Dear HGT, we are new to this forum, I posted that my husband has been diagnosed with Stage 1 (possibly 2, depending who you talk to) and had the Photodynamic Therapy on December 2nd. The day he went to the dentist on November 3, and the hygenist called in the dentist - and he was at an oral surgeon within 2 hours for a biopsy. That was Monday and bless the surgeon, he pushed for a diagnosis of the biopsy (he was going to see his parents out of town) and also set up an appointment with Roswell Cancer Institute for my husband the following week. Those events changed our lives, forever, HGT, and like you were are scared silly here. Also we know that, like you, our family means the world and we are going to Fight this thing as much as we can. We may not have resources available to some, and have read that you can and do lose "things" sometimes, but the main part is that you are still here, with your young family. That is the Key. There is help for things you need, we are in NY and have food stamps, programs to take advantage of if we need them. We see you are in Illinois and my mother grew up there and still has many family in Illinois. Do not lose hope, things will probably not stay the same, your job may change to a Different job, but the important part is that you are Here. Sorry to jump in, but I truly wanted you to know that already I can see this is a place of support and love and we are all in this Together - each of us. None is less or more fortunate than another as we all are facing the same adversary and we will Win - we will not look back as that is yesterday - and you know the old saying - you only have Today! Lots of love to you and your family, and you have alot of friends here.

One thing I have learned is that some words are easier to spell than to say. I can't even say my last name and just go to spelling it. It sure beats the question, " what did you say" . Most understand what we are going thru. The ones that don't are the ones with the problems.

Darbi, I sure like your outlook and positive thoughts. Keep up the good work and wisdom.

Thanks EZJim. I am moderately terrified, but want this out. I know the fear will be there even after the procedure, but perhaps then I can breath a little better. I am now trying to get my MRI sorted out. I am what they call urgent, and they have booked me for Feb 4 (I would hate to see what NON urgent is) but I am told there is availability and spots kept open and I can call daily to see if they can move me up. If that doesn't work I want to find out about having it done privately. I do not want to wait on this. I want it done and gone ASAP. I am not looking foward to the surgery or the recovery or possible radiation but I am determined. It's such a roller coaster of emotions. We had a great holiday with my kids home from school, and snowboarding, but it's always there in the back of your mind like a shadow. I was happy, and scared and numb, it's just soooo bizarre... Then coming home it hit me - my kids are gone - back to school - not too far but far enough that a commute isn't possible for one of them, and I may not get to see one of them again for at least 2 months depending on my surgery date. It's so hard, but I am very grateful to have someone to talk to here, a great family, and a friend who is helping me meander my way through the medical system!

Thanks Eric!

After reading your postings and all the other postings, I have a different outlook on things. Hearing all the stories and what people have gone through to fight this killer, really inspires me. When I think I have it bad, I am reminded that it is nothing compared to what you and others have gone through and lived to tell about it. I applaud you. Thanks again for your comments and support.

Thanks Angelia,

I am so glad I came to this forum. All the advice and support totally shifted my attitude, and I stopped feeling sorry for myself. Involving my family without fear I am going to worry everyone made a huge difference with what I am facing.

Best,
HGT

Thanks Darbi,

Wish all the best for you and your husband. I am really taken back on all the caregivers that are on this forum and contribute their time and energy to help people. It really is something special. I went through photodynamic therapy for 6 months as a clinical trial for the lichen planus and lesions I had on my tongue. That was back in 2005. It was in London Ontario, one of the first to try it on the tongue. Very awkward, had to dab the paste to my tongue for about an hour to make the cells super sensitive to the light. It did not make the lichen planus (precancer lesions) dissapear, but it did not turn to cancer at that time either,so somewhat of a success. I hope the procedure has advanced since then.

Good luck with everything, please post next steps for your husband and if the PDT has worked.

Hi Cheryl,

Sorry to hear it will take so long to get it taken care of. I am going through the same struggles...The downside to Canadian healthcare is long waits. I found out today I am having my surgery 4 to 6 weeks in London, Ont. The good news for me is that it is going to be less agressive than what I was going to do in Chicago. So glad I got the second opinion. Instead of doing an extreme procedure that may be overkill, I am going to have the area removed along with a sample of jawbone for the pathologist. If it shows sign of cancer, then I will have to go through the bigger surgery removing a large part of my jaw and then radiation on top of that. So crossing my fingers the cancer did not get into the bone. What really concerns me now is the possibilty of the cancer on my gums spreading to my jaw bone between now and my surgery date which could be up to 6 weeks. Does anyone know how fast SSC can spread, or is different for everyone?

Actually HGT I was lucky - I had my MRI this morning, and an appointment is booked for next wednesday with the specialist. Hopefully surgery will be soon after. As for the speed of growth on SCC - (Someone correct me if I am wrong here) I know it can move quickly but I believe it depends on how well differentiated it is. Well differentiated (based on a biopsy) is usually slow growing - poorly differentiated - is faster more aggressive.

Good luck on the surgery - crossing my fingers for you for 4 weeks - not 6. Looked up my Dr. on Rate a Dr. and he is rated as top notch, and someone else told me he was excellent too. So I am confident in him... despite the fact that we have never met.

Take care - keep me posted on how you are doing.

hgt, good thing you went for the second opinion!!! Im surprised that you are going outside of the US. Do you live close to Canada?

When I had my big surgery, my doc let me the surgery date. He gave me a guideline and told me it must be done within 8 weeks. He told me to get my affairs in order so that I was prepared to be unable to take care of anything for a few weeks. My doc said it wouldnt make much of a difference waiting up to 8 weeks. After that it can make it alot harder to treat. Its always best to do begin treatment or have surgery as soon as you can.

My advice to you would be to prepare for the worst. Make sure you talk everything over with your wife in detail. She needs to know how to respond if the doc wants to remove something or do more than they told you about.

Best of luck with everything!