Hello,

I'm a caregiver and husband to (Katie B. on these boards) who was diagnosed October 2012 with cancer of the tongue. She had two partial glossectomies followed by radiation/chemo (and then more chemo).

A PET scan, a CAT scan, and an MRI later, all point to *something* at the base of the tongue. It may be scar tissue. It may be a tumor. I'm terrified of it being the latter. A biopsy is scheduled for 9/11/13 in NYC (of all days!) and we'll know the results on 9/25. One fear I have is that it's a tumor and the surgeon will want to do a total glossectomy.

I have to say that the last 10 months have been among the hardest of my life. Having to constantly be the rock for everything to break against is bone-weary tiresome. Our kids (ages 5 and 6) are young enough that they don't really understand what's going on (a blessing, perhaps), but I'm actually having nightmares about possibly having to explain to them that "Mommy can't talk anymore" and "Mommy can't eat anymore."

Katie's in a great deal of pain and is not sleeping at night. I've finally convinced her to meet with a pain management specialist and am hoping that she'll soon have some different meds to aid in her sleep.

Katie's been on these boards but hasn't been active in awhile. I'm actually quite curious whether she'll find these posts on here.

I know that it's probably premature for me to be asking questions about a total glossectomy, but I'm trying to prepare myself for one possible future, as depressing and terrifying as it might be:

1) For those of you who have had a total glossectomy, is it true that all speech is gone? What about the mechanical voiceboxes I've seen some throat cancer patients use (usually because their larynx is removed). Does the loss of a tongue prevent even those kinds of devices from working?

2) What about eating? If Katie loses her tongue, is all food off the table? I understand the difficulty in swallowing without a tongue. Can the mouth or throat muscles be re-trained to do some of that work?

3) If the biopsy shows that there's a BOT tumor, does that automatically mean that they'll do a total glossectomy or are there such things as three-quarters glossectomies where some of the tongue is left behind upon which other tissue can be grafted? I've read about some of this, obviously; I guess I'm looking for first-hand accounts of people who have already gone through total (or almost total) glossectomies.

4) If we end up having a consult with the surgeon about a glossectomy, what questions should I make sure to ask him/her? I have a few already but I'm quite sure there are things I haven't thought of.

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Damien, caregiver/spouse to Katie B (age 39)
09/12 Diagnosed SCC on right side of tongue.
10/12 Partial glossectomy
11/12 2nd partial glossectomy, MND (3/28 nodes positive for SCC)
01/13 RO and Chemo
04/13 2nd round of Chemo
08/13 CAT/PET scans show mass at BOT
09/13 Biopsy (awaiting results)

Welcome Damien and I'm really sorry to hear that your wife is facing more problems.

I've been a member of the OC club since 2005 and have had 4 partial glossectomies and RT. I can't speak first hand of the issues one would face from a total glossectomy, but many on the OCF forum have been thru it. From what I recall of some of their stories speaking and eating is still doable. One member that comes to mind is misskate. Some members have had RT more than once, so that would be a question to ask her doctors.

You can search the forum using the search box in the upper right corner. You can use the User List to look for posts by a particular member. Also, the main pages of the OCF website contain a lot of information and you can do a search there also. I've found the forum and the OCF website to be the best source of information and support out there.

Oral cancer is tough and the treatment is brutal. We all come out the other side changed. Having young children as you do is also difficult as you want to protect them from what is going on. My kids were teenagers when I was diagnosed so they knew more of what was going on, but it was still tough for the whole family.

I pray that the news you receive is good, but if it isn't we will be here to help you.

For now, make a list of questions to ask the doctors, use OCF as a resource and a source of support. Ask questions here and we will do the best to help you.

Hello Damien, I know the terror you are feeling. I also understand your need to prepare yourself mentally for what may be. For me, it was about knowing that Kris still had curative treatment options.
Kris had his total Glossectomy 18 months ago. He also had additional surgery as you can see from my signature.
Yes it is possible to talk after a total Glossectomy. Try talking out loud yourself while keeping your tongue still. The speech is very understandable, but not perfect. The Electro Larynx you talk about would not be suitable as they replace the larynx not the tongue. A speech therapist would be able to assist with attaining good quality speech.
Yes eating is possible. Kris takes all his nutrition by mouth. Misskate I believe eats a normal diet. Again the Speech therapist would assist with this. You can also buy special spoons that help get the food to the back of the mouth to swallow.
I can't comment on whether a total Glossectomy would be needed as this would depend on where exactly the tumour was, where it extended to etc.
If we were going through this again I would want them to show me exactly how big the tumour is. Where does it extend to. Does it involve the epiglottis.. What needs to be removed to gain clear margins.
I really hope that you are not in this situation. But should you be, try not to panic. There is good life to be had after this surgery. The kids will just accept their Mother as she is.
At the biopsy I would insist on getting the results back within 3 days. 2 weeks is ridiculous and far too long. Make sure they understand that the stress levels will not cope with a 2 week wait.
Please try not to borrow sorrow from tomorrow. Thinking of you both,
Tammy

Hi... I'm sorry to hear about Katie... Hopefully it's scar tissue - which is a possibility. There are a couple of people here who have had total glossectomies. One of them our old timer - hasn't been around as much lately but I suspect that's because she is back to work full time and living life large. According to her she can eat and taste (taste buds are all over the mouth) and speak - even on the phone - though it took a while to get to that point) This is assuming your wife needs a glossectomy which I'm not sure would be the case. I can tell you that when they do partial glossectomies and neck dissections they fillet you like a fish - I know for a fact I have stitches running from my back molars all the way down the inside of my throat, so hopefully it's just scar tissue maybe along that path or even a wicked ulceration. It sounds like she has had a hard time of it, and so have you. I know it's terrifying, but there is little that worrying will do for you. Enjoy your time with your wife and family, and hopefully she will be able to as well once they get her pain under control. Fingers crossed that he biopsy results are clean. and hugs to you all.

I cant' be much help help with glossectomies. My initial PET/CT showed involvement with the BOT, Valleculla, but on direct biopsy they weren't, and hope the same that it's scar tissue, inflammation or something else minor. I go to Beth Israel, and Mt Sinai in Manhattan. Another member here goes to Memorial Sloan Kettering Cancer Center. There are three SPOHNC support groups, in Manhattan at the first two hospitals mentioned, and one at NYU that meet once a month if you are ever interested.

Good luck with the biopsy.

Damien, being a caregiver is often a thankless job. You especially have your hands full with having 2 young children. I have not had a glossectomy so I cant help with first hand knowledge but I can tell you about some of the members Ive witnessed over the years on the forum.

Having oral cancer on the tongue does not always mean losing the whole thing. Im sure the doctors will take as little as possible to receive clean margins. Thats very important, its better to take the whole thing if the margins would not be clean. Depending upon how much of her tongue would be left, she may get a free flap which would be tissue taken from usually the wrist area and reused for her tongue. With the help of a speech pathologist and alot of hard work, she may regain her ability to speak clearly. So much of this is dependent upon what the doctors do and also up to how strong she physically is to get past all of this. Thats why its so difficult to answer your questions.

Wishing you both all the very best with everything. Please know we are here for both of you so dont be afraid to post when you have questions or need some support.

Thanks everyone for the kind words and good thoughts.

We have to wait two weeks for the biopsy results because the doctor is going on vacation. Everyone deserves to have vacation. We're resigned to waiting an extra week. It's not any easier, but que sera sera.

My overriding concern right now is for my wife's mental health. It's why I'm here talking to all of you. While this has been an incredibly stressful and rough road so far, I'm terrified that what we've already been through may pale in comparison to what may be coming. I know we're all supposed to live in the here and now and not worry about things we can't change (namely the past and the future), but saying it doesn't make it any easier to do it, live it. I'm going to remain as strong as I can be and take everything one day at a time. Keep calm and carry on (a truly wonderful adage until it was adopted by the hipsters and marketers).

We've signed up for the Oral Cancer walk in New Jersey on Sept. 21st and will be there walking. So far, we've raised a fair amount for just two people (Team Katie). Our friends and and my workplace have been incredibly supportive. Maybe we'll meet some of you there?

Katie started treatment chemo/RO, MND x2 at Morristown and has switched to Memorial Sloan Kettering. We weren't unhappy with the doctors or treatment at Morristown, we just feel that MSK is giving us more options, more information, and a better path forward towards preserving as much quality-of-life metrics as possible. We consider ourselves fortunate to be so close to so many world-class cancer treatment centers.

Damien,

I've been in the "waiting game" a number of times, and it is extremely stressful. Is your wife on any anxiety medication? A lot of us cancer patients do take some and even their caregivers. During this time try to do some fun things with the children to help keep her mind (and yours) off the subject of "C".

There will be a number of OCF members at the walk in NJ on 9/21 - look for the burgundy survivor shirts! I wanted to go but have another commitment that day, but I'm the co-chair of the walk in Bethlehem, PA (Lehigh Valley near NJ border) the following weekend (9/28). We have a large group of OC survivors who will be there, so consider joining us that day also.

I'm glad you are reaching out to us for help, and I do hope we are able to help you and your wife.

Surely you can get the results from your family dr. I wouldn't wait. That week can make a difference in treatment. I get that everyone deserves a vacation but you deserve answers. Perhaps a colleague? Try to push to know before hand - mental health plays a big role in healing etc... She should know ASAP. Hugs.

Cheryl makes a good point that perhaps another doctor in the group could meet with you and give you the results. For me I want to know the diagnosis before I sat down to discuss the "what next". Gave me time to research and make a list of questions.

One thing I usually do is make sure my PCP gets a copy of all my medical tests so I could use them as backup to find the results quicker.

I agree with Cheyrl and Susan. Waiting is the worst! I just finished waiting 15 days for my biopsy, which report was available the next day, according to the pathology report obtained yesterday. I never waited this long, and usually was told by the pathologist on the spot or by the doctor, picked up my own report in pathology, otolaryngology or meducal records, which I was going to do. I made the mistake of going to the Otolaryncology department first, new hospital, and wasn't like I was used to at other places. The doctor wasn't in, and the PA said the full report was not back yet, and met a few other staff along the way, kindly asking what I was doing there...to pick up my biopsy report. Wrong answer lol, and didn't get it. Susan had a good suggestion to copy your PCP, which I do, but didn't this time, and even they don't give out the results until you see the doctor. Anyway, knowing the results, I feel, slept better. Good luck.

Damien, I always attend the NJ OCF walk. Make sure you find the hostess Susan Lauria and introduce yourself to her. You can ask her to point me out. I will have a burgundy OCF tshirt on and be sitting with a group of survivors and caregivers I have met from the OCF forum over the years. Sadly some of my NJ walk friends are caregivers of deceased members. You both are more than welcome to join me at my table if you would like.

If you scroll thru the OCF key staff page below, you will find photos of both Susan and myself. There should be well over 200 attending (hoping its over 300) the walk so this should help.

OCF Key Staff photos/bios

Damian, I will be at the NJ walk, too. I would like to give you a copy of my two books to help you talk to your children about cancer. I'm sure I will find you, and you will find me...'younger' with silver hair! My friend Ed had a glossectomy 18 years ago, when the surgery was more barbaric, and he eats, speaks.....he is slightly hard to understand for new people in his life. He works in real estate! He has a device that raises the floor of his mouth so food can sit close to his teeth for chewing. He even tastes! I guess there must be taste buds around the tongue area. So, no point in worrying about the unknown at this point. Looking forward to meeting your family.

Hi Damian,

I am one of the forum members that recently finished treatment at MSKCC. I was very happy with my treatment and have only good things to say about my experience there and the doctors' expertise. It is a blessing to be in an area with a large number of world class hospitals. Let me know if you have any MSKCC specific questions.

Good luck,
Andrew