WGM Stage4 Tongue, base of mouth

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?

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?

Chase07470 said:

Update on Mom
Hi All,

Sorry to be away for some time. We ended up seeing five cancer specialists in NYC and all came to the same conclusion, highly curable but not treatable without surgery first. The good news is they all think she will be cancer free. The bad news, she's refusing to have the surgery which we have scheduled for Sept 8th. Basically, the tumor grew in a way that is a worse case scenario in terms of being a candidate to respond to chemo and rads. They all say it may respond a little, the treatment will be extremely taxing and it will just grow back. Meanwhile, the cancer will likely spread through the lymph nodes in the mean time.

I feel like she is signing her death warrant. She doesn't seem to understand that whether she dies from this in the next year, treats it with chemo and radiation or has the surgery, the next year is going to be awful no matter what. At least by having the surgery, at the end of the year she has what we're being told is a 70%-90% cure rate.

She's focused on the worst case scenario outcome of not being able to speak or swallow only then have the cancer come back. She doesn't want the handicap of a speech impediment and no swallowing. We talked with one of the oncologists today and he said she should go see a psychologist...who wouldn't take those odds and run.

Any advice? Did anyone feel the fear of becoming handicapped with the speech only to go through it and realize it was manageable and there was a lot in life worth doing even if you can't speak quite as well as used to? I told her tonight if it were me, I'd take the surgery and those odds in a heartbeat over what she is getting herself into otherwise. I'm hoping if she can read some of your responses or the responses of spouses of people who have gone through this, she might start getting her head around accepting the process and looking forward to better days. Again, we're being told its very treatable. She probably will only lose 1/3 to 1/2 of her tongue. That the operation and aftermath is fairly painless, the radiation will be very difficult but at the end, in normal situations, she will be able to swallow, talk and be understood and be able to function fairly normally.

Thank you to everyone. You've all been a huge help!

Chase07470 said:

Surgery Complete
We had the surgery on Wednesday at Mt Sinai in NYC. It was a major operation lasting 13 hours and she came out of it just fine. It's pretty amazing what these surgeons do and we're just all so happy to have found the right surgeon for her on this board! To get her tumor out, they had to take a half to two thirds of her tongue and base of mouth was replaced with skin from her arm. On the upside, the cancer at not spread to her jaw bone so that wasn't removed and replaced by the bone in her leg as we thought it would be.

Hard to figure out what she's thinking and feeling at this point. She's part of that stoic generation that don't complain or emote so much. She smoked for over 50 years which is what got us here. She was on the 14mg patch heading into surgery and now off it. She was a little frantic yesterday, saying she was extremely hot even though it was not warm in the room, was claustrophobic even though she was in ICR and looking out into a very big room. So just trying to make her comfortable where possible and think she will feel a million times better when they let her get up an walk which is today. The nurses all really like her because she's smiling the whole time. Her color has returned and all and all, its looking pretty good...definitely great to get through the surgery and have her come out without any comlicating issues.

I'm going to read through posts on here for post op advice. Thank you all for responding. Becoming educated quickly helped our family so much in dealing with the diagnosis and how to treat it. For us, the best option was surgery. It took a little time to figure out the nature of her tumor and the issues that trying to shrink the tumor with chemo or rads would bring into play. It just wasn't in the cards for us to not remove part of her tongue. We're keeping our fingers crossed on the speaking and swallowing front but one day at a time.

Rooting for you Team Stevens. Has the radiation been extremely difficult or is he responding well to it?

team stevens said:

Doin' ok
I'm so glad you're mom didn't have any complications & is on the road to recovery. hope you're getting plenty of rest & eating properly. it's very important as the caregiver that you take care of your needs also. you're mom's blessed to have you go through this with her.

as far as post op advice goes, i paid close attention everytime the nurses did anything..from changing out his iv's, how to clean around the insitions, even helping with drainage tubes. after a couple of days, i was doing most of it myself,that way i wouldn't freak out when we got home. you're both going to be fine. it'll seem overwhelming at first, but when you get your rhythm & daily routine down, you'll be ok.

mike finished rad. 6 weeks ago & still has some fatigue. he's had a trech tube in since late Dec. & got the peg tube a week after surgery. so to go through rad with both tubes in was hard for him. he also took an ativan about 45 minutes before treatment which helped alot.we go in for a scan next wednesday & hopefully we'll find out when the trech's comin out.

keep posting & we're here if you need us
praying always for strength & healing

Chase07470 said:

Surgery Complete
We had the surgery on Wednesday at Mt Sinai in NYC. It was a major operation lasting 13 hours and she came out of it just fine. It's pretty amazing what these surgeons do and we're just all so happy to have found the right surgeon for her on this board! To get her tumor out, they had to take a half to two thirds of her tongue and base of mouth was replaced with skin from her arm. On the upside, the cancer at not spread to her jaw bone so that wasn't removed and replaced by the bone in her leg as we thought it would be.

Hard to figure out what she's thinking and feeling at this point. She's part of that stoic generation that don't complain or emote so much. She smoked for over 50 years which is what got us here. She was on the 14mg patch heading into surgery and now off it. She was a little frantic yesterday, saying she was extremely hot even though it was not warm in the room, was claustrophobic even though she was in ICR and looking out into a very big room. So just trying to make her comfortable where possible and think she will feel a million times better when they let her get up an walk which is today. The nurses all really like her because she's smiling the whole time. Her color has returned and all and all, its looking pretty good...definitely great to get through the surgery and have her come out without any comlicating issues.

I'm going to read through posts on here for post op advice. Thank you all for responding. Becoming educated quickly helped our family so much in dealing with the diagnosis and how to treat it. For us, the best option was surgery. It took a little time to figure out the nature of her tumor and the issues that trying to shrink the tumor with chemo or rads would bring into play. It just wasn't in the cards for us to not remove part of her tongue. We're keeping our fingers crossed on the speaking and swallowing front but one day at a time.

Rooting for you Team Stevens. Has the radiation been extremely difficult or is he responding well to it?