I am a newly diagnosed patient. About a month ago the dental hygienist discovered a white spot on the bottom of my tongue. They had me return in two weeks and when it had not yet healed referred me to an oral surgeon who biopsied the lesion. He lest a little bit of the margin in case it was cancer so that anyone he referred me to would know where it was.

One week later (Monday) I got the news. It is a well differentiated squamous cell carcinoma that is one mm thick. They have referred me to a head and neck surgeon that I will see at Swedish Medical Center in Seattle in about 3 hours.

All of this is really overwhelming me. I am wondering if anybody has experience with Swedish or is there a better facility in western Washington?

What kind of tests can I expect ? How worried should I be ?

Hi..wondering how you made out at your appointment? If I recall correctly, I had the biopsy and a CT scan and blood work prior to surgery. Everything happened quickly.
It all is very scarey, but you can do it. Keep us posted! Praying for you.

The surgeon did an oral exam. He said the spot was extremely small and that this was caught quickly. He said the depth and differentiation is such that there needs to be no scans. I am scheduled for surgery on April 11. It will be general anesthesia and that he will remove small sections an immediately send them to pathology. This will continue until the pathologist sees no other cancer cells.

He says that it will be painful so they will prescribe narcotic pain relievers and that it will be about 1 month total recovery. It should not affect my taste or eating long term.

Should I request that a scan be ordered ? He kept emphasizing that the cancer was caught very early.

Thank you for any support and most especially prayers. I am so afraid.

Dear Another Journey,

Welcome to OCF. Glad you reached out. Tons of wonderful people here that want to help.

The good news is you caught this very early. Oral cancer is much easier to treat when caught early. You are treatable and now also aware so you will be able to stay on top of this. Your dentist and medical team did all the right things up front quickly.

Cancer is a scary, fickle beast but they know how to attack it.

Mine was caught late (stage 4) so I went through major surgery, radiation, and many months of recovery three years ago. I have been back to full bore life for over 2 years. It was a hard rode but I am better for it. I learned to be more grateful for every day and found a faith I never could before.

You can do this. Keep asking lots of questions of your medical team. I found information helped me deal with it. I recommend a book called "Anticancer". It is packed with all kinds of details and research, data, etc.

Stay safe and keep the faith. Keep us up to date and sending more prayers.

Nels

Thank you so much for your reply. I am scheduled for the surgery on April 11. My worst concern at this point is that I will wake up from the surgery and they will have removed most of my tongue. The surgery paperwork I have been provided indicated that I am undergoing a partial glasectomy. Details are that it is less than half the tongue. The surgeon explained that even if they remove a cubic mm it is still called that. Is there any input anyone can provide on this ?

I am also very concerned that the surgeon has indicated that scans are not needed. I hear this from him and others. I keep hearing that this is an early diagnosis and that is good news.

And of course I am hyper vigilant about anything on my tongue now. I think I bit my tongue yesterday when I was eating and of course now I have a little pain. In my mind the cancer has spread. This is how worried I am.

Hello another journey,your cancer was caught super early so don't worry mine spread to 2 lymph nodes and 18 nodes total were removed 3 years ago I am here doing fine after neck dissection radiation and chemo so don't worry your journey will be easy compared to lot of us here read as many posts as you can Goodluck.

It is quite scary when you read the details and then suddenly it seems like the scope could be much broader than expected. They took half my tongue and my speech is now clear and I can manipulate foods fairly well again. I do have a small lisp and it did take months to recover to this point. My surgery prep included knowing they were removing about half my tongue, rebuilding it with skin and artery from my left forearm, performing a tracheotomy, skin grafts, feeding tube, etc. The medical team made it well known what they were planning to do days in advance. From what you described above, I don't think you are anywhere near this level of surgery or recovery.

As for scans, you may want to get a second opinion on that. Not much risk in a scan just some cost and time. But, I really have no knowledge of the value of a scan for early detection.

Another thought, I was lucky enough to find a few people that had recently gone thru similar surgery. I spoke with them so I could ask all kinds of questions. It really helped. The medical team was able to connect us with each other. Maybe they can connect you with someone that had a similar diagnosis. I would also be happy to speak with you live even though our procedures sound quite different.

April 11 - you got this. Keep us up to date.

Best,
Nels

Thank you for the suggestions. I have so much going through my head right now. I have been doing a lot of reading on this board and I realize that my cancer was caught early as far as we can tell at this point.

One thing that puzzles me is that cancer treatment has no equivalent of a primary care physician. It seems that you go to a specialist based on the type and body area affected. It is just so strange. For tongue cancer it seems surgery is the first step. Then you are referred to radiation or chemo if necessary. Is this how it works ? Do I rely on this head and neck surgeon to refer as needed ?

I want all the tests possible yet at the same time I’m afraid to have a bunch of tests for great of what else may be found. I want to know but I don’t want to know.

For those of you who have done this , how did you navigate all of the steps ? Did you rely on the surgeon or a social worker or your primary care physician ?

I went to ent who did biopsy and refered me to surgeon after more scan to make sure they are getting all cancer while they are doing this so more tests and scans are normal and some people need chemo and radiation some don't.

Please don't wait do these tests fast and surgery these cancers are aggressive do it asap

My medical team made me aware of the process by which they determine their recommendations. One of the most critical steps was a review by the cancer board. After all my tests (biopsy, scans, etc) were completed, all that information and my main doctors (Head and Neck, Oncologist, etc) met with the cancer board. In my case, this board met on Mondays. They would review my case (and others) and come up with agreement on staging, prognosis, and my recommended treatment.

Agree that for tongue cancer, surgery appears to be the first step for most everyone following traditional western medicine approach.

Getting the scans now rather than later could be key. In my situation, I knew I had something going on, my first dentist said "let's keep an eye on that" and I switched jobs and was lazy about getting a new dentist. If I had followed up quicker my process would have been much easier, better prognosis, etc.

As far as how did I navigate it, I told my cancer coordinator (not a doctor but an administrator) that this was my top priority and call me 24-7 if a spot opens up for any of these tests, appts, etc. I will leave whatever I am doing and come immediately if needed. From positive biopsy result to surgery was about 2-3 weeks. I think fairly impressive considering all the steps I went through (4-5 scans, 4-5 doctor's appts, cancer board, etc).

I am on my way to the surgery appointment. Check in is at 9 am Pacific and the procedure is supposed to last a little more than an hour starting at 11. I will post an update most likely tomorrow. Please send prayers this way !

You are not alone we are with you on this journey.

The surgery was completed yesterday. I was very relieved when I spoke with the surgeon. He had me sign an informed consent and the name of the procedure has been changed to removal of malignancy from right central tongue. He said that he anticipated very little was going to be removed. He even commented that this would most likely be the smallest or one of the smallest cancers he sees all year. I know that I need to be grateful for the very early diagnosis that I have been blessed with. I just think that somehow I can not accept that I have been this lucky to have caught this so early. It is almost like I feel that how can I be so lucky when I have read what so many others have had to endure.

I was out under general anesthesia. I was very scared because the anesthesiologist said that they would need to intubate me. That was concerning. And of course I was afraid of general anesthesia. I am sure that this is my control freak personality. I know that I need to work on this control freak nature if I am going to successfully get through this.

The surgery was completed with the following report about margins according to the pathologist:

Right lateral margin tongue negative for dysplasia or malignancy.

Tongue medial margin negative for dysplasia or malignancy.

Tongue deep margin negative for dysphasia or malignancy.

Those are the only three margins that are reported. Is this all of the margins ?

The surgeon notes are:

“The index tumor was identified on the central aspect of the right tongue. Using needle tip electrocauterization a partial glossectomy was conducted into the intrinsic muscles of the tongue. The ventral lingual vein was cauterized with bipolar cautery. The periphery and deep basin of the defect was reexcised for margins control under frozen sections analysis. All margins were negative “

According to the surgeon there is going to be another pathology report in a few days that will determine the stage of the cancer. At least that is what I think will happen. Does it sound like I got this correct ?

Thank you all for your input and support.

Glad to hear you came through the surgery well and the reports sound good. Yes, it took 3-4 days (or more sometimes) to get the final report on the tumor. It has to go to a lab for a more detailed analysis. How are you feeling? Eating? Drinking fluids? Home?

Thank you for asking. I am home. Eating is still difficult. I get food stuck in the bottom of my mouth and I have to be very careful to keep it clean. I am able to swallow fluids so I am going to concentrate on eating non chunky soups for a while. My tongue is pretty swollen still. The pain is tolerable and I do not need any narcotic pain pills thankfully. Tylenol works fine.

I am on a medrol dose pack to reduce swelling. The swelling is decreased today so I am optimistic.

The final pathology report came in a short time ago. The histologies grade of the tumor is G1. It is 4 mm by 4 mm. The depth is 1 mm. The tumor focality is unifocal and the pT category is pT1. I am hoping this is good news ?

I can’t help you with tumour grading but I Vividly remember sitting for one whole hour to eat a bowl of soup. What you describe with eating sounds pretty normal - just be rest assured that WHEN YOU KEEP AT IT - it WILL get better. Key here is you absolutely must keep eating. Even when everything tastes like metal!

Keep going - you are doing great.

Awesome pathology report. Now just concentrate on recovery.

I must say-you are brave. To this day I have never read never mind owned a copy of a pathologist report. I would have had a magnifying glass checking out how the computer printed things and trying to determine if that deviation meant anything.

Some people are better off not owning these documents - and I am one!

Get well soon.

Glad to hear you are home, relatively comfortable (tylenol only), and eating. As Pandora advised, keep eating. Find anything that you can process and go for it. It does take awhile to learn how to use your tongue again. I used a blender for weeks to get some of the solid foods back into my diet.

Regarding the pathology report, I am not knowledgeable on that. I suggest you get in touch with your doctor(s) and go over that in the next day or so. Just want to make sure it is all good news.

All in all, things are sound good. Wonderful! Keep up the recovery.

Edit : Just saw that you went through your surgery already. Glad to see that everything worked out well! Take the eating slowly. Took me 4-5 days before I could eat anything semi solid after my partial glossectomy and even then it had to be small bits. Make sure you are taking in enough nutrients as well. If you can't eat balanced nutrition meals for an extended time make sure you get some Boost or Ensure shakes to supplement your vitamins that your body needs or you will get pretty light headed and weak. I made the mistake of trying to live off of pudding and jello for 4 days and ended up having to get some shakes because I had zero energy by day 3. Best of luck in your recovery!

I am ashamed I have not responded or updated. I have resumed solid food for the most part. But I did lose about 8 pounds over the time it took immediately post surgery and now.

I still struggle with numbness in the right side of my tongue. I was so carried away eating one night I bit my tongue pretty bad. It was bruised badly for a couple of weeks. I have learned now to slow down.

Does anyone have a similar numb feeling in the tongue ?

Dear Another Journey -

I can not feel the right half of my tongue and I never will but it was removed and rebuilt with flesh from my forearm (partial glossectomy). Did you have that procedure or a piece removed? Glad you are eating food again. It took many months for me to learn how to manipulate food again but I also lost most of my saliva in the radiation treatment. Eating in public was an adventure but now 3 years out I don't even register it 99% of the time.

Keep up the good work!

Nels

Thank you for the reply. I just had a piece of the underside of my tongue removed so I did not require it to be rebuilt. I think about one quarter of my tongue surface is numb. I am hopeful that at least some of the lost sensation will return. I realize that I am not even two months post surgery. And more important I am grateful I am alive.

My other problem is that I constantly worry that any little white spot I see is a return of cancer. I have an appointment with the surgeon a week from Monday so I hope to get some peace of mind at that.

Thank you again for any insight.

Dear AJ

Couple thoughts. It took a long time, many months, for my tongue and mouth to heal. You will likely still notice improvement many months out. Ugh, the potential of cancer coming back is such a catch 22. It is totally logical and fair to be worried about it but on the other hand stress is related to it. Keep doing what you are already doing - stay on top of it. Besides my family and friends, my best source of peace relative to cancer returning is faith. Through my cancer surgery and treatment I had life changing experiences that built my faith to a level I never thought possible. And living gratefully is a daily routine. Finally, I suggest a book and a quick internet read. The book is called Anticancer and it is stuffed with tons of data on how to live a life to reduce cancer chances. To find the internet read, Google "Cancer is like a lion in the fridge." Makes me laugh and cry every time I read it (at least a couple dozen times now!).

Stay safe and keep the faith!
Nels