Hi Karen,
Like you I too had a tonsil cancer. The salivary gland in the vicinity of the right tonsil is toast but a few other glands have started to work and continue to improve. I sometimes forget my water bottle now.

The decision to get IMRT was mainly based on the quality of life issues post Tx. I was also a perfect candidate for it. At the time I was being treated there were just a handful of radiation clinics offering IMRT. I was very fortunate indeed that my HMO gave me a choice of Stanford or UCSF for treatment, both NCCN member institutions. Today I may have been forced to go to a regional radiation clinic with little experience in IMRT. UCSF just happened to be a major teaching and research hospital and one of the pioneers of IMRT technology. The machine I was treated on was a research machine. All 6 of their current Siemens Linear Accelerators have MLC now (multi-leaf collimator), in other words IMRT.

I had to lobby my doctor to receive IMRT. I was originally scheduled for XRT and literally in the "11th hour" (I had received instructions on booking my XRT treatment), I sent the doctor numerous white papers about IMRT. He studied them over and to his credit, acknowledged that he hadn't heard of IMRT and re-wrote the order, clearing me to go to UCSF. He is a head & neck surgeon, not a radiation oncologist. This all happened a little over a year ago.

Hi Christine,

Gary explained it about as good as one can. I requested IMRT after talking and emailing Gary when I was DX last July. Thank You Gary!!!!!

I had a stage 4 tumor on my right tonsil and soft palet. With IMRT radiation I had no radiation burns on my neck or sores in my mouth. I also have full salivary function which is rare. I had a slight cough about three weeks into my 6-1/2 weeks and a script took care of that. From what Brian told me I was extremely LUCKY on not having side effects. Remember EVERYONE reacts different
even if they receive the same treatment.
I am eating almost anything I want to, It does take me much longer to eat now. Small bites and each swallow is a thought out process.

I only wish everyone wo has to have radiation would have no side effects but I know that' only a wish.

Erik, This forum is rich with people that can educate you about Head & Neck cancer from 1st hand experience. take advantage of this and ask questions, email members and when your done with your treatment you will be the one offering advice and support.

Daniel Bogan (A Wisconsin Cheesehead)

February 15, 2004 11:26 AM
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I wanted to weigh in on this one because it is such a great technology, but it is not for everyone. If you do a search here on the boards for IMRT you will see similar comments in the past. As great as it is, and as much reduction in after affects that it yields, IMRT isn't for everyone, especially late stage threes ands fours. Even if I had had the opportunity for IMRT 5 years ago, (which I did not) I would not have chosen it because with extensive bilateral neck mets, who know for sure how many occult small cancers cells were in the surrounding tissues, (muscle, fatty, and others) that would have come back to bite me a year later. It works best in areas where the typical cancers are very confined, brain cancers for instance, and as Gary mentioned prostate cancer. These cancers require precious pinpoint accuracy and are usually well defined. They do not typically spread out into the surrounding tissues and become diffused in those tissues like most oral cancers do. So while I am the biggest proponent for this technology in early oral cancers, and in sweeping the areas of known mets even if nothing appears there on MRI's, or CT's, this cancer can end up in the osseous (boney) tissues of your mouth, your spine, and numerous other regional areas in it's early metastasis that are not always obvious to scanning and diagnostic technologies that we use. So primary

Wow, you guys are fantastic with "the details." I hope Eric doesn't mind that I've side-tracked his thread a bit, but my husband and I have learned a hard lesson in the past 14 months. Maybe this will shed some light on potential issues he and others may face.

I questioned the IMRT vs. standard radiation for one big reason: I had no idea until this message board that there were different kinds of radiation treatments one could receive. I mean, I have a master's and my husband has a doctorate--we are both in education, but we were not aware of all we needed to know going into this ordeal with cancer. We had no clue what to ask or what to research. When my husband was first diagnosed in Oct. 2002, the doc said it was a "minor cancer" and that outpatient surgery and radiation treatments would take care of it, that we were lucky. He lulled us into a false sense of security. Maybe we let him. I don't even know what kind of radiation my husband had except that he went for 33 treatments and they made a mask for him to wear with markings rather than tatoo his face. He had neck burns and big problems with mouth sores and dryness, etc. (The beam was pointed above the corner of his jawbone beside the right ear.)

As you know from my recent posts, Scott just had major surgery for either one heckuva recurrence or for cancer that was lurking all along. What is really disturbing to me is that the largest of his tumors was the size of a small orange and in the same general area that they were zapping with radiation. You would be correct to assume we were dismayed and shocked to discover that such a large tumor withstood (or grew in spite of) radiation to the area.

Now, my husband faces more radiation if possible. The first cancer was treated by a local cancer center; we had no idea that even for a "minor cancer" (what a joke) we should have sought out the best major research hospital in the area (which is where my husband is being treated for this recurrence). We now know we want big bucks, big research, and big brain power on our side. That is not a shot at local facilities--we just feel somewhat bitter that our local ENT didn't catch the most recent cancer even though for months my husband had all the symptoms (that doc kept saying my husband was having side effects from the radiation and that the good news is "cancer doesn't hurt." Yeah, right.) That has made us question whether we got the best/right treatment all the way around.

So, we went from a T1 14 months ago to a 14 hour multiple-part surgery last month. Next week my husband will undergo a re-resection of bone tissue in his hard palate that did not come back with clean margins. He has paralysis on the right side of his face along with all kinds of other problems. IF he can have more radiation, it better be right and it better work, because the chemo they gave him before surgery was experimental and although they plan to do more in a few weeks...who knows if it will work?

I do know that surgery and radiation offer the best success rates for OC, so I want to be ready with knowledge and good questions when we meet with our oncologist in two weeks. I will not be in the dark as I was 14 months ago. My husband and I want to understand every aspect of each choice in his cancer treatment. We don't want to be sitting here in 6 months wondering if we did all we could to make sure we got the best treatment available to us.

Thank you all for your input on radiation. And thank you Eric for putting up with me barging in on your thread.

Christine

By the way, Brian, that is one great analogy with the dandelions. I hope you don't mind if I borrow it! :p

C.

Hello everyone! Thanks for all the responses & your support & help. All discussion is relevant whether you feel like your rambling or not. It's all important. Thanks for the tip on Fred Hutchinson, I'll check it out. I have to admit, I'm still scared but have regained my normal positive attitude & kick ass outlook thanks to you guys & my wonderful family & friends!!! For a couple days there ending it all sounded like a viable choice, sure glad I snapped out of that!

Hi Erik...

I live in Kirkland and I had my treatments at Virginia Mason. I had stage 4 scc at the base of my tongue. My cancer was too far along for me to have surgery but I did have IMRT radiation and chemo. I also was a "model" for a head and neck cancer brochure that one of the oncology nurses is putting together. The hospital photographer took pictures of my peg tube and my pik line insertion, amoung others. I wish it had been ready when I was going through treatment. Erik please email me. It can help to have someone who was treated at the same hospital to talk to. My email is [email protected]

Hi Erik...

I live in Kirkland and I had my treatments at Virginia Mason. I had stage 4 scc at the base of my tongue. My cancer was too far along for me to have surgery but I did have IMRT radiation and chemo. I also was a "model" for a head and neck cancer brochure that one of the oncology nurses is putting together. The hospital photographer took pictures of my peg tube and my pik line insertion, amoung others. I wish it had been ready when I was going through treatment. Erik please email me. It can help to have someone who was treated at the same hospital to talk to. My email is [email protected]

Hi Erik

I'm glad you got in touch with me. I read your story on the intro page. I'm glad to know your wife and oldest daughter will be there to support you! Now that we have connected I'll be there for you also. I wish I had someone to talk to when I went through treatment. Your family will be your major support but they can't address you fears like a survivor can.

Khaja

khaja.. Just a little bit of board information. Those white icons next to the persons name give you a direct link to their email address (if they wanted people to have access to it), the next one allows you to communicate with them privately through the board without anyone else being able to read your communications including us here at OCF (look for your private messages in the: my profile link top center of the page, The last one allows you to edit your own posts, but not anyone else's incase you want to fix something that you put up incorrectly in something after it is already up.