I was diagnosed October 28, 2008 with SCC Base of Tongue. As each test and call came, the news continued to spiral downhill. Final diagnosis is SCC Grade 2 T4 N2 M1, inoperable and incurable. Until October 20th, 2008 (the date of biopsy) I had "never" been hospitalized. I am 68 and considered myself in very good health. I was still working until this diagnosis. I have never smoked, nor do I drink. My oncologist feels that with the advanced stage of the SCC and the metastasis in my chest, I have only months....maybe 2 years max, if I'm lucky and beat all the odds. I have received 2 rounds of Taxol & Carboplatin chemotherapy and will receive another on January 12, 2009. Doctors are still undecided whether or not radiation will be added to my treatments. CT Scan will be done January 5, 2009 to determine whether or not the tumors are shrinking. Then the decision will be made about the radiation. I am interested in hearing from anyone with similar advanced stage SCC diagnosis and their prognosis.

Bob Smith

Bob, welcome to OCF. Im sorry to hear of your prognosis. Have you gotten a second or third opinion? The founder of this site, Brian Hill had stage 4 oral cancer. His inspiring story is available to read on the main OCF pages. Please ask questions there are many members who can give you advice and support.

Sorry to hear of the report you have been given. Just remember - a prognosis is an opinion and many have lived well beyond all hope ever given them and done well ... Ultimately we all have our time on earth and when it comes to an end, it is up, with or without a diagnosis of any kind.

It is nice to meet you, I just wish it was in another place and for another reason .. but while you are here, feel free to ask away and we will all be here to support you as we can.

God bless.

Agreed that it would not hurt to get another opinion. There have been many threads on this board where patients have found a new treatment, different treatment or clinical trial. Tom Roussel would be one who is dealing with metastasis to his liver through a clinical trial.

Doctors give their "best guess" as to prognosis, but they are not God (even if some of them think they are!). Welcome to the Board, and we will do all we can to help you.

Donna

Bob,
I live not far from you. If you haven't already, I would get a second opinion from Stanford or UCSF. Getting treatment at a comprehensive cancer center is your best hope.

Gary - thank you so much for the quick response to my posting. It does help to be able to chat with those that have gone through or are currently going through, the same thing as I am. Needless to say, it brings life as you know it to a stand still.

I did meet with the Tumor Team at Stanford Cancer Center in November for a second opinion, confirmation of the diagnosis and their treatment recommendations. Everything I already had been told was confirmed and they suggested that radiation be held for now. Since it is considered systemic and very aggressive at this point they said we needed to go after it aggressively with chemotherapy. If there is response from the chemo and the tumors shrink, then they would discuss radiation.

Thanks for the reply Donna - We did go to Stanford in November to get a second opinion from the Tumor Team there. They didn't give us any more hope about treatment for advanced SCC than we already had been given. It was at least helpful to know the diagnosis was correct and nothing else or any tumors had been missed in the scans, etc. Time is of the essence and there's no room for error as he is already in the last stage of the last stage (4c).

Hope you are doing well and Happy New Year to you.

Thanks Rita - I am going to remain optimistic. That's all I have left to hang on to. It's just so hard to understand that I was walking around in such an advanced stage of cancer and had no symptoms. Not even weight loss. The Stanford Tumor Team was also surprised at my health at this point. It is unusual for someone to be non-symptomatic at this late stage of cancer.

Thanks Christine - I am going to read Brian's story when I finish this reply to you. So far, I haven't found anyone with the late stage that I have, although I'm sure there are many. I would love to read their story and outcome. Is there any easy way of finding/searching for people on the site that are in the same stage as I am? We did get a second opinion from the Stanford Tumor Team.

There isn't a simple means to search by staging. The data base isn't set up to do this.

I was doing a search about tongue cancer, and came upon your post. A few months ago, my mother was diagnosed with tongue cancer, that had progressed to her lymph nodes, and to her lungs. It has been very progressive as well, also not operable or curable. She did not smoke nor drink. She did have ill fitting denture, which could have contributed to it, according to some web sites. Her treatment drugs sound similiar, and the radiation was placed on hold, depending on how she responds to chemo. She has only had one chemo treatment, but has had various complications. She was also working and in good health, until Early December 2008. Her tumor grew very rapidly and she has a trachestomy for breathing, and a feeding tube for liquids and medicine. We have heard different things regarding a prognosis - to calling relatives immediately before the trach, to calling in hospice, to seeing what happens with the next chemo. It can be discouraging with so much digression so quickly, and not knowing what will happen. At the same time, I don't think anyone really knows, and we hope we will have more time with my mother. The memories the last few months have been amazing, yet heart wrenching. It was comforting to find a post so similiar to my mother's condition. My heart goes out to you. This isn't an easy journey.
Elissa, daughter of cancer patient

Hi Elissa - nice to meet you but, unfortunately this way. Hope your Mom is hanging in there and doing okay. I would love to chat with you about her story if you don't mind or if you just need someone to chat with. I've had a hard time finding anyone with a case similar to my husband, Bob. You are definitely right that his is not an easy journey. Seems SCC can be pretty aggressive. As I am, you must have been horrified to hear your Mom's cancer was already in stage 4. Seems she was diagnosed just a month ago and you've already had to call in Hospice...is that right? That seems incredibly fast! I live in Fremont, California. My number is: 5xx-xxx-xxxx. Feel free to call anytime you want or need to chat.
Brenda Smith (wife of cancer patient)

Brenda, I removed your phone number to protect your privacy. I strongly suggest you use the private message or direct e-mail instead of placing your phone number for the whole world to see. (including those pesky snake-oil peddlers)

Mark

Brenda,

I'm sorry that you and your husband are going through this...It's never easy hearing stories like yours...You two sound very strong and loving.

Brenda, I removed your phone number to protect your privacy. I strongly suggest you use the private message or direct e-mail instead of placing your phone number for the whole world to see. (including those pesky snake-oil peddlers)

This is not to discourage your offer to chat with Elissa.

Contact me if you have questions or concerns

Mark

Thanks Mark for removing the phone number. I will send it to Elissa in a private message. Good catch!!! I don't want to hear from pesky snake oil salesmen. :-)

Brenda

Hearing from snake oil salesmen with cancer cures might not be a bad thing -- It would be a really go opportunity to blow your stack!

Hi Brenda, I'm sorry to hear of your ordeal. I do have a friend with the same diagnosis (different cancer + metz). She was given 3 months. She's been getting chemo tx once a week and is still going strong. She's a year and a half from that prognosis. Looking at her, you'd never know she was even sick. They keep finding new stuff everyday. I'm a 4b but was able to handle a very agressive treatment which with God's grace has kept me here. Don't ever give up, stay as positive as you can, no one knows how this is going to turn out. They can only go by statistics and those statistics are changing rapidly right now. Best of luck you you both and I'll incude you in my prayers, Carol

Thanks Carol - we are trying to keep an open mind about all of this and be proactive at the same time. The more I read the more I realize I don't know. It seems overwhelming to my husband to read about all of this so, I do it and inform him of anything I think might be useful in making his decisions about his treatment plan.

I just wish I could find cases of others that had metastasis to the anterior mediastinum in the chest. I've seen that many have survived even in the 4th stage but none with stage 4c and metastasis to the lymph nodes in the neck and a chest mass as well.

If anyone reads this and has any similar situaton/s to tell me about I would REALLY appreciate hearing about them. I'm desperately looking for hope....Brenda

Hey Pete - you are right about the snake oil salesmen. We all need someone to blow out steam at. Funny! :-)

How are you doing? Brenda Smith

Brenda, You are a wonderful caregiver for your husband. My husband was great while taking care of me, also. I was the one doing all of the research, however. It scared the heck out of me. Please remember to take good care of yourself while taking care of him. BTW Caregivers have ribbon colors, also. They are plum colored.

I am doing "As well as can be expected" as they used to say at the hospital before HIPA -- Now they won't even admit you are a patient!