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#18312 07-23-2005 11:05 AM
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Hi Dave,

Welcome! but sorry you have a need to be here. I figured I'd throw my 2 cents into the mix here. I wish I wasn't so medically "challenged" and was more knowledgeable when it comes to reading my report from surgery but what I do read and understand is pretty scary. I was diagnosed as stage IV, base of tongue. I had the surgery first - a total glossectomy - right and left neck dissection (5 positive nodes on right side), a feeding tube and trach for 8 1/2 months. Surgery was followed by chemo (cisplatin) and 37 rad treatments (not IMRT). I also had the daily shots of amifostine. The good news is I am 18 months post tx and doing a hell of a lot better than my doctors thought would be possible. With the help of a mouth prosthesis I talk amazingly well but being understood on the phone takes more patience on my part and the part of the listener. I am also able to eat pretty normally (with the help of a lot of water) except for dry foods such as chips, cookies, cake, bread, etc. I work full-time and have taken up an exercise class and 2 mile walks. I guess what I'm trying to say is that although my life is FAR from perfect or even normal, I do have a life. Your decision is a tough one but it looks like you've seen knowledgeable doctors. In my case I don't feel that I made the wrong decision. Unfortunately, even though many of our situations are similar, no 2 are alike. Your journey, whichever you choose, is a rough one but know that there are many here who have walked before you. Please keep us informed as you push ahead. Oh ... and I'm sorry I've rambled on so much!!!

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#18313 07-23-2005 12:44 PM
Joined: Oct 2002
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Dave,

For what it's woth, my 28 year old non-smoking, non-drinking daughter had a base of tongue tumor. She had extensive surgery, followed by radiation. She only lost a small portion of her tongue since the tumor was on the base, not on the mobile tongue. Because of that, she had minimal disfiguration and only a slight lisp from the surgery. Unfortunately, the treatment failed and she had a recurrence and died several months later.

Although the surgeon got clean margins and her tumor was well-differentiated with no extra-capsular spread and no peri-neural involvement, she did have 4 positive nodes. Evidently, it had already started to spread and in that case, surgery was not the best option. If any of your "lit up" areas actually contain cancer cells, then surgery may not be your best option either.

Every case is different and there is no way to know if she would have responded better to radiation and chemo instead of surgery and RAD. There however have been many people here on the forum who have had success with RAD and chemo. There have also been a handful of young people here with tongue cancer who had surgery and RAD who did not survive. Again, every person is different, but based on this info and my personal gut feeling, if I were to be diagnosed with SCC, I would choose RAD and chemo before surgery.

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.
#18314 07-23-2005 01:25 PM
Joined: Mar 2004
Posts: 117
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Dave,

I am a non-smoking, social drinker, dental hygienist. Two years ago, at the age of 41, I was diagnosed with stage 1, poorly differentiated SCC of the tongue. I had two separate lesions, both on the right ventral surface (underside) of my tongue. My treatment consisted of a partial glossectomy (about 25% of my tongue was removed and I did not have a flap) and a modified neck disection. 48 lymph nodes were examined, all were cancer free, clean margins on my tongue, so I did not need radiation therapy. I saw four head and neck surgeons for opinions before my treatment, three at CCCs, and all three recommended surgery as the first line of treatment, however, my tumors were small and stage I. But all of them told me that they could remove up to 50% of my mobile tongue and my speech and swallowing would not be affected in the long term.

Immedialtely following my surgery, I couldn't eat solid food for about three to four weeks and then gradually within the next month I was eating normally. My lower lip was paralyzed for almost six months from the neck disection surgery, but it did recover and my smile is back to normal. My speech was pretty slurred for the first three months, but by about 8 months after surgery, everyone suddenly was saying that my speech was 100% back to normal.

Two years later, unless I tell someone and point out the scar on my neck, no one would ever know that I had had tongue cancer.

Good luck with your decisions.

Barb


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
#18315 07-24-2005 02:11 PM
Joined: Feb 2005
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Dave, I thought I'd throw in my 2 cents too. If you look at my "signature" here, you'll see I had all of the above; surgery, radiation and chemo. However, I had Stage II cancer and had the surgery first because it was possible at that point that that would be the end point of my treatment. I had approx. 30% of my tonguie removed--it was on the left ventral side--fully visible--not base of tongue. I didn't have any kind of flap. From then until when I started rad and chemo was about 2 months and in that time I was talking almost completely normally again (I had an occassional lisp but I later lost it) and had moved from eating just smoothies and shakes to eating almost everything (I could handle dry food such as breads with water in my mouth or olive oil or dressing on the bread--probably I could even have done chips with dip though I didn't really try.

They took out 28 nodes during the neck dissection part of the surgery and there was no cancer in any of them. However, it turned out I did have some aspects of the tongue tumor that apprently put me at more risk of recurrence so I opted for an aggressive treatment of radiation with chemo on top of the surgery to be really sure all the cancer cells were gone. If you read my posts elsewhere, you will see that since that ended I have been unable to eat anything at all due to mouth pain and drymouth from that treatment. I assume eventually that too will end (I certianly hope) but truthfully it seems to be much more of a hurdle to heal from that than from the surgery.

Also, an argument for getting surgery prior to rad (or rad and chemo) is that your tissue heals much better and faster before radiation than after. Good luck with the decision you make. This board has been a real sanity saver to me since I am not being treated at a major CCC (although my rad oncologist is from one--long story) and I have ahd to be very proactive about getting what I need. Also, people here always know what you are going through when the going gets tough and man is it nice to know there's a group of people somewhere who have "been there and done that" as they say.

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"
#18316 07-25-2005 02:24 PM
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Hi Dave,

I read your post and thought I would tell you what they did for my sister Marcy. She was diagnosed with I believe a stage 2 SCC of her lateral tongue, she was 31. They did a partial glossectomy and neck dissection. She was very scared about losing part of her tongue but she could speak very good after she healed. She did have 1 postitive lymph node. They chose to do nothing else for Marcy afer her surgery because she had only one positive lymph node. NOW I can't even begin to imagine why her doctors wouldn't have recommended aggressive treatment.
Marcy had a CT scan 3 1/2 months later that showed her cancer had spread extensively throughout her neck. THEN she had chemo and radiation and also a radical neck dissection.
Nothing could stop her cancer at this point. I suggest you treat the cancer as aggressive as possible. I believe Marcy should have received rad and chemo immediatly not wait those three months. Marcy felt something wasn't right from the beginning but her doctors didn't always listen....
Anyway, that is some of Marcy's story.
I wish you the very, very best as you make your decision.
Bless you,
Michelle


Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
#18317 07-25-2005 05:12 PM
Joined: Oct 2016
Posts: 284
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Dave,
My mom ended up having surgery twice and it was awful for us to see our usually very healthy 54 year old mother with a trach and a feeding tube in her nose (which she despised). She had a lot of trouble speaking at first but only had one speech therapy session and she speaks pretty well now considering she lost about 75% of her tongue. Her surgeon took what was the front of her tongue and made it the side of her tongue so she had to completley learn how to eat and everything all over. She had no flap and she can practically eat and drink anything now quite normally but she cannot stick her tongue out so I can imagine that a passionate kiss is not very possible anymore. That might sound funny but for somebody your age probably pretty important. I think if given the option now she probably would have avoided the surgery because it really made things difficult once they added the chemo and radiation in the mix.

My prayers are with you. Please feel free to ask anything you like.

Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#18318 07-26-2005 11:44 AM
Joined: Jun 2005
Posts: 81
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Dave,

You asked persons who had tongue surgery what was it like short term and long term. Depends on how much of tongue they take.
I'm lots older (69) so I can't imagine having this at an early age. Just ain't fair!
First tumor was on side of tongue and I waited 4 mos. to have removed in Nov 03. Took about 30% of tongue but I could eat and speak just fine. Nodes had no cancer so I was released a month later with no rad. seven weeks after 1st op, I noticed growth at base of tongue. Since it was holiday season, didn't get diagnosed until mid-Jan 04. Op was Feb 4, 2004. Cancer had grown aggressively to where they took almost 85-90% of tongue with forearm flap, a pharyngectomy, and had to break jaw to get at cancer. Had 36 rad until May 04. Trach in until mid-March 04 when it fell out on its own. Still have PEG tube which has been a life saver. If I had to do it over again, I would have insisted on rad right after 1st op in Nov 03, but its too damn late.

Its no question that extensive tongue surgery is a quality of life destroyer. Speech isn't worth a damn even though I had therapy and I'm getting to swallow liquids now through a syringe because I don't have a tongue.

I would hang on to that tongue as long as I could. I also add this is a great site. I never would have learned about a palatal prosthesis which I am looking into thanks to a brave member, nancyt. This is one brave lady who had a total glossectomy (mine was subtotal)who was off the PEG tube 8 and 1/2 months after treatment. She is the inspiration that keeps me hoping. Right up there with Lance Armstrong.

You are a true inspiration, Nancy. God Bless!

Dave, keep asking questions and push for options and answers. Take it from an old guy who found out the hard way.

All the best,

Jim Haucke
________________________________________________
T4N0M0 (Stage 4) SCC base/anterior of tongue, pharynx

#18319 07-26-2005 12:49 PM
Joined: Jul 2005
Posts: 26
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Thanks so much for all the advice everyone. I am committed now to keeping my tongue intact therefore I'm going with the chemoradiation and hoping for the best. It's tough to make these decisions and never thought I'd be making them at my age. But I've chosen the path and am hoping for the best. Today I did the first day of radiation and yesterday I had my first day of chemo. So far so good. I'll keep you posted on my progress and will continue to read with great interest how you are doing with yours.

Best,
Dave


Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
#18320 07-27-2005 06:17 AM
Joined: Jul 2005
Posts: 207
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Hi Dave,

I too had SCC of the tongue. It had also moved to two lymph nodes. I wanted surgery ASAP but my ENT said no because of your valid concerns. They cannot say for sure how deep the tumor is. I had a PEG tube inserted, (you will need this), and had the chemo and radiation. 35 RAD treatments and two rounds with 5FU plus two or three other chemos over a six week period. I am now cancer free. It is a tough go, but I needed no tongue reconstruction. I strngly sugest the chemo/RAD route first and some disection after to get the lab pathology results. There is also risk of spreading the cance rduring surgery from what I have heard.

Good luck,

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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