Both ENT Doc's I have been to recommend surgery immediatley before any chemo is done. I have read where chemo can be done first to shrink the tumor (mine is stage 4 tumor on left side of tongue) possibly saving more of the tongue. I have been told the tumor has really grown too large for chemo to help and I would like to hear if others have gone different ways on which they did first. I should mention the tumor is bad enough I can hardly speak and don't want to eat so I don't have much time to mess around with this thing. My reconstruction ENT has done hundreds of these with good success so I feel pretty confident I'm getting back about the most I can as far as speech and eating go.
Radiation is what shrinks tumors. When chemo is used with the radiation it gives the radiation and extra boost. Chemo alone does not work on OC.
Kent,
Where in the world are you being seen? I can't believe the word RADIATION hasn't been used in describing your Tx. Please do yourself a huge favor and seek another opinion from a CCC ASAP.
CCC's
http://www.oralcancerfoundation.org/resources/cancer_centers.htm BEST CANCER HOSPITALS
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
Kent, I had surgeries 1st and if I knew then how this would be, I would have had the rads and chemo 1st to see if it would have helped. I listened to the wrong Dr.
Sorry that's me getting my lines crossed it will be radiation along with chemo. I've had 2 opinions from ENT's and both recommended the surgery first and I was curious if anyone had gone with radiation first or even it it's ever recommendned. With the way this thing is feeling in my mouth I'm not sure how much time I have left to mess with this thing. I will check on a CCC and see if I can get in. Is the experience much different at a CCC?
Kent,
There is a case of a chef in Chicago (anybody?) who was on Oprah. He was advised to have the surgery you are having but kept looking for alternatives. He was eventualy treated at a CCC (I Think)without the surgery and is doing well.
Kent,
Sounds as though your diagnosis is very similar to mine and I have no regrets about having surgery first. My tumor went deep into my tongue, all the way to the back and I had extracapsular spread from one lymph node, putting me squarely in Stage IV. Removing the cancer from my body as quickly as possible and following that up with the radiation/chemo combination has worked for me so far (almost 2-years).
- Margaret
Kent,
I totally agree with David...get yourself to a CCC right away! The team of Doctors at a CCC are the BEST. And you want the best people treating you, this is your life we're talking about!
Take care,
Shelley
Kent,
Found the Oprah link to Grant Achatz (the chef)
Grant Achatz on Oprah[/url]
[quote=Kent]I will check on a CCC and see if I can get in. Is the experience much different at a CCC?[/quote]
Kent --
The quote below was posted by a new OCFer after her husband was diagnosed with OC by an ENT. Since she lives in New York City, several people here encouraged her to get a second opinion at Memorial Sloan Kettering, one of the top cancer centers in the country. She posted this in mid-February after making an appointment there:
[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]
CCCs, or comprehensive cancer centers, take a "team" approach to treatment, which is critical for OC because the disease can affect diverse -- and vital -- functions. Your initial appointment at a CCC may be with an ENT, but your case will be considered by a "tumor board" made up of medical professionals from a variety of specialties -- surgeon/radiation oncologist/medical oncologist (chemo)/etc. -- who together will come up with a treatment plan.
Hi Kent,
This is actually the first time that I have written in, but I wanted you to know I had surgery first followed by rads, chemo & erbitux and am so glad I did. As soon as I found out that I had cancer I wanted it out asap and I'm almost 4 years out.
It worked for me!
I'm the one whose husband went from a local ENT to Sloan and I truly feel like we have entered a different universe(in a very good way).
I know our DR was an idiot(not because he was an ENT but because he was just an idiot) and we wouldn't have stuck with him. But I don't know if we would have realized how important a CCC was if it wasn't for the advice here.
In the last few weeks Dave has had to have a ton of appts and this place set them all up for us. It made what could have been a scheduling nightmare much simpler.
More importantly, every staff person we met so far was unbelievably knowledgable and competent.
My husband has BOT and the team leader is a well known surgeon at Sloan. He recommended chemo and radiation first and then surgery,if necessary.
I'm very new to all this but I think everyone's situation is different. There might be very good medical reasons for doing one first and then the other. So, the important thing is to find an MD who you trust.
I sympathize with moving fast,my husband is so uncomfortable with this "thing" on his tongue. But it is a big decision. Move fast but don't hesitate to go for another opinion.
Hi Kent- I hear you. Its the hardest decision. From what I've been told from my Drs. and what I have read for some reason the treatment protocol for tongue cancers is different with the anterior tongue and base of tongue. I think maybe the tissue is a little different? My Drs. were in disagreement and that made things tough for me. Of course I wasn't excited to sign up for this gruesome surgery that would change my life forever but they thought it was the best option for a cure and survival. My surgeon was VERY very adament about getting the cancer out of my body ASAP and following up with radiation and chemo. I don't know if it was the pathology of the tumor that made him think this way but he was pretty sure that the tumor would just come back if chemo and radiation were given first and surgery after radiation and chemo is much more complicated and risky. Your skin doesn't heal as well- your blood vessels are more delicate. I've heard some horror stories. There are successes yes of course-- but these are very real risks that can lead to major complications. Get all the info that you need to make the best informed decision for your situation. The surgery sounds horrible and it was REALLY tough but you'll recover from it if you do have to have it. The human body is amazing at healing itself and readapting.
Now I'm sure that people have had success with just chemo and radiation. Apparently this Greg Atchatz chef has. At University of Chicago they are doing some sort of new radiation therapy that has worked for him. You will be able to function after this surgery. Its a very difficult road but doable. I am 3 years out and have made more progress than I ever thought possible while I was laid up in ICU with tubes, drains IVs and a pen and pad wondering what life would be life for me.
If you do go ahead with this surgery you have a big support system here with people who have been through it all. Wishing you a full recovery from this disease and relief from pain. I know how much pain you are in. Its truly awful. I was on the verge of tears for 3 months popping Advil every hour. Definitely make sure you get enough pain medication and anti anxiety drugs to get through this. Its pretty rough!
Hang in there Kent. Be strong. You'll get through this.
Phil123. we had the same treatment but I wasn't as lucky as you. I sure wish tho. Congrats 0n the 4 yrs out.
Misskate,
I was just reading up on cancer of the tongue, have a sore spot, 99% sure its from radiation but still spent 2 hours on the internet looking up different pictures and descriptions specific to the tongue.
The lingual tongue is different than the base of the tongue and easier to treat. From what I read it looks like they are different tissue wise, not exactly sure why but it said it has to do with how the tongue develops when we are forming in the womb.
BOT treatments favor radiation and chemo first, and only if necessary then surgery. This is because when you start cutting on the base of the tongue there is always the chance that the amount of anatomy removed, or nerves severed in the process of tumor removal will cause LONG TERM REST OF YOUR LIFE, quality of life issues in speech, swallowing, tongue mobility, etc. So the general school of thought is chemo, which has short term consequences, radiation which has long term ones but which are not as severe as surgery, and failure of both those to completely eradicate the disease in that location, surgery, referred to often (when in the third position) salvage surgery. Don't let that terminology throw you.... it most often does not refer to dire situation though they can be in some cases. This is because the previous chemo and rads have greatly reduced tumor bulk and that means less invasive surgery.
Brian's posts sums up the advice I was given at my CCC very nicely. As the ENT put it, we wanted to "spare" you the surgery if at all possible. I can personally testify about the downsides of BOT surgery, even when it is done by skilled surgeons at a CCC after a first course of radiation and chemo. Of course in my case, the "salvage" surgery was then "savaged" by a second round of radiation and chemo due to the pathology reports of perineural involvement.
Still, I am healthy, can walk and talk so no matter what decision you make about surgery, just remember that in the end it will all work out.
Charm
Kent
My tumor, like yours, was on the side of my tongue. I went through Induction Chemo first which did shrink the tumor quite significantly and then had surgery to get it out. Net result I ended up having to loose much less of my tongue.
I would get another opinion.
Probably not what you want to hear at this stage, but you will feel better about it later on.
Kevin