Hi Stephany,
I never once drove myself to radiation treatment. I know that some have and even gone after work (or even held a job while going through this!). Not me - towards the end I slept both ways on the trip. It would take all morning just to work up to leaving the house. And I had IMRT the "kinder, gentler" radiation. We had a 60 mile drive to UCSF every day. After the first couple of weeks I was too sick, too medicated and weak to even think about driving myself. My wife was my primary driver and I had several other relief drivers. Once a week they would take alignment xrays and I would also see the doctor (radiation oncologist) and usually the nutritionist also, usually not on the same day. They also took a CT scan in mid process to fine tune the software programming and check the progress. We always had late morning or early afternoon appointments which mitigated the commute issues. They were terrific about trying to accomodate our schedule.

Why they didn't suggest radiation for your mother initially also is anybody's guess. There are some here who have had recurrences who were treated by surgery alone and suspect that lack of "prophylactic" radiation was the cause. Second guessing (and I MEAN guessing) it would be very hard on the graphs and reconstructive surgery to radiate it, so they must have considered the "risk/benefit" at the time, especially if it was a low staging initially.

Radiation was a very difficult and demanding treatment protocol and the decision to utilize it is a very difficult one. Radiation is one of those interesting paradoxes in medicine. Radiation can cause cancer yet it is also used to treat cancer.

Essentially the doctors revealed to me their entire bag of tricks and it was up to me to choose the appropriate treatment plan (with their input of course). I opted to go with radiation and chemo only. I could have had a 14 hour surgery also. Some have said that the 1-2-3 punch is the best and most efficacious - slash, burn & poison. The science is not quite there yet with a definitive answer. I will second guess that decision forever (especially if I have a recurrence). One would think that if a cancer is well differentiated and focally invasive (and a low staging) that surgery alone would be efficacious. (I'm still second guessing how I got the damned thing to begin with!) It was a year ago this coming Wednesday that I had my first radiation treatment and I still have lingering side effects. It took a good 6-9 months post treatment to get back to 90% of what I used to be.

It goes without saying that, like anything else, your chances for survival are improved when going to a facility that specializes in this kind of treatment and patient management. I deliberately sought out an NCCN comprehensive cancer center for treatment (there is something like 17 of these in the US) where they have an entire hospital wing (or even the entire hospital like MD Anderson or Memorial Sloan Kettering) that is dedicated to cancer treatment and follows the latest state of the art treatment protocols (most also offer "clinical trials" with the latest experimental treatment protocols). They network and share information.

In fighting this disease, treatment and diagnosis mistakes are never good options. I have personally known people who chose lesser facilities for "convenience" and it has cost them their life. Like many other things in life, one has to be "willing to go to any lengths" in the battle.

Statistically, we all fear recurrence - it's really a 50-50 chance in the late stages. People who have "done everything right" have had recurrences. Only God knows the real answers to this...

Gary,

Wow...What a reply from you. Thank you so much for taking the time to tell me all of that. It was such helpful information. Everyone who has responded to me as been such a help. How are you doing? Are you cancer free now, I hope? I am sorry to hear about how you had such a difficult time with treatment. I just wish noone had to go through the torment of this awful disease. I am hopeful that one day we will have a cure.

Regarding my mom, I will prepare to have drivers for her. My father will help and my sister. But, my sister and I both work, but we will do our best to help. I am just scared because I dont know what to expect from the side effects of radiation. The surgery is going to bad enough. So you opted out of the surgery treatment? Right? And just did the radiation or chemo also? Did that take away all the cancer? Did it hopefully not recur?

I know it is best that my mom do everything she can but removing her entire jaw is so invasive. I went through this last year with her and I am scared that she suffers or doesnt make it through it for nothing and have it spread again. She is 63 and I am worried.

You have given be very helpful information. Thanks so much Gary and I will put you in my thoughts and prayers that you conquer this disease completely.
Stephany

Hi Stephany,
It appears as if I have had a "complete response" to treatment. The tumor melted into oblivion at about the third week into radiation. It was rough going but comparatively speaking, I had an easier time than many actually. The rad techs always commented how well I tolerated everything. Like everyone here, I am always waiting for the shoe to drop but so far so good. My radiation oncologist told me that she felt I had an 80%+ chance of survival based on her personal experience and the type of tumor and many other variables. I was blessed to have one of the best doctors in the world. UCSF was one of the early pioneers of IMRT (since 1995 at UCSF) and my radiation oncologist is also a professor of clinical radiology. Many radiology student doctors have and continue to peer down my throat.

We will help you to understand the process as it unfolds. My wife found a book, "Living Well With Cancer" by Katen Moore and Libby Schmais and it was great for demystifying everything. You actually have the worst job. It is truly far more difficult to be a caregiver than a patient. Watching a loved one suffer through this is disconcerting at best. At one low point in my treatment my wife thought I was going to "check out". It never ceases to amaze me just how well designed and resilient the human body is. I got to wear the caregiver hat when my Dad was dying of non Hodgkins lymphoma so I have an idea what you are going through. Fear of the unknown is the worst. Continue to educate yourself (as you are doing), ask lots of questions, be there for exams and take notes or tape record what the doctor says. Be an advocate for your Mom. You'll never regret it. This experience will teach you to value life and how precious it is. Keep as positive an attitude as you can - your mother will draw from this reservoir of strength from time to time. Ben Franklin once stated "That which hurts, instructs".

By the way, the American Cancer Society has drivers to take her to and from treatment. They also reimburse for mileage - call your local chapter. Caution: DO NOT let anyone near your mother who has a cold or flu (like sick drivers or children).

If your mother is on SDI then she automatically qualifies for "In Home Supportive Services" through the State of California. They pay $10.00/hr. for caregivers See: http://www.dss.cahwnet.gov/cdssweb/In-HomeSup_173.htm for more info

Gary,

I had to work today, that is why it has taken me a while to get back to you. Thank you so much for the advice. I am happy to hear that you are going to get through this. I am sorry to hear about your dad. It is so great that I have you to talk with. You really have so much information in addition to your experiences. You have really helped me.

I have passed all your information on to my mother but what is IMRT treatment? I apologize but I am unfamiliar with that term. Is that a kind of radiation?

Gary, you are a wonderful person and I thank you so much for being here for me.

Stephany

Mark, Gary,and Patty,

My mom has SCC in her mouth and had melonama on her arm. It is not melanoma in her mouth.

The doctors said she got gum cancer from gum infection. I have called her doctor and left a message and am waiting for him to return my call. I took your advice and wrote out my questions. Now, I am hopeful to get some answers soon. Thanks again.

Stephany

Hi Stephany,
we have even more in common - my mother had melanoma on her left upper arm. They took a chunk of flesh that I swear looked just like a sharkbite. She also had breast cancer and had a radical mastectomey. I was very young when all that happened. She passed away suddenly of a myocardial infarction when she was 68. My dad had a bad heart and died of lymphoma - go figure!

IMRT stands for Intensity Modulated Radiation Therapy. It differs from XRT (convetional radiation) in that the actual tumor shape is mapped out in 3D on a computer and a treatment plan is developed in software that attacks just the tumor, sparing as much healthy tissue as possible. XRT on the other hand is more of a shotgun approach. Not all people are candidates for IMRT. The tumor has to be well differentiated (or well defined) for the best outcome. see the site below for a more detailed explanation. http://www.nomos.com/content/2_1_imrtbasics.php?S=2&SS=1
It was originally developed for prostate cancer.

Stephany,

My sister and I are going through a similar situation with our mother. She just had her second surgery for SCC of the mouth and started radiation and chemo today. I live in Huntington Beach and my sister lives in Augora Hills. If we can do anything to help you through this please feel free to contact us. We are sooo frightened going through this battle and would love to hear from you. Statistics and everything can be so scary.

Danielle

Gary,

Wow, I cant believe that story about your parents. That is amazing. How weird is that. I guess you never know what the future holds. It must be so hard losing both of your parents. My father has a bad heart also, but overall in good health. My mother is the one who has two different primary cancers.

Thank you so much for the helpful information. It is now 1 am my time and I have to wake up early to go to my office. But, I will check it out sometime tomorrow.

Gary, you are such a doll for helping me and everyone out in here. God Bless You

Danielle. I sent you a private email. We are neighbors.

Stephany

Hi Stephanie,
My name is Minnie and I also am recovering from cancer of the jaw, stage 4. I had surgery nine months ago to remove most of my lower, left jaw and it was replaced with a bone from my leg. So far so good and my jaw looks awesome. There is still some swelling and puffiness, but the shape of my face is almost exactly how it was. I had radiation also and my check ups show me to be cancer free 6 months after radiation.
When I read your post, my first thought was to wonder if your moms cancer came back or if it was always still there after the surgery as she didn't have radiation. Brian has stated on here many times that alot of times its not a recurrence of the cancer, but the same cancer that didn't get radiation after surgery. In a way I kind of hope that is the case with your mom and that after she has this surgery and radiation that she will be fine.
I have three adult daughters that worry like you do, reading your posts made me feel so sad that they have to go through all these feelings. This whole experience has brought us very close, and we were close to begin with. Cancer adds a depth to a relationship that usually doesn't happen in the "normal" course of life. Tell your mother every day that you love her and just set your mind to the fact that she will come through this and be here for many more years to come. My 23 year old and I were talking about my surgery the other day and she made the comment that through all of this she has never been worried about me dying, that she has always known in her heart that I would be ok. I believe her.
Take care,
Minnie

Hello Minnie,

Thank you for your post. Im off to work now and I will write more later. I wanted to respond to your post. First, I am so glad you have been cancer free for 6 months. THat is great. My twin and I are close to my mom but we worry about her. The first surgery they removed one side of her jaw and her body rejected the metal plate. They did put the bone in her jaw also, but it didnt take for her. Now, the cancer is next to where she had the surgery before, so I dont know whether to call it recurrent? This is all new to me. I thought it is recurrent if it comes back. I guess I am wrong. The doctor had told her before after the first surgery a year ago that the margins were free. Then, a year later, it is in the area next to where she had the surgery before.

They want to remove the rest of her lower teetha nd her jaw bone. My father and us girls are scared for the jaw removal and so is she. I believe she is not going to have her jaw removed but only her gums and rest of her lower teeth. She told me she didnt think she could survive the jaw removal surgery. I dont want to see her suffer. It tears me up inside. I am so worried about her. ANd it is so sweet that you worry about your daughters. My mom is doing the same thing. She is worried about us taking all of this when she should just be worried about herself. She cries all day and I just dont know what to say to her to make her feel better. I do tell her she will be ok but I think in her heart she is very scared.

So is it recurrent or the same cancer? I guess I incorrectly assumed it was recurrent.

Thanks Minnie and I will say prayers for you and your family. Thanks for your support and kind words.
God Bless
Stephany