Hello,

What a great website and fantastic resource.

I had my first cancer in 1995, at the age of 27 � stage 4 Hodgkin�s Disease � neck, armpits, and chest. I was treated with 6 months of chemotherapy and 30 straight days of radiation.

I�ve had 17, beautiful, �cancer free� years.

On June 27th I was diagnosed with an �aggressive� stage 4 carcinoma on the base of my tongue that had metastasized to my neck. I was reviewed by 2 tumor boards at 2 separate institutions.

It was the determination of both boards that my prior treatment had �narrowed� their options considerably. Because of the size and location of the new tumors� and especially because of my prior treatment, it was decided surgery was the primary modality for survival. Both tumor boards at both institutions were in agreement on this point. Both boards also suggested following up with radiation. Neither board recommended chemotherapy

On July 30th I had a 7-hour surgery. The tongue tumor was removed with the Da Vinci robot. The neck tumor (and 13 additional lymph nodes) were removed by traditional surgery. I was in the hospital for 6 days.

The tongue tumor was 4.7 cm and 2.1 cm depth.
The neck tumor was 3.9 cm.
The tumors are HPV 16.

The final pathology showed that the tongue tumor had 100 % clean margins. However, the final pathology also showed that cancer cells had left the malignant lymph-node in the neck. These cells were described as �theoretical� because the doctors simply don�t know how many have gotten out.

This is where the crux of my question lies. Different doctors have interpreted the pathology differently. The radiation oncologist (who will administer the radiation) described the pathology as �ominous�. He recommended me to a medical oncologist (chemotherapy doctor) colleague of his for an �independent assessment�. This doctor described the same pathology as �favorable�.

In a nutshell the radiation oncologist was leaning toward chemotherapy to �assist� the radiation� and the chemo doctor is not. The medical oncologist feels that my body went through too much in 1995 with chemo and radiation. That fact, combined with the presence of HPV 16 has led him to that decision. Additionally, the surgeons are not in favor of me having chemotherapy. They see this decision as part of the �new paradigm�. Other research I have read has suggested that not involving chemo (with my specific set of parameters) will allow my body to do a much better job healing itself.

Interestingly, I spoke to another radiation oncologist at another institution, and he suggested a low dose of chemo as well. What�s somewhat curious is that the only doctors suggesting chemo are not chemo doctors� but radiation oncologists. Additionally, the medical oncologist (chemo doctor) told me that chemo �alone� would have ZERO curing abilities for my cancer � that chemo ONLY serves to �enhance� radiation treatment.

Ultimately the decision is mine. Has anyone had experience with this type Chemotherapy decision?

Apologies for the long post � there�s a lot to digest.
Any advice would be appreciated. Radiation is set to start September 10th.

Thank You - John

The NCCN guidelines for best practices in treatment today, ( they are reviewed on 6 month intervals) are for chemo-radiation. The reason that you are hearing this from radiation professionals is that chemo therapy in oral and oropharyngeal cancers is NOT curative. The chemo is added to sensitize the cells to the radiation, making it more effective. Chemo used in this combined therapy today is often a cocktail of several drugs (depending on the philosophy and clinical experience of any given institution), but the heavy hitter in this deal is Cisplatin. It also has the worst side effects.

The NCCN guidelines carry a great deal of weight, as they are the combined knowledge and experience of the top institutions in the US today. They composite what the best of the best are doing with success, and publish it so that smaller regional hospitals can adapt their procedures to keep current with what these institutions are finding efficacious.

If I were a young patient with few collateral physical issues, I would opt for the chemo with the radiation. It will tax you, but it has the best long term outcomes. This cancer is very unforgiving of half measures. I think I speak for many here who have seen far too many recurrences in people that didn't throw the kitchen sink at it right from the get go. Recurrences are emotionally and physically a significant issue.

I have to agree with Brian. Hit this cancer with everything in the arsenal. HPV does give a survival advantage but there are plenty of us around who are HPV positive who have had a reoccurrence. Don't opt for lesser treatment on that basis. Tammy

John, welcome to OCF! You have done great with being a 17 year survivor! Congrats! I am very sorry to read about your recurrence!!! Nobody should have to go thru that.

The members of OCF are not doctors but have gone thru quite alot and can help you with info so you can make the right decisions. I love what Brian wrote and agree 100%. If it were me preparing to do rads for a second time I would go for adding a small dose of weekly chemo to help boost the rads. Even though HPV+ cancer responds better to treatments, you do NOT want to be faced with the situation of possibly missing even one teeny tiny cancerous cell. If one cell would be missed, you may not get a third round to get it right.

Best wishes with your continued recovery from surgery and everything else you are facing.

Personally I would suggest adding a weekly dose (vs the 3 Big Bag method) of Cisplatin to your radiation. As Brian has posted the chemo enhances the radiations' killing abilites and is recommended with nodal involvement. Most having the weekly dose do not have as severe complications as those that get the larger 3 doses.

Unfortunately I must welcome you to our site but believe me this site will be your best friend throughout your forthcoming Tx and recovery. I guarantee it!

Yup agreed with all above... Do ht you can now... Also if you are not being treated at a ccc get to one. But other than that I'd do the chemo. I had the big bag method. and it wasn't too bad. It depends on you. Good luck and many blessings

Agreed. Chemo is a must! Find an MO that agrees with the RO.
Kathy

John , welcome aboard. Just ignore the word Rad seed implants. I guess that is words. Sorry LOL

Hi, John
what a hard decision to make. I have a couple of questions -

Did they do any EFGR staining on tumor?
Is the 3.9 cm neck tumor a seperate tumor, or is a lymph node?

Maria