My husband felt a lump on his neck about a month ago. he went to primary dr, then to ENT. We got the results of biopsy just over 2 weeks ago then results of PET scan on 9/25. He has Squamous cell carcinoma of the tonsil. He had a radical neck dissection and tonsillectomy on 10/2. It was in tonsil and 3 lymph nodes and is stage IV due to the size of the tumor.

We have an appointment in one week to see the radiologist to discuss treatment but they are talking about 6 weeks of radiation, 5 days a week. And now are discussing adding chemo as well.

We live in Myrtle Beach, SC. Not a medical metropolis. We have two cancer centers, one for radiation and one for chemo. We can travel for a second opinion for treatment. But how do we know where to go? I know names like Sloan-Kettering and John Hopkins. They are far and it is overwhelming to think of coordinating care and life from that far away but at the same time I want him to have the best treatment available. Where do we go from here? Do we just trust that the local centers can deal with this type of cancer appropriately?

I'm overwhelmed! We know nothing about cancer treatment or this type of cancer.

Any advise as to where to start? Has anyone traveled far or treatment?

Hi Joanne,

Based on my personal experience, I think you should get a second opinion from a major cancer center. They may be able to coordinate treatment at home. My ENT did my first surgery and the pathology showed my margins were clear. I went to MD Anderson and the Doc found more cancer on my tongue and in lymph nodes.

Experience is everything! Also, cancer treatments for head and neck are brutal. You need to look at all options. Just get the opinion so you have no regrets. Cancer is never convenient or cheap.

Good luck!

Hello JoanneB

My mother has Squamous Cell Carcinoma . It started in her left lower jaw area . She had her first surgery to remove her lower left jaw on March 25 2014 and followed with 35 Radiations treatments. In the last week of treatment she had two treatments a day. Then A CT scan and MRI was done in late August 2014 and a recurrence showed up . Just recently on Sept. 23 she had a second surgery to remove the new tumor but there were to many cancer cells in the floor of her mouth so the doctor had to
stop and just recommend chemo Treatments.

We feel like maybe the Chemo should have been done with the Radiation from the beginning . I'm no doctor though that's just my thinking.

We live in Louisiana and have thought about traveling to MD Anderson in Texas but instead we made the decision to stay here at East Jefferson Hospital in LA because the doctors have partnered with MD Anderson . We now have a new Chemo Oncologist who is part of the MD Anderson team and my mom will start her treatments on October 21 2014.

We also no nothing about the treatments or side effects or which treatments or better than others. Someone on this forum recommended Herbetex in the chemo treatments which gives good results. Again I'm in the same boat your in so I'm really just learning myself.

You will find this forum very helpful
Good luck to you and your husband
Heidi

You might also think about a larger medical center a bit closer to home, like MUSC in Charleston or UNC Chapel Hill. Just two ideas of places with head and neck cancer specialty programs. There might be others closer to you. I think you would want a program with a comprehensive team of doctors and other professionals with specialized experience in your type of cancer.

You may have one good shot at this. Is it worth it to you and your husband to be inconvenienced? I've seen people travel and go local with mixed results. My choice would be find the best possible place with the most experience and best outcomes.

It's usually only a 2 month journey with follow ups after. I know it's a hugely difficult task to pick up and move for treatment but in the long run it's only a few months and this is his life.

MD anderson is amazing if you can i would request treatment there. They do have hope houses near most facilities that he can stay at during treatment.

ultimately you want the best.

you cannot top the care you will receive at a CCC.
hugs

In a word "YES", it's worth traveling for treatment. I sought treatment at Johns Hopkins in Baltimore (2.5 hours away from me). My wife and I were able to get accommodations for free at Hope Lodge. We stayed all week and came home on the weekends but may stayed the entire time. They have a bus that can take you back and forth and in the 6 weeks during treatment, several different organizations and groups donated their time and brought meals.

Johns Hopkins is the top hospital for H&N cancer and I can say assuredly that they are the reason I'm here today.

Positive thoughts and prayers

"T"

Listen to fishy above... ;o) don't let distance deter you from seeking top care for a loved one or yourself.

I never once worried (mind you my hospital was 20 minutes away) and while I didn't want to inconvenience anyone - I adopted the - At this point in time - this is more important - mindset.

I still say it to my husband when he complains about our grocery bill (I buy all fresh and a lot of organic, and don't buy processed) You are what you eat. want to get and stay healthy? don't fill up on garbage. So this is more important.

gotta pick your battles. Sure traveling for treatment can be an inconvenience but... it's worth it for the best medical care and best possible chance of survival. This isn't frivolous - it's a human life at stake.

;o)

hugs