Hi everyone. I was just diagnosed with Squamous cell cancer of the tongue that is moderate to poorly differentiated about 12 days ago. I'm still in the process of staging and scheduling surgery. The surgeon said that, based on his preliminary evaluation, I will probably need a hemiglossectomey to remove about half of my tongue, followed by radiation. That in itself is very scary. But I'm seeing things on this site that scare me as much and are very discouraging. I see where people have listed their disease history. So many of them seem to show multiple recurrence of the cancer. I didn't think to ask my surgeon about it but, is it common to become a perpetual patient after the first diagnosis and treatment? Any help is appreciated.

Marv, the signatures of those who are most frequent posting members is NOT a good place to find recurrence statistics! Most OC patients do NOT have recurrences. They are some of the more fortunate ones. They get diagnosed, struggle thru surgeries and/or rad treatments, slowly regain almost all of their pre-cancer functions and return back to their regular lives. The people who post most often usually are the ones who cancer hasnt been as "kind" to, unfortunately (and also luckily) Im one of those OCF members. Theses are the ones who have their daily struggles just to get thru the day, their lives are very far from what they once were and these members usually are the ones who no longer go to work everyday anymore.

One thing to take in and always remember about our online forum... everybody is different and will respond to things in their own unique way. Even if you found someone who has a similar tumor location, size, stage and they are generally similar such as being the same age, sex, previous cancer, etc, they still arent an equal comparison as each patient is an individual and will respond in their own way, they have their own medical history, allergies, strengths and weaknesses, etc. Try not to let the stories you read sink in so much. Im posting the link to our main OCF site where you will find page after page of info without the scary stories. Maybe you would find it a little easier reading the medical facts instead of the more personal stories and Q&A. Try learning from all the things you are reading, even if you are just learning what to avoid. By educating yourself about oral cancer, you will become a much stronger advocate for yourself.

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available. They use a team based approach where all the experts are on the same page. They work together to create your individual treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. Remember your physician and medical team work for you so choosing the right team and facility are crucial.

List of CCCs

OCF main site --- UNDERSTANDING

Thanks Christine.Unfortunately, my dentist and the oral surgeon he sent me to misdiagnosed me. I wasted over two months with them and the cancer has spread quite a bit. I think I have a good medical team now. So far, they have been good. I admire the people on here who have gone through this and seem to have a positive attitude. Hopefully I can maintain (or get) that kind of attitude too.

Im very glad you are finally on the right track!

Focus on what is within your control and avoid the "what if" thinking as much as possible. Many patients and caregivers too need more help to handle a cancer diagnosis. Many will need anxiety meds or some temporary help talking with a therapist to get thru it. Theres nothing wrong or to be ashamed of if you feel you're trying your best and you just cant get to a more positive place. Talk with your doc and ask what the treatment facility has available to help you to cope with everything. Depression runs very high among OC patients. Anyone who has not always been the most positive thinking, they probably should have this chat with their doc sooner and not wait to see how things go. You cold also call the treatment center and ask a general question about what they offer for counseling their cancer patients. Most places have a group who specializes in working with cancer patients. It cant hurt to check it out. Many of the meds take weeks for patients to feel their full effect.

I'm curious if anyone else has had this problem. I'm still waiting for treatment and my pain level is rapidly increasing. Not so much on my tongue, but on my teeth on the side with the lesion and on the roof of my mouth. The roof of my mouth feels hot and my teeth on the side with the lesion are very sensetive. I've mentioned it to the surgeon whose going to do the surgery and he just said he could give me stronger pain meds. Also, my appetite is gone. I've lost 12 pounds in about two weeks. I take a few sips of soup or of a protein shake and I'm full. Is this unusual? Thanks

I’d suggest you seek help from your PCP if you’re having difficulty getting an appointment with your surgeon. We had a lot of help from our family physician.

MarvB,

I’m sorry for your treatment delay, and it is an issue at some places! I think they’re trying to keep it a certain time period, but don’t want to quote the exact time, maybe 30 days. I think I’ve waited longer! There are other factors involved, and hopefully you’re kept in that time frame.

Pain is often a sign of the cancer or surgery, even treatment, and disrupts your appetite. I did my best to alleviate this, besides telling my doctor, taking opioid pain meds, otc oral care products, brushing with a soft toothbrush, eating soft foods or just drinking nutritional drinks. Usually treatment alleviated the pain, but as you did, tell the doctor, and staff, everything.

I hope you have help at home coping with everything? Besides coming here, there are local support groups and professional counseling to help deal with this cancer. I can say you’re not alone here!

I hope this helps, and good luck!

Thanks Paul,

I hope things are going well for you. I do have help at home from a great wife and a lot of support. I have people that I haven't seen in a while offering to help and support me. It's very humbling. I have found though that, no matter how many people you have loving and supporting you, this is a very lonely journey.

I have another question that I'm sure many of you can help me with. Believe it or not, the trach tube is one of my biggest fears. I'm claustrophobic. I can't even watch movies about someone being buried alive because I feel like I'm suffocating. My question is, what does it feel like that when you can't breath through your mouth or even swallow saliva? If it's like I imagine it is, I know I'm going to have a panic attack like I did trying to watch one of those movies.I had to get out of the theater and take a lot of deep breaths. I know it probably sounds ridiculous to some people but I've been this way all my life.

MarvB,

I’ve avoided a tracheotomy after surgery a number of times, although it was a possibility after some of my surgeries. It wasn’t until I had a mandibulectomy in 2017 that I needed one. I wasn’t too happy, and was a concern of mine too, especially how to communicate.

I had the iSpeak apps on my phone, but that proved a waste because they took my phone away in surgery, and recovery seemed like a day! Eventually, I had no visitors, I used my hand lingo to get a writing board, as the iPhone was too small, and my vision was blurry. Eventually, I eased into the writing board and started communicating somewhat with my scribble. By the 4th day I was already in the step down unit, and my surgeon felt the swelling was down enough to put a speaking valve in, and was so much easier to communicate.

Honestly, I was so out of it at first, and then trying to communicate, I forgot about the trache fear. The trache was removed as I was discharged on the 7th day to a nursing home, my request, but the hole in my throat never fully closed until a month later.

That was my experience, but it was temporary. The moral of the story, make sure you have someone there to communicate on you behalf, and give your speaking supplies or whatever else you need!