Hello, my name is Nancy and we are from St Louis. My 62 yr old husband was diagnosed with HPV right tonsil cancer about a month ago. For almost a year he had a cough, feeling of a lump in his throat and a sore throat. Had an Endoscopy which showed nothing. Saw his internist who suggested acid refluz and sent him to an ENT. First visit and the doctor took a biopsy and felt certain it was tonsil cancer. Chest x-ray, CAT and PET scans followed. Biopsy positive for HPV cancer, but the other tests were clear. Within a week my husband had both tonsils removed, 40 nodes and lots of surrounding tissue. The pathology came back completely clean except for the right tonsil. Margins were all clear, no other involvement. The tumor was just at 4cm, so they decided to call it stage 3. Six weeks of radiation along with a once weekly low dose of Erbitux has been proposed by the group with our ENT. We are getting a second opinion from The Siteman Cancer Center next week. Recovery from the surgery went very well, but we were only expecting to have radiation. The chemo was just brought up this week as a boost to the radiation. Trying to work through all of this in such a short period of time. Everything changed in an instant and there is so much to learn. I am thrilled to have found this forum and hope to find support and be able to offer help and support as time goes on.

Welcome Nancy. Sorry to hear about the journey you and your husband are on.

Ed

Welcome Nancy - It is a journey and this group is the one to prepare and walk you down the path.

Welcome Nancy, your husband, including yourself, have had a long journey in a short time. I had tonsil cancer too. Your doctors were very aggressive in treating, which it sometimes takes, but with HPV, it's usually Chemoradiation, being its very responsive, and surgery as a last resort, which I had, but there are number of ways to go about this, and what your doctors chose. In retrospect, this is the type treatment I wish I had.

Erbitux is used, but is not recommended outside clinical trials, until studies are done, and is used for recurrent, metastatic disease, after a platinum drug, like Cisplatin failed, so the gold standard for now is Cisplatin. Some combine Cisplatin with Erbitux, which reportebky had good results, but have also read of disappointing findings in this combination by MSKCC. I had Erbitux and Taxol my last round.

Good luck with your 2nd opinion.

Sorry he has SCC but I'm more sorry that he probably under went an unnecessary neck dissection. It's a shame that ENT's (neck surgeons) still want to do ND's when the radiation and chemo, which he was going to get anyway, would have killed the cancer especially with a HPV+ biopsy.

Well on to the next phase. This site will prove invaluable for the next 2 years. Use it as often as you want. No questions are prohibited. No questions are too small. No complaining is unwelcome. We have been there and collectively we can answer just about anything you may encounter. This applies to your husband and you his valuable Caregiver.

There are a few things that I recommend prior to and during his Tx.

During a forthcoming blood draw ask them to test his TSH and record that "normal" level just in case you need it post TX as his radiation field may include his Thyroid and damage it beyond it's repair capabilities.

Have him get to a dentist with oral cancer experience. Have him checked over to see if any fillings need to be replaced or any other dental work needs to be done pre radiation and have him fitted for Fluoride Trays and begin using them asap. I started using mine 1 month pre Tx and 5 years post Tx.

He will get fitted for a mask that will literally bolt his head down to the rad table. Most find this confining and some even need something to relax them while bolted down and others adjust quickly. Just prepare him.

Have him eat ALL his favorite foods as if he's in a eating contest. Forget about calories or fat, just enjoy. He will lose his taste fairly quickly and it won't return until many many months post Tx.

If he is advised to get a PEG pre TX consult this site as we have VAST experience with our PEG WARS, i.e. some really think it's a blessing and some, like me, thinks there's an alternative that's better.

During Tx he will lose his taste and then his throat will become very sore making swallowing very difficult. In spite of this it's critically important for him to consume at least 2500 to 3000 cals and 48 ozs of water EACH and EVERY Day. Making sure the patient does this historically falls on the Caregiver's shoulders so be prepared to be the "Nurse from Hell" when it' becomes necessary.

Look all of us can react differently to this Tx. Some go through this Tx as if it's a walk in park; others have problems from day 1 but the vast majority of us start to have problems around week 4 or 5 and we get progressively worse until around week 3 POST Tx. I'm not telling you some of these things to scare you but just to prepare you and him because if he encounters any of these problems just know IT'S NORMAL and you 2 will get thru this.

Hi - welcome and ditto what everyone else said - they gave you great advice. A cancer center is where you want to be seen for sure... Hugs! You'll get through it!

Whew, so much info to digest from everyone! First off, thanks to all! Our ENT, who hails from Washington University School of Medicine and The Siteman Cancer center, chose the total neck disection because the PET scan showed one node as suspicious right near the tonsil. He takes the most aggressive approach with SCC Tonsil Cancer because he treats it so often. That node, along with all of the others were clear of cancer. Next he said that 60% of his patients, with no further involvement, could get by with no treatment and be fine. 30% would experience problems down the road. He put us with the 30% because of the tumor size at just on the mark for 4cm. They could not decide to stage him at 2 or 3. The oncologist determined it a 3, which meant the full monty. I understand that MD Anderson never does the surgery and only radiates and then chemo. Our ENT said he does not agree with that treatment. He has been at this over 17 years and we have to trust some of his advise, which is why we are now getting a second opinion! Yea of so little faith here!

Now on to the treatments. First it wss just radiation because the pathology showed no involvement anywhere else. Oncologist did not agree and tossed in the Erbitux. I was not aware that it is only used in clinical trials and now I am concerned why he chose this drug over the gold standard. I did ask about the drug and was told by our ENT that is has very few side effects and would be given only once a week, low dose for a few weeks. Of course, tomorrow will be the formal meeting with the Oncologist and I will question his choice of drug and why. We do get to decide and we are getting a second opinion at Siteman.

Your story is an inspiration, David! I want to come back on here and tell you that once this journey is behind us, it feels as if nothing ever happened!

Nancy

thanks, Paul. Taking notes!

Nancy, welcome to OCF. You will find tons of info and moral support on the forum.

Here is a list of Comprehensive Cancer Centers (CCC) in case you want to seek another opinion.

Best wishes with everything.

CCC list

Thanks Christine! Our second opinion is at The Siteman Cancer Center in St Louis. He was diagnosed at the David C Pratt Cancer Center where our ENT is located. Our ENT comes from Siteman, so this is all very easy to navigate. We are really seeking the treatment options at this point since surgery was 3 weeks ago and included the neck dissection, which now we hear was probably unnecessary. Round and round we go!