Urgent I So Need Someones Help, Please Read.

My friend Kevin was diagnosed with SCC a month ago. From that day of diagnosis until now all we have gotten in the way of information from any surgeon, doctor, nurse, etc., has been contradictions, none of thier opinions match up, they all tell us different things and then on a daily basis they change again. They took a biopsy on a lump on the side of his neck, took some skin out of the back of his throat, and some off of his tongue.  They said it is cancer, SCC, and we want to operate in 3 days.  So they did radical surgery on Kevin.  They removed the lump in his neck, some of his tongue, scrapped his voice box, and removed cancer from where his tonsils used to be.  They said that the cancer spread to his lymph nodes.  They gave him 7 weeks.  THen 2 days later they said maybe 7 months.  Then they said, well Kevin we propbably didnt get it all, but at this time we think what is the point in cutting open the other side of your neck to look for more cancer spores, we are going to advise radiation therapy.  Honestly could some one please tell me your own opinion or give me your prognosis... I have been reading all of your guys discussions the last four nights, and this is so awesome, so much more educational and full of real KNOWLEDGE that no doctor in the world could ever come close to.  Please respond.  GOD BLESS TO ALL    Michelle

I would find myself the best teaching hospital within reach of where you live and I would bug them for the quickest appointment you can get.  Go to www.spohnc.org as a reference point.  SCC is not a death sentence when handled by the right doctors.  I would also find a Radiation Oncologist that specializes in Head and Neck.  I know some great docs in the NY & Philly area.  Where do you live?  Don't give up.

 Best of luck,

Rob J.

Michelle:

Where do you live. I have SCC and am starting chemo next week. The cancer had spread to my lymph nodes on the left side of my neck. No one has given me a death sentence yet. I friend of mine went through this same thing 5 years ago and he is still with us. There is a lot of treatment out there for this. He needs a PET scan to see if it has spread anywhere else besides the head and neck. Please get a second opinion.

Dave

Rob,

 My husband has been diag. with stage IV mets to lymph nodes and lungs.  He was given a death sentence -- anywhere from 3 months (2 have already past) and 2 years.  Drs. are very blaise about declaring him dead.  He starts chemo in 2 weeks.  They have given us no other options.  2 opinions - one at Princeton Medical and the other at Robt Woods Johnson.  We're at Princeton right now because it is closer and Robt Woods says they do not specialize in head and neck and thus will not take him anyway.  Looking for additional opinions and better options.  Who do you recommend in Philly (we are in central jersey)?  I was thinking of going to Hackensack University Hospital.  Does anyone know about them and their head and neck division?

He is fading away mentallly and physically before my very eyes but wants to "enjoy" his last Christmas (damn doctors - they proclaim him dead so he's starting to believe it!).

Anyway, any advise particularly from those declared dead sometime ago would be greatly appreciated. 

Bless you all and have a wonder Christmas and a very happy new year -- and many, many, many more!  Nancy

Dave- Thank you for your reply sorry to hear your going through the similar deal. What is a PET scan?  I am in Washington state, near Seattle, and my friend Kevin is in Sacramento, Ca.  His doctors are all telling him different things.  They said they thought the cancer was probably on the other side of his neck too but that he is too week to recover from another surgery.  I feel that he is on the fence about radiation therapy, which they adivse him to do,  but from what I have read on this message board radiation therapy can be good for you or it could also kill you.  People having to live through the starvation, after living through the cancer... with his immune system  being so low that they dont want to operate on him again, yet they will opt to do radiation.  I am so very confused... good luck to you with chemo, your in my prayers. Michelle

Rob-Thank you for the ideas, I am going to have Kevins wife try to find any teaching hopitals in Sacramento, Ca. I think  that it is time to start trying to explore alternative therapies and such, I am not too sure if he is going to do the radiation.  I am so very scared to lose him, he is my sons godfather, and such a dear, dear friend of mine, well he is family.  Thank you, I am open to any suggestions, thoughts and ideas. God Bless- Michelle

Nancy-

God Bless You, your dear husband, and family. My prayers are with you...Could I make one suggestion to you?  No matter what happens or what the out come may be, Reiki is a beautiful healing art.  If you look Reiki up on the internet their are many sites that will give you descriptions and explain it to you.  But you should try to find a 'registered/liscensed' Reiki master near you to come to your home either every day or what ever would work best for your husband.  Reiki is not a religion or anything weird, its an ancient healing art used for thousands of years...he would definately have a blessed Christmas.  Best Wishes, God Bless.

 Michelle

 

Michelle:

A PET scan (Positron Emissions Tomography) is like a CAT scan. They will inject a small amount of radiaoactive material with a very low half life into the blood stream along with glucose. Cancer cells will absorb the glucose rapidly, Then they will put the patient throught a special CT scanner that will pick of the radiation. This test is very good at telling the doctors where cancer is not. It can give false positives but will not bive false negatives. In my opinion, this is a must to see if the cancer has spread anywhere else in the body. The only 2 places in the body that it can not pick up are in the brain and the bladder. Everything I have been told a read about SCC in the tonsil and throut area is that it will rarely go to the brain. I hope this helps. Please keep me informed. Also, please see if there is a place around where they have a Tomotherapy - HIART radiation machine. This is what they are going to use on me. Hopefully will be starting in 2 more weeks. I understand that they are having good success saving the salivary glands. The radiaiton is not going to be any fun, but it is something that I am going to have to do. I just looked at Tomotherapies web site (Tomotherapy.com). There is a machine at UC Davis Cancer Center in Sacramento. This might be a good place for Kevin to get a hold off.

Dave

Monmouth Medical Center in Long Branch NJ has an excellent Head & Neck cancer department.  I strongly recommend seeing Dr Darsit Shah.  Good Luck

Hi Nancy,

If this is still a question for you, try Fox Chase Cancer Center in Philly or Crozer-Chester Hospital in Chester, PA. It is part of the Fox Chase network and the place I received my treatment last year. Like my dear friend Rob said, SCC is not a death sentence. Rob and I are living proof.

Joe