WGM Stage4 Tongue, base of mouth

Chase07470
Chase07470 Member Posts: 11
edited March 2014 in Head and Neck Cancer #1
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
«13

Comments

  • johnlax38
    johnlax38 Member Posts: 136
    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
  • Chase07470
    Chase07470 Member Posts: 11
    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

    WGM Stage4 Tongue, base of mouth
    Thank you, John. Really appreciate you taking the time to write.
  • RushFan
    RushFan Member Posts: 224
    Hi Chase;
    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
    Carolinagal Member Posts: 91
    I'm sorry about your mom's
    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
    wm07480 Member Posts: 3
    tongue cancer
    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
    debbiejeanne Member Posts: 3,102 Member
    Bill, I'm truly sorry about
    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
    coachL Member Posts: 15
    Hi Bill
    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
    Scambuster Member Posts: 973
    Calling Sash & Ratface
    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
    SASH Member Posts: 421 Member
    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. :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
    Chase07470 Member Posts: 11
    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. :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.

    Thank you, everyone.
    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
    Pam M Member Posts: 2,196

    Thank you, everyone.
    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!

    Speaking with Multiple Docs Helped Me
    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
    UWSNYC Member Posts: 11
    NYC Recommendation
    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
    Jimbo55 Member Posts: 590 Member
    UWSNYC said:

    NYC Recommendation
    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.

    Stage IV BOT here
    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
    shauntae Member Posts: 4
    head/neck
    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.
  • shauntae
    shauntae Member Posts: 4
    Jimbo55 said:

    Stage IV BOT here
    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

    treatment
    we wish you the best!
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    TRY TO STAY AWAY FROM THE INTERNET
    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
    Chase07470 Member Posts: 11

    TRY TO STAY AWAY FROM THE INTERNET
    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

    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
    Chase07470 Member Posts: 11

    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?

    robotic surgery sbarcan
    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
    Chase07470 Member Posts: 11

    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?

    robotic surgery sbarcan
    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
    Scambuster Member Posts: 973

    robotic surgery sbarcan
    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!

    Self Interest
    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