Back in 2002 I was diagnosed with squamous cell carcinoma of the tongue at age 28. It was stage T2N0M0. I had a partial glossectomy, radiation, and amifostine and was declared cancer-free.
Almost ten years later, I have a second tumor (a new one) in the same site. It is very aggressive and crossed the midline of my tongue. My trachea and lungs also lit up on the PET scan; I have not yet learned the results of my bronchoscopy and lung biopsies.
I just had my PEG tube installed last week. On Sept. 1 I am scheduled to have a glossectomy and radical neck dissection with a chest-muscle rebuild of the tongue.
I have never used tobacco in any form, and prior to my first diagnosis I didn't drink alcohol. (I started having a beer or two every so often after being diagnosed, because life is too short not to enjoy myself.)
I used to be a social worker before they fired me for being in the hospital for too many days. I used to be a candidate for elected office, but I suppose I can't do that without a tongue.
Shelly,
Welcome to OCF, glad you found us, sorry you had to my dear.
Generally younger non smokers/drinkers are found to be HPV+ as HPV is now the leading cause of Oral Cancer. PETs are notorious for false positives so I wouldn't get to worked up over the hotspots and just wait for the biopsy results.
What I would say is that in the present political environment a person without a tongue would probably be more welcomed then the forked tongued manipulators the voting public is used to, so don't count yourself out, it's all on how you spin it. Plus there are many here that have had total glossectomys and do very well speaking with work. I've never been one to accept limitations without extreme testing
Anyway, keep your spirits up and welcome to these forums! You'll find great information and support, we are a pretty tight knit community here.
Eric
Shelly:
I am so sorry you had to join our group, but you are at the best place possible to get information from others, so, welcome. I'm sure tomorrow you will be getting replies from others on the Forum - they just seem to jump right in when they read messages like yours. It's sad that this happened after all those years, and scary. There are a few recent recurrences from others after many years that I am sure you'll be hearing about. Just wanted to let you know your message was read and others will join in soon.
An OC friend,
julieann
Shelly, it would have been nice to see your post in Cancer Survivors thread instead of here. Unfortunately, it has come back and you are here.
I believe you are scheduled for total glossectomy with Radical neck dissection. My father recently had radical neck dissection for recurrent cancer and he too had chest-muscle rebuild. Chest will take longer to heal and more prone to infection, so take good care. Depending on your current status and previous treatment, you'll be further planned for chemoradiation or radiation or chemotherapy alone.
Rough road ahead for you, hope somebody is there with you to support you. Wish you luck.
Hi there and welcome! I agree pet scans are notorious for false positives! Hopefully it's not cancer! Please keep the faith until you get definite results, good luck on the surgery - there are a few people here who've had total glossectomies and are able to speak and eat try not to despair! Healing vibes to you!
I have to say I no longer rely in PET scans as I had a false positive back in December and they removed a portion of my tongue to hear it was radiation damage. I am so sorry you have to join us after so many years. You came to the right place. Lots of amazing people on here that have a lot to offer.
Welcome and sorry that you have a recurrence. HPV is most likely NOT associated with your cancer but your cells can be tested. A few years ago we started to see a new subset of OC patients; those without a smoking history, younger, primary in the forward part of the tongue and HPV-. No one in the medical community has come forward with a cause so far to my knowledge.
I still believe that chronic irritation may hav something to do with this cancer!
Cheryl,
Certainly possible but this new subset really just started showing themselves a few years ago and I doubt people just started irritating their tongues until recently.
Hi Shelley! Welcome to OCF! I am so sorry to hear about your recurrence after being well for so many years. I know it sounds very frightening what your doctors are planning for you. Im wondering if you are going to a cancer center and if you have had a second opinion. I know it seems like its very hard to get thru this but you can do it! Ive had oral cancer 3 times and gone thru some pretty rough times but Im now 2 years cancer free and doing very well.
Here is an inspiring story from another OCF member who has gone thru a glossectomy. It shows the true spirit of perseverance! I think you will find some hope in reading about Kate. Best wishes with everything you are facing!
Kates Story
Thank you. I had a biopsy of the lesion on my tongue prior to the PET scan, and they are pretty sure this is SCC again...The lungs and trachea I am hoping are false positives!
Shelly,
Welcome to OCF but sorry you are here. I've also had a recurrence at the same location nearly 5 years after my first run-in with OC. I'm praying that the PET scan is a false positive. I hope your surgery goes smoothly and please post an update when you can.
Welcome Shelly!
Sorry to hear about the recurrence. I'll be praying that the PET scan is a false positive and that your upcoming surgery goes well.
Well, I got some bad news at the pre-surgery Treatment Planning conference. After the latest CT scans were read and the lung biopsy came back, the picture was far bleaker than we had initially believed. I have decided not to go through with the surgery, because it would cause a dramatic reduction in quality of life and function for not many extra months, but instead to go for palliative chemotherapy. I see the medical oncologist tomorrow (Tuesday).
The article about me from the St. Pete Times had a number of factual errors because I wasn't up to being interviewed. Unfortunately, there is no truth to the statement that the tumors had shrunk; my campaign manager was misinterpreting the fact that the surgery time, initially estimated at 10 hours, was re-estimated to be about 3 hours.
Shelly
Shelly, I'm so sorry to hear that. I hope that you will stick around here. The people on this board can be a wonderful source of knowledge and comfort. I will be praying for you.
Shelley, Im very sorry the tests came back with such bad news. Please think it over very carefully before making this huge decision. I know how difficult it is. I was faced with a recurrence and thought it over long and hard before I agreed to have 1/2 of my lower jaw removed. There really can be a good life after going thru something so life changing. Best wishes with everything!
Sorry not sure what happened with my previous post it should have been much longer!. I'm sorry to hear your test results werent good but please don't give up! There are people hee who've had difficult diagnosis and are doing well. I agree with Christine, think about ot before you make such a difficult decision. Hugs and prayers to you...
Shelly, if you have decided not to go with surgery, I respect your decision. However, I would still advice you to go for a multi-drug (Taxane + Carboplatin/Cisplatin + 5-FU)chemotherapy instead of pallative care.
Since you did not have any prior chemotherapy, you stand a better chance to have complete recovery or partial recovery to go with further treatment.
Hoping that you will consider my advice and discuss with your medical oncologist.
Well this news totally sucked!! Only you can make the decision about how to proceed but we are all definitely here to support you whatever that decision is. How unfair life is sometimes. I will keep you in my thoughts and prayers.
Donna