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#43021 03-17-2004 09:23 AM
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A few weeks ago (late Feb.) after my surgery on Feb. 10th. I asked about the value of getting a second opinion and the response was unanimous - get one!
As a result, I went to Boston last week to the Mass. Eye and Ear Infirmary that is affiliated with Harvard Medical School and Mass. General Hospital. It is a very good thing that I did for I have just learned that the pathologist in Boston disagreed with the pathologist in Burlington, VT who had concluded my margins were clean. The Boston pathologist disagrees and thinks a margin is not clean.
My surgeon phoned today to inform me of this and said that if these two pathologists cannot agree, he plans on radiating my mouth, throat and neck.
If I could solicit the expert advice of this group, what sort of questions should I now be asking and thinking about? I've read about IMRT radiation therapy but don't understand if it is always the preferred alternative.
My understanding is that radiation is a one-time modality, in the sense, that radiated tissue cannot be be re-radiated. Is this true?
Also, I was told by a resident in Boston that the window for beginning radiation treatment is 4-6 weeks after surgery. I'm now at about 51/2 weeks, is this critical?
Any and all advice is greatly appreciated. Thanks, Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#43022 03-17-2004 09:41 AM
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Hey Sheldon,
My husband just got done his chemo/rad treatments. He had 7 chemos and 41 rads. They radiated his tongue, both sides of neck and back of throat, 4 sites. He did not have clear margins from the neck tumor as it was up in his carotid artery and at the base of his jugular. Since it wasn't clear aim, they didn't do IMRT on him, except for the last week of treatment. He had his radical neck dissection on Christmas eve and he started rad treatments Jan. 12. They needed to get started asap since through surgery they could not get all the cancer. It sounds like your case is different, but just wanted you to know our treatment course. It was eight weeks and a hard ride, but we are now looking forward to better times. They won't do any testing for at least a month as the rad works in your body weeks after treatments end. If you do not have a PEG tube for food, I highly recommend it especially if they are radiating your tongue. Dan had his put in the first week of treatment, but didn't start using it until about the end of the third week. From then he has not been able to take anything by mouth, not even water. We know this will continue for a while. Everyone is different so not sure how long. He lost his voice about 5 weeks ago, and hopefully in a few weeks he will get that back.

The thing that has helped us the most is a fantastic support team...it's so important.

Take care, prayers are with you.
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
#43023 03-17-2004 10:42 AM
Joined: Nov 2002
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Sheldon,
Whether you are a candidate for IMRT depends on several variables. Only your radiation oncologist can determine for sure. I would certainly ask if it is a possibility. It does have many tissue sparing qualities. If the cancer is spread around, XRT may be the radiation treatment modality of choice.

I am confused why your surgeon is telling you this. Your radiation oncologist should be the one telling you this.

In some cases, persons receiving IMRT can receive additional treatment.

Because SCC is known to "shed", they always prefer to keep a tight time table on multi treatment such as surgery and radiation. It would take a week or two just to prepare you for treatment. They need to make a mask, take a scan or two, develop a treatment plan and then do a simulation before actual treatment starts. If you are going to have chemotherapy also then some more lab tests may be required before they start also.

So where are you getting your treatment?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#43024 03-17-2004 11:01 AM
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ssax Offline OP
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Thanks Gary.
I expect to be getting my treatment in Burlington, VT at the Fletcher Allen Health Care facility. I've posted these questions in anticipation of needing radiation after getting the news from my surgeon today. He has been the one I've been dealing with until now because up until today, he didn't think I needed radiation and my second opinion in Boston concurred subject to the Boston path report agreeting with the Burlington one, which it now appears it doesn't.
So, up to now, I've not yet seen a radiation oncologist as it wasn't deemed necessary.


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#43025 03-17-2004 11:31 AM
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Posts: 3,552
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So what's the deal with your cancer? What stage was it? Where exactly was it?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#43026 03-17-2004 12:01 PM
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ssax Offline OP
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Sorry Gary,
I should have been more clear. Jan. 22nd, I was diagnosed with Stage 1 SCC, a T1 tumor located between the two molars on my lower right and my cheek.
I had an x-ray and CT scan shortly thereafter and both came back clean. Feb. 10th, I had the tumor removed (plus my two molars and the outer cortex of my jaw adjacent to the tumor). As I mentioned the original path report was clean margins and no mandibular cancer. Second opinion was that one margin was not clean.
-Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#43027 03-17-2004 08:22 PM
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Hello Sheldon,

I am happy you have gone one step beyond in looking out for yourself. IMRT may or may not be an option for you depending on variables. It is less problematic in terms of side effects, but it is not appropriate for all. You need to consult with an experienced radiation oncologist. There are many previous posts here about what to expect with radiation treaments. Use the "search" word to find them. Ask all the questions you have any time!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#43028 03-18-2004 08:22 AM
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Sheldon, a couple more things. IMRT should produce less longterm negative side effects, so if you are able to get it that would be a good thing. The 4 to 6 week window allows for healing in the surgery area. I believe as soon as possible after that will tend to zap any stray cancer cells before they have a chance to multiply. Generally they will radiate the defined area to a maximum value and you cannot receive more in that area. How large an area they radiate will be up to the radiation oncologist.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#43029 03-18-2004 06:51 PM
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Sheldon, to add to Mark's reply, even though you can't re-radiate a particular area, one of the benefits of IMRT is that should the cancer appear in another area you can have IMRT in that area also. Say left side/right side etc. Doc's of course want to start radiation as soon as practical, I've waited as long as 4 weeks from surgery to having the mask done and simulations done while staples were still in and starting radiation the day after staple removal.

IMRT can get as precise as they want or as broad as they want. The radiation plan printed out looks kind of like a topographical map overlayed on the CT scan, with the "peaks" getting the most radiation.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.

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