Nasophranx Cancer S2/S3

Kenny-

Welcome to the H&N forum, no visas necessary.

I cannot provide a great answer to questions 1 & 3, but know a second opinion often satisfies and clears up the often confusing  treatment options.  At a minimum you should have a team with lots of cancer treatment experience, a proven track record.

The direction you go, should become evident.  Your team will help you and our team of “been there, done that” experts san maybe help fill in the blank spots.

Good luck,

Matt

Welcome to the group, and sorry you need to be here. You did find the best group there is.

First I'm not a doctor or a lawyer, but I will give you my opion.

You are here legally and you should have the same rights as a US citizen;

Rights, Protections and Resources Pamphlet: 

http://travel.state.gov/content/dam/visas/LegalRightsandProtections/Wilberforce Pamphlet English Online Reading Version 12-22-2014.pdf

Second opnions are very good to have to see if they agree on treatment. I do recomend going to a larg place that has a tumor board of doctors. All the docters, surgens, Oncology, Radiation, Chemo Onc, and Nutrision and radiology, all get together and come up with the best treatment for YOU.

Work work place: Yes I told all my bosses and got total suport from them. With me, I could not be fired or let go due to illness, but they do not have to keep the spicific job you had open. They do have to have a job for you when you come back. My job had to be kept for 120 days to have the same job I had. If it went longer I would still have a job, just might not be the same one. They can't fire you. Some companys will keep your job much longer, this just was my companys policy. Read the pamphlet on your rights. Talk with their HR department, AFTER you speak with your boss you trust.

Do you have good insurance through work? Let's hope you do. 

Here is a list of the best places to be seen for this. I would never go to a local hospital un less it was a major one. This is set for ENT so look at it to see how they rank and then change it to cancer and check rateings. I got a #9 And #10 so for me that was where I went. Some of your choice might be made based on family and what would be the easiest on them, but make that a second priority, and friends do not count in this dission. What I mean is it might be nice if they could come to visit, but if the best one for YOU is farther than they could drive to visit, go with the best. Your friends will understand, you are fighting for your life first.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

I do wish you the best and hope this information may help. This is a rough road you will go down with your treatment, but you will get through it as many here have already. It is scarry, and lots of unknown's make it worse. You will have more information when the PET/CT comes back.

Also as of right now, you are a survivor, and you will not be alone in this fight. There are many on here that will be able to anwser so many of your questions, but it does effect everyone just a little different. I will keep you in my thoughts and praayers, but remember you will beat this.

Bill

Kenny- said:

Oncologist first session

Thanks for the advise everyone! It is great to have such a great support group. 

 

I got my hands on the path report and it mentions "poorly differentiated", which after looking up sounds like an aggresive cancer. Anxious for the PET.

 

Treatment proposal - Just met my oncologist for the first time. Things are moving quickly and by next week I'll know. The proposed treatment (pending PET scan) was 6 weeks of radiation + 3 doses Cisplatin; followed by another 3x Cisplatin after the primary treatment. The entire course is about 5 months. I didn't get a chance to talk about tubes but will ask the next round. Did I miss any specific questions? 

 

Travel - How did you manage traveling to a different state? I'm seriously considering moving to Houston (MD Anderson) for the duration of the treatment. However, I also heard during this time the body is weak, prone to infections, etc - staying in temporary housing with the family I wonder if it causes just more stress. How is everyone's experience with this? I looked up the clinic I'm going to they're #24 in the ENT, but only "High Performing" in Cancer. 

 

Work - I'll be taking that advise and speak to my trusted boss on this. They have to know sooner or later...

 

Thank you so much for the feedback! 

 

 

 

 

As others have mentioned, it's important to get treatment at a hospital that has doctors with experience with your type of cancer. Having said that - I caution people not to put too much weight in rankings like US News "Best..." having looked at how they arrive at their rankings. Moreover the rankings reflect the opinions of (peer) doctors that are sometimes a year or two behind the publication date. The kind of stats you will want to know is how many cases of your type of cancer have been treated at that hospital? What are the outcomes? What kinds of certifications and training do the doctors who will be working with you hold?

As a former educator I know that people like to boil things down to a number (or ranking). Look at how we are trying to quantify what kids know by testing them to death. And that number still doesn't capture the whole picture. So I guess what I'm saying is consider many factors when deciding where to be treated.

We were very lucky to have a national comprehensive cancer center in our hometown, but we still looked at options elsewhere just in case they had something to offer specific to NPC. I was relieved to know that we could get the care we needed at a high level without having to live away from home. While we don't have immediate family in the area - our friends, church family, neighbors and work colleagues have all stepped up to help us when emergencies arose, and kept our spirits up when we were discouraged. I don't think we would have managed as well away from home.

I'll say a prayer that you make good choices and are guided to just the right physician for you Kenny.

Barbara

hi, ya, kenny.  i just want to say hello an welcome to our club.  in this club, we hate it when we get new members....:0(  i'm sorry you need to be here but very glad you found us as now you will never be alone.  i don't know about your rights but want to say good luck.

God bless you,

dj

Kenny- said:

Thanks for more advise that

Thanks for more advise that is pouring in. The family situation doesn't put me in the best spot for traveling for this treatment. I've to make tough choices on the travel which I'll seriously be considering.

Could I build on the experience of those who had to travel out of state to MD Anderson? How did that work out for you? 

Welcome to the group. Is it possible you could have your treatment plan developed at MD Anderson and administered closer to home? For years, my father-in-law has been treated locally for a blood cancer, but the doctor communicates with Mayo Clinic to adjust dosage, etc. I was treated at a small local hospital, but know my oncologists and support staff were well experienced using IMRT and newer targeted therapies. 

I had NPC Stage 4 many years ago.  I traveled from SC to MDA for treatment.  I was in a clinical trial with chemo first and then 7 weeks of radiation.  I would fly to Houston for the chemo then fly back home a few days later and 3 weeks later go back for another chemo treatment.  I stayed in an extended stay hotel near the medical center during my seven weeks of radiation.  Many of the hotels have free shuttles to the medical center.  I think about half the people in my hotel were patients or families of patients at the medical center.

There are several churchs and other organizations that have furnished apartments for patients and their family who are treated at MDA and the other hospitals in the Texas Medical Center. The apts are a considerable cost savings over a hotel, but at the time there was a waiting list.   I met another patient while I was having treatment who rented a furnished condo/apt for 6 months as this was cheaper than a hotel.   If you decide to go with MDA they have a good social work dept which can provide help with housing options. 

MDA treats a lot of international patients and patients from all over the US so there are resources there to help with travel and accommodations.

Meredith

Kenny- said:

Coughing Tissue Daily

I've contacted MDAnderson, just to get treatment analysis/second opinion. Their evaluation cost was $29,600; just for evaluation of all my scans! This is excluding treatment options. Did anyone had experience of such a fee? finances are going to be hit pretty hard. 

 

I'm getting quite nervous as I'm been having "tissue" when I clear my throat - on a daily basis. My treatment should be starting in 2 weeks, but it's getting scary. 

My insurance was billed $12,000 for the PET/CT. The total cose before and until I got out of the hospital cane to $350,000 and I never had chemo or radiation. Hospital room was $14,000 a day with no treatment. Now what they bill the insurance is not what they paid. 

Kenny- said:

PET Scan out S2

PET scan is out, and was very fortunate to be confined to nasophranx i.e. T2N0M0. I didn't fully understand all the technicalities of the report and will follow up tomorrow.

Treatment should start next week.  

thank you everyone for the support. It has prepared me, at least mentally, for what's about to come soon.

Kenny that is good news in it's own way and i'll try to explane why. There is 4 T's T1 is the lowest and T4 is the worst.

The "T" is the tumor and how large or how far it has gone. This is only for the Nasophranx as the other locations are similar but just a little diferent. 

http://emedicine.medscape.com/article/2048007-overview

 Which means stage two and on the lower side of that. This means it was caught early and treatment will be easier to treat. Just an FYI nowadays they treat stage 4 and beat that all the time now so a T2 is even better. 

It is a rough road with the treatment and lots of bumps in it, but you will beat this and when it is over you will be ok. Just take one day at a time and some bad ones just go hour by hour. Drink lots of water and keep swallowing and stay hydrated. It would help to put on a few extra pounds before treatment. Before my surgery I was a T4; N2; M0; as they thought it had gotten larger and spread to my lymph glands. However, after the surgery I was only a T3; No; M0; so it can get better once they start the treatment. Mine was just above my vocal cords so surgery was the best for me as my lungs were bad. I'm at two years, in five days,and have been NED[No Evidence of Disease] the whole time. You will beat this as well and you are not alone in this. As others have said, we will try to answer all questions and are here for support.

Bill