First off let me say, you guys are great! I've finally got the nerve up to write after reading all these posts. This has been a very imformative site & you all make me feel comfortable talking about this thing that is taking over my life!

Okay, here it goes..my mom, age 72, non drinker, non smoker -almost a saint(well I think so anyway) has been diagnoised with SCC left side base of tongue. Wednesday we went for a 2nd opinion- in the beginning the dr. was so optimistic plans were to do surgery to remove part of tongue & left side neck disection & cancer should be gone, he said this is great we caught it early & she's only in stageII- then I said the 1st dr. suggested we should have a PET scan, his reply was there would be no need- most of the time if a PET is done & cancer is found elsewhere it's too late for treatment, I had to interrupt, I told him other tests (I think CT)detected there was something found in the chest area. He looks through her file again & says yes this would determine you need a PET scan.

Okay, now here we go waiting again her scan will be done Tuesday, this has been such a long process! Mother found out she had to have the biopsy a month ago, is this normal? All these tests & having to wait so long in between, I feel like the longer we wait the cancer will be everywhere. Mom trusts us(her kids) & I want to do everything right.

Mom & dad would have been married for 52 years, we lost dad in '97. I am the youngest of 7 children, mother has always lived her life for the Lord, her husband & her kids-her selfless acts I've seen throughout my life makes me ask, Why? I'll shut up now & get down to some real questions I know that someone can answer.

How long after PET scan does it usually take?

Is there anything on the market to maybe numb her pain so she can eat?

Can the dr. really know she is just in Stage II before the PET results?

All the optimism the dr. had before PET was mentioned-should we still rely on that info?

Thanks for letting me whine, I hope I didn't bore anyone. Please pray for my mom. Thanks again!

Tinalise: I am so sorry about your mother. Life really isn't fair! Clearly, cancer doesn't discriminate between Christians and non Christians. Anyone can get it. Also, there are obviously several likely causes (papilloma virus is another suspect, in addition to smoking & alcohol). Your mother will probably deal better with her treatment because she is in better health than many oral cancer patients since she hasn't smoked or drunk. Life style choices may not prevent someone from getting cancer but it can help them survive it.

I cannot answer your questions, but I can suggest that you should take your mom to a comprehensive cancer center. Hopefully, she is already being seen at one. They see more oral cancers and are probably more accurate with staging. My brother, who had tongue cancer, also had a very optimistic primary care physician and I believe his stage was changed by subsequent doctors.

Finally, I think doctors like to be as optimistic as possible, especially when dealing w/a saint , so don't be surprised if the opinions change. Oral cancer is a tough foe. The best thing you can do to help your mother right now is to get her to a comprehensive cancer center and also make sure someone goes with her to every appointment. I wish you luck! - Candace

Maybe a third opinion is in order! If a physician ever made me feel like I was more on the ball than he/she was, I'm outa there! My doc's need to be their own quality control people. Continue to question all the answers & use your own good judgement. I may be wrong, but I'm not sure any scan can truly stage cancer. The scans shuold be able to be read the same day by the scan doc & same day or next by your other docs. Stay on them, no reason you should have to wait very long. I used lidocaine lolipops, green apple & cherry after my biopsy. Worked great! Had to get them from a compounding pharmacy, $7 a piece, but worth it! My best to your mom & to you for caring for her! Erik

Tinaelise,

Welcome to this site. As you've already started to find out, there's a great deal of helpful information here -- not only on this survivor/patient forum, but also in the many articles and other resources on the rest of the site.

I want to emphasize one of the points Candace mentioned in her post above -- with this type of diagnosis, I hope your mother is being seen at a comprehensive cancer center where she can get advice from specialists who deal with it on a regular basis. From what I read in your post, I'm not sure how they've determined for sure that it's Stage II, if she hasn't yet had the surgery (which would help them assess the primary site) or the PET scan (which would help search for any other metastasis).

Regarding your question about the amount of time it is taking -- I can tell you that in my case, my oral surgeon (who performed the initial biopsy) IMMEDIATELY contacted an oncologist to become the point person working with a tumor board at a major cancer center. Within the first couple of weeks after the biopsy, I had a series of scans to help the board decide on a course of treatment, and those scans were read and interpreted almost immediately. Approximately a month from the biopsy date, I had a partial glossectomy and neck dissection, followed by 3 1/2 months of radiation as soon as the surgery had healed sufficiently.

Cathy

Thanks guys for the info!
I'm so glad to have all of you to talk to.
We are using an oncologist at the Kirkland Cancer Center in Birmingham, AL (UAB) ranked 19th in the nation. We believe she's in good hands but if anyone has had a bad experience there let me know.
As I've told Candance, I hope no one thinks I feel holier than thou because of my post about mom. I don't think mom is better than anyone else that has cancer, it's just hard to express in words what she means to me.
Thanks Erik for telling me about the lollipops I'm gonna try to get some asap.
Cathy, any suggestions on how I can get this thing to move any faster!!! Just feels like we're standing still while the cancer keeps spreading-
Candace thanks again for the reply & it's kinda funny when you said to make sure mom doesn't go alone to her appts. the whole crew went to the last visit all 7 of moms kids it was funny (kinda like the Brady reunion)we have a 2 hr drive & we take 2 cars.
All of you are wonderful people with big hearts. I hope when all of this is over I will be an inspiration for someone. Thanks!!! Tina

Tina
I had NO surgery, only a biopsy, followed by teeth removal, and subsequent treatment.
Everyone knows that when you are dealing with cancer, of any kind, you are only as healthy as your next check-up. For now I am cancer free, with a prognosis of staying that way and mine was a stage four with lymph nodes involved.
It is difficult enough to recover from treatment without adding a surgical recovery to the process.
Get a third or fourth opinion......
Darrell

Tina, it's great to bring a big crew and have a support network, just make sure that some one is taking detailed notes and paying very close attention to what the doctor is telling you. Many critical decisions must be made early on and doctors cover a lot of material in a short time.

It is fairly typical for a least a month to pass while they are gathering all of the diagnostic information. Cancer cells grow at the same rate as other cells in the body. In the post Tx they examine at 6-8 week frequency because they think that is an adequate amount of time to address any issues that may arise.

I am a Christian also and I found that my faith helped in immeasurable ways to get through this.

Hello Tina,

Welcome to the Oral Cancer Foundation. I can't add much that hasn't been addressed. I can however urge you to have her Doctors throw everything they have at this cancer the first time. It is a very unforgiving diaease.

Write down questions you will have before the appointments, You never remember to ask them all when your there.
Will you be your Mothers primary caregiver? It is a diffucult job at best. You will have to be her advocate. Hopefully all goes well and they can remove all the cancer.

Hoping for the best, Danny Boy

Please keep us posted on her as she travels this most diffucult journey.

Tinaelise-
The fact that you are looking for the "right" questions is a great plus. There are no set questions but you got the biggies! I'm a caregiver to a guy that (like Darrell) didn't have major surgery in the sense of radical/modified neck dissection but had gastrostomy, mediport (proved to be more important than the PEG) and all of his posterior teeth removed in preparation for the "hit them with the big guns" treatment. Conservative isn't an option in my mind because like Danny said - it isn't very forgiving.

DO NOT let ANY doctor leave the room if you still have questions or if something sounds like doctor/scientific language - regardless if you feel embarrassed to ask them to re-word. I even went so far as to tell my husband's doctor to pretend my husband was his mother. Would he discount the value of her life or the urgency of her care? He has been MOST responsive and descriptive ever since.

In Ed's case, we didn't even know where the primary site was - what we found was metastatic but I do know I know nothing about staging except someone told him his was Stage IV and I can't remember at what point they came up with it.

Regarding his PET Scans - we have always gotten (except for this last one at 1 year cancer free) results within hours.

I love my mom, too and frankly (though I'm not Catholic) she's my own version of Mother Theresa. She's God fearing, kind hearted, devoted to family and sometimes even a martyr - must be where I learned it! lol. I think its wonderful that your mom has you and her god. Put the two together with great doctors and our prayers/encouragement - she's in great hands. Best wishes and fight hard!

Susan

Hey Tina,
Welcome to this site...such a great place for information and support. I am so glad your mom has so much support from her children. Dan and I had great support from family and our Bible study from our church...also others at our church. We could not have gotton thru it so far without God giving us strength and courage. Dan and I just moved to Birmingham. We still go back to the University of MD for his scans and checkups once a month since that's where he had his treatments. However, his Oncologist in MD has very high regards for UAB (and I think Kirkland is a part of UAB?). Anyway, if you ever need someone to talk to or if I can help in anyway since we both are in Alabama, write me an email privately and I will let you know my address and phone number. My email is [email protected].
God bless and take care!
Debbie