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Which radiation treatment is best for SCC tongue base tumors and lymph nodes in neck?

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Hello again, I just had my surgery 2 weeks ago as am awaiting MD recommendation for the plan of care but imagine it will possibly  be rad/chemo.  We have IMRT, and TOMO nearby (within 1 hour) where I live.  Any experiences with TOMO or IMRT or Proton therapy?  I am T-1 N-1 M-0 and HPV16 +.  Newbee on this site.

Laralyn's picture
Laralyn
Posts: 433
Joined: Apr 2012

Welcome to the site! :-)

I had HPV+ Stg IV in my left tonsil, one lymph node, and soft palate. It's an interesting question! From my perspective, the answer has two parts.

Part 1 is about the technology. I asked my radiation oncologist (Dr. Deepak Khuntia) about Tomotherapy before I started, because from what I had read, it was superior to IMRT in its targeting--which helps avoid salivary glands. My doctor said the only Tomotherapy machine in the area was about 60 minutes away (in good traffic... and traffic in the SF area is rarely good). He said he did think Tomotherapy was better technology and that in fact he spoke on behalf of the company that invented it because he believed in it. The hospital where he practiced, however, only had IMRT (but new equipment). He said that the location and size of my cancer meant he could take the time and map it well, and get similar results with IMRT as he believed I would get from Tomotherapy. 

Part 2 is about the people. You need to have a trusting relationship with the people treating you, and you want the best you can get. Dr. Khuntia was one of the few head and neck cancer specialists in the bay area. When I asked him about getting a second opinion, he said the only other radiation oncologist he would recommend for H&N was Dr. Le at Stanford (head of the radiation oncology department, and also a H&N specialist). I did research on Dr. Khuntia and it looked like he was excellent. I also liked the facility and the rest of the staff. It was also close to home (20 minutes). Based on all of that, I decided to be treated by Dr. Khuntia and have IMRT.

So I would look at both of those elements. Get a second opinion from both facilities and research the doctors. The technology matters, but so do the people. For the last 2 weeks of treatment and checkups for a few weeks afterward, a shorter drive can feel like such a relief, too, so you I would consider that as a minor factor as well.

As a side note, Dr. Khuntia left practice shortly after completing my treatment... to become the VP of Medical Affairs for Varian, the company that makes Tomotherapy machines! So he put his money where his mouth is--and that makes me believe even more that it's a superior technology.

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Thank you for your insight.  I suspected I would need to make this choice soon and last night got the word from my surgeon that the lymph node had extrascapsular involvement so I will need chemo/radiation.  There is a TOMO place about an hour from me and IMRT 20 min.  The relationship with the provider is important to me as well as the technology so you really hit the nail on the head.  Not looking forward to this next journey as I am just now starting to feel like a human being after the surgery. 

fishmanpa's picture
fishmanpa
Posts: 1103
Joined: Jan 2013

Hi PJ,

 

Welcome. This is a great site for info and support. Please make sure to check out the Superthread. It contains tons of great info.

I was Tx N2b MO Stage IV HPV+. I had Tomotherapy done at Johns Hopkins. It's more accurate in delivering the radiation with less colateral damage. I still took quite a beating though. It rotates 360 in a spiral around your head. It also does a  CT scan just prior to the rads giving it even more accuracy. As I recall, 22 rotations, about 15 minutes total and treatment was over!

Positive thoughts and prayers

"T"

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Do you think you may have fared better than those who had IMRT?  Did you have less collateral damage?  Thank you for your thoughts and prayers?  PJ

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

How do you use superthread?  Have not figured that out yet.

fishmanpa's picture
fishmanpa
Posts: 1103
Joined: Jan 2013

Hi PJ,

Since everyone reacts differently to treatment, it's hard to say if I fared better or worse. It's safe to say I did better than some and worse than others. However, for whatever reason, I never lost my taste buds throughout treatment and at 5 months post treatment, I have about 70% of my saliva back. I still have swallowing issues but that's mainly due to the surgeries prior to treatment. That's improving as well. 

The Superthread is a read only thread at the top of the forum page. It contains many subjects and informative posts about a variety of subjects. Just click, scroll and read. 

FYI... my tumors were extracapsulated which necessitated the use of chemo with the rads. The platinum based chemo drugs (Cisplatin/Carboplatin) assist the rads by radiosensitizing the cancer cells. It also helps to eradicate any stray cancer cells that may have gotton onto the lymph highway. 

Positive thoughts and prayers

"T"

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Thank you.   PJ

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I read you reply with interest as Hopkins has a clinical trial for persons with HPV+ SSC I am T=1 N-1  M0 and would fit the criterion.  They are using lower doses of radiation for HPV + folks so did they do that for you and their protocol said they vaccinate for HPV after tretment ends.  Were you vaccinated?  I went to grad school in Balt. and was seriously considering haveing my surgery done there by Dr jeremy edmons or Dr. Califano, but had family support in Nashville and really like Dr. Netterville.  Still have to decide on where to have the next adventure/treatment.  I only have 4 weeks to make a decision and set it up,  Pressures on.  PJ

fishmanpa's picture
fishmanpa
Posts: 1103
Joined: Jan 2013

I can't speak highly enough about my team at Hopkins or JH in general. Everyone there was amazing and to this day, the attention and follow-up has been second to none. There are several factors that go into being accepted in a clinical trial. I was Tx (unknown primary) N2b MO Stage IV HPV+ None was mentioned to me but I did sign up to participate in a couple of studies they were conducting. The vaccine wasn't mentioned either but then my tumors were HPV+. I don't think the vaccine would be useful. Dr. Jeremy Richmon is my ENT/Surgeon. You can see some of his work on Youtube. He's one of the top guys with TORS. My MO is involved heavily with HPV related SCC cancers and my RO is a pioneer in the study of Neurontin as a pain conrol medication during rads as well as other studies and clinical trials. 

Definitely worth consideration.

Positive thoughts and prayers

"T"

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

I meant Jeremy Richmon and I did see his TORS video so cool.  Mine is  HPV16+ and the current trial gives the HPV vaccine to + patients after chemo/rad.  Just thought that was interesting.

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