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NEW TO ALL OF THIS!!!!

TBOB
Posts: 19
Joined: Sep 2010

My husband was just diagnosed last week with BOT cancer. I guess that's what it's called based on what I seen on line.Base of tongue?cancer stage four. We go to see the head and neck surgeon this week. Started with ENT. Have seen oncologist and oral maxillary surgeon friend of family.Other then Where do I start? What do I do? My most pressing question is the surgery. Oncologist and OMFsurgeon says we just need biopsy and the chemo and radiation will shrink the tumor. Then they surgeon can go back in and resect what is left.
The ENT and a different OMF surgeon says no with the biopsy they will debulk the tumor,put a trache in so he won't lose his airway post op and during radiation when the tissues will swell.Has ANYONE had this experience? Any information would be greatly appreciated.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi, and welcomed to the site. Sorry about your husbands diagnosis, but glad you found your way here. There are many people on here with the same condition as your husband. I had tonsil cancer so my situation is quite a bit different as far as treatment. I did have radiation and chemo and did pretty good through both. Just hang on and someone will help you more than I can.

Best,
Steve

Keith P
Posts: 2
Joined: Sep 2010

Hi Steve,

Diagnosed with Tonsil cancer 4 weeks ago, got a 2nd and 3rd opinion, and after a battery of tests I am starting treatment tomorrow, a 7 week concurrent chemo and radiation thearpy. three rounds of chemo every 3 weeks, and daily (M-F) radiation. Sounds like you're done and on the other side. I look forward to getting there too. Any initial tips as I begin from your experiecne would be most appreciated.

Thanks,
Keith

TBOB
Posts: 19
Joined: Sep 2010

DEAR KEITH,
BEST OF LUCK TO YOU TOMORROW AND SO ON. HOPE TO SEE YOU ON THE OTHER SIDE TOO! KEEP US NEW PERSONS POSTED. NEED ALL THE INFO AND HEPLFUL HINTS!!!
KEEPING MY FINGERS CROSSED,
TBOB

Keith P
Posts: 2
Joined: Sep 2010

I'm not a Dr. but really believe a thorough diagnosis is important before treatment protocol is prescribed. By my 3rd opinion, I was working with the head of the Head, Neck and Throat Cancer Center in the major hospital near where I live. His approach was the following: Biopsy my tonsil that was obviously effcted, then CT scan my neck, then head, then MRI my head and PET scan my entire body. This was to see if the cancer was anywhere else. Thank God it's not. They then did a Triple Endoscopy to look very thoroghly in my throat to see if there was other places where the cancer might be hiding, again luckily not. Once all this was done, the surgen, chemotherapy and radiation oncologists all met, reviewed my case, and agreed on the best course of action. No surgery, 7 weeks concurrent chemo and radiation. Although my case is different than yours, the thorough diagnostics and team approach to treatment made me feel I was in good hands.

TBOB
Posts: 19
Joined: Sep 2010

DEAR STEVE ET AL
tHANK YOU FOR RESPONDING. WASN'T QUITE SURE HOW TO USE THIS SITE HAVE NEVER SPOKEN IN "CYBER SPACE" BEFORE.I FEEL LIKE AN ALIEN!i'M HANGING ON....

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

My DX and RX was similar to Steve. I had the tonsils removed surgically up front. I also had a tumor (lymhp node) in addition. Right Tonsil SCC STG III HPV+ and a lyhmp node.

I also had nine weeks of chemo, then seven weeks of concurrent chemo/radiation. They opted not to remove the tumor surgically seeing what effect the chemo/radiation would have first. The tumor was close to the carotid artery so the hopes was that it would shrink or dissolve allowing for either a less evasive surgery or no surgery.

After the second round of chemo, the tumor had shrank noticbly and by the last round of chemo but before the first rounds of concurrent, the tumor was gone and this was confirmed with a CT.

As Steven mentioned, someone with a DX similar to your husbands will chime in and give you better experiences and details of their particulars.

Stay connected and many answers an experience will be provided from the many members here.

Best,
John

rush1958's picture
rush1958
Posts: 201
Joined: Jul 2010

I am a BOT diagnosis patient. I had both a biopsy and surgery.

The biopsy was to try and determine the primary site. They took out my tonsils during this procedure.

About three weeks later I had surgery to remove the BOT cancer. I was in the hospital for four days and everything seemed to go according to Hoyle. I did not need a trache and left the hospital with the ability to breathe and swallow intact.

About four weeks later I began radiation and chemo. In my experience, I thought the surgery was the easiest part of the whole ordeal.

Just remember, everyones experience is different. What was easy for one group of people may not be easy for another.

A case in point: The feeding tube. Virtually everyone talks about this procedure as being something that isn't a big deal and is pretty much painless. For me, it was the most miserable experience of the whole treatment process. It hurt to have it put in, completely debilitated me for two weeks after and then was a constant source of irritation until it was removed. To top it all off, I never needed to use the thing throughout treatment. My throat never really got sore and I could always swallow, but most people have the opposite experience.

Rush

Noellesmom
Posts: 1317
Joined: Aug 2010

Sounds like you gave been given conflicting professional opinions. Unfortunately, this means your husband has decisions to make. talk to both doctors again and go over their recommendations. They should be able to reach a consensus on the best approach for your husband's prognosis and treatment.

My husband has hypopharyngeal and BOT cancer and has had chemo and radiation : the oncologists will check in a couple of months with a PET scan to see if there is any tumor left to remove.

Best wishes for you and your husband. You are not alone as long as you have people here on this site at your access.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hi, Sorry you and your husband had to join this fraternity; but welcome. I have found it a comforting port in this crazy storm. Everyone has been tremendously helpful to me! Though I am tonsil and your husband is BOT it's all pretty much the same game. First you should push the doctors to test the tumors for HPV 16 which seems to be the common culprit that has brought us here. As far a surgery vs no surgery it just depends on where you goto for treatment. My ENT surgeon said that in the 80 and 90 it was common to have surgery then what ever was left chemo/rads. Then in the 2000's physicians where trying to save people the side effects of surgery and just try to melt/blast the cancer away. But my surgeon said the pendulum is swinging back to surgery. I'm a registered nurse an i had the surgery. I feel that if it's a operable/removable cancer remover it. Just like if it was a strange mole that may turn in to cancer you cut it out. So I opted for the works surgery/radiation/chemo! That way I can at least say I did everything I could! Good Luck!
Charles

MarineE5
Posts: 762
Joined: Dec 2005

TBOB,

First let me say that I am sorry that your husband has BOT cancer, but I am glad you found your way here. There are many good people here to walk along this path with you and your husband. As suggested above, speak with both sets of Doctors again, ask questions and write them down. A lot of information gets thrown at you and your head starts spinning and aches afterwards with all of this.

Like your husband, I had BOT cancer. I was given 3 options by my Surgeon. 1- No surgery, radiation and possibly chemo. 2- Laparoscopic surgery to remove the tumor on the BOT, followed by radiation and possible chemo. 3- Surgery to remove the tumor on the tongue, removing part of the tongue, a neck disection,Peg tube, trach, and followed by radiation and possible chemo.

I chose option 2. Went in for the Laparoscopic surgery as I wanted the tumor out of me. It didn't work as the Surgeon was unable to move the instruments around properly to remove the tumor. Spoke with the Surgeon again and I chose option 3. I wanted the tumor taken out, just my thoughts. He informed me that I had a chance that I might be on the Peg Tube for the rest of my life and I might have trouble speaking also. I said, I still wanted the tumor removed.

The Surgeon removed part of my tongue, but I can eat and am not on the Peg Tube, I do have difficulty with some foods, so I stay away from them. My voice is the same as it was before the cancer. The first year, I did talk with a raspy voice, but it has returned close to normal. When I speak, I have trouble with some words.

I had the Radical Neck Disection, Trach, Peg tube, part of my Tongue removed, followed by radiation. The Surgeon and Radiation Oncologist wanted the Chemo to be a safety net for me if the cancer came back. The surgery was done nearly 6 years ago now.

My Best to Both of You and Everyone Here

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

I agree, take a note pad and write you questions down now and take them with you.

I also suggest you take a third person outside the immediate family. They cab take notes and help you recall the conversation you have with doctors. We always took a third person and it was a huge help.

Believe in your doctor's. If you have doubt about them find some that you have confidence in. They as a team should agree to treatment.

So many are going thru now and have gone thru with huge success. CSN is help you add to that success.

Prayers for the Doctor's to use their knowledge and experience to point you in the correct direction, more prays for you and your family for patience over the next couple months as you go forward to win your war against cancer.

John

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

Hi, sorry to see you here but welcome. Here you will join a select group of actula people with diagnosed Head and Neck Cancers, not a bunch of statistics grouped together. I was diagnosed with Cancer of the Right Tonsil that spead to just near the base of Tongue and up into parts of my soft pallate. I had Mets to 21 nodes of which 19 tested positive. I also was tested positive for HPV 16. I was diagnosed stage 4 1B but after 2 surgeries was restaged stage 4 2B. Because of this my doctor is hesitand to put a number or a % regarding my reoccurance or survival.
I found that if you seek treatment from an NCI rated facility, (National Cancer Institute) they tend to recommend surgery first and then Radiation and Chemo as an option. Due to the aggressive nature of my cancer, the amount of tumors and the size of the tumors, we have decided to do the surgery, have 30 sessions of Radiation to both sides of my neck and to have 3 sessions of Chemo. In short, we are "throwing the book" at it up front. I will most likely pay the price with severe side effects but hope to rid myself of this beast for good.

Like everyone says here, treatment options vary between Physicians and Medical Institutions, but you and only you must feel comfortable with the treatment options offered to you.

If you have any questions and or doubts, start a thread here and you will most likely find at least several people who have been through exactly what you are about to go through.

BEST!!

Mike

train-nut
Posts: 101
Joined: Jun 2008

great information provided by earlier posters. No matter your tratment plan I suggest:

* Talk with the nurses and trust what they say. They are a godsend.
* Stay hydrated. Water is your new best friend.
* This isn't a joy-ride but you can and will be cancer free soon. Stay positive.

And a request: let us know how you're doing and if there is anything we can do.

I wish one and all the best of health, Rich

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Standard procedure to get the Biopsy- to make certain it is C, and not something else. And, of course the Pet Scan- which determines how much C there is, and where, AND WHAT TREATMENT your husband will get. Typically:
1) needle biopsy of any tumor
2) surgical biopsy of any tumor
3) Pet Scan, followed by a Cat Scan
4) Only then can the ENT, Onco and Rad get together with the course of treatment- because only then will they know what treatment is needed, and where-all the C is.

Chemo and Rads are critical. Not sure, though, about the trache, if it is BOT. Tongue is quite a ways from the base of the tongue, and it seems most BOT do not have traches installed. You might want to get another opinion on the need for a trache. First ENT I went to said the trache would be the first thing he'd do. I then got a 2nd opinion, and a new ENT- trache wasn't necessary, and I didn't get one. Swallowing is the typical problem- not breathing- unless the C is in the windpipe/larynx.

kcass

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

TBOB,
I am so sorry that your husband is having to walk this path, but I hope the collected experience of this forum can help you and him along all the way to his healing.

I also had BOT cancer. Isn't the real question to do surgery first or not based on having metastases? You didn't mention if that is true in your case. We did not elect to do surgery first on me since I had so many mets to lymph nodes that surgery would be too involved. The logic was to see how far we could reduce them down with rad/chemo before a surgery consideration. Turns out, we reduced them to nothing, except for one lymph node that was outside the treatment field. That one was surgically plucked out and I have had NED for three years now.

The biopsy is different. It would seem to me that you need to know what kind of cells you are dealing with to know what kind of radiation and chemo is needed. But that procedure does not have to be a big deal.

This sort of sounds like your first opinion from the Onc and OMF. You have to remember when you talk to surgeons, don't be surprised they tend advise to cut. That is what they know.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I wanted to add my welcome. My cancer was confined to a single vocal cord, so my experience does not translate well to BOT. I think the advice you received here is excellent, as always. Take care; you and your husband will get through this. Rick.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Kieth and TBOB,

See I told you how much the people here are willing to help. I had radical right side neck dissection, Tonsillectomy, lymph nodes removed, 6 teeth pulled, complete serious cleaning of my teeth, implants and new bridge installed. Then 2 weeks later started radiation and chemo. 6 weekly cisplatin and 5FU,(Florouracil), and 33 daily rad treatments. I am 5 months out and am doing great!! So know that this is doable and highly curable. Prayers will be with you both.

Best,
Steve

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

Sorry you're here. I also was diagnosed BOT stage 4. Surgery was considered in my case, but not recommended (and this came from the surgeon!!). Their reasoning was after surgery I wouldn't be able to ever talk again and would probably need to use the feeding tube forever. It was more a quality of life decision for us. The recommendation was to go with the combination of radiation and chemo (cistplatin). I had a 7 week treatment of 35 rads and 3 chemos (1 every 3 weeks). I am 5 weeks out now and thngs are looking good so far. I feel better with each passing week and the doctors are optimistic about the results from the treatment. Of course they won't really know until I have my post tx scan in another 8 weeks.

As others have mentioned, if you're not comfortable with your MD's or their recommendations, by all means seek out a 2nd/3rd opinion. It is important to believe in your medical team. Some folks have undergone the same treatment as I and had a rather difficult time of it. Fortunately for me, I wasn't one of those, my treatment was relatively easier. Everyone is different. Cheers

Jimbo

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I too would just like to welcome you here to CSN, we are a group of people who have one common goal and that is to help others through there journey in become survivors

All the best to both of you
Hondo

rozaroo
Posts: 667
Joined: Apr 2010

TBOB all of the people on CSN are wonderfull, when I joined this site it was like turning
on a light! Just by reading the post's I understood more of what my treatment involved &
everyone here has such a positive attitude so when I felt depressed I would come here &
feel so much better. Everything happened so quickly & I had no time to think about what I
was about to go through. I was lucky to have the best care from my hubby & truly feel for
anyone that has to go through this journey alone.
I wish you both all my best through treatment & recovery.
Hugg's Roz

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

There are very helpful, caring people here and you will get a lot of support and first-hand knowledge.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad finished treatment about 2 months ago for base of tongue cancer. He did not have surgery, because they felt it would be too involved. He had radiation 5 days a week and chemo once a week. He did have lympe node invlovement. He just had his first scan post treatment and everything looked great.

I would never hesitate to ask questions. At first I did not ask questions, but after reading things here I learned that asking the doctors questions is the way to feel better about things. Also, never hesitate to post on this site. They are so helpful and you will start to feel like part of a great large family.

Pumakitty

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

I had tongue cancer but it was on the side of my tongue and that was 10 years ago. It spread to my neck so I was around a stage 4. They took off 1/4 of my tongue and after treatments went back to college. I also had radiation and surgery. As for me I went for a second opinion in the beginning just to be sure. Before he has anything done go see a dentist hopefully one who has worked with people with oral cancer. Oral care is so important during and especially after treatments. I'm sorry to hear about your husband. It is very hard, I was only 21 when I was diagnosed. If you ever need anything you can email me iloveev@hotmail.com

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