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#24308 09-15-2007 07:42 PM
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First I must say how brave you all are to post here. It truly feels like a safe place, thank you.

My father was diagnosed with SCC on the left tongue at the anterior base about two months ago now. He had surgey to remove it on 8/16. The tumor was much larger than they believed and extended very far back down his throat on the tongue. In the end they removed about 70% of his tongue including the majority of the floor of his mouth and left jaw lymph nodes. They rebuilt the floor, what they call a flap (sorry I don't speak fluent terms yet), with a graft from his wrist (rather large).

So far, so good. He still cannot swallow and is home with a g-tube for feeding a liquids, but he works daily on exercises from a therapist to learn how to swallow again.

We just learned that they want him to undergo 7 weeks of radiation therapy due to the size of his tumor and location. They were only able to get a 4ML clearance during the removal. We are all seriously concerned about his quality of life should he decide to move forward with the radiation treatment. Since it will be applied to his tongue, we/he are concerned about the salivary glands being wiped out and the long term effects of this, not to mention other concerns.

Can anybody offer some experience with radiation therapy results and progress? Sorry for such a long "I'm new here".

Thank you in advance for your courage. My thoughts and prayers are with all who gather here.

-David


SCC Left Lateral Tongue Base/ Surgey 8/16
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David there really is only one way to approach this monster of a disease,and that it is to hit it hard with every available weapon you are offered.Dont ever be fooled in to thinking that you can turn your back on it for a moment.
If you have questions about the quality of your fathers life in the long term racked up aginst the quality of his life short term during treatment,then get a second or even a third opinion about his treatment options.I would hazard a guess that you will get the same advice from all of them ,but you need to be happy in your own mind that you are getting the best options available for your dads particular case and future recovery.
Radiotherapy is hard there is no doubting that,but if it is necessary to save your dads life it will become another hurdle you will have to face,and everyone here will do their best to walk you through every twist and turn.


good luck with whatever you decide

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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David,

I agree with Liz, in that hit this cancer with everything you've got. It is aggressive. I can only relate the decisions my sister made while fighting this cancer. She also had squamous cell cancer in the tongue area. Her dentist/ and doctor had been watching the area for 10 years, as each biopsy had been inconclusive. Just to let you know my sister was a dental hygenist, a non smoker and occasional drinker, and very healthy. 2 1/2 years ago, the tongue area started to cause pain. Her surgeon wanted to remove the tumor on the lateral side of her tongue, along with salivary glands and some lymph nodes. She was concerned about her quality of life afterwards, and since they found the cancer so early, she opted for the tumor removal from the tongue only. Her second surgery was to remove more of the tongue area (maybe less than 25% of tongue in all), since the first surgery resulted in a biopsy that proved positive for squamous cell cancer. It then spread to the jaw area and her surgeon wanted to do a radical neck dissection, which my sister decided against. He instead performed a modified neck dissection. She chose not to have the radiation, having the concerns about quality of life your dad has. Connie also became a veggan and was doing everything one could to beat cancer. A few months after the modified surgery, the cancer returned and she underwent the radical neck dissection, but declined the radiation treatments that were recommended. After each surgery my sister was able to recover and felt very strong, she was only 50 years old. About 3-4 months after the radical she began having intense ear pain, which led to seizures. An MRI showed a tumor on her carotid artery. At this point she and her husband moved in with me, because of the amount of care she required. Connie lost her ability to swallow and had a PEG tube inserted. She started radiation and chemo treatments, as surgery was not an option at this time. She went through the 7 weeks of treatment, and was real trooper, through all the nausea and pain, and feelings of claustophobia from the mask, etc... It a tough regiment. Your dad will probably have the option of taking a shot (amofostine) before each radiation treatment that reduces the amount of "dry mouth" he will have at the end of treatments. We were hopeful that my sister was going to beat this cancer, but it didn't happen, as she passed away in August. I don't know if she had been more aggressive with her treatment, if she would still be alive, the cancer was discovered in it's early stage. It just shows you how aggressive this cancer is.

Just a note, a co- worker of mine has a brother-in law, who was diagnosed with neck cancer (he was a long time smoker and heavy drinker). He underwent the radiation and chemo regimen, with plans to remove the tumor surgically after treatment. His tumor literally disappeared after treatment, and surgery was not needed. He needs to drink water constantly as he was not given the option of amofostine shots, but otherwise is doing fine, and glad to be alive. There are miracles happening out there. I've learned that the cancer seems to be more aggressive in people who were non smokers...strange that that should be the case.

If he were my dad I would recommend the aggressive course of action. I know my sister could have lived with the dry mouth, and difficulty swallowing and speaking and the scarring from the surgery. We miss her so.

My thoughts go out to you and your father. Good luck and remember miracles do happen.

Nancy


Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
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Hi David-
One more thing, as far as the dry mouth goes, it's really more of a nusiance and you get used to it. These days with IMRT you get a lot of the function back. I had one of my major salivary glands removed too so I've got less spit to start with and it's still ok. It changes how/what you eat, but I think it's a small effect compared to what you dad is going through after the surgery. You do have to take good care of your teeth, brush and floss after every meal, etc. but you get used to that too.
Melissa


Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
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David, hi, could you tell us more about your Dad- How old is he? What is his attitude about all of this? How well has he handled the surgery he had? Losing so much of his tongue has already affected the quality of his life as he knew it before. The rad tx will be tough, and alot will depend on his attitude and the fortitude of the caregivers involved in his care. There are a zillion posts here about radiation and the after effects. Alot depends on the age, general health and attitude of the person undergoing it. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Hi David,
My mom recently completed 31 IMRT tx's and 8 cycles of Erbitux. Tomorrow morning she will be having brachytherapy surgery, which means more radiation as it is internal.
At her last appointment with her medical oncologist he made a statement that has stayed with me since. He said, "If we feel we can cure the patient, we just about kill them with treatments." If we feel we can cure.... well, that was all he had to say to me to make sure my mom continued her battle. She has a fair amount of saliva still, hopefully this next course of action will not interfere with that. She is always walking around with her icy glass of water. Biotene makes a number of good products to help aid in that area.
As a primary caregiver to my mom, I can tell you that her quality of life is utmost important to me. It's not an easy position to be in, it is sometimes difficult to make her get up and get moving. She is tired, she's lost a lot of weight, no feeding tube, but she tries so very hard everyday. I admire her so much. I think Amy is correct in saying a lot depends on age and more so to me, on attitude. Many times that attitude has has been bolstered by me. It's hard to see your parent lying there exhausted from radiation, then pushing them to get up. Her doctors, MO, RO and surgeon, are all thrilled with how well the radiation worked. I'm praying that this surgery will have the same outcome.
Good luck to your dad,you and your family.
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Nancy,
Thanks for reminding me that miracles do happen.
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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David --

Welcome to the board -- I think it is great that you are there for your dad. Though I now live in Ohio, I was born and raised just up the road from you, in Redwood City.

I also was diagnosed earlier this year with cancer of the tongue base, in my case on the right side. I also had SCC in 2 lymph nodes on that side. My tumor was about 2 cm, so they elected to use radiation to kill it, rather than surgery. However, my first step in treatment was a bilateral neck dissection, where they removed multiple levels of lymph nodes and a salivary gland from each side.

I then had 39 IMRT treatments and 8 radiation treatments. I was given Amifostine daily to help my salivary glands, as well as a prescription for Salagen.

I am a litle over 2 months out from treatment, and am clinically cancer free. The saliva is an issue, but nothing life shattering. Biotene products help, as does the Salagen. I can eat just about anything -- I just might need water to get some things down, such as some cakes or breads that suck up the available moisture in the mouth.

My neck is stiff from the radiation, but that is a minor annoyance. I am pretty much back to pre-treatment shape, except that I am 25 pounds lighter, and have to be more careful about my skin in terms of moisture and sun exposure.

The treatment is no fun, but aggressive treatment can cure and minimize recurrence chances. Keep close to the board -- we are all here to help.


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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David, I remember being crazy with worry about my husband's quality of life as he was starting into treatment. One of the things I was worried about, was that he would have no saliva and I couldn't imagine what that would be like for him. It turned out that although his saliva is significantly diminished, it has not really been a problem for him. Even without Amifostine, which he did try, but only for one day, as it made him extremely sick. Try not to worry too much about what might be. The treatment was certainly very rough, but day by day as my husband was going through it, I found myself thinking "it is going to get really bad, I don't know how he is going to make it through when it gets worse..." And while I was doing all that worrying, the day finally came and the treatment was finished and he survived! And is still surviving, quite well. Not that it was easy for him by any stretch, but much of what I stressed about, which was the worst case scenario type of stuff, did not happen. Hope this eases your anxiety a bit in supporting an aggressive treatment for your dad. Good luck.


Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.
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David,
I did not realize what I agreed to when I told the oncologist to go ahead with the surgery and radiation/chemo approach to my Stage IV base tongue cancer. But I am so happy today that I did. This January will be 5 years since the initial surgery. No cancer reacurring so far. Yes it was not easy, but eventually I got off the feeding tube and forced myself to swallow. I still to this day am on a liquid diet (use blender) but get all the nutrients I need. My wife has been my guardian angel and has been there through it all. But constantly has offered nothing but positive feedback. It has helped a great deal. One must hang tough and want to beat the disease. It can and will happen.

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