Hi,

I am looking for info for my sister-in-law. She was dx with oral cancer last Thurs. Preliminary report shows cancer in tongue, jaw and neck. She is currently in the hospital in Battle Creek, MI where the tests were done and she is being treated for infection in the mouth and neck. Final results aren't in. Are not advising surgery. Chemo is up in the air, mainly advising radiation treatment. As a BC survivor, I know she is in for a long treatment plan.

We are currently looking for cancer treatment facilities in Illinois, Peoria, Rockford; or the Quad Cities; or Iowa around Iowa City, Waterloo, etc.

Has anyone received treatment in these areas???? I am pushing for her to go to a major hospital with the most updated radiology department. She wants something closer to home which is just south of Princeton, ILL.

Any suggestions would be greatly appreciated!!!!

Leanna

Hello, Leanna.

In Illinois, it looks like The Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago is the no. 1 place. You can read about it here:

http://www.nccn.org/profiles/northwestern.htm

An excerpt:

"The Cancer Center has major research strengths in breast, genito-urinary, head and neck , and gynecologic cancers, hematologic malignancies and pediatric oncology."

I used to live in Chicago, and don't know of anything located downstate approaching the expertise of the people at Northwestern. If I were still in Illinois, I would head there in a big hurry.

Here is a link to The National Comprehensive Cancer Network medical centers: http://www.nccn.org/

I hope this helps. Come here as often as you wish with questions, as there is almost always someone with relevant experience to share.
Joanna

I agree, you need a second opinion as soon as possible, Packer was advised against surgery 5 yrs ago. His ca was extensive at that time also. ENT he saw simply did not have the ability to perform such surgery and said it would leave him looking grotesque........BIG BIG mistake, ending up with surgery 3 yrs later, and told that was the way to go from the beginning.......I`ve learned along the way, don`t go with the first opinion you get.......Right now five years later we are looking into getting a second opinion again if we don`t like the results of Packer`s cat scan. So, again, get a second opinion fast........it sound like you are dealing with a doc doesn`t know much.........prayers your way, Dee

Hi Leanna,

Just to show that everyone and every situation is different.....Heather did have surgery and I have questioned that decision many times in the last few months. I wonder if her outcome would have been better if she had received chemo and radiation (RAD) instead.

That second and even third opinion is very important. And going to a doctor who deals with head and neck cancer on a daily basis is also crucial. A major cancer center is definitely the best place to go.

I would strongly recommend if she does have RAD that she have chemo with it. It just doesn't make sense not to go all out when fighting this disease. From reading the posts on this forum, it seems like a lot of the major cancer hospitals are giving chemo and RAD together more often than RAD alone. Again, this is just my personal opinion. You need to get the opinions of some top docs in your area.

Rainbows & hugs,
Rosie

I completely concur with Rosie. Every one of us is different. In my eight months on this forum I have yet to find a case identical to mine (I mean how many different variations of cancer can there be in an area about 4" X 4"?). Opinions are like assholes - everyone has one. The ultimate decision for your treatment must rest between the expertise of the doctors and your confidence and comfort level (and multiple opinions if need be). Seeking out the best doctors is absolutely mandatory if you want the best outcome. As Joanna said in her post, NCCN network hospitals are a good place to start. I would accept nothing less -you only get one life. "Convenience" shouldn't even enter into this discussion. I traveled 60 miles a day for radiation because I wanted the best. All hospitals are NOT created equal.

if need be and financial problems prevent you from traveling to the best hosipal, there are several organizations such as Angel Flight, these are private pilots who donate their plane and time to fly you back and forth to treatment. we live way Downeast Maine, and I`ve lost track of all the flights we`ve made back and forth to Boston, so don`t let distance prevent the best treatment

Hi,

I just joined this evening, I am new to all of this...so here goes...

My sister (37) has Advanced Recurrence Squamous Cell Carcinoma of the Head and Neck. She was diagnosed 3 years ago. It returned a year ago. She has been going through more then anyone could ever imagine. I have never in my life ever seen this type of cancer. It has to be the worst. She hasn't spoken or eaten for the last year. One year! Are you kidding me! She has 2 beautiful daughters, who are asking so many questions, just as many as we do. We have no answers for them and the doctors don't have any for us. Really. We are taking this day by day. Please, Please, I beg you, if anyone is or has gone through this, please reply we need some support, some answers, just knowing that someone else knows what we are talking about would be greatly appreciated....take care...Flo xox

Flo,

It's late, so I'm not going to write a lot tonight, but rest assured that you are not the only ones going through this. My daughter is also battling a recurrence (base of tongue cancer) and she can't eat or talk either. It hasn't been as long for her as for your sister, but it sounds like they are in a similar situation. Heather is in a lot of pain and is on a constant morphine drip of 65 mg per hour. She has a tracheostomy, 2 draining fistulas in her neck, a double tube which feeds her small intestine while draining the bile from her stomach at the same time. Almost all of her nutrition comes from TPN given intravenously, though. She can only tolerate small amounts through the tube. She has a tumor in her spine which has destroyed her 5th vertebrae and basically paralyzed her arms. She can use her right arm from the elbow down, but on her left, she can only move her fingers. She needs help to walk, help to use the bedside commode, help to bathe, etc. For about 5 weeks, her face was swollen like a balloon and her tongue protruded about 2" from her mouth. That has since improved, thank goodness. She has a 6 yr old daughter and it is very hard for her also. Although I must say she has been pretty good with everything lately. Anyway, I think I know some of what you are going through and I would be glad to correspond with you, either by e-mail or here on the forum.

Rainbows & hugs,
Rosie

Flo, we also know what you`re going through, I`ve been fighting this for 5 years.......I`ll never talk or eat again. I`ve had a trach and feeding tube for 2 years. I`ve had the lower part of my face removed and rebuilt. I`ve had seven surgeries in less than 2 years. You are not alone in all this, if we can help, let us know.......It`s one hell of a battle, we`re all fighting............Packer and Dee

Hi Rosie,


Thank you for replying....I am sorry to hear about your daughter. What is her prognosis? What do they tell you about her condition?

My prayers are with all of you. You are a caring mom and grandmother to help your family and others.

My sister has one open wound that is draining, that she is constantly cleaning 24/7. What is your experience with that? Does your daughter have a wound specialist? She recently had a high level of calcium which was making her thought process...a bit crazy. She was dehydrated and her face is also swollen like a balloon. But, one day it is really swollen the next less, then back again. Do you know what that is all about the swelling...We are getting different stories. She just found out that her thyroid hasn't been working which may be the cause of the swelling. Oh, my god, I have so many questions for you....I have a drs. appt this morning, so I must end here. I look forward to chatting with you by email. Any advice would be so very much appreciated. Anything at all. Thanks so much Rosie!

Take Care,
Flo
XoX