ok folks, here's my first post. I finally showed my dentist the ulcer sitting on top of
the lump under my tongue Dec. 23rd. By the 27th
I was in an oral surgeon's chair getting the lump cut out. I saw the next oral surgeon in
Birmingham, AL on Jan 4th who sent me for a CAT
scan to check nodes. He then scheduled surgery
for Feb 4th to finish cutting the cancer from
under my tongue as the first surgeon didn't get
it all, so all I know is I'm T1 with an over 2cm
lump. My question is this, is the surgeon doing
right by waiting till Feb 4th to cut out the rest
of my bad tongue? Thanks.

Hello ginny7777, That seems like a extremely long amount of time to me. From Dec until Feb. WOW. I would suggest you call him and demand that he do this sooneer than that. Do not be intemadated by a DOCTOR, This is a must. You are going to have a lot of them in the future. You have to be able to tell them what you are feeling. It took me some time before I realized this. I was always the one that said--okay, okay, okay, then left the office without a clue of what just happened...NO MORE. That stopped years and years ago. This is your body and the sooner the better. This is just my suggestion. There are hundreds of others on this site that may be able to help you with this as well. In the meantime, God Bless You,,,In my Prayers,,,Miss Vicki

Ginny, I don't like the sound of this time delay either. You have not mentioned if you are seeing doctors at a large cancer center or not but I'm going to guess not. Do some calling ask lots of questions and get an appointment with a radiation oncologist. You do NOT want to assume that this cancer is easy to beat. Be certain that what ever is done, is the best that can be done.

Take care

I am to see an oncologist of my own choosing, that is I made an appointment myself in my town just in case they did decide to do radiation so I wouldn't be told I had to drive 60 miles to
Birmingham instead of 15 miles to our local
cancer center. The oncologist is a family friend and I believe the best available without
the drive to birmingham. I am hoping that he will tell me the results of the Cat scan done
Jan 6th. I did call the surgeon and told me
that a new lump seems to be developing under my
tongue, but his reply was that Feb 3rd was still
ok. I have SCC. From what I have read this may
grow faster under my tongue that it might in other areas, but it doesn't spread quickly. The
surgeon had already told me he plans to take out
some nodes - just to be sure - but I'm supicious
that maybe he just isn't telling me over the
phone that there is node involvement. I was told
there would be no need for an oncologist until
after the surgeon was done, is this normal?
Thanks

Ginny,

When my oral surgeon had his first inkling that the spot on my tongue might be cancerous, he immediately did a biopsy, but held off on further surgery until he had the full input of a head and neck cancer team from a major cancer center. His explanation was that if he performed the initial surgery without getting all of the tumor on the first try, there was a risk that the resulting scar tissue could be an impediment in trying to get the rest of it on another try. For that reason, he wanted to have a very good idea of the scope of the entire recommended treatment (which turned out to be both surgery and radiation) before undertaking any type of surgical procedure.

This is not something you want to take on piecemeal. I can't comment on the difference in skill levels between your local cancer center and the one in Birmingham, but I know there are many people on this board who will agree that if you need to drive 60 miles to get the best oncology minds (and technology) in your region to deal with your case, it's a small price to pay.

Cathy

Ginny: as some of the other folks have mentioned, please take a proactive approach with this.....ask all the questions, write them down so you won't forget when you see the doctor. Take someone with you to the appts if you can and have them take notes. Ask, ask, ask. Refuse to accept delays in your treatment. Also, if the center in Birmingham is a better rated facility, you may want to reconsider and make the drive daily.

I drive my husband 60 miles to get to the Cancer Center in Chapel Hill, NC at UNC. We could go to a hospital that is much closer, but believe me, the drive is worth it. UNC has a very comprehensive TEAM of physicians that work on each and every case TOGETHER. They have a Tumor Board that meets every Friday and discuss the patients in the Clinic.....This is the kind of care and detail that you should be demanding.

I am the caregiver for my husband, who has SCC of the tongue also. He is only in his second week of treatment, but was sick for 10 months before he was finally diagnosed with cancer......5 doctors saw him during that time, and they kept missing the reason for his pain. I am now, however, learning very quickly to be heard......I'm his "voice" so to speak, as I doubt that if left to his own devices, he would not be as vocal as I. Part of that is his nature, but part of that is his having to deal with everything that has been thurst upon him with his diagnosis. So, if you have someone that could help you, by either asking the questions, or reminding you of the questions, you may find that useful.
The doctors have the knowledge, but to a huge extent YOU have to be responsible for your care....just BE HEARD and don't give up....EVER! Because YOU can do this.....you will get through it!

Michelle

Ginny: as some of the other folks have mentioned, please take a proactive approach with this.....ask all the questions, write them down so you won't forget when you see the doctor. Take someone with you to the appts if you can and have them take notes. Ask, ask, ask. Refuse to accept delays in your treatment. Also, if the center in Birmingham is a better rated facility, you may want to reconsider and make the drive daily.

I drive my husband 60 miles to get to the Cancer Center in Chapel Hill, NC at UNC. We could go to a hospital that is much closer, but believe me, the drive is worth it. UNC has a very comprehensive TEAM of physicians that work on each and every case TOGETHER. They have a Tumor Board that meets every Friday and discuss the patients in the Clinic.....This is the kind of care and detail that you should be demanding.

I am the caregiver for my husband, who has SCC of the tongue also. He is only in his second week of treatment, but was sick for 10 months before he was finally diagnosed with cancer......5 doctors saw him during that time, and they kept missing the reason for his pain. I am now, however, learning very quickly to be heard......I'm his "voice" so to speak, as I doubt that if left to his own devices, he would not be as vocal as I. Part of that is his nature, but part of that is his having to deal with everything that has been thurst upon him with his diagnosis. So, if you have someone that could help you, by either asking the questions, or reminding you of the questions, you may find that useful.
The doctors have the knowledge, but to a huge extent YOU have to be responsible for your care....just BE HEARD and don't give up....EVER! Because YOU can do this.....you will get through it!

Michelle

Ginny, welcome to the site. Sorry you needed to find us. As others have noted, please do not wait to see a team of specialists at a comprehensive cancer center. Even if you have to drive 60 miles one way, which many of us have already done and many more will do in the future, this disease is to aggressive to let it be attacked a little at a time. You have to kill it with a massive strike all at the same time. And in coordination with all aspects of treatment including radiation, chemo, surgery and the kitchen sink. Don't wait. Get a qualified second opinion from a cancer center in the most up-to-date facility you can find or afford. Will pray for your cure with the right treatment to minimize the quality of life issues.

Ginny,

Welcome to the neighborhood. I have read your posts and some of the replies to your post and I have to tell you that you need to go to a major comprehensive cancer center for a second opinion. You have already gone through some things that I believe were not consistent with a comprehensive treatment plan to give you the best possible opportunity to beat this horrible disease the first time. Don't get me wrong, I do not want to incite fear and panic in you but you need to know what you are dealing with. Many of us may only have one chance at this. If you assume this to be the case, wouldn't you want to find the best possible team to collectively use the highest level of knowledge available to rid you of this life-threatening disease? Learn what you can to understand your options; ask what options are available and why they are recommending an option to you. They will either assume you don't ask because you know or they will not know some of the answers to your questions and are making the decision because they think that is their job. It is YOUR job to learn what you can and to make an informed decision.

Ed

I did go to the oncologist I found that is a friend of my brother-in-law. He is launching a
full battle plan. I am to go next thursday for a
complete body pet scan, then back to him and also
to a radiologist all before the surgery. He confirmed that the tumor is growing back, but would not reschedule the tongue surgery until we have the results of the pet scan, so I still have a lot of unanswered questions as to what is to come. He was VERY interested to find out that I have always had a higher number of mouth ulcers for unexplained reasons. Is this common among non-tobacco users with oral cancers? I'd like to sell my business & retire, but cannot find a buyer so I am trying to find a replacement for the next 4 months, does that sound about right as a recoup time? Thanks