Hello, i've been lurking on this site for 6 months gathering info for my sister. She was diagnosed scc bot cancer and is set for surgery end of this month. I guessing its a pretty brutal surgery which includes partialremoval of tongue and rebuild from forearm. Neck disection,peg,trach etc. and then
chemo and rad. My question is after she's released from surgery, what kind of care will she need? 24 hour? She will be moving in with my mother and we have a room set up for her, but just curious of the unkown. thanks for any insight.

Welcome to OCF! Glad to see you have made yourself known and started posting.

If your sister has been waiting for surgery for 6 months, the cancer could have changed quite alot since she was originally diagnosed. Im hoping your sister is being treated at a CCC. There she would have a whole team of experts all working together on her individual case making a treatment plan that is designed just for her while following NCI guidelines. Will she be having rads? Im hoping she already has a speech pathologist lined up.

Its very difficult to answer your question of what to expect. Every patient will respond in their own unique way to a major surgery. So much depends on details like how large the tumor is, if it has any lymph nodes involved, her age and general health, etc. Some patients will sail right thru and be hospitalized for about a week and a few weeks after surgery they are doing very well. Others will take longer to adapt and being to heel. I can tell you that swelling can be significant and take week to go down, it could be months before it is completely gone.

The surgery will probably be a very long one. She should have someone with her while she is in the hospital as it is very difficult for someone in this situation when they first wake up from surgery and arent able to communicate. Having a dry erase board will be a big help.

Ask for a possey muir valve trach. This is VERY important in making it easy for her to speak while having a trach. Tell her surgeon and the nurses, then again when she is at the hospital make certain everyone knows she requires this. I had it and it really made things much easier.

Wishing your sister all the very best with her upcoming procedure.

Ditto what Christine said. 6 MOS???? that's crazy... this is cancer (and an advance one - Stage 4), not a torn ligament. Usually it's a 6 week waiting period from dx to treatment (2 months max). At this point what is done is done but that's an inordinate amount of time for what can be a very aggressive cancer. Based on your explanation of the surgery etc. I have to wonder if it is a BOT cancer or an oral tongue cancer. BOT is traditionally treated with radiation and chemotherapy as a primary treatment. Normally they don't operate on HPV+ Base of tongue cancer unless it's very very involved and then it might only to be to debulk it, with the intent to go on and do radiation and chemo. (Base of tongue cancer is actually located in the throat area)

This sounds more like non HPV related oral tongue cancer - (the treatment she is receiving is the standard for this type of cancer NOT BOT) which is usually characterized by a lesion, or tumor under or at the side of the tongue within the oral cavity. Which is what I had. My surgery involved removal of the tumor, that area of my tongue rebuilt, a trache, 40 lymph nodes removed etc... If this is the case the wait time is even more scary because this cancer is very aggressive and could definitely have changed and spread in the 6 months. Hopefully she has had a very recent ct/PET/MRI since working off an old scan means they don't have a clear picture of where the cancer is now.

Forgive me if she's been having chemo - there is an induction chemo regiment that some people undergo prior to surgery and / or rads. If this is the case then the wait would make more sense since she was actually being treated.

As for the surgery, surprisingly, it's not too bad and a quicker recovery than radiation and chemo. (radiation is actually the worst) If they are keeping her in the standard 10-14 days. She should be okay going home on soft foods. I was out in 10 days and eating pretty well at the 20 day mark ( I went on a one week vacation to mexico to recover). I was perfectly independent once they removed my trache at day 4. Bathing etc... on my own.. though I looked horrendous - black eye, swollen face and tongue. Staples, stitches etc.. There was minimal pain as my face and neck were numb on the operative side. She should have someone around but 24 hour care. NO. She should be self-sufficient by the time she leaves the hospital. May need help with dressings etc.. and may have shoulder mobility issues and will need physio at some point because of the neck dissection.

Is she being treated at a CCC? Is hers an HPV+ BOT cancer or an Oral tongue cancer? She's waited so long for this I would hesitate to look for a second opinion or change locations of treatment but the wait and the treatment make me wonder...

Erbitux, originally used for colorectal cancer, was found to be ineffective in 40 percent of the patients due to a mutated KRAS gene. For colorectal, they now do a biomerker marker test before using to see if a person has the mutated gene or wild type (normal) KRAS gene, which seems Erbitux works with, and even insurance can deny use based on mutation. They do not do the biomarker for Head and Neck Cancer, and say, and I was told, it doesn't apply for HNC. Charm had ascertained Erbitux did not work in 5% of HNC. Also interesting is a large percentage of the mutations appear to be in the Southern belt area. I read one suggestion having to do with sun exposure, but haven't read further about that.

Thanks for your responses. I will make a note of that specific trach & the white board is an excellent idea. I believe they will remove the trach before she comes home. I'm sorry i didn't provide much info earlier. When she was first diagnosed and met with the surgeon, the whole procedure took her off guard and she didn't think she could live with the outcome. She sought a second opinion with a local cancer doctor who immediately started her on chemo that she took once every 4 weeks. The chemo closed up the tumor and she would feel great for about 3 weeks until the next chemo. She was to start rad ,but the doctor who read her pet scan, told her that tumor wasn't shrinking and she we'll need the surgery if she wanted to have any hope. She's not being treated a cc, and she having her surgery at Vanderbilt a DR Sinard? I think. The good news is she wants to live now, but she is frightned that she'll be disfigured and her quality of life will be horrible. She does realize now, that at least with the surgery she has a chance to
survive and if she's going to be in pain it might as well be on her road to recovery.

Cheryl, sounds like her surgery will be similar to yours. She does have a legion or tumor underneath her tongue. And the preocedure you descibed seems to be to par with what she will be going through next week. I'm trying to type this at work, plus do my job at same time, so I know i'm not being very complete.
My sister would love to recover in Mexico,she used to make yearly
trips until her husband passed. thanks again for your insight.

I think I posted my response on the wrong post .)

Sister made it through surgery. I believe they had to take more of the tongue than originally thought. I saw her in ICU and she just looked at me with tears coming down her face, like she was saying what the hell did they just do to me. 2nd day they have her moving around a little bit. I was relieved that at least her outward appearance wasn't all that bad. I think she'll be in ICU for several more days. we are using the whiteboard quite a bit and also texting.

Its not easy when first coming out of this type of surgery. Make sure they keep her pain under control.

Best wishes to your sister with a speedy recovery!

Hi, Music
Vanderbilt is an excellent hospital. Glad your sister is recovering from the surgery. Remember to take good care of yourself so you can help your sister.
Maria