Hello-
I am brand new here. In December my athletic 42 year old husband was diagnosed with stage 1 SCC of the tongue. He has never smoked, never drank alcohol and is HPV negative. We had surgery done locally and it went well. Appeared to have clean margins and the lymph nodes that were removed all tested negative. Radiation was not recommended. Life went on.

A few weeks ago his ENT during follow-up saw an anomaly and ordered a PET scan that lit up in the tongue and neck. Surgical biopsy revealed cancer deeper in his tongue tissue. We are now facing treatment round 2.

I have a lot of faith but I'm also terrified at times. Our children are only 11 & 7. Contemplating my husband's mortality brings fear into my heart.

So. We're getting totally lined up with treatments (radiation, chemo) in our small midsize city but are also going for a second opinion at a CCC. My husband picked UNC as his choice for this and we're lined up with them for next week. I have wondered if we should go to Hopkins because their reputation is so good. He's unconvinced that Hopkins would be that much better than UNC. (UNC is more convenient for us but Hopkins is still only 4.5 hours away...) He feels UNC would be easier on us and less stressful and that's important to him and he's not sure going to a top-five hospital is that different from a top-15 or 20. I will support him no matter what he chooses to do, but am wondering if anyone here has experience with UNC. (I don't feel the need to check up in Hopkins. ;))

Also if anyone has had recurrence and can encourage me, I'd appreciate that. It's scary to be here right now.

Thanks!

Welcome to OCF! You're in the right place to get info and support to help both you and your husband thru whatever you both will be facing.

here are many members (myself included) who have had recurrences and been successfully treated. I know its not easy, especially for the caregiver. Make sure you set some time aside just for you. Every caregiver needs a break here and there to help mentally manage all the stress of suddenly having the weight of the world added to their already hectic life. Recurrences seem to bring a wake up call and force us to face our own and our patients mortality which can be a very difficult task. Even if you take a walk around the block or go to lunch with friends, it helps to clear your head. 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.

I want to explain a little more about how our site works so you can better understand. There are so many choices patients and caregivers can agonize over. Difficult, important decisions like which treatment plan to choose and which facility to go to are some things we arent able to guide patients thru. Our group is made up of oral cancer (OC) patients/survivors and caregivers, not medical professionals. That said, there are many times we are not able to answer questions. We do always try our very best to help everyone as much as possible. Please understand since our members are without a medical background or degree, we do not have years of medical school, clinical patient experience, a complete medical history (wont help as we dont understand it all) and of course having the patient right in front of us we are simply unqualified to weigh in on which treatment center to select. We also arent able to adequately compare treatment facilities. Plus it could be viewed as showing partiality to certain doctors and hospitals or even worse...disparaging them on a public message board if negative comments are made. I suggest checking with your insurance company (most rate doctors and hospitals) and going thru the lists Ive included in the links below. The facilities listed are rated by professionals who have the credentials to correctly look at every important factor and can best detail how they all measure up.

Im very glad to see your husband is getting a second opinion! Its always important to hear what other places and doctor have to say. Studies have proven patients fare best at CCCs. The team based approach is used where all the doctors are working together so everyone is on the same page. Patients are able to attend the tumor board meeting where treatment plans are discussed. This is a great opportunity to ask questions and learn a great deal about OC, treatments, recovery, etc. The best thing you both can do is find the very best medical care you can and put your faith in that team of professionals and go with it. Down the road you do not want to second guess whatever choices were made, it will only cause unneeded stress which is not good for anyone.

Most people really are good hearted and do want to help when someone they know has cancer. When you talk to friends and relatives about your husbands recurrent cancer, dont be surprised if they offer their help. Start making a list, take their names and contact info then tell them when the time comes you will let them know what they can do to help. It takes a village... Theres a million little things that can make a difference for you when you have your hands full taking care of your husband. Things like walking the dog, mowing the lawn, picking up prescriptions from the pharmacy, drive the kids to their activities, take them out for ice cream, the movies or out for the day, cleaning the cat litter, doing a load of laundry, etc are all small things that can mean alot when you have other things going on with your husband. At this point it sounds to me like your husband still has a few weeks before he has a treatment plan. Once he has seen all the doctors and treatment centers, done further testing and decided where he will go he will get his treatment plan. Then lookout, a flurry of appointments will keep you both super busy. Im mentioning making a list of helpers so you will already have this completed by the time your husband starts any treatment. Its something positive you can do and helps to keep you busy so you dont focus on worrying or the "what if" way of thinking which is unproductive and upsetting.

Hang in there!!! You have us to help you and your husband, you're among friends. We're kinda like a world of long lost relatives online who you know always has your back. Best wishes with everything!!!

List of Cancer Centers

US News Best Hospitals List

Main OCF Site, Understanding section

My story is similar to your husbands, but a few more bumps in the road. I had SCC, stage 1 on my lateral tongue and had my initial surgery done locally. I was told they got it all, and no more treatment was needed. Well, I decided to go for a second opinion, found out the doctor at the small/local hospital “misread” by biopsy and there was cancer “at the margins”. Went for multiple opinions locally and 2 hospitals in Philadelphia, got various recommended from more surgery, radiation, combination or “watchful waiting”. Not being a patient person, I opted for radiation.

Then about 5 years later, I had another painful area on my tongue (same area) which turned out to be SCC again. Since I already had radiation, that was not an option and chemo wasn’t an option either. So I went for multiple opinions (locally and in Philadelphia), and had an appointment scheduled at Hopkins which had to be rescheduled because of a bad snow storm. I had already schedule major invasive surgery at the cancer center in Philadelphia by the time I was able to make it to Hopkins. The doctor I saw (ENT) was the head of the department, trains other surgeons both at Hopkins and around the world, and his approach was much more conservative plus he put me totally at ease., He felt surgery only was needed on my tongue but had me wait so as to run another PET scan in a few months (nothing showed in neck nodes with the 2nd PET), so all he did was minor surgery on my tongue (clear margins). A year later I had another issue (dysplasia) which was treated with minor surgery. Dates and details are listed in my signature below.

I would highly recommend Johns Hopkins for the surgery aspect or at least get another opinion there. If chemo and/or radiation is needed, that may be able to be done closer to home.

You can read more about my adventures with my recurrence by looking at the posts I created. Click on my “UserName” and you should be given some options - look for the option for “posts created” and look for the ones in 2010 and 2011. If you have any questions, just ask. Wishing you both the best!

Susan, I know what your husband is going through. I had a hemiglossectomy on May 17 2018 to remove 60% of my tongue and the lymph nodes in my neck. I had good clear margins. About three weeks ago, I stared having pain in my tongue that got worse over time. The doctors told me I was biting it but I can't bite the bottom of my tongue back farther than my teeth are. About a week and a half ago I started radiation. The pain on my tongue got so bad I couldn't wear the teeth guards and could hardly eat. I convinced them to do a CT scan. It showed a tumor on my tongue almost an inch by an inch in size. A biopsy showed it was cancer. It was growing while I was having radiation and is even into the new part of my tongue. I discussed additional surgery but the surgeon said he wouldn't suggest it. After hearing what my quality of life would be, I agree with him. My only option is chemo and radiation and the chances of it working are slim. If they can't shrink it my surgeon said I have about two months left. Sorry I can't give you any words of encouragement but know that he isn't the only one this has happened to. I hope he has a good outcome.

Marvb, I'm sorry to hear your news.
If the tumour is confined to your tongue, why are they not offering you a total glossectomy?
Tammy