. She is 25. We are post surgery and chemo and rad. Would love to know how you are doing! We know what you are going through. Hope we can connect. Jen
Hi Jen! I’m still alive and kicking – just been extraordinarily busy with work and travel. I’ve got another checkup in a couple of weeks, and will probably be writing a little something soon for the blog. I hope your daughter is recovering well from her surgery – it’s a lot tougher than people think, both physically and emotionally. Please let me know if she (or you!) have any questions or need to talk. I’m no good with chemo/rads questions, as we chose against it, but I’m happy to help with what I can. There’s not a lot of us adenosquamous ladies around. ~Sam
It’s Jen, back again. My daughter has thyroid cancer too
So, we have been through that removal. UGG. I do want to ask some questions when you have the time. My daughter’s case was severe and we can only hope chemo and radiation did the trick. I am not sure how to exchange numbers or emails?
That’s great, glad you are doing well! I actually didn’t do any research on andenosquamous until my daughter was almost finished with chemo and rad. I swear the rad is the worst….lots of bowel issues for a 25 year old who could normally eat a garbage can and have no problem lol. I am so glad I found your blog. The recent research has put a damper on my spirits. By the way, We are going to the docs at USC. I would like to ask you some questions when you have some time, maybe after the holiday. Thanks again for the response. Jen
Hi Jen! Sorry I didn’t reply sooner, but I wanted to let you know I would be more than happy to answer questions for you. I hope your daughter is doing well and that she gets through the chemo and rad as soon as possible!