Recurrence - looking for next steps

you've been battling this for a long time....you're a tough cookie in my book. 

I'm relieved to hear you're going to go the John Hopkin's for a second opinion.  That is the place that might not look at this surgery as something too hard to do....also, they will be up on clinical trials, and can lead you to one if that is the decision that you end up making.

Hugs to you.

p

My question is you had a second opinion at John Hopkins but they did not do the treatment? If you had a local doctor the first time, I would go to JH for treatment. Yes it might be very inconvenient but it also could be so well worth it. We have a very good hospital and surgeon on staff and the ENT does tonsils thats it. I was not going to put my life in there hands. For me, it was a dicission thet most likely saved my life. I had to have my lerynx removed and I now breath through a hole in my neck. The only way air can get to my lungs is by my neck. The local hospital has told me when I went to the ER I don't need oxygen, which is standard to have when you are hard to breath and chest pains. My local doctor sent me because he told me, he has know idea how to get oxygen to me. By the way, it is very simple. You hand it to me and I put in just in the hole and tape the hose to my chest. Local is not good for everything. We have has a few where it was close to the cartoid artery and were treated. One had the tumor wrapped around it and they could not do anything.

I also was cut from ear to ear and had a neck dissection on both sides. That is when the go in and remove the lymph nodes from base of neck up to my ears, and they are all around my cartoid on both sides. So don't think treatment is over just yet. They may have many things still that can be done.

Bill

Hondo said:

Hi CC

The only words I can say right now is, it sucks to be so young and having to go this but don’t give up hope. Many of us still here were once told by out doctors that we might not have too long to live and we are still here. I am not sure what you beliefs are but for me God can do anything that is why He is a part of my everyday life. I will be praying for you and the doc’s at John Hopkin's to find what will help.

 

Tim

Both my recurrences were around carotid arteries. St Louis told me nothing could be done. I had SBRT tx at Mayo Clinic in Rochester both times. Takes five days. Clean now two years. Best wishes

A second opinion at JHU is a good idea. Also they are making headway with immunology and other clinical trials. I will add you to my prayers for sure...

Barbara

PJ47 said:

Get that second opinion and maybe a third

I almost went to Hopkins for my surgery and live in North Carolina.  I ended up going to Vanderbilt and feel I had a top notch Otolaryngologist whom I chose to consult with initially due to being told I had a carotid body tumor.  Dr. Netterville was my surgeon and he determined that my cancer was BOT SCC and the tumor on my carotid body was really on the lymph node.  Once he did the neck dissection, he did not have to resection my carotid as the cancer was contained in the node which was on top of the carotid body but had not spread into it or wrapped around it.  I feel certain he would have managed that possibility should it have occurred.  It is a very scary sounding delicate surgery but in the right hands can be tackled.  A very experienced otolaryngologist at a large teaching hospital would be your best bet.  

Keep your chin up and you will get through this.

PJ

I am so bothered by the words used, how powerful they are.  I had a new large lump in my neck while waiting to heal enough from resection to start treatment.  The mood was Totally somber, at the best state head and neck center/university med center.  "We are going to biopsy it to prove what we already know, that it is cancer. You will have a PET scan in 2 days and if there are any other sites, we will no longer be treating you for cure.".....Oh my!!!  Praying so outrageously hard and frightened.  It was non malignant.  I WISH they'd all keep quiet until proof positive is in.  And even then!  Have seen this so much as a nurse. There is Always Hope...Just because they say it, does Not make it true! I am telling you this to give you Hope!  I am Praying for YOU.  Tell yourself outloud "I Am Strong, I Am Healthy", like you mean it at least 10 times a day.  Crazy I know, but like your body catches up with you. " This IS the First Day of the Rest of Your Life!  Truth!  Even in the dark, you can still see the light, It's going to be all right.  Going to be all right."  I clung to that and my faith.  ITA with PJ. 

 Other 2,3 times survivors have jumped in, there is hope!  But be sure to get treament in top cancer centers.  I will keep you in my prayers.