Hi everyone, I have been reading forums here now for about a week and I finally decided to join. I just want to say, I think everyone here is so wonderful. As much as many of you have gone through and to be so supportive of others is amazing.
So here is my story, About 4 years ago my mom was diagnosed with oral cancer in the form of a small tumor under her tongue, caught by her dentist. She had surgery and no rad or chemo. She is very faithful on going to all her 6 month screenings as well as dental screenings. About a month ago she was having problems eating and her bottom jaw hurt to bite down. She went to her dentist and he first thought it may have been an abcess, but told her because of her history, even though she's been clear, she should have it checked out. It turns out that they found the monster is back and it has invaded her jaw bone and lymph nodes in her neck. On Tuesday she went to Boston (Dana Farber)where her doc is and where she was the firt time. Every day this week we got a little more news. After CT, PET, and MRI it has been found that it has also spread to her shoulders and down her spine, as well as a small spot on her lung. I don't know all the details as far as all the terms that many of you are familiar with but I do know that it is stage IV and they were going to do surgery on her jaw and replace with bone from her leg and a neck disection, but now that they have found out how far it has spread, they cancelled all surgeries and are going staight to rad and chemo to start ASAP. I also worry because my mom is already a very fragile person as she injured her spine in a work accident and has been on disbility scine 1991. I have yet to get more details about the type of chemo and rad, as every time I try to talk to her or my dad they are crying too much to talk about it. She is 53 and the doc told her yesterday that if all goes well, she could have up to 2 years. Oh, she also is still recovering from a surgery she had on her neck on March 4th unrelated to this. I just don't understand how she could have not only got the clear to have her surgery 2 months ago, and be clear at all her screenings, then all of the sudden she has stage IV that has spread so much. The doc she sees is rated top of the line and he did say it was very aggresive and spreading quickly, but I don't know if someone missed something along the lines or it really can spread that quickly. Thank everyone for letting me tell my story and since I have been reading I have been saying prayers for all here that need as well.

Hi Rachael,

My heart goes to you. I'm so sorry for what you, your mother, and family are going through. It sounds like your mom has a long road ahead of her. You have found a wonderful site with the best people. As a patient, all I can say, is just be there for your mom. She will need the support of some strong people.

Good luck to you and feel free to ask as many questions as you want. There are plenty of people who can answer them.

xoxo

Thank you Suzanne. I think it's great to have a place to come to like this, for everyone to support each other. Hopefully I can get some more details soon. I know that she will also be going back to Boston ( which is about 3 hours from us) for some experimental trials that her and her doctor discussed this week, but I'm not sure when. I think he wants to see how she responds to the rads and chemo first.

Thanks again, and I wish you well also

Hi Rachael,

I am so sorry to hear about your Mom, what a blow that must be. But I know the head & neck docs at Dana-Farber are as good as anyone out there and she will be well cared for, to be sure. I hope you'll find this site as helpful as I did as you navigate through the next few months.

- Margaret

Hi Rachael. I'm so, so sorry about your mom. Unfortunately I don't have very many words of wisdom except for just be there for your mom as much as you can. Make sure she has someone going with her to ALL her appointments. I know with my husband I go to all his appointments and sometimes I will discuss something with him that the doctor said and he doesn't even remember the doctor talking about it. Being a "caregiver" is very emotionally draining. You have found a great place for information and support. Hugs, Wanda

Rachel

Welcome to OCF. Its going to be a very valuable place for you to get support. Im so sorry to hear about your mother. Wishing you both the best.

I am so sorry about your mom. This is a great place of support. Just be there as much as you can for your mom. I know it is a tough time of uncertainty right now.

[quote=Rachael]I just don't understand how she could have not only got the clear to have her surgery 2 months ago, and be clear at all her screenings, then all of the sudden she has stage IV that has spread so much.[/quote]
Hi Rachael,
Sorry to hear about your Mum, I hope whatever they do will help.
As for your remark, Martin had neck surgery (not cancer related, worn spine cartilage) on 11th June 2007, on February 2008 he had a swollen neck galnd which thurned out to be cancerous. We asked our consultant why they didn't see anything. The simple answer was "because they weren't looking for it, they were looking at bone matter and not soft tissue".
Maybe that's what happened to your Mum.
I wish you 2 all the best.
Cecilia

Rachael,

I forgot to mention this to you yesterday. You may want to tell your mom to check out this site too. Talking to people who are going through the same thing may help her.

Rachael,
I agree with Suzanne. Talking to people who have gone through the same thing or are going through the same thing has helped me cope a lot better than I would have other wise. Your mom may benefit from this site. Good luck with it all.