Hello,
Thank you for this forum.
I have had a painful tongue lesion for 2 months and a painful gland on my neck. I had a punch biopsy yesterday and will review the results and treatment plan with the ENT on Thursday. He didn’t notice neck swelling, but I do.
He suspects at least part of it to be cancerous, with a yeast overlay.
He talked about the range of possibilities for outcomes and treatments.
I’m 60, overweight, with diabetes, back issues and neuropathy. I live alone, and my family and friends are too far, and, given the pandemic and their age, they most likely won’t travel to help if needed.
I’m self-employed, and have my own patients. I’m pretty stunned that I could have cancer and may at a minimum require tongue surgery that has a very painful recovery.
I don’t have my results yet, but the Dr thinks fairly strongly that part of it was cancerous.
There’s so much I need to do to prepare that it’s hard to know where to start.
I feel fear, anxiety and some dread.
When the numbing wore off from the biopsy, the pain slammed me, and my mood dropped considerably.
I’m trying to use good self-care, share with close ones, and prioritize.
But being alone at my age makes this kind of daunting. And I’m most concerned about the pain in recovery.
Thank you for listening. Any suggestions that helped you during your times of waiting are welcome.

Hello Brenshere,I replied to you earlier i don't see it,anyway you have come to right place just don't worry and keep yourself busy until you get results,I was anxious snd scared like you but I got lot of support and knowledge from this very supportive group of great people my new family,read as many posts as you can make yourself more knowledgeable and don't worry it might not be cancer,stay strong we are here for you any questions just ask good luck

Hi Brenshere,

I am so sorry for what you are going thru. The initial anguish and fear with your diagnosis is not easy to process. Having loved ones nearby, zoom, or however, is a big help. I hope you can use facetime/zoom, and get a support group of highly trusted people. It helped me to have a schedule set up with different groups. One day would be immediate family. A couple days later would be high school buds, etc. This was all zoom.

The surgery is intense depending on which process you ultimately need but they did not send me home until I was ready. I ended up getting a partial glossectomy (half my tongue) and all the nodes on that side removed. I had a trache tube for breathing. And, believe me, I would have done almost anything to be out of the hospital after those days in ICU.

Nurses are angels. They did so much to make my experience better. Lean on them, open up to them, they are amazing.

I also found strength in knowledge. I read books. The one about Greg Anshutz is inspirational. Also, I recommend Anticancer (my favorite because it is packed with data and I am an engineer). You can find tons if you like to read.

Good on you for reaching out to this group. You can find all kinds of good support and information here.

Stay safe and keep the faith,
Nels

Oh, one other thing that really helped me...keep a journal. I would wake up worried about this, that, so I would start writing and three hours later I would be surprised at all the thoughts that came pouring out. This went on for months before, during, and after treatment. It really helped. Hope you try it.

Best,
Nels

Thank you both so much for the support! Sorry I don’t know how to reply to each post. 🤷🏻‍♀️
Update: My neck CT scan showed no abnormalities. In the surface, that’s a relief. However, I still have a painful lump on my neck, and my jaw and ear hurt. It could be referred pain, or not.
I see the ENT tomorrow and should get a diagnosis and treatment plan. 🙏🏻
I’m assuming I need SOME treatment because it’s 2 cm, and painful.
Thank you for the supportive posts and suggestions.
I really appreciate it!

If the ENT tells you it is cancer and if the ENT is not at a CCC it is time for you to go to a CCC.

Oral cancer hits only a small % of the population and you will need somebody with specific and extensive oral cancer experience.

Thank you for the tip. I researched it and he is an otolaryngologist. He is board certified and is a member of the American Board of Otolaryngology – Head & Neck Surgery.

Do I need him to be a CCC?

A CC.C is a comprehensive cancer center. An otolaryngologist is an ENT. You do want to find out whether he has experience treating oral cancer.

Thank you. He has several years of experience treating oral/tongue cancer. His patient reviews are glowing, which is comforting.

I’ve been diagnosed w/SCC: T1N0M0, P 16 negative,
Ipsilateral neck dissection for patients with N0 neck and T2+ tumors. Surgery for a partial glossectomy is expected in a few weeks, and a ipsilateral neck dissection a month after that.

Hi Paan
I did get my dx of SCC, and will have surgery on 2/19/21, followed by a neck dissection a month later. That’s the plan so far.

I have felt very fatigued for quite some time and wonder if that was an early cancer sign? The dr’s didnt know why. My fatigue is still very prominent. Although I sleep, I dont feel refreshed.

Hello Paan,
I was also DX with SCC HPV Negative. I had my CT PET Scan completed. They came back clean from what I read but I am no Doctor. I will see the Oncologist, Surgeon, Speech Therpist, and social worker tomorrow to set the treatment plan I know for sure there will be the removal not sure about Chemo or Radiation yet.

keep your head up! Your not alone!

D.Sapien

Hi Brenshere, sorry to hear of your diagnosis but glad you have a surgical plan! For me, the worst was not knowing what's next so I always felt better after my appointments, then I could do research and prepare myself.

There is tons of info here so read through some of the old posts! I had a partial glossectomy with neck dissection back in December so if you have any questions don't hesitate to ask- it's very fresh for me!

Take care,
Martha

Martha,
Thanks so much for sharing and offer!
My PET scan showed some metastasis in my neck, so, it’s good that I pushed for the dissection.
I was hoping for no radiation etc but that may be in the picture.
The surgeries are tomorrow, so, I should find out more on Saturday or within the week for future care.
Thanks again.
I’d love to hear how your progress is coming along.

Hi Bren, hope your surgery went well. How are you doing? I am sorry to hear about the spread, sounds like radiation is a definite possibility! It comes with some challenges but most people here have gotten through it!

In terms of my progress I'm doing pretty well these days, although the pathology of my tumor showed spread to one lymph node with some extracapsular extension (cancer cells invading beyond the walls of the node) so I am currently undergoing radiation therapy and some chemo as well. On week 3 of 6, starting to feel the effects of the rads now (sore and sensitive tongue, dry mouth, limited taste). It's annoying driving to the hospital every day but hopefully any remaining cancer cells are getting zapped into oblivion!!

Aside from the sore mouth from rads I am feeling OK, maybe my energy levels are a bit short but I am still working (from home, self-employed) and I hope to throughout treatment. After surgery I felt very well, and my speech is more or less fine though I do have a slight lisp. I had a reconstruction using a skin flap from my forearm, so that part of my tongue feels a bit tied down in my mouth if that makes sense. I can't really stick my tongue out very far anymore. In terms of eating I just have to be much more mindful and take my time, chew each bite well, lots of sips of water etc. Pre-radiation I was eventually able to manage most foods, but I am back to a soft, easy to chew diet for now.

Keep us updated!

Hi Martha
Thank you for the support and positivity.
I’m struggling both physically and mentally. My pain is in my jaw, teeth and neck, and I have overall body aches. My nephew died suddenly on Sat AM, so his dad who has been taking care of me will need to go home tomorrow.