Brian, at the initial meeting in Nov (2011), the ENT surgeon did mention that they held a meeting to discuss her case. My understanding is that her scenario is unique and they were surprised at rapid rate at which the tumor grew. The oncologist was pleased at how the cancer responded to the chemo but the surgeon said that it is common for a fast growing tumor to also quickly respond to chemo. I will talk to my mom about conferring with the radiologist. This was our plan. Her oncologist is not at UC Irvine and I'm not sure if her radiologist will be.

Hi everyone,

Thank you so much for your feedback. I will ask about the number of surgeries of this caliber that these surgeon have done. I just didn't want to offend them (I think it's a cultural thing because I know here (in the states), it is very common to get a second opinion). Both the ENT and the plastic surgeon are highly regarded in dealing with cancer and cancer reconstruction.

I feel like all the information we get is so disjointed. Did anyone else experience the same thing? Sometimes it feels like not all parties are talking to each other on a regular basis.

My other question is, is there a place where she meet (in person) with other cancer survivors to talk through some of her anxieties? Would the oncologist know?

It is best for you to be a place where all the drs are communicating to work together on your mother's behalf that is how she will get the best treatment. The radiologist, surgeon and medical oncologist should all have their say and put together a plan of action for her. Hr tumor does sound highly aggressive (yur dr is right highly aggressive tumors tend to respond quickly. But they also move quickly so the drs. Should move onto their follow up treatment as soon as they decide what to do. Best of luck. Ps standard radiation cuts the recurrence rate in half normally. Best of luck

Thank you Cheryld. Btw, I don't understand what you meant by "standard radiation cuts the recurrence rate in half normally"

We're seeing the radiation therapist tomorrow. What kinds of questions should I be asking of him? Dr. Woodhouse in Fountain Valley, CA. Does anyone have experience working with him?

Have you had a chance to read the section of this site on radiation treatment? You may particularly want to know about what kind of side effects to expect, the percentage of the patients who suffer from these side effects, how they may impact your mother's life post-treatment, what kind(s) of medication she may need to help reduce pain from the side effects. The hospital my husband is being treated at has a range of information pamphlets, from how to deal with constipation (from taking painkillers), doing saline soaks for radiation burns, to feeding tube management etc. Get hold of as many of these as you can if they have it at the doctor's office and read through them. It is all invaluable information. Good luck to you and your Mom.

Hopefully they have all available records from the other doctor's. Just in case, you may want to bring any you have or call the other doctor offices, and ask they send them electronicaly to the RO. I always ask what is their experience in treating H&N cancer, this particualr type, but I usually know before I go anyway having sought out the ones that specialize in head and neck cancer. Below is another source of info for radiation treatment from ACS, which you can compile a list of qustions to ask for any concerns. Some cancer centers have support groups for Head and Neck Cancer, like SPOHNC, that are throughout the country, but you don't have to be treated there. Good luck.

http://www.cancer.org/treatment/tre...diation/radiationtherapyprinciples/index

Thank you Paul!

Hi...
Where oral cancer is concerned cause, and location play a role in treatment.

Often HPV tumors are treated with radiation and chemotherapy alone. If it involves the tonsil, then surgeons may remove it prior to treatment. HPV tumors respond very well to radiation and chemo alone.

NON HPV oral cancer is a dog of a different color. Gum, cheek, tongue, palate etc (it sounds to me like your mother's started out in her gum area and moved into her jaw)... are generally treated with surgery first. And sometimes a dr. will leave it at that. However, depending on size and involvement of the area and other factors they will suggest chemoradiation. (more and more this is becoming standard as oral cancer can be aggressive and spread quickly) So I was told by my rads dr. and surgical oncologist (ENT) post surgery and post biopsy that they wanted to give me radiation and chemo as it cuts the odds of recurrence in half as opposed just surgery.

There are no guarantees with anything. But where your mother is concerned if she is healthy enough (radiation is NO PICNIC - its far worse that just chemo and just surgery) the initial treatment of chemotherapy - to shrink the tumor, would likely be followed up with surgery, to remove the remaining cancer and possibly rebuild the affected area - then based on her staging and involvement, radiation should be offered after she has healed from surgery - this is normally 6 weeks but depends on how quickly she heals and what they have done for her surgically. Usually 6 weeks is the average. Her healing and immune system may be compromised due to her chemo, so it's important that she get good nutrition and regain her strength during this healing period.

Do look into rads. It's hard. Even for people who are have an "easy time of it" Pain management is very important, and being proactive. knowing what to expect, and educating yourself should help you both get through it if it is suggested.

take care

Your story sounds all too familiar. My mom went through the same thing in August 2008 when she went from DENTIST to DENTIST until finally she was referred over to an oral surgeon who determined she had SCC.

A few weeks later she was in the Operating room under-going jaw reconstuction. The mandible from her leg was used to rebuild the jaw. I believe it was about a 10 hour surgery which included six days in the hospital. After a few weeks she began radiation + chemo-therapy. I remember she lost 90% of her hair and had a great deal of difficulty during the chemo.

Surprised your mom was not operated on immediately..

Let me know if you have any questions.