Yet another Doper checking in with warm and encouraging thoughts. Please keep us posted.
(((emilyforce))) I’ve been lurking on this thread and am sorry to hear about your diagnosis. Though it is a great thing that you took it upon yourself to have it looked into further! Now you can begin working through the healing process.
Hi Emily,
Have you been able to eat a little bit more today?
Tenar: not at all offended, and actually rather cheered up by that. Thank you!
olivesmarch4th: well, hrrmph. I suppose that’s OK. (surreptitiously returns hugs)
**
CairoCarol**, OhFace, and many others: thank you.
purple haze: yes! Yesterday I had toast, delicious toast! Toast made in the toaster set on “pale” instead of “crunchy” so it was nice and tender, and smothered in garlic-thyme butter to make it softer still. Then, mr emilyforce gave me some whole-wheat linguine with tomato, tofu, and broccoli sauce. Today, because he is divine, he made me poached eggs with cheddar on (tender) toast for breakfast. I even had some COFFEE. Oh, it is good.
I just got around to reading this thread. Belated best wishes are speeding your way!
Tomorrow we go down to Boston to hear about treatment plans. Monday I had PET and CT scans and many blood tests done; tomorrow we find out what they tell us about staging my new cancer. The appointment was originally supposed to be not until this Monday, but my main doctor’s office called this afternoon and asked to move it up. Yay!
So.[ul][li]Definitely tongue surgery to get rid of the tongue owie (tumor) though it’s not sure how big the tumor really is, yet; could be a small chunk, merely making my tongue asymmetrical, or it could be half or more, necessitating reconstruction using tissue from arms or legs or something, with attendant speech therapy and getting-used-to-weirdness. [/li][li]Maybe-probably neck surgery, to get affected lymph nodes, necessitating shoulder (or etc.) physical therapy. [/li][li]Maybe-possibly radiation therapy, to whomp all of the above’s sites and make sure the cancer stays the hell away. [/li][li]Maybe-but-unlikely chemo to do more of the same.[/li][/ul]Complicating matters: I had radiation therapy on some of my neck and chest as part of treating Hodgkin’s, and it turns out you shouldn’t ever get radiation therapy twice on the same spot. So I need my old Hodgkin’s medical records sent to my new docs. But those old records are just old enough to be, now, in deep storage at my old medical facilities, and getting them out is turning out to involve much paperwork (bleah).
mr emilyforce is going with me, so that he can meet my new cool doctors, but he is very very fretful. ***CANCER ***(the spectre) scares him more fundamentally than it does me, I think: his mother died in her 50s of breast cancer, and he was almost all she had left family-wise, though he was in a rebellious stage at the time and still feels guilty he didn’t do more for her. Though I personally think he did all he could do. I wasn’t there, though, and so don’t have the authority to console him that I wish I had. And then he and I had not been together long when I got diagnosed with Hodgkin’s… the outcome of that was good, and he was fantastic all through my treatment, but it’s an echo, if that makes sense.
I hope he and I can both get some sleep tonight.
Please wish us luck, and I’ll update when I have something to update with.
Wishing you the best of results, a fast recovery, and some peace.
Wow. My heart and thoughts and well wishes go out to you. I hope your treatment needs are minimal. Please keep us updated.
I hope all goes well for you. And please check your private messages for the name of the oral surgeon I previously mentioned.
Oh, that is too bad. I was hoping for better news. I wish you better luck with as less worse news as possible.
emilyforce, I used to work for a Head & Neck Surgery practice which specialized in these sorts of cancers, so I have a fair bit of knowledge, even though I’m not a medical practitioner. If you want to email me, please feel free so we can discuss questions offline if you have any.
In any case, I’m sending good thoughts! 
No fun! I am told by those I know who have been through it that radiation is easier than chemo.
Sending more good thoughts your way.
Also sorry to hear about this, emilyforce!
As to chemo – you might want to ask your doctor about Erbitux (generic name: cetuximab). My mother, who has skin cancer in her ear, is using it. The drug works best on tumors with a high epidermal growth factor receptor (EGFR) level. There is a test that can be done on a biopsy sample to determine the EGFR level. My mother’s tumor had a high EGFR level, so she has been on Erbitux for a couple months now. The side effects are extremely mild – mostly just a bit of a rash and an itchy scalp.
If you want to look into it on your own, google something like “Erbitux oral cancer” or “Erbitux head and neck cancer.”
IMNAD, but thought I would pass this on.
Best of luck! I am glad you have such great IRL support from mr emilyforce, and that you are willing to share your experience here.
Thank you, y’all!
Update: I got in early for my scan results – last Friday – and was offered the opportunity to go ahead with surgery Monday (2/2), which I’m taking.
Results:** the news was about as good as it could be** short of “Oops, our bad, you don’t have cancer after all.” Tumor is small enough to be considered Stage I. No apparent metastasis at all.
Plan: Surgery to remove tongue tumor. Neck surgery to remove, prophylactically, the handful of nearest lymph nodes, even though they are “clinically negative,” or don’t *appear *to have any cancer in them, just in case there are tiny undetectable metastases hiding there. Much recent research supports this approach for cases precisely like mine. No radiation planned unless cancer cells are actually found in the lymph nodes they remove. No chemo planned.
The tumor itself is the size of a coffee bean. The chunk of tongue to be removed, to be completely safe, will be more the size of a garlic clove (hi, Lib!) When this heals, it will most likely be annoying for a while and might mean I need to sort of relearn how to swallow, but I’ll probably handle that, and speaking, with little trouble. My singing voice will probably not be affected significantly (or maybe at all). The neck surgery should have no side effects; there’s a very small chance I’ll have minor nerve damage and need to work on shoulder motion or something later.
Expected recovery: I’ll be 3-7 days in the hospital and in a world of hurt for a while after that. I’ll heal. I have great insurance and a good short-term medical leave policy at work. My dad, then my sister, then my mom, are coming from the West to visit in shifts and help mr emilyforce cope, nurse, vent, etc. Nearby friends are lining up to help, too.
It is very very good!
Woohoo! That sounds like good news indeed. Here’s more wishes for a speedy recovery!
Good luck with the surgery! Sending healing thoughts your way.
i hope all goes well with the surgery and the clove size chunk contains all the bad cells.
hopefully everything will heal up well and quickly.
please let us know if your tongue sees its shadow.
I’m glad that the news is good. The doctor’s office will probably arrange for you to meet with a speech therapist after the surgery. They can help with any swallowing issues.