Hi all. We are newbies to this cancer world. My hubby of 20 years has just been diagnosed with base of tongue cancer, squamous cell, most likely HPV 16+. I have done a ton of research & am fairly well versed, thanks to you all. However, having just returned from first appointment with oncologist, have a few questions.

First off, hubby is big & strong & has no other major health issues. His cancer was found when he felt a lump on right side of neck so lymph node involvement, primary tumor on right side base of tongue (A small lesion) Caught pretty early as he had no symptoms otherwise. Doc says T1N2A. Stage 3. No cancer found anywhere else....phew!!

First off took us 2 weeks to get PET & CT scans done, then met with oncologist next day & now have to wait another 2 weeks before we can see ENT doc. Crazy. We live 10 mins away from UW medical center in Madison which is a comprehensive cancer clinic so we are super fortunate on that end. Soooo is it "normal" to have this much wait time inbetween appointments???? Very frustrating.

We believe surgery plus rad/chemo is likely but if anyone can shed any more light on what we can expect, would be much appreciated!

Trying best to be upbeat & positive but obviously very scared. Thanks all for taking the time to read this & answer.

Hello
I am new to this site too but my husband had the same diagnosis 5 years ago. Very scary to say the least. We too had to wait a bit before everything started. My husband had radiation and chemo and had all the lymph nodes removed from his neck after the completion of the radiation and chemo. His treatment was at Shands in Jacksonville, Fl at the proton Therapy Institute.
We were told that the surgery might not be necessary if the radiation and chemo did the job but in the end the doctors felt it would give him the best outcome to be cancer free. This whole thing was so scary to me and we virtually lost it seemed a year with this treatment until we were in the recovery mode. I would be happy to answer any specific questions you might have as a caregiver who has been there.

IF they are recommending surgery, like a Neck Dissection, then I would get another opinion as I'm a firm believer that's not necessary in the VAST majority of HPV+ cases. The radiation is the only thing that will kill his cancer and the chemo enhances the killing % so that may be helpful. Please see my Signature Line. Glad you found this site as it will prove to be invaluable during and post Tx.

Thank you so much, David & Risa, for responding. David, your tag line looks very similar to my hubby's. we will definitely take your advice on second opinion. We are not too far from Mayo in MN so have talked about that. Were you able to work during the whole ordeal?? Was life relatively normal?? I've read maybe too many not so great posts about what he may go through during rads/chemo. What were they like for you?? I know everyone responds differently, just hoping his is more on the so called "easier" side. Any advice for best way wife/caretaker can make things better?? One thing I do know....I don't see him riding a bike 100 miles a week but you never know, I guess. Never thought he'd have cancer either.

Thanks again for your responses.

Welcome to OCF! Glad you have found this site to help you both get thru everything. Being a caregiver can be a difficult job so please remember take care of you too and make some time weekly just for you so you can clear your head.

The best advice I can give is to be treated at one of the major comprehensive cancer centers and watch the nutrition/hydration. Your husband will need at least 2500 calories and 48 oz of water every single day. No skimping thinking he can make it up the next day. Playing catch up never works and can lead to malnutrition and dehydration. During his treatments the doc can write a prescription for your husband to have hydration a few times a week to make sure he doesnt get dehydrated. This is especially important if getting chemo to flush the poisons out of his body so they dont do kidney damage.

Your husband should visit the dentist and have any dental work done now before treatments begin. he needs a flouride tray made as well to use during treatments. He needs a complete blood count done including thyroid and a hearing test. If getting cisplatin me needs to be very aware of any changes in his hearing even a slight difference needs to be discussed with the chemo doc so they can change his chemo before permanent damage is done.

There is alot to do before treatments begin. Everyone will want to help so tell them when the time comes you will let them know what they can do. Write down everyones name and number and dont be shy, call them if you need something. People really do want to help and arent sure what to do so speak up if you need a hand. The American Cancer Society will help pay for prescriptions or transportation to and from treatments. Call them and also ask for help with rides to treatments. Believe it or not, once or twice a week having someone drive your husband really is a huge help. I do volunteer driving for the ACS when I have time.

Hope I didnt overwhelm you with too much info. Better to be prepared than to struggle down the road.

If you have questions, ask and we will help you.

Actually, it's advanced cancer, stage 4, N2b, with multiple ipsilateral lymph nodes, less than 6 cm, but stage 3 and 4 are basically treated the same, and being HPV positive is a good thing, if so. As mentioned, maybe get a 2nd opinion at a top CCC mentioned in numerous posting here. BOT can be difficult to treat, stubborn, being the tumor can go deep in the structure, and treatments, surgery, can effect swallowing. Good luck.

Timm,

First things first, let's get a Tx plan then we can discuss what may or may not happen to him more specifically. For me and for many treated just like me, my first week I noticed my taste being impacted and by my 3rd week or so all taste was pretty much gone. Very hard to accept. I had the 3 Big Bag method of Cisplatin but now many are getting the same amount of Cis but spread over 6 smaller weekly doses and while there is no study to back this up, it appears that the desirous affect is the same but the bad side effects from the BB method are lessened so if there's a choice I would go with the weekly dose. For me my 1st bag of Cis was a non event but after bag 2 the nausea, despite heavy anti nausea meds, was horrible and stayed with me throughout the rest of my ordeal. My worst weeks started after that 2nd bag (week 4) and continued thru week 3 POST Tx with the weeks POST Tx BY FAR the worse which is typical of this Tx. I did not work during weeks 5 thru week 3 post Tx.

As Christine cautions, calories and hydration are SOOOOO important in this Tx and with the damage done to the throat by the radiation and the nausea causing chemo, the deck is stacked against him quickly. By week 4 or so I was on a liquid diet and found Carnation Instant Breakfast VHC (very high calories). This same 8 oz can contained a whopping 560 calories which meant fewer swallows which meant to me less pain and less chance for nausea. This has now been replaced by Boost VHC. You must get it from the pharmacy dept of say Walgreens or WalMart or over the internet but you don't need a prescript. With this he needs only 5 to 6 cans a day PLUS 48 ozs of water. THAT'S EVERY DAY.

Get him to his dentist to get checked out re fillings and other dental work and get him fitted for Fluoride Trays. It's best to go to a dentist with oral cancer experience IMO. I started using mine 1 month pre Tx and continued for 5 years post Tx.

Have his TSH tested the next time they do a blood draw and record that number just in case his Thyroid craps out like mine and many did post Tx due to radiation damage.

Fatten him up now. If he's already plump, fatten him up more. Tell him to eat all his favorite foods whenever he wants as he most likely will loose his taste (which mostly will come back) but it will take up to 2 years for his recovery.

Cancer docs are trained to treat the physical part of cancer but not so much when it comes to the mental side which I believe is 50% of everyone's battle especially the caregivers. Everyone needs to stay calm and focused. This will only be a rough time for appx 7 weeks (week 4 thru week 3 post) so it really is a small bump in our life's journey but it can get intense so being mentally prepared is important. That's why this site is so important because we can prepare you and we can also show you both the light at the end of this tunnel.

You most likely will have to become the Nurse from HELL because he will most likely resist getting the proper calories and hydration. Do not be afraid to pounce on him. If it were not for my wife I'm pretty sure my outcome would have been deadly. I never feared the cancer but I did fear this Tx for a few weeks.

If you or he wants to talk just PM me and I'll give you my contact numbers.

Oh, David. How incredibly helpful your post was!! Thank u! I am quite sure there will be many more questions as we go through this uber crappy journey so I am very thankful for this site & people like you!!

Hi Timm, sorry you have to come on the roller-coaster ride, but here you have a circle of friends who understand and will be there for you.

My husband has a similar diagnosis. He is now three months past treatment with a clear CT scan and recovering. John only had radiation and chemo -- they don't usually do surgery for BOT as it is major surgery. He waited for about six weeks between diagnosis and start of treatment, but there was so much to get ready for (hearing test, fluoride trays, getting the mask made, radiation planning, etc) that the time flew by.

I took the advice of the other posters and fattened him up. We also agreed between the two of us that hydration and nutrition were non-negotiable items during and post treatment. That helped me as a caregiver while he was in treatment because he understood why I kept on pushing the eating and drinking.

I totally agree with DavidCPA's suggestion that everyone needs to stay calm and focused. I would also throw in "be prepared to problem-solve." This really means you should ask questions if you even have the slightest doubt or if there is something you don't know how to handle. I got a lot of help from the nurses at the Radiation Nursing Centre.

It is a tough treatment, but you will get through it.

Timm, I, too, had a similar cancer, but mine was grace IVa. I had the usual six weeks of rads and two doses of cisplatin. Plan was to do the neck dissection only if a PET scan showed the cancer still around 3 months after treatment. I did not have surgery. I would stongly recommend getting that second opinion too. The ENT that diagnosed my lymph nodes as cancer scheduled a neck dissection the same visit without finding the BOT primary.

As far as waiting goes, it took me four weeks to get the right diagnosis and then another four weeks before they started treatment. The Tom Petty song is true, the waiting is the hardest part. Once I started treatment it was a huge relief.

Like the others I would highly encourage the second opinion at a CCC. You don't want the surgery unless you need it and many BOT, HPV with lymph node involved cancers don't require the surgery.

Hi there... okay one thin I have noticed that someone else doesn't appear to have commented on. Your description. Is it a visible lesion? You said right side base of tongue. If it is visible to your eyes, or in other words on his ORAL TONGUE. Then it is not base of tongue. Some people make the mistake of thinking if it is under the tongue at the back it is the tongue base. What people don't realize is that the tongue is super long and runs down the back of the throat. True base of tongue cancer (HPV+ - usually) is only visible with a scope.

I make this distinction because with the other kind of tongue cancer - oral tongue - surgery is the first treatment option. HPV responds well to radiation and chemo, therefore surgery isn't often offered first. But Oral tongue cancer can be more aggressive and usually requires surgery first and then often rads and chemo as a secondary safety measure.

Usually the time from dx- treatment I find is 4-6 weeks. And staging aside time is always of the essence... hugs and best of luck. Clarify what kind of cancer he has and then move on from there. If you are being treated at a ccc that's a very good start. hugs.

Wow....great info all of you. Heartfelt thanks. Cheryl, his is a small lesion only visible by scope. I initially thought of course do surgery first & then zap it with the rads, but after reading all your responses, my mind is more opened.

Also, want all of you to know how much just posting once (so far) has made us both feel, for lack of a better word, better. Thanks!!!

Hi there, I live in the UK so can't comment on treatment plans though I think the protocols are pretty much a standard way to hit BOT SCC. I had a very similar diagnosis, and 18mths on from my diagnosis I am doing very well. One thing I would say is that everyone reacts differently and has differnt issues to deal with. Good luck and best wishes to your hubby. Sally

Hi,
Wow David...you hit it all!!!
As you can see by my signature, my husband had the same dx as your husband. We did not have surgery as the oncologist felt it would weaken his immune system by removing all the lymph nodes on the right side. We did have induction chemo, then chemo with the radiation. We are one and a half years out of tx now and doing well. Kevin didn't work during his tx, but part of that was because he works in Alaska on the north Slope and we live in NY. That travel was out of the question. He was back to work on January 5th 2012 though, which amazed everyone considering the work conditions in Alaska. It was -60 when he got back!
The second opinion is a great idea before having any big surgeries. They may do a surgery to removed the tumor, but that was not too bad.
Other than that...listen to David!!
Remember it will get rough. It sounds like your hubby is as strong as mine. The never been sick is a familiar story. It will be hard to see him struggle, but remember you are NOT alone. We are here 24/7. Vent away and someone will answer in a reasonable amount of time. You've had lots of offers for personal help too, so that's great. You can always add me to the PM list too if you'd like.
Keep in touch and remember you are his friend, wife, lover and now nurse....be tough when you need to, but remember to have some cuddle time too. Sometimes it might feel like he has completely pulled away, but don't let him. Even if it's just laying beside him watching a movie or just resting.
You'll get past this and will move on!! Hang in there!
Kathy

Hi Timm, I pretty much echo what's been said so far. I would add that since your hubby is in good shape and works out, he should know that working out while taking the chemo and the radiation would make the process much easier to deal with. I especially endorse the suggestion to try and get the Cisplatin in many, small doses as opposed to three mega-doses.

I had the 3 application version and I lost my sense of taste first, then by the end of my first week I was so nauseated that it was all I could do to keep down a single bottle of ensure plus each day; and that was a struggle.

Anti nausea drugs were no help, and a couple made it worse. Cannabis, however, got me through. IF you are a Medical Marijuana state, get a card ASAP.

I was deathly nauseated for 90 days and lost 38 lbs of mostly solid muscle. Since Dec, 2010, I have only been able to regain 12 lbs, up to 166.

FWIW, I'll be 74 on the 10th of May.

I've had two recurrences, both in my liver, each treated with chemo only, and have knocked all active tumors out with the chemo.

And I worked out, three days a week all throughout the chemo (for the 2nd and 3rd occurrences post cisplatin) and the chemo did not bother me, other than to cause a bit more neuropathy (primarily hearing losses).

My theory, and my MO has come to agree with me, is that working out so elevates your metabolism that it eliminates the chemo much more quickly that it does for someone who does not workout.