Hello, my name is Irene
My husband has just been diagnosed with SCC. He is 57 years old. From when he had his CT scan to having a biopsy, it has taken five days. We are meeting with his doctor and oncologist tomorrow.

His first complaint was a lump on the left side of his neck, which was very tender, the doctor arranged a CT scan, then he had a biopsy. (Will have the results from this tomorrow) The primary site is on the base of his tongue. The tumour is slightly smaller than a sugar cube. They have told us they will not be surgically removing the tumour, but will treat it with 5 radiation treatments per week, plus one chemo per week. The surgeon will later remove his lymph node after treatment has finished. 18 months prior to this he suffered a heart attack. He is very fit, (lost over 35 lbs) complete change of lifestyle and now this. He does occasionally drink, used to smoke, but only socially.

We are both from England and presently residing in the USA.

Any suggestions or advice anyone can give us would be greatly appreciated. I am trying to make a list of questions to ask the doctors tomorrow.

Thank you.

Irene,

I'm sorry you and your husband are having to deal with this, but you've come to a good place to get the information and support you need.

Is he being seen at one of the major cancer centers? There is a list of them under "Other Resources" on this site (here's a link to it:
http://www.oralcancerfoundation.org/resources/index.htm#centers). With this type of cancer, it's really important to get the expertise of a head and neck tumor board representing the various disciplines: radiation, chemo, and surgery, as well as dental professionals.

Radiation in particular can take a toll on the system, even in otherwise healthy patients. It's important to keep up with daily nutrition and hydration goals (there should be a nutritionist available to help with specific dietary recommendations). The effects of radiation usually take awhile to show up, so he may have 2-3 weeks where he's feeling OK, and then suddenly notices changes such as loss of taste, fatigue, mouth sores, thick mucus, and swallowing problems. His medical team should help stay on top of the situation and be prepared with medication for pain management.

If he's working now, he should have a contingency plan in place with his employer to take some time off, if necessary. Different people have different responses to this kind of treatment -- some are able to work at least part time during some or all of it, while others find it impossible (this can also depend on the nature of the job).

Try to read up as much as possible on the posts on this site. There are many people here who have made it successfully through the kind of treatment your husband is facing, and have posted suggestions about how best to get through it. Feel free to check back here often with your questions and concerns.

Cathy

Thank you Cathy. We are currently being seen at the University of Wisconsin Hospital. They told us that they used the Mayo Clinic and a Hospital from Chicago to obtain second opinions etc.

Irene

irene,

As suggested, you need to be seen at a major cancer center if at all possible. I would ask to be tested for HPV as it may be the culprit to why he has this cancer. If he is HPV+ studies have shown that removing the nodes may not be necessary and that is worth looking into.

As you can see my Dx was very similar to your H's and I was told surgery was not needed so for his sake please inquire.

Repost after you know more and you will get all the info you need.

RT /ct, without surgery, is pretty standard for base of tongue cancers according to the NCCN Oncology Practice Guidelines. See Orph-4 http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Also, University of Wisconsin is a Comprehensive Cancer Center. They see over 500 H&N patients a year. See: http://www.uwhealth.org/servlet/Satellite?cid=1103038108482&pagename=A_UWH_HOME%2FAArticles%2FuwhDiseaseDetail&c=AArticles

In my opinion, for what it's worth, it serves the patients better if we do our homework on whether they are already at a CCC rather than scaring them into thinking that they might be getting bad medicine. There is a list of CCC's and CC's on the home page. http://www.oralcancerfoundation.org/resources/index.htm#centers

gary,

When you suggest that we do our homework to see if the poster is already at a CCC and you refer us to the OCF's resourse index for centers which I think is a admirable suggestion, however unless I overlooked something, Univ of Wisconsin is not listed.

David --

You're right: University of Wisconsin is not listed on the inital page you come to when you click that link above. You have to click on the "Resource List" link under "NCI-designated cancer centers" at the top of the page. Univ of Wisconsin is on that list.

Here's the direct link to the NCI-designated centers: http://www.oralcancerfoundation.org/resources/cancer_centers.htm

-- Leslie

Link directly to current NCI list of CCC's and CC's:

http://www3.cancer.gov/cancercenters/centerslist.html#L33

Link to NCI program description and definitions:

http://www3.cancer.gov/cancercenters/description.html

You can rest assured that I do my homweork on these things.

Perhaps you have NCCN member institutions (of which there are 20 currently and all are CCC's) confused with NCI's listing of CCC's of which there are 39. There are also 22 Cancer Centers.

About NCCN: http://www.nccn.org/about/default.asp

Splitting hairs here, Brian and I both were treated at NCCN member institutions - he at MD Anderson and myself at UCSF.

Hello again,
We saw the Doctor and met with the radiologist briefly. We were told that his stage is T1 N2B. He will undergo radiation and chemo for seven weeks. A molar tooth in his upper jaw (left side, same as the cancer) has dropped down about 1/4 inch, they said that there was a cyst in his sinus cavity, and that it was almost certainly benign. We will be meeting again with the radiologist either later this afternoon or tomorrow to go through the treatments, dental work etc. that needs to be done. Thank you everyone, I am so glad that I found this site. I certainly don't feel so alone now.

Hi Irene,
This is a consensus of your medical team? Has there been a tumor review board? Has he had a baseline TSH and hearing (audiology) test? PET/CT? These are some questions to ask. Teeth removal can be tricky as well. If you are in doubt or not confident, about any of these issues, ask for a second opinion.

We are also here, with our experience, strength and hope, for you. Things typically move very quickly at this point.

Page ORPH-2 are the current NCCN recommended treatment choices for your general information in the link below:

http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

These same guidelines also reside in the treatment section of the OCF site at this link http://www.oralcancerfoundation.org/treatment/guidelines.htm

Hello again.
T thought I would give everyone an up date. Today he had a pet scan (we've not had any results yet). We met with the team last Friday and they were all very positive. They didn't try to gloss things over and told him what to expect. They examined him again and took more photos. They also said that the tumours in his neck were larger than the primary tumour, which tells them that the cancer is aggressive. He will undergo 33 radiation treatments and five chemo. As far as the cyst in his sinus cavity goes, they are sure it is benign. He is due to start treatment on march 21st. He also saw a dentist who removed his rear molar. He is extremely tired which I didn't expect, until the treatment started, but I assume it is partly shock because of his condition. Thanks everyone for your help.

When you get a diagnosis like this, you feel that you are the only one. Since reading most of the messages on this site I don't feel so alone. I pray for everyone that is having to deal with this horrible desease including the caregivers and the patients.

Irene

Dear Irene, You won't ever be alone if you stick with us, because we all know what it takes to fight this battle, be it patient or caregiver. The strong,courageous people here will hold your hand as long as you need us to. I hope you are starting your "plan of action" as a caregiver. Please research the "How to get through it" board, as it will give you lots of good information as you start this journey.Stay strong- Amy in the Ozarks

Hello again
My h's pet scan came back no other tumours were found. They are giving him Fractionated Sterotactic radiotherapy 33 times. Has any one undergone this type of treatment? I will be glad when September comes!
Irene

Irene, the pet results sound like really good news! Can't help you with the rad part, John had IMRT. Good luck going forward.Amy in the OZ.