WGM Stage4 Tongue, base of mouth

johnlax38 said:

Hi Chase,
I am sorry for
Hi Chase,

I am sorry for your mother. But you have come to the right place. I can't speak for that type of cancer so I will just offer you and your family my best wishes and prayers.

This is a great place for questions and answers you will see

John

SASH said:

SASH reporting for duty
Bill sorry you have to be here but this is a great place.

Second opinion is definitely called for in this case. While you are thinking a lot of time is passing, it is probably all within the norm to take this long.

Based upon tumor size and location the doctors should be presenting your mom's case to the tumor board to come up with the "best for her" treatment.

Rads and Chemo might be able to shrink the tumor so even if she needs to have surgery after these treatments, they might not be as drastic.

A little about me.

Having a problem swallowing starting in May 99.
Seeing ENT who said I had a sinus infection and given meds for this.
July 99, still having problems swallowing and ENT said it was allergic reaction to meds so gave me different ones.
Aug 99, saw internist who said to go get a biopsy of tongue.
Sept 10, 99 Biopsy taken from top and bottom of tongue by oral surgeon. A week later I got the news of Stage 4 Squamous Cell Carcinoma. Oral surgeon had no clue where to send me for treatment.
Found doctor in Miami, about 40 miles from home, and saw him quickly. He presented case to tumor board and the plan of action was simultaneous rads and chemo to shrink the tumor, then surgery if needed. If surgery was to be done first they were going to take 100% of tongue and voice box. I would never eat or speak again. This was not an option.

Middle of October has 12 teeth pulled to protect them and jaw from radiation. Funny how pulling teeth is to protect them. Tooth Fairy was very good to me that night.

Nov 1 started radiation and weekly chemo. Went through both and then surgeon came back and said, the tumor is still there so we now have to go into surgery and take out 85-90%.

May 1 was surgery which was scheduled for 18 hours and when I woke up at 3 I figured it was a little longer or I was asleep a bit more than I was expecting. Turns out it was 3 pm and one of the surgeons came in and said, "we didn't have to do as extensive surgery as we originally thought." Turns out what the surgeon thought was tumor was scar tissue and dead cancer cells. This was confirmed with 6 deep tissue biopsies which were performed during the surgery.

Healing time after and some speech therapy allowing with some swallowing tests showed that I can talk, even without the use of my tongue. I swallow differently than they thought was possible, I just trained my body to do it, etc.

There are doctors, maybe not at her facility, maybe not even in NY, but there are those out there that might be able to treat her the way she needs and wants. Some place I can think of that were contacted on my behalf about treatment options. Dana Farber in Boston, UM Sylvester in Miami (this is where I was treated). Others that were mentioned, MD Anderson in TX, Northwestern in Chicago, and others.

Good luck to her and you finding the right place for her to get well.

I am currently NED and have been since 2000.

Chase07470 said:

Thank You! and Update
Wow! You guys really are supportive and I am starting to feel like I have an army behind me! Thank you to everyone who took the time to support my Mom and the family effort. I do have a few individual questions at the end but wanted to give you an update...

Today was more of the same. My brother had called the surgeon who we initially saw and after talking the surgeon said he understood mom's desire to try to find a way around the surgery. He recommended we talk to an oncologist and radiologist on staff. Both seemed great but we all got the feeling like they were protecting the intitial push for surgery from our first meeting last Friday. Obviously, it's not what we want and I'm aware of the fact it's easy to blame the messenger when they are telling you something you don't want to hear. That said, here was the gist of the dialogue:

oncologist:
Surgery is recommended in this case for the best chance at a cure. We could cobble together an "alternative" treatment plan but there is absolutely no clinical data to support that would be the best thing to do.

me:
You said people and tumors respond differently to chemotherapy and some patients respond amazingly well. You agreed that as long as the tumor is shrinking, her condition is improving and therefore we are not risking the potential for success of a surgery by delaying it.

Oncologist:
There is a very, very small percentage of cases where the tumor grows very, very quickly when the chemo hits it but that's very rare. So yes, surgery would still have the same rate of success if we tried chemo first.

me: So, why, if she has the potential, even if it's small, of having her tumor shrink significantly and potentially save her lower teeth, jawbone and tongue, would we not try chemo first?

Oncologist: We recommend surgery in this case as the standard and best option to achieve a cure. There are no clinical trials that substantiate alternative treatments to surgery first.

me (I wanted to say this but of course bit my lip): You don't make any sense, sir. you just told me some tumors react very positively to chemo and that we could potentially save her tongue, jawbone and teeth while still maintaining the same success rate of surgery should the tumor not react, shrink slighly of grow slightly. WHY WOULD YOU RECOMMEND ANYONE TO HAVE SURGERY WITHOUT FIRST SEEING IF THEIR TUMOR RESPONDED TO CHEMO THERAPY??!!!??!!!

So:
1) The hospital is just dead set on surgery first as a philosophy
2) The Surgeon is very influential and put the muzzle on the oncologist
3) They're right and every other hospital that goes with induction chemo is putting their patients at great risk

My hope is to find a Dr. who believes in induction chemo. My hope is to find an oncologist who is excited by the potential of finding the right mix of chemo drugs to shrink my mother's tumor.

Tomorrow we meet with a Dr. who is the head of the oncology and radiology department of the hospital so am going to go to bed and maybe tomorrow we'll hear something that makes sense which would be either:

1) We always try to shrink the tumor first
2) You should never try to shrink a tumor first because the odds of the cancer spreading are simply not worth it given your potential cure rate where it stands now.

I'm just not hearing either of those two things and am going to hit the phones tomorrow when I get back and hopefully get some answers. Just strange that there seems to be such differing philosophies out there. And frustrating that the one our whole family is leaning towards is eluding us in our search for treatment.

Thank you to anyone still reading. It felt great to articulate that.

Questions, comments to you guys...

Jimbo: Great to hear your success and bet your happy to be through the worst of it. May I ask where you were you treated?

Shauntee: So happy to hear about your success in stopping the tumor. My thoughts and prayers on a continually improving progosis!

Mike: Great advice about the internet! How is your recovery going? Have you started the rads and chemo?

Pam M. Great to hear about your success with chemo and the rads….just so nice to hear about great outcomes in this awful scenario. May I ask who treated you?


Wm07480: Thank you for the info. I liked Dr. Altman’s reaction to the surgery but couldn’t find him at Hackensack or through Google. Do you have any contact info?