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Lrn10 Offline OP
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Hi, I am new to this forum but find it a well of great first hand information. My brother-in law is caught in a dilemma. If we could get some input, would very much appreciate it. He has been diagnosed with SCC of the base of the tongue. The primary tumor was very tiny but spread into one of his nodes. He had a neck dissection done on one side and all other nodes were cancer free. He has just begun IMRT radiation, 3 days into it. His neck surgeon told him he would just need radiation and no chemo. The radiologist and oncologist are pushing him to have the Cisplatin. The neck surgeon was irate that they were suggesting this to him that it wasn't necessary. The radiologist and oncologist are saying it will boost the radiation. Are the side effects of chemo worth it. He is very confused and doesn't know what to do. He is 60 years old and has a slight heart condition.

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The side effects are fairly intense but manageable. The data from other types of cancer suggest a significant improvement in the 5 year survival rate where Cisplatin is used as an adjunct to radiation (I have read numbers as high as an additional 15%). I am a little surprised by the surgeons attitude. Tongue cancers tend to be very aggressive and I am confused that he wouldn't want to hit it with all of the weapons available. It sounds to me like the radiation is the primary form of treatment and I would go with the RO and Oncologists advice if it were me. He needs to decide quickly. Cisplatin has to be administered every three weeks and usually started the first day of radiation for maximum effectiveness.

Recurrences are always bad news - it is far better to be aggressive as possible from the beginning.

What was his staging? Is he going to a comprehensive cancer center?


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)
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Hello
You only have one chance to beat this disease , I cannot understand why any surgeon in his right mind would try and dissuade a patient from attacking this with all the ammunition available.
It sounds a bit dodgy to me... try and encourage him to get a second opinion.. fast.
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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My daughter had base of tongue SCC. It had spread to 4 of her nodes, making it stage 4. She had surgery, then radiation, but no chemo. The surgical margins were clean and the tumor was well-differentiated and most of the doctors thought her chances were good enough with RAD only. They were wrong. She didn't survive. Needless to say, if it were me, I would do chemo with the RAD. Just my 2 cents.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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Hi,
Gary is correct that there are studies indicating that the combination of radiation and cisplatin can yield better results than radiation alone. You don't mention whether or not your brother-in-law is being treated at a comphrehensive cancer center.

I would strongly recommend going to a comprehensive center if he's not at one currently and getting a second opinion. Doctors can have diffent level of agressiveness when treating this type of cancer. As many people on this board have said, you want to hit this disease as hard and fast as you can. Hope this is of some help. - 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
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I recently read those studies too. There is very clear data that for Stage III and IV cancers, that Cisplatin in combination with radiation greatly decreases the chances of recurrence.

Where there seems to be genuine disagreement about whether it helps is for Stage II folks with some risk factors, such as I have, when radiation is indicated for them.

I had over 20 nodes removed and all were clean but the path. report indicated signs of perineural involvement, and the tumor was fairly thick. Becuase of this there seems to be general agreement that I need radiation (though some disagreement abotu the form of it, I will post about this elsewhere), but not agreement abotu whether combining it with chemo should be done.

I now have opinions on what to do from two cancer care centers. I am being treated at an extension facility of Roswell Park in Buffalo and I went to Dana Farber for a second opinion. At Dana Farber they strongly recommended concurrent chemo, the radiation oncologist here said there wasn't strong data that it had the same benefits for Stage II folks. This is because of the two experiments done to test whether the concurrent chemo was more effective only one (which was done in Europe) included hiugh risk Stage II patients and they did not report their results for each Stage spearately.

After visitng Dana Farber, though, I was ready to throw whatever ammunition I could at this cancer. I would go for both.

It may end up being a moot point for me, however, because I also am fighting Stage I breast cancer at the same time as my tongue cancer and the lumpectomy/sentinal node removal incision sites (had this surgery done 3 weeks ago after the surgery on my tongue 5 weeks ago) became infected and had to be opened and drained so I now have a deep open wound healing on my breast, and a smaller one under my arm, which will probably still be healing when I start radiation for the tongue (since the incisions had to be opened and driane what they do is rinse it out and pack it with gauze each day at the hospital--luckily we only live 2 miles from there--and it heals from the inside out. Last week they were using two large gauze padsto pack it, this week it has healed enough to take only one). I've been told there is no way they will give me chemo if the breast incision is still healing since it would stop the healing process in its tracks. And also told that the radiation on the mouth shouldn't wait for that healing to occur.

I got the feeling they didn't want to do it anyway in my acse though. Although it is apparently part of the standard protocol in Eurpoe for treating high risk Stage II, it is what the Roswell Park rad. oncologist called a "category 3" for the protocol here (meaning. I gathered, that there is no strong agreement among folks at the different national cancer centers that it is of benefit) for Stage II.

Again, though, this is NOT the case for Stage III. It is pretty clearly of benefit if you have any node involvement.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Lrn10 Offline OP
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Hi,
Thank you all for your input. If anyone else has any further advice it would be greatly appreciated. My brother in-law was seen and had his surgery at Sloane Kettering in Manhattan. His surgeon there is a very respected Doctor worldwide. He is having the radiation at a satellite branch of Sloane Kettering closer to home and outside of the city. Which makes it difficult to decide whether to listen to the Oncologist and Radiologist here or the highly respected surgeon in Manhattan. He also at a younger age suffered a mild heart attack and had angioplasty done about 10 years ago. His cardiologist said the chemo would not affect his heart. His primary tumor at the base of his tongue is 4 X 3 x 2 cms and the tumor in his node was 4 cm. He is borderline Stage IV. After reading your replys he is seriously considering the chemo. The earliest he would be able to start would be this Wednesday, wondering if starting late will ruin the effectiveness? Also, if anyone could give any details of what he should expect to happen, would be appreciated. Think it is better to be informed than surprised. He is quite terrified. Thank you all so much for your help. Best wishes to you all.

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I don't know if starting late would make a difference in effectiveness but I'm curious about the answer to that myself since I might be able to start with chemo a week or two after I start radiation.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Lrn10, welcome to the site. I don't know if the delay will affect the effectiveness of cisplatin. I can say I had it with rad and it was explained to me that it would kill any microscopic cancer cells wondering around my body that were looking for a home. That in itself was enough for me.

I had no trouble at all with the chemo, I had trouble with the antinausia meds they gave me before the chemo. There are apparently two or three different types and I reacted to one type and they put me on another and I had no problems from there on. And whether it is needed for Stage II or III or IV or not, I don't think it will hurt if used on a stage that it isn't particularly helpful. And it might help, so that settles it in my mind. You have to use every possible weapon to beat this disease.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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I was a stage IV with one node positive and I had surgery and radiation, no chemo. This doesn't mean you shouldn't do chemo, I'm just chiming in as one who didn't have chemo and will celebrate my two year anniversary soon.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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