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!

Hi Nancy,
So sorry you and your husband have become a member of our family. That's exactly what we are here, a family of fighters. We are here to support each other no matter what phase we are in.
You have gotten lots of good advice. I know it's hard to hear all the different opinions. I do agree with David regarding the surgery. Kevin had several nodes involved, testing positive for scc, but they didn't do any surgery other than to remove the primary BOT tumor. The MO felt it would weaken his immune system too much. Kevin pushed for surgery, but they refused and after the first round of induction chemo, you can see what we had from our signature at the bottom, the nodes shrunk down to the point you couldn't even feel them any more. We did one more round of induction chemo, then IMRT (x 60) and Erbitux. They wanted to do Carboplatin with the Erbitux but Kevin said no. Hopefully that won't bite us in the butt later.
Good to get the second opinion. The Erbitux has it's share of side effects as well.
Please keep in touch every step of the way. You are not alone.
Kathy

Welcome Nancy,
sorry you had to join our forum. As a new member myself I can say that everyone on here is amazing and so helpful. I had a neck dissection too as there was 1 highly suspicious node and 1-2 other rounded nodes. I ended up with 9 involves nodes out of 67 which means there was 6 in there that they really didn't know would be a problem until hey were removed so I wouldn't say the neck surgery was a waste of time. At least you've got peace of mind that its all clear there now.
Best of luck for your next appointment.
Cheers, Mel.

Today we meet with the Oncologist to discuss his opinion on adding chemo to the radiation. Have myself armed with tons of questions and information that I have gathered. They want to use Erbitux once a week. Husband is at his dentist right now getting a deep cleaning on one side of his mouth and returns Monday for the other side. He has begun Flouride (sp?) already.
Thank goodness he has great dental health right now. I am so consumed, angry and frightened that I find it very difficult to function. I do what has to me done, try and smile but the tears keep flowing. And we have only just begun this journey.
I will try and figure out how to do a signature at the bottom of my posts, but I do not have all of the proper diagnosis info at hand. We have not been given a formal sheet of paper with that information, just what our ENT has told us verbally.

Thanks for reading andf all of you support.

Nancy

Good luck with the appointment Nancy. Don't be too hard on yourself, there is nothing easy about this and many of us went through this before the appointment with oncologists. You already have a good advantage.

Keep good notes and if you can't get it all, stop them and ask questions. No questions implies you have none. Keep copies of things if you want to document at home later. I can tell you are organized and will settle into all of this fine.

Ed

Thanks Ed! Just tried my best to add my signature. Looks pretty lame, but gets the info out there! I will always question because that is who I am. I never just accept things as they are and I always am seeking more. However, I realize at some point my husband and I will need to make that all important decision on treatment and begin that journey.

Nancy

I just wanted to respond to the note that asked why the neck dissection when the rad/chemo would do the trick. We had the same question to our ENT.. after the surgery, and she said that she was sticking to the tried and true methods. I then had a conversation with another mom at my son's athletic event.. she works at a nearby biotech firm (ya know here in silicon valley/sf).. and mentioned that they are also working with new methods of treatment that would reduce/eliminate radical surgeries. Be sure to ask your dr if they are familiar with the new practices!

I had already asked that question of our Surgeon and he does not believe in just radiating and chemo. He told us to go to MD Anderson if we did not want the surgery, but that he felt there was more risk of a reoccurance if we just did rad and chemo. He believes in removing the cancer and then aggressively following with tratments appropriate for each case. Our meeting with the oncologist went very well. He said with surgery and radiation we would have about a 75% suvival rate and if we add the Erbitux, it goes up to 90%. He has had nothing but excellent results combining both. The radiologist is Monday and our second opinion next Thursday at Siteman. Whew! Took lots of notes and asked tons of questions. Husband walked out and already scheduled the trial session for Ebitrux for the 25th. We can always cancel. If it is well tolerated then he will have 1 1/2 hours of it once a week along with the radiation. Husband is ready to go and I still want some answers! God love him!

Nancy