I have been registered and reading this board for about 2 weeks. My sister has squamous cell carc. base of the tongue.. spread to layrnx and nodes both side. Hhad treatment for what they thought was tonsil cancer, but missed the base of the tongue.

Hse will undergo a radical neck disect/remove voice boX(they say it has spead too much to save any part), 3/4 to full tongue removal. She has had her max of radiation. It did not help stop the cancer.

I am having a hard time finding local support group/help in the south bay area in Ca. SHe will be at Kaiser in Oakland. Any suggestions would be greatly appreciated. She is having a hard time even wanting to fight and go through this surgery. She has had a PEG tube for 6 mos and will probably not be able to swollow again. Epiglottis is affected as well.
I am hoping that I can get her here to this website.. She has not had contact with any support groups .

thanks

trish

Dear Trish,
I am sorry that your sister is going through this. There is an organization called the East Bay Cancer Support Group in Casto Valley. Try calling 510-889-8766. You might also try the American Cancer Society. I believe that they have an office in Dublin. Kaiser also has support groups ask the social worker and the MO.

I believe that Walnut Creek has a better oncology unit - that is where I had my chemo.

Trish, Can't help with support groups in Calif. but we will try to hold your hand and give you and your sis hugs any time you need one. If you have read much on this forum, then you know it is all about good information and support from people with experience. Hang in there. Amy

Thank you for the kind words and suggestions. I'm sure I will be back quite a bit as things progress. The medical facility where my sisters surgery is to be does not have any group support or even social services for Head and Neck cancer pts. She will need chemo later and have contacts with Walnut Creek Kaiser and will request to be seen there. My sister is slowly becoming open to talk about/with cancer treatment and speaking and being in contact with survivors. This site has been a great support and source of imformation for me. I hope my sister will join in at some point. I also have learned a great deal to use as
a dental hygienist. I do Oral Cancer Screening on all my patients. I have increased the routine questions I ask in reguards to any signs/symtoms of oral cancer. Thanks so much again>

trish

Trish,
Feel free to email me privately and I will tell of the best docs in WC (at least MO and head & neck). I still go to WC Kaiser for my checkups. They have great oncology advice nurses there and I leaned heavily on them. I had my chemo in WC.

I was fortunate that Kaiser sent me to UCSFCCC for the radation part. Soon they will have their own radiation treatment facilities. Right now it's outsourced.

I just read today that they are going to replace the Oakland Kaiser with an entirely new hospital and a dedicated cancer treatment center.

HI,
Thanks to all that have responded. My sister has somewhat decided to not do any surgery at this point. She will let her surgeons know her final decision this Sunday. Either way the situation is very sad. Her quality of life after surgery would be not speaking or eating or swallow. They said 5% chance. She has my support eihter way. I wish I could just take her pain away. They said 8mos to 1 year without treatment. Again, any suggestions are greatly appreciated.

trish

Trish,
There used to be a support group at UCSF but it was disbanded before I inquired about a year and a half ago. I haven't found any other dedicated Head and Neck cancer support groups in the bay area. I had my surgeries (no radiation) at Kaiser Santa Clara--they will be opening a new hospital here in 2007 but just opened an oncology radiation center here in May. I tried the general cancer support group at Kaiser once-it just wasn't the group for me. So sorry your sister is having such a tough time but know that prayers are with you all. -Susan