My mom was diagnosed(June 9th) with stage 2 SCC...the cancer is under her tongue...almost on the midline. I'm trying to find out as much as I can before treatment starts.

She's having another biopsy on Friday for a lesion the MRI detected. This lesion is on the back of her tongue.

So far she's had a CT, MRI, and PET. The PET was done on Monday and we are still awaiting results.

The Dr. has recommended surgery...removing the lesion under her tongue and 1/3 of her tongue(sorry I don't know the medical terminology for this), neck dissection and radiation. Of course all this could change with the biopsy on Friday.

I'm having a hard time with some of the abbreviations you all are using. I've looked all over the site and I can't find a list...can someone point me in the right direction for abbreviations?

I feel like I need to know EVERYTHING about this type of cancer. My mom is letting me ask all the questions and "take charge" because she's trying to let this all sink in. I'm trying not to push her but I think she needs to read some of these threads.

Anyway, I just wanted to introduce myself. I hope I don't ask too many redundant questions. I'm very grateful to have found this site.

Dear Leah;

Hello, I work at a major medical institution in Chicago, Il. in the oncology field, I work with head and neck patients, and I also have head and neck cancer.. I was dx. in April 2005. and started treatment also in April.
I cannot stress to you the importance of getting a second opinion. I work in the field and also received a second opinion on the treatment. If it is possible a teaching hospital would be on the top of my list.
Your mother should have a team of doctors, head and neck cancer involves so many different aspects of the head and neck region, I have a dentist that deals with h/n cancer, a ear nose and throat doctor, and a radiation oncologist. The team works together and than decides on the treatment.
If you need help with the medical terminology please feel free to email at [email protected].
I will be happy to help you.
Just continue to hang in there and have a positive outlook. Treatment (trt) can be very rough but I look at my treatment as a rainbow, where there is LIFE at the end of the rainbow.
Hugs to you also.
Cindy B

Hi, Leah. I know what you mean about not knowing all of the abbreviations. Unfortunately, you learn them all as time goes on. I hope your mothers' PET results are good and I agree with Cindy above, obtain 2nd opinions and talk, talk, talk to your mother's doctors. My husband did not survive his cancer (stage IV @ diagnosis) but it made all the difference in the world for me to go to doctors with him and ask questions. This website was a God-send in giving me support and answers to my questions. My husband never came to the site himself but would always ask me what I had learned from it. I think the fight itself is tough enough and he depended on me to look for answers while he just coped sometimes. One of the most important things I did was immediately start a small calendar -- listing what doctor we saw what day and what tests were done. I even tracked mileage on this calendar. When later, I had to report to yet a new doctor what we had already been through, this made it much simpler. If a new medicine was prescribed, I wrote it in the calendar -- if it didn't work, wrote that down on the day he stopped taking it. It gives you a little control as a caretaker in keeping up with the many issues that arise.
Bless you and, as Cindy says above, have a positive outlook. If you continue to explore this site, you see so many survivors -- make sure your mother gets a team of doctors that listen and will work with you both for her best care.
I keep everyone on this website in my prayers and will add you and your mother.
Millie

Leah,

My surgery was very similar to what they are recommending for your mother. If that's the path your mother ends up taking I would be happy to relay any information I can from my experience.

I can't agree with the posts above more. She should get a second opinion and make sure the surgeon has a lot of experience with this type of surgery.

Keep posting here and ask any questions you want. The folks here are so helpful and made my trek through this nasty stuff so much easier.

Jennifer

I just wanted to tell you that I recently found this board and it has changed my life.

Don't give up the fight and turn here for the advice and support you need sometimes.

From what VERY little I know, your Mom's stage sounds early and treatable.

Dont get too caught up in the terminology. Ask questions, because right now your Mom is still in shock and needs someone to help present the questions.

I recommend recording the Dr visits on a voice recorder. You'll appreciate having it for reference later.

Keep us all posted!

Leah,
My Dad's tongue cancer was Stage I at biopsy, but Stage III post neck dissection. Your Mom's staging may change as you go along. My Dad relies on me, too, to do the web research, translate what docs say, etc. so you and I do have common experiences to share. I'm several weeks down the road from where you are, but like the others I suggest using this website, especially the Search feature. Type in any abbreviation or word you don't understand or are interested in and it will take you to some great info on the topic. Your presence in her life at this time will mean so much, not only to your Mom, but for yourself. Whatever happens, knowing you've done the best you could for her will bring you great comfort and peace. It will be easier to be optimistic after the initial shock wears off and a treatment plan is in place. MANY people survive this disease. Hang in there and do send me a private message or telephone me if you want to talk. I'll be holding good thoughts for you and your Mom. Ciao, Tina

Here is a link to some abbreviations that Mark put together http://www.oralcancerfoundation.org/ubb/ultimatebb.php?/ubb/get_topic/f/6/t/000358.html

Here's a link to the NCI Dictionary http://www.nci.nih.gov/dictionary/

Hi again, thank you all for the replies. My computer was on the fritz the last couple of days so I wasn't able to get here or anywhere else.

Cindy, thank you for you input. I've talked to my mom a lot about a second opinion. I don't know if you know anything about Kaiser...I don't really know how to explain what they and how they work...I guess I would say they're a mananged health care insurance. Here's a link

http://www.kaiserpermanente.org/

We're trying to figure out how we go about getting a second opinion...we don't know if we can use an "outside" Dr. or if we have to use another Kaiser Dr. We're within 3 hours of Stanford University but again, I don't know if it's possible to get a second opinion there. I do have some other questions...if you don't mind I will email you. Thank you so much.

Millie, I'm very sorry for your loss. I did start a notebook and finished it during my mom's biopsy on Friday. I took it to the Dentist today and wrote some notes. Later my mom asked me to make her a notebook. I had offered to make her one but she wasn't ready...now she is. You were right...I did learn some more of the abbreviations on Friday, UGH.

Jennifer, I'm sure we'll have lots of questions..thank you. I'll post an update at the end of this post.

Thank you Michael!

Tina, thank you for your post...it mad me cry. The hard part of all of this is that my maternal grandma passed away a month ago...2 weeks after she died my mom was diagnosed. Doing all of this is already a comfort to us both.

Gary, thank you for the links. I'll check them out.

I don't know if I should post this here or in another forum...so I'll do both.

My mom had the biopsy Friday on the back of her tongue. The head and neck surgeon said everything went well and she didn't think the biopsy would show anything to be concerned about. She also said with the partial glossectomy and neck dissection my mom could possibly avoid radiation. We were thrilled to hear this.

My mom had a dental appt today to prepare for radiation...if deemed necessary. My mom has not been to the dentist in many years and needs some work...cleaning, extractions, etc. At the very least she needed this work done and I know it will make her feel better to get it done.

Today the head and neck surgeon called my mom with the PET results...the surgeon said they were not really helpful. The cancerous lesion under her tongue did NOT 'light' up. Area's behind her right ear, in front of her left ear and the back of her tongue DID lite up. All the "we don't know" is driving me crazy. Now we don't know what to think. I called the surgeon but she hasn't called me back yet.

My mom has a head and neck surgeon, radiation oncologist, medical oncologist(1st appt is 6/29), and now a dentist. Who should we get a second opinion from? Do we get a second opinion from a new team of Dr's or just a head and neck surgeon?

Right now the neck dissection and partial glossectomy are scheduled for 7/19. We were told this will be a 6-8 hour surgery.

Why doesn't the PET show what is going on in the lymphnodes if it messures the metabolic rate of cells? Is the neck dissection precautionary?

I guess that's all for now.

Thank you all!

Oh, sorry this post is all over the place...I'm very tired.

Hi Leah;
I was in the hospital last week for trt. so I have not got back to the boards.
I do not know anything about Kaiser will look at it after I post this.

How close is City of Hope? I have some collegues there and Im sure they would be willing to help.

When we have pts. seeking a second opinion they see the head/neck oncologist. Just be sure to have all of your Moms reports path, ct reports, pet scan.

Glad to hear that she has the team that she has. I cannot stress the importance of a dental exam if she does have radiation. If she does need extractions don't hesitate. (I had to have 7 extractions) Radiation will kill any bad tooth there is, there is some logic to all of this.

I do not know much about PET scans, we generally do all CT scans for head and neck pts. I will ask someone tomorrow and will let you know.

Hang in there and you are in my prayers, please feel free to email me anytime. I will be back in the hospital on July 10 for another week of treatment.
Cindy

Leah, I have Kaiser also they they gave me a choice of Stanford or UCSF (both comprehensive cancer centers) because their contract radiation oncology centers (Kaiser doesn't do irradiation in-house) were not offering IMRT at the time. I know that the Mt. Diablo one was in the process of updating their LINAC to accomodate an IMRT MLC, so that may have changed. I had my chemo at Kaiser and my follow-ups are with a H&N surgeon from Kaiser and I have been very impressed with the standard of care there. They always followed the NCCN oncology practice guidelines. Kaiser allows you to "shop" for doctors on their website. I chose a H&N surgeon that I have confidence in. He went to medical school at UCSF and did 8 years at Childrens Hospital in Oakland.

Most scans are merely a component of the entire diagnostic package and are rarely the complete basis for treatment decisions. Many time you will dicsover the RO and Oncologist relying heavily on scans and the H&N surgeon almost ignoring them. They are always subject to interpretation and often the radiologists are very conservative in their readings. They are duty bound to annotate ANY anomaly and let the H&N surgeon and other team members sort it out.

Radiation itself typically won't "kill" a tooth unless the total fractional dose (through that specific area) exceeds (I believe 62 cGy) which is unlikely the way that radiation treatment is programmed. What CAN happen is if the teeth are in bad shape or there was gum disease prior to treatment these conditions will be exacerbated by the radiation damage to the gums but mainly the issue is damage to the salivary glands which protect the teeth from decay. Impeccable dental hygiene is an absolute must from now through the rest or your life. Radiation damage to the capillaries in the mandible and jawbone don't allow for the bodies adequate response to bacteria and infection from a diseased tooth (there is inadequate blood supply to bring antibodies to fight infection) and OsteoRadioNecrosis may result (ORN).

I personally only had CT scans for radiation therapy planning purposes. MRI scans are the standard for annual followups (according to my CCC) and a baseline one should be taken pre-treatment. New data, recently published has suggested that x-ray radiation should be avoided if possible. MRI's are very safe and also superior for examining soft tissue.