Hi everyone, I would like to thank all the people that had written me during this past year, a year that was at times unbelievable with what I was going through, how could I have cancer, I was always healthy, going to the gym three times a week, a secure job and a beautiful wife that’s always been by my side for the last twenty seven years, plus living in paradise on the island of Maui. What more would you want.
Well I had something I wouldn't wish on anyone, my doctor let me know over a cell phone conversation that I had carcinoma, I said what? and he yelled back to me with a chuckle that I had Squamous Cell Carcinoma, CANCER! and not to miss my doctor’s appointment that he set up with a head and throat doctor, so I said ok and left it at that until I did heard it from my new doctor and friend!
It’s been a year since my surgery on my throat and nine months since my last radiation treatment. I'm back to my normal weight 175lbs from 158lbs at my lightest, my throat is still burnt from the radiation and it still hurts to swallow once in a while and my taste is about 60% back, candy and ice cream and some foods will loose their taste after a couple of bites but if that’s all I have to live with then let it be. I have been free of cancer so far, have been told this is an incurable cancer
but I don't let it influence my everyday life, I know one day it may come back, but I have set that thought on the back burner, I've have a life to enjoy and that’s just what I'm doing through prayers and having faith in myself and God.
Ronald - I've read your story and can't believe you were told that it was incurable! So wrong. There is usually a 80- 85% cure (remission rate of 5 years) with this type cancer.
My 35 y/o daughter was diagnosed in May 2004 after being misdiagnosed for 6 months. She diagnosed herself in May & had her ENT that she had been seeing tell her yep, you're right ! It's squamous cell carcinoma! We immediately headed to MD Anderson Cancer Center in Houston, TX and have the most awesome team of professionals helping her. She has undergone chemo first for 3 rounds (3 weeks each) and now will have surgery on August 19. the chemo first is part of a trial to kill all active cancer cells in the hopes that when she his opened the cancer will not spread and after surgery, the doctors are hoping to avoid radiation. We believe that through the many prayers that are being said for Lesley, that radiation will not happen. We met a lady in the barium swallow section at Anderson 2 weeks ago from Oahu (spelling) HI who had squamos cell carcinoma on her tongue. She had the surgery 30 days ago and her first whole food was going to be in the barium! She had a resection of part of her tongue and was speaking quite well. Lesley, my daughter, will have a plastic surgeon take skin from her forearm and graft onto her tongue to help in regaining functional speech. She will have the lymph nodes on the left side of neck removed - so I refer to it as being "fileted like a fish"! She's very positive and upbeat and has suffered no ill effects from chemo except the loss of hair on her head only. She is convinced she will not need radiation as she has a cruise to Mexico in October that is bound & determined to be on! Her doc has given his blessing as long as no radiation is needed. Don't ever give up and if you ever want a second opinion, please consider coming to MD Anderson Hospital - it's part of the University of Texas Medical Center and ask for Dr. Eduard Diaz. He already saved a friend of mine's life 4 years ago who had laryngeal cancer and was told he would have to have a voice box but would probably be dead in 4 mnonths! George is alive and well and did NOT have to have a voice box! They place Dr. Diaz right up there next to God!
Just curious, did you have a history of smoking and alcohol? The web sites I've gone to all seem to say it is a combo of both of those things that tend to cause this cancer - although I talked with a radiologist oncologist in Mobile today, where we are from, that said it's just bad luck that causes it!
Good luck to you and if you care to email me, feel free to do so. You can reach me at Jalexboo@aol.com
Judy Alexander
Darling, if you are still eating candy and ice cream, your cancer will have to return.
Please educate yourself on glucose and cancer and stay happy with your beautiful wife and life a little longer.
:) S.M.
I just wanted to know where you live in Texas. I have lived in Texas all of my life and I know the place you wrote about. If you reply to this message I will tell you about what is going on with my husband and his cancer. We are doing radiation and no chemo. He had tonsil cancer. Everything has been removed and now we are radiating.
Hope to hear from you soon.
D. K.
I put a message on the board after reading your message Judy yet I didn't remember where I saw it to re-find it...so I apologize if this is redundant.
We are in New York. My husband was diagnosed a week ago with Stage 4A lateral tongue base SCC which is also in a lymph node (a few involved I think)...no spread to lung or bone.... Just had a sore throat too long and the ENT said "did you know you have a lymph node the size of a golf ball?" We didn't notice it, feel it...anyway, here we are confounded by proposals re treatment...4 experts, 4 opinions re approach...yet none have suggested chemo as primary...nor to avoid radiation. Radiation has been involved in each opinion 1) radiation and chemo as adjuvent 2) surgery, radiation and chemo as adjuvent 3) radiation, brachytraumatherapy implants, chemo as adjuvent and, 4) transoral lazer microresection, radiation and chemo.
I wondered where the location of the SCC was on the tongue and what Stage re what you shared?
They told us we need to act fast so I am not sure that we can get an appointment with the person you suggest yet I'll try...
Any thoughts you have would be greatly appreciated!
Regards,
Carmen (for Scott)
Hi!
I am new to this web site. I am a two time survivor of squamous cell carcinoma that started on each of my tonsils. I am a nonsmoker, non-drinker exposed to agent orange in Viet Nam.
I have been cancer free the second time for 10 years. It was almost exactly 10 years between the first and second occurences.
I am in good health and am an avid runner. I have learned to adapt to almost no saliva as a result of radiation.
Life does go on and is good.
My daughter lives in Austin. She had mentioned the reputation of the Anderson clinic. I had all of my treatment at the University of Iowa Hospitals and Clinics.
I have just been diagnosed with squamous cell cancer of the tongue that has met. to the lungs. I too am attending MD Anderson. I just underwent a biopsy there and I start treatment next week. While you where there did you meet any patients with squamous cell cancer of the tongue that had spread to the lungs? If so, what did you learn about this type of cancer. I was first diagnosed in Boston and the doctors there told me that because the cancer was in the lungs, there was no hope.
Since I am from Houston, I believe in the doctors at MD Anderson, but I just am afraid to ask about the lungs and longevity. I was hopeful that you could refer me to someone with this particular type of cancer
'
Hi, just letting you know I had lung squamous cell carcinoma stage 4 in 8-01. I had 33 days of radiation then in 11-03 had throat cancer in tonsils stage 1. Same kind as lungs, had 35 days of radiation so you see we did a flip flop. I just went for ct scans this week last I had was 7 mos. Ago. I do still have some shadows in the middle but has not changed any to this point. Cannot op. I am on oxygen w/40% lungs (emphysema) so in your case it looks good with several options. The best to you and there is hope I am still here and plan to see grand children get married ages 10 & 12.
p.s. MD Anderson is very good I did some training there. Please let me know how your doing.
Good luck, Vonnie
January he started having hip and knee pain and after a long battle we found that the cancer had mataticised to his bones and liver. Looking back and knowing how hard the radiation was, I still would have insisted they follw with chemo to make sure the cancer had not gotten into his bloddstream as it did. The ENT was sure that even though it was in two of his lymph nodes, he took out the ones around it and was sure he got it all. We have the utmost confidence in our doctors but this cancer is slimy and snuck out without anyone knowing. There are several studies showing that a follow-up chemo increases the survival rate significantly.
Best wishes and if you need some advise on caring for your husbands skin or nutrition, please let me know.
Ellen
My friend is going through the radiation now for tonsil cancer...the radiation is horrible...hes having chemo every three weeks...its stage 3 and gone to the neck...I hope he gets through this...hes having a horrible time eating now...going into fourth week
...any suggestions on anything involving this?