My Dad was diagnosed with SCC of the tongue in July 2005. September 1st he had a partial glossectomy and right neck dissection. 2 of the 34 nodes removed came back positive for SCC. 34 radiation and 7 chemo treatments later, he finished up in early December. On 3/6 his tongue was biopsied again due to pain and swelling. The cancer is back and the tumor stretches the whole way down the side of his tongue (mid mouth to the base of the tongue.) The Dr at Univ. of Pittsburgh Medical Center sent him for a PET/CT scan on Friday night and said that if the cancer has not spread to other areas of the body we will do a full glossectomy with tongue reconstruction, left neck dissection, and insert a PEG tube and trach. He went on to say that if it has spread it is non-operable and terminal. We are waiting on the results of the PET/CT scan and obviously on pins and needles. We left the Dr's. office on Friday feeling like we just heard my Dad's death sentence, but now I am not so sure. Even if this has spread, is it really "terminal?" Should we go to Sloan-Kettering, John's Hopkins or the Mayo clinic??? Has anyone ever heard their doctor tell them they are going to die and then STILL fight and win??? We are looking for hope here; we want to fight this monster!

There have been thousands of cases of unexplained permanent remission, when a terminal diagnosis has been issued.
I am currently back in treatment for recurrence(SCC).
Sometimes even if you cross all the T's and dot all the I's the 1st time around and still have a recurrence. It is no ones fault it is fate.
But fate doesn't mean TERMINAL.
God Bless
Darrell

JillandDad,

Fight it with every weapon at your disposal. As far as going elsewhere for treatment, I've been treated by doctors that were trained at the Hillman Cancer Center in Pittsburgh. I had all of my surgeries and treatments, both chemo and radiation done at the Washington Hospital. My treatment plan came from Hillman though. I had choices of where to treat, my company even offered several other options for treatment. I chose to stay home, in the area. To each his own I guess. I just felt comfortable with and more importantly felt a level of trust in the doctors that I had.

Whatever path you choose to go down, Fight as hard and as long as you can.

Good luck,

John

At the risk of bringing down the wrath of the whole OCF membership on my head, I am going to ask the following questiona of Jill. #1. How old is your Dad? under 70 or over 70? #2. Has anyone really explained to the both of you the full ramifications of the surgery they are proposing? i.e Quality of life- #3. How important is the above to him? Amy

Jill, I just reread your posts on another topic and see that your Dad is in his mid 60's.Same age as my husband. Altho my questions still stand, I think the most important one is about addressing quality of life [and who his support system will be]and does he fully understand what they are proposing and how that will affect him long term. Amy

Amy -

Yes, my Dad will be 65 on the 29th. To be perfectly honest with you, we don't fully understand the total glossectomy and how that will affect his quality of life. We DO need to talk to the doctor about that before we decide for sure. What my Dad DOES know that is that he wants to live. They told him that besides the ENT surgeon, there will be a plastic surgeon there to to "reconstruct" his tongue. Can anyone give me any insights into that? Amy, did you husband have his tongue removed? I see he had SCC on the floor of his mouth with a recurrance. Any insights and opinions, as difficult as they may be to hear, I would be open to. We are still waiting on the results of the PET....hopefully today.
God bless you all.

JillandDad,

I understand full glossectomy & recurring cancer. Had stage 1/2 tumor removed from tongue Nov 03, recurrance late Dec. 03, by time of surgery 3 Feb 04, cancer had involved anterior 3/4 of tongie and started to involve pharynx. Surgery lasted 12 hours and it was touch & go. Subtotal glossectomy, forearm free flap reconstruction and Pharyngoplasty among other things. PEG and trach. Lost trach in March 04, but still have PEG. When a near total or total glossectomy takes place, the reconstructed "tongue" looks like a tongue but is stationary at floor of mouth.
Impact on quality of life is great but varies from patient to patient. My speech is poor even after a palatal prosthesis and I still need PEG since my therapist said I sould use a syringe which "dumps" liquid at back of mouth since "tongue" doesn't move. After a year of therapy and two esophagus strechings, I use syringe to supplement my PEG by oral intake of mostly fruit juices and occaiional shake.

However, I know of two others who have posted with more success in better quality of life. Without protecting privacy of the posting, here's an excerpt=="... I am 18 months post rad/chemo but first had surgery to remove my whole tongue. I am able to talk pretty darn good (use a palatal drop prosthesis) and haven't come across anybody who can't understand me. I work full-time for a major corporation and my speaking ability hasn't prevented me from doing my job. I don't enjoy talking on the phone like I use to but that's just another one of those adjustments I've had to make of my new life. I'm also able to eat just about anything (steak, chicken, seafood, veggies, pasta) except for breads, cookies, chips, cake (all the good stuff!). Even the "forbidden" foods mentioned are doable with a LOT of effort but I find it's not worth it." This person had PEG removed less than 9 months after radiation!
So QOL does vary and perhaps he would adapt better than I have so far. Also, I am very lucky to still be cancer free. So don't give up.

Jim Haucke

Hi JillandDad,

Going back to your original question, with such a serious prognosis it would probably be a good idea for your peace of mind to get a second opinion and the CCCs you mention would all be possibilities.

There are a number of clinical trials available for those who have failed primary treatment -- several for advanced and recurrent oral tumors are available at Hopkins and Sloan, for example, which are using new drugs. Both hospitals have web sites where you can get contact information -- when we went to make consult appointments at these two centers after my husband was diagnosed, they were able to see him in days. They will want copies of medical records and any pathology samples, scans etc. as well as a synopsis of his treatment to date.

It well may be that a second assessment will present the same options (and prognosis) but it will help eliminate the fear that you did not do everything possible.

Best of luck,
Gail

Hi Jill,
My husband (45 y/o) had total glossectomy, partial laryngectomy, and radical neck dissection in April 2005. Still has trach and Peg. Dr. reconstructed a "neo tongue" feom thigh muscles and nerves. send me an e-mail if you'd like more info, and God Bless.
Doreen

Hi, Jill, just got time to catch up on posts here. My husband has had the front 1\2 of his tongue removed and part of floor of mouth and jaw bone. His remaining tongue is tied to the floor of his mouth. It is hard for him to speak and thus far after this 2nd surgery, he can only swallow very small sips of liquid-everything else is through the peg. He's lost about 40 lbs. since the 1st go round and does not feel good much of the time. We are hoping for major strides forward after he recovers from chemo. I'll be hoping the best for your Dad. Amy