I'm 55 year old male, living in NC, had sore throat and small lump in my right lymph nodea area. They removed my right tonsil, did 'quick freeze' while I was under anitisea, found no cancer. A week later they called us back in and said they did find cancer, squamous cell carcinoma. Bummer!
After 4 opinions, 1 from ENT, 1 from Oncology Dr's local, 1 from Surgeon at larger cancer center, 1 from Block Clinic for Integrative Cancer Treatment, they basically all agreed that R&Chemo would be necessary at this point.
They were all puzzled that I do not smoke, do not drink, but did find out I was HPV positive. Upside of this is the prognosis for cure rate is higher. Yeah, finally a bright spot in all this bad news.
I'm 3 weeks into Radiation, via IMRT, and Chemo using Cisplatin.
I'm excited to hear from other with similar situations and I am also taking several supplements to support my system during this battle!!! Yes, approved by my Dr's.

Hello EJ and welcome to the OCF forums. I am also in NC. As a support person to my aunt who is a year out from her diagnosis, and is doing great, I can only share our experience, strength and hope. Am sure that you will find much support and love here. Also great to see that you got multiple opinions.

Dodie

EJ, welcome. As all here will tell you, we're sorry that you had to join us, but welcome you with open arms. From everything I've read and been told, by my own docs as well as folks here, you and are I indeed fortunate that our SCC was likely a result of HPV. My own presented pretty much identically to yours insofar as the swollen lymph node; the diff is that I had the neck dissection and you're getting chemo.

You didn't mention whether or not you've gotten a PEG. I did not, but it was tough.

Anyway... please ask any and all questions. Someone here is bound to have an intelligent and considered answer.

Sending all good thoughts.
David 2

"They were all puzzled that I do not smoke, do not drink, but did find out I was HPV positive."

If this comment is any indication of their collective knowledge about HPV's association with oral cancer then I would run far away and get to a real cancer center!

EJ, welcome to OCF. Im sure you will find lots of help here and many others with a similar diagnosis and treatment plan. Best of luck with your treatments. We are here for any questions you may have.




David...I targeted that phrase myself. Very very scary that all these 'cancer specialists' were puzzled. HPV+ is not anything new and many non smokers get oral cancer.

Chiming in with David, they never heard of HPV induced oral cancer - they must be living under large, flat rocks?!?! 9 years ago, when I was being dx'd, they knew about viral links to OC back then - although it was EBV that they suspected at the time. At least they tested you for HPV - kudos for that.

I was 55 when I was dx'd with tonsil cancer. They did not remove it. The radiation melted it all away along with the cancer. I had adjunctive chemo as well. The good news is that HPV induced tumors typically respond well to treatment.

Well after reading about Dr. Block and his cancer theories, his book and his clinic, I'm not surprised at all that they did not know about HPV. His book and the Block clinic website use every buzz word possible in the Integrative Cancer care lexicon.
I don't think Block clinic is going to be certified as a CCC anytime soon. Still, no harm in getting yoga and vitamins and attention. I guess I agree with the Amazon reviewer who wrote about Dr block and his clinic after he went
[quote]I did go, and I think anyone who is thinking of going should know that the supplements they sell are extremely expensive. It was disheartening, especially when you're so afraid that if you don't do everything they ask your chances of staying cancer-free aren't as good. Expect to pay hundreds of dollars a month. Who can afford that? For how long? It's a sad state of affairs and points again to the notion that only those who "have" are able to get the best health-care available. I also felt that the way he talks about the Block Center is not exactly how it is when you get there. It feels very much like a business, which didn't exactly scream "healing" to me.

Once again, the book has good general information, but so do several other books. No one doctor has all the answers, so learn to trust your gut and try not to act from a place of fear. I know it's hard to do that at a time like this, but it is possible. There's no one that knows your body as well as you do. He may be a wonderful man and doctor, but if he's managing your care by selling you something (his own supplements), it raises all sorts of red flags for me.[/quote]
Charm

EJ

Just wanted to add that my skepticism on self-promoting doctors and their proprietary supplements or in this case, a unique chemotherapy that Block brags no other hospital or doctor uses in America (gee wonder why?) does not translate into a denial of the importance of good nutrition and healthy life-style. Something about the last sentence of your post on supplements approved by your doctors just set off major red flags and reminded me of prior negative things about Dr. Block's supplement store or his scare tactics that you will get a recurrence if you don't buy his overpriced vitamin mixtures I'd read. I personally find it disturbing that a so called cancer center does not even offer radiation or surgery but this very important fact is buried deep within their web site. After reading pages and pages of how Block offers all the best TX, under FAQ they confess
[quote]Does the Block Center perform radiation or surgery?
No, but if you have received a diagnosis of cancer, or believe that you may have cancer and come to us seeking a diagnosis, we can refer you to nearby physicians and medical facilities that provide the full range of medically advanced radiological and surgical treatment options, in concert with the chemotherapy and combination therapies in which the Block Center specializes. [/quote]
Good for you in shopping around for different opinions on what TX to get and having the wisdom to understand that no matter how terrible radiation and surgery are, you will not beat cancer without one of them. Supplements though are a very different story.
Welcome to OCF
Charm

Welcome. to OCF. Im glad you have found this site to help you. Are you being seen at a cancer center? There are some wonderful places in Philadelphia like HUP and Fox Chase. I was treated at Lehigh Valley Hospital in Allentown. There are a million things to ask. You need to know how many oral cancer patients they see per month/year. You should have a second opinion. It was compiled by patients and their caregivers to assist newcomers with the maze they must go thru for the best care. Read the very last heading called ....... [b]The Getting Thru It Project[/b]. Oh and right now you should try to eat everything possible that you like and dont worry about calories. Your eating will be changing and you dont want to have cravings or regrets. Dont worry, its only temporary. Best of luck.