Hi,

My name is Amanda. My father (63 yrs. old) was diagnosed earlier this week Oral Cancer (T2 is all I know at this time). His treatment scheduled to date will be 7 weeks of radiation. His first visit with the Radiologist is mid next week. His CT is scheduled for Apr. 9th (is this a reasonable time frame?). I'm not sure what all this means at this time - I assume we will know much more after the CT & xrays. I'm so relieved to have found this site. I'm still in a daze, but I know the "road" to follow will be one I will have to manage. I want my Mom to focus on helping my Dad through the physical and emotional ride to follow. I know that my role will include the same support as well as trying work through and keep them organized through this whole process to make the complicated "stuff" a little easier on them - I plan to attend some of his future appointments to help them ask the right questions). I'm scared.....but I do feel I'm focused. I'm sure I'll have more questions in the near future......

Hi Amanda,

My husband has nasopharynx cancer which is very rare. His plan was 7 weeks IMRT rad and 3 mega doses of cisplatin. All of his scan were done before treatment started. Your plans for helping are great and you will be a godsend for your parents. I am a contol freak when it comes to my husbands treatment. My kids 24, 22, and 20 helped me best by keeping Craig focused on funny movies, spending quality time, and being active in his treatments. Remember to do nice things for your mom. My daughter does things for me that make my heart melt. One more thought is that my daughter bought me a leather bound journal to keep up with my husbands symptoms and doctors orders perscriptions etc. My husband liked to use index cards next to his chair to write down things he had trouble remembering. He had chemo brain sometimes.

You will find may opinions about the peg tube. I strongly feel that the peg tube saved both of us. It made things so easy and it was scary but after a couple days he was working that thing like a wrench. He could hook up to a bag of ensure and talk to his buddy's on the phone or work on the computer. Oh and lets not forget the internet shopping. LOL that is his favorite sport.

Good luck Amanda

Hello Amanda.
You have found the right place for information and support as you and your family take this difficult journey with Head & Neck Cancer. Many good people, both cancer survivors and caregivers, will share their experiences with you and answer as many questions as we can. Can you tell us where your Dad will be treated, I see you are in Ontario, Canada.
You were asking re the time frame for Dr. appointments and diagnostic tests. My husband was treated at London Regional Cancer Centre. He was seen by the entire Head & Neck Team 3 days after receiving the diagnosis from our Dentist who did the original biopsy. At that appointment all disciplines that would be involved with his care spoke with us explaining their roles, ENT surgeon, Radiation Oncologist, Medical Oncologist, Dental, Dietician, Social Work. CT scan was booked and surgery after that appointment. Surgeon met with us following CT scan to discuss the findings and the surgery that would be done. Surgery took place 2 weeks from initial appointment. Treatment with radiation and chemotherapy started 7 weeks following the surgery.
There is a lot of excellent information on the OCF main site and also a good explanation re staging of the disease at www.oncologychannel.com/headneck/staging.shtml
Courage and strength to all of you as face the challenges ahead.

Thanks for your suggestions. I will definitely make time to do some special things for Mom too. I think her and I will both benefit from "lunch dates" or just some quiet time together. The one thing I am struggling with now is that I know that both of them really don't have any idea what his treatment might be like. I know that everyone responds differently, however I do think that they are unaware of the side effects that Dad may face. All they have been told is that he will lose weight, he will be very sore and likely quite miserable. Should I talk to them about the info I have gathered so far from this site? This is all still very early, and we all have so much to learn. I just don't know how informed they will be in advance. He has his first appt. next week for his radiation (prep I assume). They have no idea what to expect. I'm just not sure of my role at this point. Neither are the type to ask a lot of questions....

Any suggestions would be appeciated.

Hi Wallyswife,

My Dad's treatment will be at Princess Margaret in Toronto. He was referred by his Dental Surgeon to his Head & Neck Doctor (appt. was 4 days later). That part seemed to go quickly. The Head & Neck Doctor advised that he would like my Dad to undergo 7 weeks of radiation treatment. His first appt. is next week. I'm just confused about the time frame for the CT (3 weeks??) It's scheduled for 2 weeks after his first appt. for his radiation treatment (I'm sure his actual treatment won't start for 1-2 weeks after that). All we know at this time is that his diagnosis this far is T2. What is a reasonable time frame for a full diagnosis? Again, Mom & Dad don't ask a lot of questions - they are very trusting of everything they are being told. I believe in being confidant, but only after we are fully informed and can understand everything that is happening. My Dad indicated that the Head & Neck Doctor said that he wasn't looking at surgery at this point and that radiation was a better option.

Irregardless of his full diagnosis, ok or not so good, I will be able to begin learning about all of this a little better once we all know.

Hi Amanda,

A good place to get a lot of good information is in the "Getting through it project" (last topic) section under the "Draft Copy" posting where there is a link called "GTI Draft Copy". Here is the link http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf
A 178 page pdf document will open up. I actually found it to be very informative and covers just about everything from beginning to end. I wish I found it before I started treatment. It has a table of contents at the beginning.

It is great that you can attend a lot of the doctor appointments. It is always good to have extra set of ears to pick up things others missed. I usually had my sisters go with me and my wife to the appointments because they picked up a lot of things and asked a lot of questions. Take notes.

To give you an idea, I was diagnosed on 05/21/07 and began radiation and chemo treatment on 06/25/07. In between that I had a PET scan, met with the ENT, medical oncologist, radiation oncologist, was fitted for my radiation mask, and went through a trial run on the radiation table. Things happened fast. I didn't have any surgery.

I hope this helps. Feel free to post any questions or concerns as we are here to help.

our RO explained things well enough to understand that we were entering hell but that they would do anything and everything to help with the pain. You should definately warn your mom but let you dad hear it from the RO. That worked best for us. My husband wanted me to know the side effects because he thought he would obsess about them and get them all. Some things he had to know but the little things I confirmed as we went along. I hope that you dad bonds with the RO like my husband did. He gave us his home and cell number and would really pull Craig along. The trust was what got him thru. The bad stuff comes gradually and when it peaks you are so close to finishing. Once treatment starts everything gets better. After treatment you are elated but then you are sick and sometimes very depressed then my husband came out of that two or three weeks after. We are all here for you.
Cindy

Amanda - good luck to you and your family through this and my prayers are with you. Our timeline was surgery on 2/4, RO appointment the next week, MO appointment and PET the next week - mask fittings and all that during thi same time frame and then treatment started on 3/7.

My husband is not one to ask questions either and he was just clueless and seemed to not really wnat to know anymore than he was told and had never been through anything traumatic - medical wise nor known anybody who had. Anyway - I specifically asked him what level of info he wanted and we talked about it at lenght. For him I have to provide him info gradually and he only want to hear bad stuff and statistics from the docs. Once they tell him then he will start asking me question. I would take the total candid and honest route with your parents.

This site has been a Godsend to me and I think you are in the right place to help your family.

Thank you all so much for your info, kind words & support. I did a lot of reading of "Getting through it project". I'm feeling better about all of this - I feel like I understand a lot more. I had a long talk with my Mom on the phone today. I informed her of this site and asked her how much info she wanted. At this time, she wants to take it one step at a time and she felt very reassured knowing that I would be able to help with some questions she will have in the near future. Again, I feel so much better, I feel I have so much to contribute in the way of support to my Dad as he undertakes this journey. We have formed this "team" to tackle what lies ahead. This sight has been a true godsend in such a short time. I am glad to have found you all and thank you from the bottom of my heart for your support.

Amanda,

You have set out in the right direction. My sister has a different cancer and her daughter was the one who did all the research for her. It has worked very well for them. The advice of the people here who have been through this will certainly help. Be string for your parents.
Best wishes, my prayers are with you and your parents,
Malka