Tag Archives: stage I

Headed in the Right Direction

27 Dec

Since we couldn’t get the answers we wanted from the doctors we visited, my mom called a doctor up at Memorial Sloan-Kettering in NYC. This guy basically wrote the book on head and neck cancers. He said that they have divided up his department, and he now only does thyroid cancers, but he advised us to take my dad to Moffitt. She decided it’d be convenient to take us both there. Since Moffitt is an NCI, I think they had an easier time communicating with my doctors back in Georgia, who also are part of an NCI. They had all of our scans pulled up on the computer already when we came in and everything.

So, yesterday we went to Moffitt, and my dad saw the head and neck surgeon who does these specific types of surgeries in his sleep. He only does this, and that’s it. From the MRI that my dad had, we know that the tumor left behind is actually 2.8 cm, not 1.5. This adds up to about 4.3 cm. This technically puts him at a stage T3. The surgeon scoped him and confirmed this. He also said that it invades the base of his tongue, and it’s right in front of his epiglottis. It’s not another tumor, it’s an extension of the original tumor. They think he has some microscopic disease going on in the lymph nodes, as the ones on the left side are slightly enlarged. He said he definitely would not suggest further re-excision or any more surgery, as this would cause permanent dysfunction to his speech and/or swallowing, and he would still have to get chemotherapy and radiation. Why do it if chemo and radiation could achieve the same results without the surgery? So, what he said was the protocol that they use is 7 weeks of radiation, with 5-FU and cisplatin on days 1, 22, and 43 of radiation simultaneously. They also do the PET scan while doing the radiation simulation to get better targeting. There was also a study being conducted by a radiation oncologist there comparing 2 cycles of this chemo to weekly chemo treatment with Erbitux all while doing the radiation. This trial is being done in HPV positive patients, and my dad is one of them, so it’s possible that he could qualify.

After meeting with him, the radiation oncologist was there, and said that he could meet with my dad. He wasn’t even supposed to be in that day, and they had no appointment with him, so this was very convenient. Now this guy has about 25 years of experience with specifically head and neck cancers, and a lot of experience with HPV positive tonsillar cancers, as he is conducting research on it. He said almost the same thing, but his treatment plan was a bit different. He suggested 6 weeks of radiation, with one day a week being doubled-up, as in radiation in the morning and the afternoon. He’s going to bring my dad’s case before the tumor board on Tuesday to see if he qualifies for the trial, as the tumor may be too large, there may be too much lymph node activity, and he also wants to see if he even needs chemotherapy. If he does, it would be cisplatin alone 3 times throughout the radiation. He’s going to have radiation simulation with the CT scan today and with the PET scan next week. He’ll have to have a dental appointment to make sure his teeth are ready to handle this radiation nonsense, and then he should be able to start about 2 to 3 weeks after that.

I met with a medical oncologist who does a few different kinds of metastatic cancers. He said that he would have done 2 more days of radiation for the bone mets. He thinks that would have been more effective in managing my pain. He also said that he would have chosen a different order, basically, for the medicines that I have been put on for the control of the tumor growth. He’s pleased that I’m on the Axitinib (Inlyta) now. He said that he would have taken out the whole right kidney, but it’s too late for that now. He does, however, want to consider trying Zanosar, but he’ll have to take this to his tumor board, which meets next Thursday (not the one today). It was a little discouraging listening to all the things he would have done differently, but that it’s too late to change. It makes me think that things could be a whole lot different right now had I gone to them in the first place or had I started out at an NCI at the very beginning of my treatment. It just seemed like a lot of coulda, woulda, shoulda during my appointment, but he said that he’s hopeful that the treatment I’m on now should give me the best chance for basically living as long as possible. He also gave me some tips for gaining back some of the weight I’ve lost, so I’m going to try those. He confirmed that what we’re doing now isn’t exactly standard, but it’s what he would try at this point. But he doesn’t like that my symptoms aren’t well controlled, so he’ll work with me to adjust the dosages in order to get them under control. Especially with the breakthrough pain and the nausea.

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We Just Want Answers!

19 Dec

So, here’s the situation. My dad’s pathology report showed a 1.5 cm tumor on the left tonsil. That was removed. Great. Then, he saw an ENT that scoped him through the nose, and did an MRI with and without contrast last Sunday, and said that there’s another tumor (or piece of tumor) still in there that’s about 2.8 cm. The cancer that is still in there is also invading the base of his tongue. This all adds up to 4.3 cm. That being said, that means that he’s probably a stage III, not the stage I or II we originally thought.

Not the news we wanted, however, this is a treatable cancer, and there’s still hope. There’s always hope. Sometimes hope is all there is..

SOOO, this same ENT wanted to do a radical neck dissection surgery to remove lymph nodes from the left side, along with the remaining tumor, and she wanted to get “clear margins of about 5-6 mm.” If she couldn’t do that, she would still remove the tumor, but the surgery would be less extensive. If she got the margins she wanted, she said she wouldn’t see the need for him to have chemotherapy or radiation. This sounds good, because chemotherapy and radiation suck, but we would probably want him to at least do radiation anyways. However, if she couldn’t get the margins she wanted, he would definitely need radiation, and possibly need chemotherapy (They usually use carboplatin, cisplatin, 5-FU, paclitaxel, docetaxel, cetuximab, and/or something of the like for this type). They put in a PEG tube early, as the treatment can cause mucositis, which would render him unable to eat.

My mom called some radiation specialists at UF’s Shand’s Hospital, and they said that the protocol for this type of cancer is not the neck dissection surgery, it is radiation alone. Radiation alone has the same cure rate as the neck dissection surgery, and is less invasive. The type of radiation used here is the usual external beam IMRT type of radiation, and not proton therapy. He would probably get somewhere between 50 and 70 Gys, 1.8-2 Gys a day, 5 days a week, for about 7 weeks. My mom was hoping for the possibility of proton therapy (they currently tend to use electrons) because there’s a reduced risk for secondary malignancies as a long-term side effect from the treatment.

This being said, we’re all a little confused as to what to do next, and we just want some answers. Three different doctors have said 3 different things, and it’s a bit overwhelming. Right now, my dad is doing okay. He just tires very easily and is sleeping a lot. His MRIs so far haven’t shown nodes, but they have shown a tumor in his brain. It’s unknown whether it’s an incidental finding or whether it’s related to the tonsillar squamous cell carcinoma. It appears to be benign, as it hasn’t grown between the 2 times they did MRIs with and without contrast on his brain. He still hasn’t gotten his PET scan, because the inflammation from his surgery could show a false positive, so he’ll be getting that in a few weeks.

Once we figure out all of this madness, he should be starting a treatment plan in earnest…obviously. I just hope that happens soon!

My surgery was yesterday morning, so my mom has been here with me. It ran longer than expected due to some complications, and I’m in a surprising amount of pain. I didn’t expect to be in this much pain, honestly. My vitals, liver enzymes, blood calcium, kidney function tests, and CBC results are ALL really crappy, too.

My mom hasn’t been sleeping recently, so I asked if she was okay, and to really be honest with me. She, understandably, feels the need to hold it together for all of us, but that leaves her holding everything inside. So, I told her to just be honest and let it all out. She started to cry and told me she was distressed, so we just held each other for a while and had a crying session. She wants me and my dad to be with her forever. She’s also scared because my brother wants to go into the Marines and then become a police officer. She’s legitimately afraid that she will outlive all of us. This thought has occurred to me before, but I’ve tried not to let it linger. It just shook me when she actually expressed it. I asked if she had anyone to talk to that she could just be honest with, someone that could listen to her and she didn’t have to pretend that she was always okay, and she said that she did. I know she wouldn’t be this open with me on a regular basis, so I had to make sure she had someone to cry with if she needed to. I’m getting her a gift certificate for a massage for Christmas, don’t tell! We’re a mess.