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.