new here

Ellie74

Hi everyone,

  I am new here and am so grateful to have found this forum with so many wonderful people. I was diagnosed with squamous cell carcinoma of the tongue on March 16th of this year. Towards the end of January I found a spot on my tongue that I thought was a canker sore.  After giving it a couple of weeks and it not going away I made a appointment with my dentist. He looked at it and said he thought I had bit my tongue and that's all it was, but I was skeptical because I didn't recall doing it and the fact that it wasn't going away. This was the beginning of February and all he wanted was me to rinse with warm salt water and come back in 2 weeks. I still had a nagging feeling this was something more so I made a appointment with a different dentist (he had been in practice 33 years) and saw him. he agreed with my dentist and took a pic of it and also wanted me to come back in 2 weeks. By now it was towards the end of Feb. and still no better and quite painful. I told my husband I know in my gut it's something more so I made a appointment with a oral surgeon. Was not able to see him till March 10th and after examining me he did a biopsy right then that day. Had my follow up consultation on March 16 when I found out it was cancer. Needless to say I was devastated, and couldn't understand how this could have happened....me who has never smoked a day in her life, doesn't drink, or use tobacco products I kept telling myself.

    I had been diagnosed with melanoma in 1985 when I was pregnant with my first child and ended up having surgery after he was born. God blessed me though in the fact it hadn't spread from that spot and I didn't have to have any further treatments except regular check-ups for the first 5 years. Now here I was with another cancer after all this time. So April was spent with appointments, CT scan, bloodwork, PET scan , etc. Scared to death about how much time had went by and the month I wasted seeing 2 different dentists. My PET scan had shown 1 node involved but nothing anywhere else besides the tongue. I had surgery May 3rd which consisted of renoving the tumor from my tongue and a neck dissection which removed 34 lymph nodes. Ny surgeon said he got all the cancer from my tongue with very clear margins and the 1 lymph node in my neck was still encapsulated and had not ruptured or spread and he as able to remove it intact. The other 33 nodes all tested negative. I had the drain in my neck but was released from the hospital the very next morning and had a follow up 5 days later and the drain was removed then. My surgeon felt very confident he had gotten it all and didn't feel I would need radiation or chemo but he referred me to a radiation oncologist. I saw him the beginning of June and had quite a lengthy appointment where he went over everything with my husband and myself.

  His opinion was he did not think I needed radiation or chemo after reading my pathology report and all the info from my surgery. He explained that he felt that would be more detrimental to me than beneficial and would alter my quality of life. I had prepared myself for either one of those or possibly both after reading everything I could get my hands on and all the different people's stories that are dealing with this disease. He just kept saying you have a excellent surgeon and I feel 100% condident in everything he has done looking at all your results. He said I had clear very large margins and no sign of anything else. I just had my 3 month follow up last Friday and my surgeon said I am doing excellent. He said he agreed with the radiation oncologist but hadn't wanted to speak for him and wanted his opinion. I feel great and the swelling in my neck has almost all gone away, my incision line is looking better and less red, and my speech is a little mushy at times but not too bad. I am eating normally (probably way too much lol) and i went back to work 6 days after my surgery so I feel Ihave nothing to complain about. However I keep second guessing the 2 doctor's decisions for no rads or chemo, especially after reading so many different stories on here. Does anyone know is it common to have surgery alone and nothing more? Any info anyone can tell me would be greatly appreciated and everyone here will be very much in my thoughts and prayers.

   Ellie

CivilMatt

Welcome

Ellie,

Welcome to the H&N forum, you definitely qualify for membership and luckily will recover nicely with your new normal (which should be just like your old normal).

I would not give it a second thought, you will be under regular check-ups to watch for problems, but you won’t have any.

The rads and  chemo are just a cancer center away, should the need arise.

You will always be cautious and that is a good thing (twice bitten).

Enjoy your life and family.

Matt

 

bebo12249

I don't have the reference

I don't have the reference handy but there are national guidelines that indicate when surgery, rads, chemo and their combinations are recommended. You have two docs saying surgery only, probably based on the guidelines. Keep your survalence appointments and count your blessings. Enjoy..... as Matt said.

Ellie74

Dear Matt and Bebo,

Dear Matt and Bebo,

   Thank you both so much for taking the time to respond to my post and question.  Bebo, at my radiation oncologist appointment he did have a guideline chart that he went over with me in great detail, but was a little overwhelming with so much information to take in. I definitely feel very lucky and extremely blessed but like you said Matt so very cautious. It still is unbelievable to me that over the course of a month in seeing 2 different dentists neither thought it was anything to be concerned with. I just hope that time wasted doesn't come back to haunt me, but am trying to stay positive and just take it 1 day at a time, and appreciate every day I wake up. Hope you both have a very blessed weekend ahead.

Ellie

OKCnative

Ellie74 said:

Dear Matt and Bebo,

Dear Matt and Bebo,

   Thank you both so much for taking the time to respond to my post and question.  Bebo, at my radiation oncologist appointment he did have a guideline chart that he went over with me in great detail, but was a little overwhelming with so much information to take in. I definitely feel very lucky and extremely blessed but like you said Matt so very cautious. It still is unbelievable to me that over the course of a month in seeing 2 different dentists neither thought it was anything to be concerned with. I just hope that time wasted doesn't come back to haunt me, but am trying to stay positive and just take it 1 day at a time, and appreciate every day I wake up. Hope you both have a very blessed weekend ahead.

Ellie

My personal experience - and

My personal experience - and many I talk to - is that BOT cancers are often disregarded by non-cancer specialists. I was told this is one reason (locally) most of their patients are already stage III or IV by the time a correct diagnosis is made. Yet, even with that, Stephenson Cancer Center claims they have a 90% success rate with people who complete treatment and are HPV+ (and they are are treat first, cut only if necessary after type of center)

Personally, my PCF missed it initially. He then had a CAT scan done and realized something was going on but didn't know what. He sent me to an ENT that totally dismissed it initially and then weeks later decided we should just do a node dissection to both sides of my neck and see how they test. I refused (didn't want unnecessary surgery) and went straight to a Oncologist. He agreed it was serious but that it could probably be diagnosed with just a needle biopsy (much less invasive). He sent me to a wonderful ENT who scoped me immediately, identified a most likely tumor and did a neck biopsy that came back positive the next day. That resulted in a referral to the cancer center and treatment started 5 weeks later.

Ellie74

OKC- thanks for your response

I appreciate you taking the time to respond and share your story. My cancer was on the right side of my tongue, towards the front of my tongue. I don't know if that makes it any different than towards the back of the tongue. My surgeon is a ENT who specializes in cancer treatment and then I was referred to the radiation oncologist and they both agreed I didn't need any further treatment at this time. Are you suggesting I should go ahead and get a third opinion? Right now all I have are follow-up visits every 3 months.

Ellie

nikolaf

Ellie74 said:

Dear Matt and Bebo,

Dear Matt and Bebo,

   Thank you both so much for taking the time to respond to my post and question.  Bebo, at my radiation oncologist appointment he did have a guideline chart that he went over with me in great detail, but was a little overwhelming with so much information to take in. I definitely feel very lucky and extremely blessed but like you said Matt so very cautious. It still is unbelievable to me that over the course of a month in seeing 2 different dentists neither thought it was anything to be concerned with. I just hope that time wasted doesn't come back to haunt me, but am trying to stay positive and just take it 1 day at a time, and appreciate every day I wake up. Hope you both have a very blessed weekend ahead.

Ellie

Ellie-- my husband was

Ellie-- my husband was misdiagnosed for 8 months (1 year total with symptoms).  It's nasal cavity, however.  No spread.  But if your tumor was grade 1 or 2 then 1 month is nothing From what our doctors are telling us here.