Hello. I just joined this board tonight - although I wish I had found it a month or so ago. I am 29, female and a non-smoker and have been diagnosed with tongue cancer.

I went to the dentist in November and he saw the sores on my tongue (which I took for granted that I was chewing on my tongue at night due to wisdom teeth coming in and moving my other teeth and thought that it would heal once I had them extracted.). The dentist didn't think it would be anything major - but wanted it checked out just to be sure.

Anyway, he sent me to the oral surgeon who thought the sores were not cancer - but definitely thought to biopsy them - and we did all four wisdom teeth extractions at the same time. He also sent me to the ENT for a second opinion before surgery and also my primary care doctor saw them too - no one thought it was cancer.

But - the biospies came back as SCC of the tongue. I had a partial glossectomy and a bilateral neck dissection on January 25th. They removed 20% of my tongue and 22 lymph nodes. None of the lymph nodes had tumor cells in them - but some were as big as 2.5 cm and all but 5 showed hyperplasia in the node. There is also some dysplasia which extended across the border of the incision on the tongue which still remains. The tumor was a stage I/II borderline- which they couldn't tell for sure b/c of multiple centers of loci in the tumor. They did get clean margins though. There was also no vascular or neural spread according to the pathology report.

I am wondering however, due to the size of the lymph nodes and the hyperplasia if there were some tumor cells in there -too few in number for the pathologist to see them on slide.

Also - my neck is still swollen slightly from the neck dissection. It is almost 4 weeks out from surgery - how long does this typically take to go down fully?

THey are doing a PET scan in 4-6 months and I am scared to death that it will be there too. THere are not recommending radiation or chemo at this time. I am worried that by not doing one of those treatments that it will come back. Any thoughts on this?

I am very emotional right now - one day scared that we didn't do everything possible - and the next thankful that I didn't have to do radiation. I don't really know what to think. I have a follow up with the oral surgeon this week to make sure the wisdom teeth are properly healed and I think he wants to see how the surgery went as well.

I got lucky in that eating has almost returned to normal and I could eat pretty quickly after the surgery. I also only have a slight lisp right now - and am pretty understandable. Of course - I really notice the change in speech but most people have no difficulty in understanding what I am saying.

Since I do not know what caused my cancer - I am so scared that it will come back and that I'll have to go through this all over again.

hi amy, welcome you have come to the right board.although my cancer was of breast and larynx cancer as no boundarys. you seem to be handling things very well, its a long road you will be traveling but everyone here will be supporting you please keep in touch and remain possative hugs and prayers your way ...god bless...maz

Hi Amy, so sorry to hear that you have to deal with this. But I am glad you found OCF. I will send you a private message about my tongue cancer experience. Take Care...Love, Carol

Amy,

I'm sorry you had to experience this at such an early age, but I'm glad you found this site. You don't mention whether you've been seen at a comprehensive cancer center -- if you haven't, I would urge you to go to one as soon as possible for a second opinion.

There are several parts of your story that sound very familiar to me: delayed detection because of misdiagnosis by several doctors, size and location of tumor, type of surgery, findings in pathology report, etc. Even though my surgical team felt they had good margins, the head and neck cancer team at my hospital pushed strongly for radiation, partly because of the potentially aggressive nature of this disease. While that extra treatment was really tough at the time, I've never had reason to regret having had it.

Please feel free to come back as often as you need to with any questions. There are plenty of people here who can identify with what you're going through and will try to help.

Cathy

Amy,
Your young age and good health habits actually work against you a little. I am not trying to frighten you but you must be as aggressive as possible in fighting this cancer.

Typically primary care doctors, dentists and some oral surgeons, as well, couldn't Dx a tumor if it jumped out and slapped them. Diseases of the throat require a specialist and even some of those will gloss it over due to young age and lack of negative health habits.

What diagnostic workups did you have? PET? MRI? CT?

Certainly your dentist and oral surgeon are to be commended for at least being conservative and ordering a biopsy in spite of their personal doubts.

Are you going to a comprehensive cancer center? If not, at the very least, I would have my records forwarded to one for evaluation of your treatment plan. Do you have a cohesive team? I.e. MO, RO and ENT or Head & Neck surgeon that are on the same page (and share information)? Has then been a tumor board to come to a consenual agreement on your treatment protocol?

As Cathy mentioned, tongue cancers, in particular, are very agressive. If it were me I would hit it with all they've got.

Brian may be able to jump in and cover the node issues in greater detail.

I have been treated by two head and neck surgeons. I have not seen any oncologist at this point. I also - am going to one of the best local hospitals - but it isn't a cancer center.

This is exactly what my pathology report says for the synoptic report: "Tumor size; uncertain. The tumore measured 1.8 x 1.4 0.6 cm grossly. However, microscopically the tumor extends anteriorly beyond the grossly described vertical incision site. This was not appreciated grossly. It is possible that the tumor is slightly greater than 2cm in greatest dimension which would make this a T2 tumor."

It also says that it is a moderately differentiated G2, pN0, pMX, the margins are uninvolved by carcinoma, distance of tumor from closest margin is 3 mm, venous/lymphatic invasion not identified, and additional patholoic findings: epithelial hyperplasia and epithelial dysplasia. Comment: "Epithelial dysplasia is noted adjacent to the main tumor site. In some areas there is a multifocality of tumor origin."

In the details of the report it states that some of the nodes are up to 2.5 cm in size and that 17 of the 22 show either reactive follicular hyperplasia, no tumor seen or reactive hyperplasia, no tumor seen. They took nodes from the submental area (5 normal - no hyperplasia), from the right submandibular triangles and levels 2-3 from the neck).

I don't really know what to think. My parents have been very supportive - but they think my fears of recurrence are unjustified. My mom thinks that just b/c it was removed that I have no chance it will come back. She gets mad at me when I look things up on the internet and then get upset about it. My dad just takes the surgeons words as gold.

I really have no complaints about my surgeons - they have been great. I have two head and neck surgeons that worked together for this surgery. It took 4 hours - I guess that is normal. I think they want to spare me from the trauma of radiation - although they have been clear that since we don't know the cause - that it could come back. In one way - I feel as if I should do radiation to "nip it in the bud" on the other hand, I feel as if I shouldn't do it - in case that I need it later (can't you only have it once).

I only weigh 115 now as I have lost 10 pounds since Christmas due to both of the surgeries (first the wisdom teeth and diagnosis of cancer and then the actual tumor resection and neck dissection). I really don't want to go through radiation if it would leave me at like 90 pounds or so - I'd be a stick.

The workup so far, was the initial biopsy by the oral surgeon, some labs: cbc, liver panel, pt, ptt, kidney, mg, and phos, chest x-rays and a CT which didn't show much of anything. Didn't show any involved lymph nodes nor did it show the actual tumor on my tongue. So I doubt the effectiveness of that - b/c if it didn't show the tumor they knew was there - what other things could it have missed.

During the surgery they did a triple scope as well to make sure it hadn't spread to larynx, esophagus or bronchs.

I am supposed to have a PET scan in 4-6 months.

I guess I am most worried that it really was in the lymph nodes even though the path report says no. They are attributing the size and hyperplasia to my wisdom teeth extraction which occured 2 weeks before the resection. In the back of my mind - I keep thinking there was micrometastasis that just wasn't seen on the slide.

I'm also wondering - since we don't know for sure what caused it - if I could spread it. For instance, I know cancer can't be "spread of caught" but if it was caused by HPV, then can I spread that by kissing someone - and making them a possible victim at a later time? All of my pap smears which I get every single year - have always been normal. I've never had an abnormal one - so if it were in my mouth - would't it be there as well? I know it is silent a lot of times - but if my tissues were affected in my mouth - shouldn't they be affected on the cervix too? I don't know for sure this was the cause - just assuming it might be.

Sorry for such a long post. I have so many questions. Everyday - I have new questions.

Welcome Amy; sounds like your caregivers are crossing the T's and dotting the I's. It is tragic that you are forced to deal with this at such a young age.
Darrell

Amy,

Like you, I had a couple of superb surgeons who did a wonderful job with my tongue and neck, and I was hoping that the clear margins and lack of lymph node involvement would be enough to end the treatment right there. However, the oncology team who looked at the pathology report and weighed the various risk factors decided that I really needed the extra step of radiation to nail this disease and hopefully keep it from coming back.

I'm concerned that if you have only dealt with surgical specialists, you don't yet have enough information to know whether radiation is advisable in your case. That type of decision is best left to an experienced oncology team that deals with head and neck cancers on a regular basis.

Please feel free to send me a private e-mail if you wish.

Cathy

Well I'm with Cathy here. Surgical only people doing surgical only solutions with dysplasia still in the margins. I am less than comfortable with this. My GUESS is that if you were being seen at a MAJOR CANCER CENTER that routinely saw oral cancer patients, and had the opportunity to have a full TEAM of doctors following your case, you would be getting radiation about now. Surgeons will routinely say they consider keeping it in reserve a good thing, but the fact is that if this is not completely eradicated now, the recurrence is much more difficult to deal with... even using radiation as part of that SECOND round of treatment. I would be getting a second opinion from a radiation oncologist, and not be leaving my fate in people outside the world of oncology and from a singular discipline, surgery. I wouldn't be doing this down the road, I'd do it now. I don't mean to rain on your parade of getting out of radiation, or to sow too many seeds of doubt in your mind. But many of us here have seen this scenario before, and not always with the best of results.

I go to the oral surgeon tommorrow - so I guess I'll ask him for a referral to a radiation oncologist to see what they say. The head and neck surgeons are the ones who are treating me right now - but the oral surgeon is the one who originally did the biopsy and teeth extraction. I live in Cincinnati - does anyone know the closest cancer center that deals with oral cancer? We have the Barrett Cancer Center and the cancer center at Christ Hospital. But, I don't know if either of these has dealth much with oral cancer.