Good morning. My 79 year old mother was diagnosed with oral cancer (Stage IV-A) about two weeks ago. Since that time we have made visits to the radiology oncologist, dentist, oral surgeon and back to the radiology oncologist. Tomorrow we meet with the medical oncologist. Everything seems such a blur and no decision of treatment seems clear. The radiology oncologist gave a guesstimated success rate of 50-60% with radiation and chemo combo. which we were very excited about.

Unfortunately, Mother has exposed jaw bone from taking Fosimax in the past. When we met with the oral surgeon after meeting with the radiation oncologist, he seemed extremely concerned about the risks involved with removing Mother's bottom teeth and what would then happen with the already-exposed jaw bone. Although the oral surgeon didn't say it in words, all of his body expressions and vibes told us that he did not necessarily believe the radiation/chemo. route would be an excellent choice when weighing the concerns of possibly not being able to heal properly from the teeth extractions. So, the optimism that we had felt earlier in the day quickly turned into more confusion and doubt about the treatment option. The radiation oncologist had point blank looked at us in his office on the second visit and asked us to make a decision .... "Are you going forward with radiation and chemo. or not?" For two daughters and a mother who have never experienced any path with cancer, we are now left with a blurred vision, uncertainty about where to turn next and how to get clarity, etc.

Mother is a pillar of strength and I haven't seen one tear shed from her. She keeps saying she will deal with what she is dealt and knows that she will be fine no matter what because of her devout faith. My greatest concern is to ensure that her quality of life is at the forefront of everything we do and decide. She has never been sick or down and to think about what this is going to do to her and her body is heart wrenching. I want to do anything that will help her experience the least amount of pain and suffering possible.

Any thoughts or suggestions would greatly be appreciated. I feel blessed to have found this forum to be a part of during this journey that we are beginning with Mother.

Hi lfowler and welcome to OCF. Sorry to hear that you had a reason to find this site but the people here are wonderful and I think you will find the support and information you are looking for.

As far as treatment being confusing, that is frustrating. Hopefully when you meet with the medical oncologist they can help to fill in some blanks. They are the ones who usually have all the pieces of the puzzle. Just be sure to ask a lot of questions until you feel comfortable. The docs deal with this everyday, we, thankfully, do not. Always take a pen and paper and write things down. If you are unsure of something you hear you can bring it back to these forums and someone will be able to help you.

I only cried a handful of times and the first time was about 2 years after diagnosis. It doesn't surprise me to hear that about your mother. I'm happy to hear you have a sister that is going through this with you too. I know my sisters make everything a bit easier for me.

Good luck tomorrow and don't forget your paper!! Some people bring recorders to their appointments so they can go back and listen. Maybe you can do that. Let us know how it goes.

Suzanne

Your mom's case is exactly why it's good to be seen at a Comprehensive Cancer Center, where they would put her case before the Tumor Board consisting of experts in all the fields. These people would come to a recommendation for what is best for her.

Ifowler,

I've got to agree with PeteD, getting seen at a CCC or a nationally ranked medical facility is just plain smart. Getting the best medical guidance available to you just gives you the best possible outcome.

I do have to address a few things though...your RO has a set of brass balls on him. Quoting survival percentages I find to be irresponsible at best as who knows how your mom is going to respond to treatment. He certainly can't predict that, no matter how many case he's seen. Your surgeon has some valid concerns but many of us have had teeth removal after radiation...it's trickier that's for sure, but not impossible.

Every case and individual is different but with that being said...everyone should get a second opinion before making any of these decisions. I would just suggest getting a second from a Comprehensive Cancer Care Center or a top cancer facility, and then armed with that information make your decision.

Best Wishes,

Eric

Welcome to OCF. You will find the support you need here to help make some difficult decisions. Before any treatment starts your mother will see many doctors. It is very important to ask questions if you do not understand what the doctor is saying. Dont try to get by with reading body language, ask for clarity.

First about the teeth. If teeth are questionable and the dentist or oral surgeon doesnt think they will make it thru radiation treatments, then its best to take them out before any treatment. Radiation can do a number on teeth.

Your mother should be seen at a cancer center. I do understand the doctor asking for your decisions about weather she will do chemo and radiation. Oral cancer can be very agressive. If at all possible treatments should not be delayed. While, at the same time, you must make informed decisions that will have the best outcome for your mother. A second or third opinion is always a good idea.

Best of luck with everything.

Where is your Mother's primary?

Does she have nodal involvement?

Was/is she a tobacco user?

How is her quality of life otherwise?

Where do you live? USA is a rather big place.

Where is she currently being seen?

Why are they recommending pulling teeth before radiation? Are they diseased? Unless they are in bad shape and they expect them to be pulled later, I would get a second opinion on the teeth.

If she doesn't do chemo and radiation, is there an alternate treatment plan?

Sounds like you need a second opinion from a CCC as everyone as suggested.

Take care,
Eileen

Thanks so much for the feedback and comments. We really liked the medical oncologist today and he fully welcomed the idea of a second opinion. We are scheduled for an appointment at the Kirklin Cancer Clinic (UAB) in B'ham, AL on Wednesday. The med. onc. is going to schedule an appt. for a second opinion with an oral surgeon tomorrow. We are still hoping to locate an oral surgeon/dental oncologist who specializes in oral cancer treatment and the exposed mandible.

To answer a few questions ... Mother is in really good health for her age (80 in May) and has a positive attitude. She is quite the fighter! She does have diabetes but controls it with her diet. The most significant problem is her exposed mandible as a result of taking Fosamax in earlier years. She was a snuff dipper up until about 2 years ago.

I feel very fortunate that I have found a support group here. Thank you so much for being willing to share your thoughts.

Good luck at Kirklin CC (part of The University of Alabama's NCI designated Comprehensive Cancer Center)

It should be a great choice and they should have the team and resources your Mom will need.

Sorry you had to join us, Glad you are here. This is a gret place for help and support. I am glad you are going to a CCC for a second opinion. It is tough to make decisions like you are about to make. Let us know how it all goes.