Hi AK,

I don't mind answering any questions - just ask. You can see dates and treatment in my signature line. I've had 4 surgeries - first in June 2005, and then 3 more in 2010-2011 due to a recurrence.

I was diagnosed as stage 1 in 2005 and recommended treatment was surgery alone. I found out a few months later that my biopsy was misread and there was cancer at the margins. This doesn't happen often fortunately. I sought three opinions on what to do, and the final recommendation was "watchful waiting" or radiation. I opted for radiation. My doctor, the best ENT in our area, is still my primary doctor, however, I found out the hard way that where you are treated is also very important.

In 2010 when I had a recurrence, I also went for three opinions but this time I included Johns Hopkins in Baltimore - best decision I made. JH is one of the best head and neck cancer hospitals in the country. I had my last two surgeries there.

Most of us are treated by otolaryngologist or Ear, Nose & Throat (ENT) doctor. ENT's treat a number of conditions including oral cancer. One question to ask the doctor you are seeing how many oral cancer patients he/she has treated. You want someone with lots of experience.

Ask the doctor to explain the biopsy results. He should recommend additional treatment since the tumor is present at the margins. Poorly differentiated isn't good (sorry to say) - well differentiated is better. P16 I believe is related to HPV status - now a leading cause of oral cancer (but rarely positive in SCC of the tongue).

He should recommend additional tests - CT, PET and/or MRI to determine if the cancer has spread. SCC usually will spread to the lymph nodes in the neck first. Look into info on neck dissection (removal of lymph nodes).

As we've said, there is a lot of great information on the OCF website and forum. Use the search functions. You can find more information on my treatment (or other member) by clicking on my name to see my posts.

Hi AK - So glad you found this great place to be. Everyone here helped my son and me when he was at the same place. My son had a sore under his tongue, left side for about 6 months before he went to a doctor who referred him to an oral surgeon and then a Maxillofacial surgeon. It was a Stage 2 and he was treated with surgery and radiation and is doing fine now 7 years later. It helps to have someone else go with you when you see the doctors so that they can help you and your brother remember what was said or take notes. It does help to read up on everything on the main pages, especially where it says "Diagnosis" and can help you formulate questions for the doctors or for anyone here. Hope everything goes well with your appointment today. Check back often and let us know how your brother is doing.

HI there... check your PM I did respond to your message... HUGS.

[quote=ak123]Thank you Bart! We will know the stage tomorrow. I am very sorry for your cancer too. I will pray that you live 100 more years. Our oral doctor is sending us to a Otolaryngology is that the same as an Oncologist? and you are so right no one is guaranteed life. [/quote]

Hi AK,

Thank you for the kind wishes yourself.

But if I may do so without appearing to to be an ungrateful wretch, I'd very much like it if you could dial back on those extra years.

Living to be 175 years... (shudder,) Let's just say that such is not one of my most fervent desires. The very idea scares me more that any diagnosis I could ever face. (shudder...)

But you have my very best wishes for your brother, and you, of course.
It's a Noble and rewarding and challenging job you have taken on, being your brother's advocate and I applaud you for stepping up like that!

Hello,

I am familiar with Dr. Akervall. I sent you a Private Message. I hope to hear from you soon.

Hi AK - welcome to the family. You will find a lot of caring, knowledgeable people here who can help you and your brother through this journey. If it turns out to be oral cancer, it would probably be a good idea if you could get brother to join the forum himself. Having a great caregiver is a real blessing, but there's lots he needs to learn himself about this disease and it's treatment. If he joins he will think of and ask more questions than if you do all the reading, thinking, communicating for him.

Good luck with the diagnosis. If it turns out to be oral cancer, you know we are here to help you.

take care
Tony

[quote=Susan2992]Hi AK,

I don't mind answering any questions - just ask. You can see dates and treatment in my signature line. I've had 4 surgeries - first in June 2005, and then 3 more in 2010-2011 due to a recurrence.

I was diagnosed as stage 1 in 2005 and recommended treatment was surgery alone. I found out a few months later that my biopsy was misread and there was cancer at the margins. This doesn't happen often fortunately. I sought three opinions on what to do, and the final recommendation was "watchful waiting" or radiation. I opted for radiation. My doctor, the best ENT in our area, is still my primary doctor, however, I found out the hard way that where you are treated is also very important.

In 2010 when I had a recurrence, I also went for three opinions but this time I included Johns Hopkins in Baltimore - best decision I made. JH is one of the best head and neck cancer hospitals in the country. I had my last two surgeries there.

Most of us are treated by otolaryngologist or Ear, Nose & Throat (ENT) doctor. ENT's treat a number of conditions including oral cancer. One question to ask the doctor you are seeing how many oral cancer patients he/she has treated. You want someone with lots of experience.

Ask the doctor to explain the biopsy results. He should recommend additional treatment since the tumor is present at the margins. Poorly differentiated isn't good (sorry to say) - well differentiated is better. P16 I believe is related to HPV status - now a leading cause of oral cancer (but rarely positive in SCC of the tongue).

He should recommend additional tests - CT, PET and/or MRI to determine if the cancer has spread. SCC usually will spread to the lymph nodes in the neck first. Look into info on neck dissection (removal of lymph nodes).

As we've said, there is a lot of great information on the OCF website and forum. Use the search functions. You can find more information on my treatment (or other member) by clicking on my name to see my posts. [/quote]


Why isnt Poorly differentiated good??

Poorly differentiated means that it's aggressive. It's the least like your own cells, they are reproducing so quickly that they don't mature properly and are unpredictable in nature. The plus side is because they are so poorly developed they're easier to kill, but they're also harder to catch. Hope this helps.. Hugs

[quote=Anne-Marie]Hi AK - So glad you found this great place to be. Everyone here helped my son and me when he was at the same place. My son had a sore under his tongue, left side for about 6 months before he went to a doctor who referred him to an oral surgeon and then a Maxillofacial surgeon. It was a Stage 2 and he was treated with surgery and radiation and is doing fine now 7 years later. It helps to have someone else go with you when you see the doctors so that they can help you and your brother remember what was said or take notes. It does help to read up on everything on the main pages, especially where it says "Diagnosis" and can help you formulate questions for the doctors or for anyone here. Hope everything goes well with your appointment today. Check back often and let us know how your brother is doing. [/quote]

i am also so glad to find this great place! I am so glad to hear that your son is doing fine. My brother has it on his right side of the tongue. I see that your son removed 1/6 of his tongue. Did he have to do speech therapy after that? Did he have to use the Maxiofacial surgeon? Also, my brother is only 22 so he is dissapointed that he wont be able to drink alcohol again. Does your son ever drink now? if these questions are too personal please do not feel like you have to answer them.

AK - My son did not have any speech therapy after the surgery. He did have a lisp and there were times when I had to ask him to repeat things but it was only for a very short time. He was frustrated and depressed because recovery was a s l o w process and he would be very impatient with me when I had to ask him to repeat stuff. I told him I had a hearing problem (I didn't) so he had to be patient with me. Paul did not have to have anything done to his face or neck that would be noticeable except for the surgery scar but it was cleverly hidden in a fold of his neck so it is not at all visible.

Re alcohol use - I think it depends on the individual, the medical history, the reason for the surgery, and what the doctor recommends for your brother. My son does drink occasionally and I worry about that because I don't know how "occasional" it is. I have sent him a lot of helpful information on alcohol and it's relationship to oral cancer from the main pages of OCF. (I feel that as an adult, he has the responsibility to be in charge of his own health). You can also use the search box at the top right of this page to find what others have said about it. Don't worry about asking anything personal. If you are concerned, you can always ask it in a PM (personal message by clicking on the name at the left of this box) but asking here will get you more replies and suggestions.