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WGM Stage4 Tongue, base of mouth

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

Hello, my name is Bill and my mother (WCG=World's Greatest Mom!!) was recently diagnosed with stage 4 tongue and base of mouth cancer. Lymph nodes look like they might not be affected but not 100% sure of this. Our first DR. took a week for this, a week for that and time is passing which has me stressed. We waited a week after finally getting the diagnosis to see a surgeon at a big NYC cancer hospital near where I live and they recommended the full surgery (1/2 tongue, neck dissection, jaw bone). Mom said no way she wants to go through that. She's concerned about not being able to talk, swallow, etc...

So now the pressures on to find someone good who is more likely to go the chemo/radiation route over surgery...organ preservation. I have no experience with cancer and the internet is not giving me any clear answers on who to see in the NYC area. I want to get this treatment started as the damn C is spreading. It doesn't seem like anyone any sites names names of hospitals and DR.s and not sure if that's some protocol I'm not aware of...

Also, for anyone who has gone through the surgery, obviously it sounds pretty awful and its understandable why she would want to avoid it at all costs. But I have a feeling its her best chance as the Dr. said. Is it that bad? For those who went through it, are there positive stories I can share with her about your ability to talk and swallow?

Thank you in advance. I'm over the shock and just want to get her into good hands quickly and get on with the battle ahead of us. She has a wonderful family around her, we just want to take the best steps right now and get her into the best situation as quickly as possible. It's the least we can do for her after all she's given to us.

Bill

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

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

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

Thank you, John. Really appreciate you taking the time to write.

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Sorry you find yourself here, but it's a great place of info and support.

I don't know the protocol with your doctor / hospital...Here in Houston, at MD Anderson, a "conference" of fellow head and neck doctors review the diagnosis and agree upon best plan of attack. And certainly may have happened at your hospital. That being said, a second opinion sounds to be in order. Where to get that opinion I'm not sure, sorry.

As for the wait, that was difficult for us too. I received initial diagnosis from my ENT on Jan. 14, 2010 and was referred to MDA. I did not see my primary at MDA until Feb. 11, 2010.
I began treatment March 15th. Once treatment began, it was off to the races.

All the best to your mom.
Chuck.

Carolinagal's picture
Carolinagal
Posts: 90
Joined: May 2010

I'm sorry about your mom's diagnosis. I'm glad that she has you to help her through all of this. There is a man on the esopageal cancer discussion board who has a wealth of knowlege about doctors, hospitals and treatment options. His name is William Marshall.
I hope that helps! Best to you and your mom!

wm07480
Posts: 3
Joined: Aug 2010

Hello Bill,
I was researching info for my mother and came across this site and your message. My mother had surgery for tongue cancer May of 2009. Her doctor was Dr. Lanny Close of Columbia Pres in NYC. He was also my husbands doctor for his throat cancer in 1999.
My mom's surgery took most of her tongue and required a muscle graft to reconstruct the base of her mouth. It was more extensive then we thought it was going to be. I think the reason for that is due to the agressiveness of the cancer. The time between the CT scan and surgery date was approx. one month. I never confirmed this with the doctor, it was done and we needed to support my mother in her healing.
She eventually went for chemo and radiation but was too weak so she stopped the chemo and just continued with the radiation. Unfortunately the cancer came back. Keep reading it gets better. Additional surgety was not an option so we went to Dr. Robert Altman of Hackensack University Medical Center for a different chemo program. He did question why she hadn't tried chemo first to shrink the cancer. Again I go back to the thought that her cancer was very aggressive and had grown considerably from the time surgery was planned and actually took place.
My mother can speak clear enough for most people to understand. She still is feeding through a stomach peg but is trying to improve her swallowing so she can have it removed. Even so I don't think she will ever eat regularly. She will just drink high calorie beverages to maintain her weight. We do, however, have an appointment with a dentist to see if there is a device that can be added to her dentures to it can help her to swallow and speak.
My mother is a strong person. My sister lives with her; being alone is not possible during this time.
My suggestion to you, make an appointment ASAP.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Bill, I'm truly sorry about your mom's dx and I will put you both in my prayers. I also cannot help with that type but there are MANY here who can. You will find this site very helpful for info, venting, etc. There are many great people here who will be able to answer your questions and any of us will let you vent.
You're in my prayers.
God Bless you,
debbie

coachL
Posts: 12
Joined: Jun 2009

Hi. My husband had stage IV base of tongue with spread to lymph nodes. Received only chemotherapy and radiation in Springfield , IL April of 2009. He is 13 months post treatment and just received clear PET scan results. The chemotherapy was delivered in what was called an inter arterial mode. They inserted a catheter in the groin and sent it up directly to the tumor site and "doused" the tumor with cysplatin. He also received 35 rounds of radiation to the throat area. Very aggressive treatment but he is doing so well and has no cancer today. The Drs we had were Dr. Robbins and Malone. Also Dr Rau was our oncologist. They all work together. It may be worth your time to fax your moms info to them. Let me know if you need help with that.

I will be praying for you and your mom! You can beat this!

Coach L

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Bill,

Sash and I think Ratface went through a similar ordeal as your mum is scheduled. Hopefully they chime in or you can find their posts and PM them.

It sounds like your doctors aren't that forthcoming with information or schedules. If you have the capacity, you might want to try to get a second opinion as these treatments are not a perfected science by any stretch. There is only a 'best way forward' usually with choices to be made. If you get a 2nd opinion, obviously take your moms scans and any test results.

Some Doctors can be very arrogant or lack the care and urgency you require so do not be afraid to change them out and find a lead oncologist you feel confident in to take you through this crappy journey.

More leads will come from this site so follow them up and push to get your moms treatment started which ever way you all decide.

I had a much less advanced C with SCC of the tonsil. Surgery, Erbitux and IMRT. 10 months and doing great. It is a tough road Bill, no doubt, but she can get through it with your help and continue to have a good life despite the few changes that may present.

Regds and wishes your way.
Scam

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

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. :D

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's picture
Chase07470
Posts: 11
Joined: Aug 2010

I really appreciate the support and information. We are going to see two radiologists this week at two separate NY hospitals to get their opinions and then out to Chicago to meet with a Dr. on Dr. Vokes' team at U of Chicago. They have had a lot of success with non-surgical options and looking forward to hearing everyone's approach and then making a decision. Mom is doing well and keeping us all calm and feel like we're now moving as fast as possible.

I will let you know how it all goes and the decisions we make. Crazy stuff but you have to face it!

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hi - Pam Here - FORMER stage IV Base of Tongue cancer with spread to lymph nodes. I did induction chemo, then concurrent chemotherapy with radiation treatments. At three month checkup, my radiological oncologist said he'd consider me to be in remission (we're watching one "hot spot"). I was told that there was a chance that after chemotherapy and radiation, we'd have to do salvage surgery; so far (knocking wood) the surgery isn't needed.
I spoke with three different cancer docs and a surgeon before making my treatment decision. I was nervous and confused, but glad I talked with all of them before deciding. Hope things go well. As others have noted - this site is a godsend - very glad I found it before my treatments even started.

UWSNYC
Posts: 11
Joined: Aug 2010

I highly recommend Eric Genden at Mount Sinai in NYC. He is highly skilled in robotic surgery, if it comes to that. His preference is to use surgery as a last resort.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Bill

Sorry that you're here, but welcome. I was diagnosed with Stage IV BOT which had spread to 1 lymph node. On our Dr's recommendation, we opted for the no surgery route. Instead I went through 35 radiation treatments and 3 concurrent chemos (Cistplatin). (I did have surgery to remove the lymph node, which is when they found the BOT cancer.) Just finished treatment on July 30 and am doing great. The Drs did not recommend the surgery because it is such a radical procedure and the quality of life issues that go with it. I won't know for several more months if the cancer is gone. My understanding is if the PET/CT scan is clean after 6 months, then you're good. I was also fortunate that I didn't have much waiting between diagnosis and the beginning of treatment. Cheers

Jimbo

shauntae
Posts: 4
Joined: Aug 2010

we wish you the best!

shauntae
Posts: 4
Joined: Aug 2010

I wish you the best. We had a stage 4 B sarcoma in the sinus cavity. Inoperable, went to the Neutron Center @Fermi Lab. Only 3 facilities in the USA that do this treatment. The tumor has stopped growing, pain has decreased. It is recommended by the NIH, please check it out.

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Wecome to the site. Please try to stay away from the internet. This is generalized information and you may just find yourself searching for only what you wish to hear and not all of the information you need to hear.

I would get a second and 3rd opionion and try to visit NCI certified institutions whenever possible. You may find the additional information and or other opionions may help you to make choices towards other options of treatment allot easier when pesented to you in the right manner.

My personal choice that best siuted me was to have the surgery first and then deal with the RAD/CHEMO later.

use the site, we are here for you.

Best

Mike

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

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's picture
Chase07470
Posts: 11
Joined: Aug 2010

Just looked into sbarca's Dr. Gedden recommendation. This looks like what we've been looking for! Robotic surgery seems very promising...just hope he is not on vacation. Thank you. sbarcan!

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

Just looked into sbarca's Dr. Gedden recommendation. This looks like what we've been looking for! Robotic surgery seems very promising...just hope he is not on vacation. Thank you. sbarcan!

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Chase,

As you are discovering, many Doctors have an agenda and become very arrogant. My ENT guy mentioned first up that you could go either way - Shrink it first with Radiation and then Surgery if required. He never pushed.

Once my PET CT result was in - enter Chem Ali.... , I sat with my new board : The Radiation Oncologist, the Chemo Oncologist and the ENT Doctor. Two of the three said surgery and Rads. Only Chemo Ali pushed , well... his Chemo. As mine was contained to the Tonsil and only Stage 1, I decided to go for the full monty and surgery first as it was relatively a simple surgery to excise the tumor from the tonsil area, so no great advantage to wait.

I pretty much called the shots after asking all the right questions and we came up with the plan. The message here is - ou really need to feel comfortable with these people who will have your mom's lives in their hands. There are plenty of good Doctors out there.

I recall Lance Armstrong's story how he went through the same process as you and was confronted by a very arrogant 'my way is best' Doctor who was a leading guy in the field. He sought a second opinion with a very different protocol, it felt right and he underwent what has now proven to be a very successful treatment.

Keep asking, keep looking, when it feels right you will know, then run with it. Treating this ***** of a disease is not a perfected science by any stretch and there are Doctors out there trying to fill up there books (and their bank accounts) and sadly you have to navigate this brutal path. You are doing it right Chase so power to you man. You will get a good grip on this.

On another note, I also believe we should fight this Cancer on all levels and have included Diet and Lifestyle changes in my ongoing fight to stave of this beast for good. You can read more on my Expressions page if that is of interest as she can start that part now. One she goes into treatment, the going can get rough, but once she is on the road to recovery there are many positive changes that can be made.

All the best Chase.

Scam

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

You do have an army behind you - we may not all be as physically strong as we used to be (yet), but we are determined.

Choosing a doc (and treatment plan) was rough for me - I was waffling between a local (Northern KY, 10 minutes away from home) cancer center (not comprehensive, but approaching)RO and one at a University Hospital Cancer Center (Cincinnati, OH) 20 minutes away from home. Both docs are highly recommended - they even recommended each otherl I thought I'd drive myself insane running around in circles. Finally went with the KY doc (closer to home - I had treatments in winter, so getting there was a concern - and he liked the "no surgery up front" approach, and used Amifostine to try to protect salivary glands during treatment). It was a hard process for me. Hope you get to stop running yourself soon.

I got the impression when speaking to surgeons at the university center that their protocol called for surgery first, then radiation and chemo for most patients, and reversing the order if tumors were very large or tricky. First surgeon told me they'd operate on me, then do chemo-radiation, THEN he looked at my films and consulted with the dept. head, then said it'd be chemo-radiation first, then surgery.

Wish I had info to make the decision making process easier. For what it's worth, you do want to take into consideration what kind of feelings your mom has about the docs - it's very important to have faith in your doc's ability to get the job done. My RO and MO are totally different (one's a "hand-patter", the other is anything but), but I don't doubt their ability or desire to succeed a bit; they work for my purposes. Hope things went well for you all today.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

You do have an army behind you - we may not all be as physically strong as we used to be (yet), but we are determined.

Choosing a doc (and treatment plan) was rough for me - I was waffling between a local (Northern KY, 10 minutes away from home) cancer center (not comprehensive, but approaching)RO and one at a University Hospital Cancer Center (Cincinnati, OH) 20 minutes away from home. Both docs are highly recommended - they even recommended each otherl I thought I'd drive myself insane running around in circles. Finally went with the KY doc (closer to home - I had treatments in winter, so getting there was a concern - and he liked the "no surgery up front" approach, and used Amifostine to try to protect salivary glands during treatment). It was a hard process for me. Hope you get to stop running yourself soon.

I got the impression when speaking to surgeons at the university center that their protocol called for surgery first, then radiation and chemo for most patients, and reversing the order if tumors were very large or tricky. First surgeon told me they'd operate on me, then do chemo-radiation, THEN he looked at my films and consulted with the dept. head, then said it'd be chemo-radiation first, then surgery.

Wish I had info to make the decision making process easier. For what it's worth, you do want to take into consideration what kind of feelings your mom has about the docs - it's very important to have faith in your doc's ability to get the job done. My RO and MO are totally different (one's a "hand-patter", the other is anything but), but I don't doubt their ability or desire to succeed a bit; they work for my purposes. Hope things went well for you all today.

wm07480
Posts: 3
Joined: Aug 2010

I am so sorry. You think I would remember the correct name of the doctor (there have been so many). It is Dr Robert S. Alter of HUMC. 201-996-5081 www.humccancer.org.
My thoughts of success to your family.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Chase, sorry for the delay in responding but have been off the internet for a few days. I am being treated in Bangkok, Thailand, which is one of the top countries for "medical tourism". They have some excellent, certified world class hospitals here. Most people come to Thailand for treatment because the treatment facilities are top notch, the Doctors are well qualified and the cost is so much less expensive than in most countries. I chose to be treated here since this is where I live. Cost is not an issue for me as I have insurance. Believe me, if I did not have fully 100% confidence in my medical team, I would have gone elsewhere in a heartbeat.

They get patients from all over the world. There is a Starbucks in the hospital and it looks like a UN meeting place most mornings. Cheers.

Jimbo

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

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!

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Bill,

Sorry you have this dilemma. I think the Drs advice to see a Psycoloist or Psychiatrist is the best way to move forward as they are trained in this.

I don;t know how much she has heard or read but sometimes too much information is not so good. I went right through this without much input as I didn't find this board till about 2 months after treatment. While I would have liked to know more about what was happening to me at times, I also think I was better not to have known some things before I started the journey. My Doctors downplayed the treatment during the 'board' meeting, perhaps so as not to scare me off.

Your mum obviously has great fear about the treatment and the different life she will have afterwards, but many many people do make a full recovery with minimal effects once recovery is well established. We have a new lease on life, we have a new appreciation of life and of our health. Sometimes good things can come from the bad experience.

Going through this ordeal, there were some very very dark periods Bill, there is no denying that, but to be able to look forward now to a full and meaningful life with family and friends is truly a treasure.

How you convince her of this is a tough one. Maybe the argument of family who love her and want her to be around to see grandchildren born and grow up, attend weddings, birthdays, Christmas and all the other family events that bring joy. Having a third party to sell these arguments may be more effective Bill, maybe.

Some people choose not to use conventional therapy and opt for alternative treatments, which has to be respected, but to do nothing at all to attempt to fight the Cancer certainly leaves some questions unanswered. If she does start treatment, she will need to will to fight as it can be a rough ride. I don't have the answers Bill but hope some survivor experience here maybe of some use.

Regds
Scam
Out of surgery 1 year last Friday - on that very day, I took my little girl to see the Tigers for her 3rd birthday. That's us in the photo << That alone was worth the fight !!

team stevens
Posts: 46
Joined: Sep 2010

first, my husband & i are sorry for what you're mom is going through, & it can't be easy on you as the caregiver. my husband was diagnosed w stage 4 & his tumor was base & 5 right lymph nodes. at first the dr's said chemo would probably shrink it but he'd have to have a third of the tongue removed because of how aggressive the cancer was. it seems he had it for some time without knowing & had still been smoking cigarettes which only fed the beast. after 5 rounds of chemo, the tumor stopped growing & even shrunk some, but the only way for him to beat it (and we got as many dr's opinions that we could in a short time frame) was to have 100% of the tongue removed and a flap formed from back muscle. we freaked out for a minute, but decided to go through with the procedure. he had a trech tube in place & the surgery lasted 14 hrs. all of his bottom teeth were removed and 1 week post surgery a peg tube was put in. his speech improves week by week with speech therapy. can only swallow small amounts of water & juice. his voice box wasn't effected & he's now 6 weeks out of 6 weeks of rad along with 1 chemo per week for the 6 weeks. i know it's a scary for your mom, but my husband doesn't regret it. he's still here, and educating everyone he meets about this "intruder" of the tongue.wish we had seen your post sooner. we had a great surgical team @ MUSC of charleston sc
please keep posting with your mom's progress.
we're praying for you both

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

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?

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Bill,

Glad to hear your mom is doing well so far after a marathon in the OR. As for post op issues, mine were 1. pain and then 2. constipation. The pain can be managed with drugs, the drugs and lack or food and movement = constipation. THis can get bad and must not be taken lightly. Keeping up fluids and some movement. Doing squats and walking are about the only things she can do so try to have her doing that as much as bearable. Gotta keep the gizzards working. Keep us briefed.

Scam

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

give Mom a hand squeeze for me. Glad to hear the surgery went well. My only tidbit is humor. If she'll watch TV, put on funny stuff for her to watch. It's proven to reduce pain and speed healing. Like Scambuster said, fluids and nutrition are important. I know when I had my tonsil out with open biopsies, I was told to increase my protein intake afterward. Here's hoping for a smooth recovery. Keep us posted.

team stevens
Posts: 46
Joined: Sep 2010

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

papagrizzly72
Posts: 2
Joined: Sep 2010

Having been through tongue and throat cancer first hand I can tell you it's not a picnic. I chose the chemo and rad route personally. I was given the choice of that or surgery cancer cut out jaw reconstruct etc. I too didn't see surgery as an option. In my case the ability to talk eat or breathe is gone. I have been told however that the possibility to eat is there with the removal of my voice box. The doctors I used were in a group called carti. I'm in searcy arkansas. I know Dr Scott Stern is one of the best oncologists in the country. He specializes in ent cancers. I'm thankful everyday I had my doctors. I am 4 years out from treatment. I hope my post is helpful to someone and I pray for everyone in this position.

papagrizzly72
Posts: 2
Joined: Sep 2010

sorry didn't mean to post twice

UWSNYC
Posts: 11
Joined: Aug 2010

It's great that everything is working out for your mom. I'm assuming that Dr. Genden performed the surgery; as I mentioned in my original post, I think he's terrific as well as everyone on his team. Please feel free to ask to reach out to me directly.

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

I have no advice but I do have Praise to the Man above of answering all the prayers.

Thanks for the update with good news starting recovery. Please keep us posted.

More prayers for pain to lesson daily and for fast recovery along with patience for all.

John

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

My husband was recently diagnosed with Stage IV base of tongue cancer. 9 years ago he had tonsil cancer and received radiation after a radical neck dissection in which all the lymph nodes on the right side of his neck were removed. We also were told that surgery was the best option for cure. We were sent to Mayo Clinic in Phoenix for evalutation for the robotic surgery to remove the tumor. The Mayo doc took one look at my husband and said he could not do the surgery robotically (tumor is too large) and that the only surgical option was removal by "breaking" his jaw, removing more than 50% of his tongue and later on perhaps reconstructing the tongue with tissue from another part of the body. For us, surgery was so horrendous that we rejected it. We opted for chemo and radiation. He started Chemo 3 days ago and will have 3 cycles of Taxotere and Cisplatin over a 9 week period then will receive radiation and more chemo over 6 weeks. We know he has a better chance of cure with the surgery but quality of life issues prevented us from opting for the surgery. Living without speech or swallowing (and the ability to enjoy eating) would be horrible for him. I can understand why your mother did not want the surgery.

denise417
Posts: 32
Joined: Sep 2010

Bill, I wish your mom and your family the best. She has a great start, a son on here looking to help her. That is as precious as a mountain of good care Bill. I was also offered surgery for throat cancer, and I decided against that. I am 57 and like your mom, not willing to go thru all that. I am also waiting to start the Chemo and rad myself, and feel like time is wasting while they put in a trah, drop a peg tube, etc. So, I know what you are feeling. Like myself, lets all hang in there and pray for the best. Sounds like she has a good start, keep asking and seeking information. Can never have enough knowledge, and it appears with cancer, the answers are hard to find. Best wishes, I will be watching for good reports. denise

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Chase07470
Posts: 11
Joined: Aug 2010

Thank you all for your kind words and prayers. They must be helping as Mom is progressing very nicely. Two weeks out of surgery and she is talking now and her speech is pretty darn good considering what she's been through. A speech therapist is working with her every day. She can't swallow yet but seems relieved to have the worst of the pain behind her. It seems whatever she is dealing with now is much easier to handle than the first ten days. My father has been right by her side, sleeping in the same room with her and probably driving the medical staff a little crazy but think it helps her emotionally to have everyone around her. The surgery is very invasive and think that takes support and positive thinking to get around. We've been preaching to look on the bright side as the tumor is now gone, her chances of a healthy life are very good and we just need to get over the bridge of recovery to get there. She responds to that but you can also tell she's a little angry about it all. But we all feel like she'll get through it and am very happy.

SBARCAN, thank you for the recommendation! Yes, Dr. Genden performed the surgery and the early returns indicate he did an amazing job.

Denise, good luck with your treatment but you shouldn't wait too long to make a move. Be sure you understand the consequences of not taking surgery. Every case is different but with mom, her odds of returning to a close to normal life were much better with the surgery. There was a lot of hope. The other options, while enabling her to avoid the surgery, just didn't make sense based on the chances she would live very long. I will pray you reach the right choice for you and get into treatment.

Chase07470's picture
Chase07470
Posts: 11
Joined: Aug 2010

Mom made it home from the hospital. She had developed an infection which kept her in an additional week to ten days. She toughed it out and we had our first almost normal night since this all began last night, watching a movie and talking about what's happened.

She's healing, the pain is subsiding and she is talking up a storm which is music to our ears. But on the horizon, after that grueling experience, is chemo and radiation. I'm just hoping she reacts as well as one can to this. Thanks to you guys, I know all about what to expect and will stay on top of the issues as they arise.

After trying to fins ways out of the surgery and then going for it, she's back to wondering if there is a way to not due this leg of the treatment. The Dr.'s say 50% chance it comes back if she doesn't do it, but only a 10%-20% it comes back if she does. It would be so great to know the outcomes of both paths at this point. Anyone have a crystal ball out there?

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

No crystal ball, but it is obvious that your Mom is a very strong woman. I am happy that she has made it home and is starting to feel better.

hveshdon
Posts: 1
Joined: Dec 2010

Bill, I recently had a grandparent with a similar cancer problem. You will be in my prayers and I will also pray for the ENT doctor or whatever specialist that you have. God be with you.

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