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#24346 09-24-2007 05:27 AM
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Hey there, my name's Fran, I'm 32 and I'm from Italy. Last July, after suffering for six months because - I thought - of some dental surgery (my dentist was shown the scar on my tongue and said "it was nothing to worry about") I have unfortunately been diagnosed a stage 2 small tongue cancer. Being a young patient, the surgery was quite aggressive, part of my tongue has been reconstructed (they wanted to leave 2 cms wide margins) ad all lymph nodes in the area removed (and luckily negative). Everything went well, I've been told the hospital I went to is the best in Italy for these matters, and I am quickly recovering. Now, the docs sent me to some radiotherapists to evaluate the possibility of some supportive radiotherapy, considering my young age and the type of cancer. I have seen a couple of them, so far, and both said radiotherapy is not a reasonable option in my case, as there are a lot of contraindications (teeth, saliva etc...) comparing to the uncertain benefits I could gain (having had the whole cancer removed). Still, the guys who had my surgery done insist on radiotherapy as a praxis. I feel very confused. When everything started the doctors said the quality of my life would not substantially change, now it seems that, if I choose radiotherapy, I will have to face a very difficult change in my life. I feel betrayed. I think I'll hear just one more doctor and then decide, or else I'll get mad. It's already very hard for a weak person like me to face this, and I think I've been brave and rational so far... but I'm sure that if I stopped getting better, and eating, and if I lost ny teeth at the age of 30, well, depression would come as fast as hell. All I want from the doctors is to be very honest, to tell me the pros and cons so that I can make my mind up in full cognition.
Thanks.


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24347 09-24-2007 08:55 AM
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Francesca,

Look at how far you've come. The next step is just gathering the right information to make an educated decision. A friend of mine has a similar cancer (tongue-no lymph nodes-good margins), was treated at Sloan in NY, did not have chemo and radiation, and had a reoccurance. I can put you in contact with him via e-mail to share his experience. He since has had another surgery, chemo and radiation, is doing great two years later, and is expected to have a full recovery.

Regards,
Rob J.


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
#24348 09-24-2007 04:06 PM
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Francesca

I had 25% of my tongue removed and neck disection all nodes clear and clear margins and I had no rad and chemo. so far so good ..Do I wonder if It was right decision ..sure somtimes I do. I went to Dana Farber in Boston Mass. as well as mY local Drs here. so I dunno . Rob I would love to talk to your friend.


Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#24349 09-24-2007 04:44 PM
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Dear Fran,
I think no matter what type of treatment you decide upon, once you have cancer, it seems your life will change. You are young, you have a full life ahead of you. My mom has gone through 31 treatments of IMRT, 8 cycles of Erbitux and just this past week brachytherapy surgery. I can tell you that her saliva is still pretty good. There are many products on the market that are beneficial in aiding saliva, Biotene for one, my mom still prefers the sodium chloride she gets from her doctor. As for the dental end of it, you could get your teeth taken care of before hand, any damage or teeth that need to be replaced could be dealt with after. We have two dentists here at OCF, Jerry Wilck and Dr. Mike, who can shed a lot of light in this area.
Fran, I can't imagine wondering what if I didn't try this if some of the doctors are feeling so strongly about you following through this way. My mom was originally supposed to have similar surgery to yours but because of a heart condition which she was unaware of she had to go in a different direction. All along the doctors felt she would benefit from the radiation after surgery had she been able to go that route.
Read here and ask questions. So many dear people have helped so many, you just might find the answer you are searching for. Good luck to you, try to calm down, and I hope you find peace in whatever your decision is.
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.
#24350 09-24-2007 07:20 PM
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thanks guys, I'm still thinking about it, amd looking at my papers I just "found out" my cancer was at stage 1 and not 2 (the number 2 is referred to what we call "grade", the type of cancer), which is already a good thing, of course.
I'll see another doctor today, but I don't think seeing too many would be a good idea, and I also should stop reading studies and stories on the internetbecause I'm really getting obsessed here. Before this amlethic radiation thing I was doing quite well, eating and working from home and feeling "normal".


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24351 09-24-2007 07:49 PM
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Francesca, I had 37 radiation treaments, as well as chemo, and I have all the saliva I need, seriously. I would guess about 95% of pre-treatment amount. I just want you to know that with IMRT, saliva can often be preserved.

The only lasting effect from radiation for me is that drinking any wine at all is like putting a lit match in my mouth as my tongue just cannot tolerate any alcohol. This is probably a good thing, but was a disappointment for me.

I just want you to know that if you do decide to have radiation, you will not be changed so much that you cannot live a normal life.

My thought was that knowing how persistent this cancer is, I wanted to hit it with everything available. That was more than 5 years ago and I feel absolutely fine and am very active and social.

Whatever decision you make, I wish you good health.

#24352 09-24-2007 08:07 PM
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I'm glad to hear what you say, Joanna, and I think you have been very lucky (did you have radiation of the tongue? what kind of problem did you have), but I also read about very different reactions to radiation. I think it's very individual, and of course if you take the risk to undergo this treatment, it's only in the end that you find out about your individual reaction.
Even the therapists told me about losing teeth and saliva...
Also, according to some studies I read, once you've had radiation you cannot have it again, you've used your last weapon.


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24353 09-24-2007 10:35 PM
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If I had a stage one cancer, I would seriously consider not having the radiation. I have a woman here in my town that had stage one on her tongue and that was 11 years ago, she never had any other issues other than part of her tongue was numb and she bites it sometimes.
Also, be aware that it's not true anymore that you can only have radiation once. Re-radiation is getting more and more attention.

Good luck making a decision.
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.
#24354 09-24-2007 10:44 PM
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Thank you Minnie, I will consider the re-radiation thing.


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24355 09-24-2007 11:37 PM
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I agree with Minnie. If my cancer had been Stage 1 instead of stage 2 and did not have the risk factors it had, I would definitely not have had radiation. I am someone who had a very hard reaction to the radiation and there's no question it has affected my quality of life (though there is still plenty in life that I enjoy).

Francesca, are your doctors wh want you to have radiation giving you a reason for why they think it's important, even though your cancer was only Stage I?

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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