In 10/08 my 81 yr old Mom was diagnosed with tongue cancer, her dentist referred us to who he described as the best surgeon in the area/state, said it's who he would go to if he needed this surgery (110 mile round trip to see him, but dentist said in his opinion well worth the travel).

Had surgery on 10/21, removed all tumors, he did small enough incision that he was able to sew tongue back to itself without causing irregular shape when it healed; did a dissection(?) on neck area same side (6-7 inches), removed a number of infected lymph nodes, all tests came back negative, no radiation or chemo necessary. She recuperated well.

Went back in 1/2009 for (another) follow up visit...she had been saying that 'it's back', surgeon said just irritated scar tissue. Went back a month later, this time the surgeon said it IS back, recognized it immediately, no biopsy needed. Also said he was VERY surprised to see it back, said it was unusual.

2nd surgery early March, more extensive, he had to use some kind of cadaver material to fill in; no neck incision this time. Again, no radiation or chemo. Before 1st surgery in Oct. he had sent us to a radiation dr. for a consultation; after hearing the whole run-down Mom said she would NOT have radiation, no matter what doc said. He told me alternative to rad. would be more surgeries.

Back again for follow up yesterday 4/15...it’s back ~AGAIN~

This time he also felt something ‘unusual’ in her neck, wants her to have a pet scan before scheduling anything for tongue; I’m waiting to hear about appointment for the scan.

Sorry this is so long, want to give as much info as possible…here’s my main question: is it ‘normal’ for tongue cancer to keep coming back like this?? Third time in 6 months seems much to me. Should we stick with this surgeon? He’s got a stellar reputation, works out of a major CT teaching hospital, did surgery on a major CT (and nationwide) sports celebrity a few years ago.

Is it usual for tumors to just appear with no fore-warning? She said that this new one just ‘popped out’ (her words :- ) the day before we went for scheduled appointment….I didn’t even know about it until we were in exam room and I asked her if there was anything she wanted to tell doctor when he came in.


I’m totally confused and aggravated here…Mom has numerous medical problems, yet she’s bounced back from the 2 surgeries remarkably well…but I hate seeing her have to go through this yet AGAIN :- (

Any info will be greatly appreciated…I’ve googled ‘recurring tongue cancer’ but can’t wade through the numerous results to find what I’m looking for specifically. Links to the info I need would be great, also.

Thanks in advance…

Deb

Hi Deb

i have to say unfortunately this problem is not uncommon and it strikes like a stealth bomber out of the blue.

In observation of the history i have to say i find the treatment plan a little bizarre to say the least,as most people get everything but the kitchen sink flung at this disease the first time,although a few have managed without rads or chemo,but i dont know of anyone who has had a second go round with it and not had follow up treatment.
I have belonged to OCF which is our american sister site for over two years and the majority of oral cancer patients in the states,receive their treatment at a major cancer centre some travel hundreds of miles to get to a really good one,and i have noted over the time i have been on the boards that the very experienced and expert forum members always advise opinions from CCC's(comprehensive cancer centre)before treatment plans are embarked on .I just wonder if they thought that due to her age your mum may not have been up to tolerating very aggressive treatment..I have many friends who are undergoing second and third recurrences and i will be happy to put you in touch with someone in your area if you would like me too.

love liz

Mom151 - I'm a four time recurrence kind of guy right now. The lack of other treatments is unusal to me and the experience I've had. My surgeon works closely with the radiologist and oncologist. With the 66 radiation treatments and two separate chemo treatments, I'm yet fighting a four attack that has moved to the throat (from the left tongue). So...my thoughts are to get more aggressive and get after it. Cancer does not sleep.
Wishing you the best.

Pembo

Hi Deb
I probably shouldn't be sticking my bib in here but when I was reading your post I was very surprised there was no follow up treatment ~ although there are those who have gone through without chemo and r/t as Liz said. My thoughts were that the treatment was managed around your Mum's age too although as it's turned out she's probably had an even rougher ride then she would have with the follow up in the first place.
It's dreadful that she has to endure this in any way, shape or form at her age. I hope you soon get some satisfaction.
Cheers
Deborah

Hi Deb

I am so sorry to read that your mom is having such a difficult time of it.

I have to agree with Trev. It is odd that your mom got no (or, at best, absolutely minimal) follow up care. Even at 4 plus years out, I'm only now seeing my doctor every 6 months--next year it'll go to annual.

Like your mom, I am a tongue cancer survivor. In early 2005 the left side of my tongue was removed and replaced with a piece of my right forearm. (Is that what you mean by "cadaver material" or did the doctor actually transplant tissue from someone else?) I also had a neck dissection (50 nodes removed; all clear) and wore a trach for about a month. Much to my doctor's surprise, neither rt nor chemo was necessary in my case either. Thus far, I'm cancer free.

The day before surgery I got three radioactive injections into my tongue and one in the floor of my mouth (hurt like a son of a mother, but the injections made me forget about the pain in my ear for a moment)to see how far my cancer might have spread.

Is your mom's doctor a head and neck cancer specialist? Does he work with a cancer center? Most importantly, is your mom happy with him? You might even want to contact the American Cancer Society in your area to see if they could direct you to a different doctor.

As for what's normal, welcome to the world where there's pretty much no such thing; still as many recurrences as your mom has had just doesn't sound good. Dr Joshi would be the best person to answer those kinds of questions.

Please let us know how things turn out for you and your mom. Remember that you're not alone in this.

Julia

Deb,
sorry to hear about your mom.
I am a 2 time recurrence on the tongue. After the 2nd I went through radiation I was diagnosed in 11/07 last surgery was in 2/08 last treatment in 5/08 I still see my doc's every month and when i have just anything lil on the tongue they are on it and keeping a close eye on it and then i see them all the time .
I guess what i am saying it is weird to me that they are not keeping a closer eye on her. I would start asking more question and asking why she is not being seen more often.

wishing you the best and you and your mom are in my prayers
take care
marnie
remember to keep the faith for it will get you thourgh it all