I am extremely confused. My 48 year old mother was diagnosed in September 2008 with a small tumor on the side of her tongue. By the end of October she was extremely dehydrated and they inserted a feeding tube into her stomach. The tumor had become so large on her tongue that she could barely swallow. At around the same time they did a CT scan and serval lymph nodes were now involved. They had originally scheduled her surgery for December 5, but realized that the cancer was just too aggressive and moved it up to November 10. After the doctor was involved in car accident they then moved it to November 17. She had a 16 hour surgery, they removed almost her entire tongue and used part of her arm to rebuild and also grafted her upper thigh. They did a complete neck dissection and placed a traech in at the time of surgery. They stated that when they went in the cancer had spread even more into lymph nodes on the other side and down closer to her collar bone. They were not able to get all of the cancer out either. Two weeks ago she completed 7 weeks of radiation (5 days a week) and 3 sessions of chemo. She has severe swelling in her face and was having chest pain and they did a lot of tests this past Friday. They said there is cancer in her lungs. They have started her on anti-bodies once a week. I guess my question is what should we expect? It seems to me that it is just too aggressive for her to fight. I want to optimistic, but not naive.

Hi and welcome to OCF

Thats a lot to deal with in such a short space of time,and it must be very difficult to get your head round.If i am honest it doesn't sound the most encouraging news,but in view of the extensive treatment she has undergone the medics must have felt that there was hope for a good outcome when they undertook the surgery.I am surprised they didn't scan her body for spread before the treatment plan was started in view of the already recognized aggressive nature of the disease,but this particular form of cancer can run a very unpredictable course.

What exactly is the "antibody treatment " she is having?

In terms of what to expect,that depends very much on the doctors opinion on what the likely outcome is going to be,so i would get some more detailed information,and then ask the questions.Is this curable,or treatable ,and what are the options?Whatever the answers there will be someone here who's had trodden the same path and will be able to help.

liz

Initially they said it was both curable and treatable. they havent said since. They scanned her entire body before the surgery.

I am not sure what the medication is called but they said that it will not take the cancer away, but hopefully stop it from growing and spreading further.

The thing that freaks me out the most is that this apparently grew while she was being treated.

jrch26,

That sounds horrible all around! By your mother's age, I'm guessing you're young and now faced with a future without your Mom - something I can't even imagine. Please check and see if the hospital or treatment center has a support group for children of cancer patients that you can join. Having a safety net of people that are and have been there might help you face this a little bit more prepared.

My thoughts and prayers are with you and your mother.

- Margaret

Unfortunately that happens.My husband went through all his treatment and at the end of it he had four tumours in his lungs that weren't there when he started.If the cancer has already got into the lymph glands before it is detected then this is not unusual.It sounds as if the treatment she is getting is chemotherapy of some description,as this can be used to slow down or arrest the growth of the lung tumours.Is she at home?and how is she physically? Has she lost a lot of weight?can she take nutrition by mouth or does she have a feeding tube?is she active or is she sleeping a lot?and how does she feel about all this information?

liz

She lives alone and takes care of herself-she wouldnt have it any other way. She takes everything through a peg tube-nothing orally. She lost 35 pounds but has leveled out since she got the eating under control. She sleeps alot but because of her treatment. After hearing this information her answer to me was that she was super sad! that about sums up the feeling of our entire family.

Oh dear

i am sorry you and your family and especially you mum are getting such disappointing news.I think perhaps some emotional help is what you need,and someone to talk to about what is going to happen in the future,perhaps your hospital will be able to help.
liz

I am sorry for your mom's situation but I would like to know who in the world saw her in Sept with OC and thought Dec was OK for surgery?

I'm so very sorry for what you are going through. I imagine I am close to your age, my mom is 52. I can't imagine how you must be feeling. Your mom is lucky to have you posting here. As you are finding out there are some great people here. Have you been able to do anything to deal with the emotions? Is your mom having a hard time with that? It may be too soon yet. It's so much information in the beginning. Are they planning on doing any surgery for the lungs? Has she gone for a second or third opinion?

She saw her PCP in September who referred her to an ENT. The ENT diagnosed the cancer and said that it would require surgery. She decided to go to cancer center to a head and neck cancer specialist. They are the ones that scheduled the surgery for December.

This is something that we still question. would the cancer have spread as much had they operated sooner? I contemplate that over and over. I have finally come to the realization that I could make myself ill with the "what if's"!!

There is also something that bothers me so significantly that i have started to see a therapist. I am unable to go over and be with my mom. I am crippled with fear. i cant handle any of the medical part of it. I have two younger sisters that are able to deal much better than me so she is not alone. My fear is that this disease is going to take her and I wasnt there.

They said that the spots were inoperable. They have said that the drug she is receiving today (for the first time) will hopefully stop the growth -- fingers crossed. this could be an indefinite treatment.

I really do thank all of you for the support. The case worker at the hospital did not prepare me for any of this.