Surgeon canceled tongue surgery in middle of surgery--now what?

Wow.......

Not sure how to answer. Are you going to a "local" doctor, or to a major cancer center like MD Anderson, Uc hospital, ETC. Have you ever had a secomd opinion? From my knowledge of SCC it is not really fast growing. Mine tool around one year to get to 3cm x 2.5cm. Mine was Supraglottic SCC, [just above voice cords ] in my larynx. You might want a second opinion. Did they do a PET/CT? 

There are several on here that were BOT and they will have more questions and answers. Something sounds off, and he might be over his head with this. To go from half to all in three weeks justs sounds wrong. My thoughts and prayers are with you.

Bill  10.2013

Carolinagal4 said:

Thanks for your replies.
Hi

Thanks for your replies.

Hi Bill, yes it is the best renamed hospital in my area-Duke University Hospital and Duke Cancer Center.  I am really worried about how fast it has grown.  They did a Ct/PET scan 3 weeks ago And from scans thought that they would only have to take less than half of tongue--which still would produce a good quality of life.  my pain has accelerated a lot over the last 3 weeks and I worried that meant it was growing--doctors said that this was typically slow growing and plus they didn't have a surgical opening any earlier.  But yes, it makes me wonder about growth rate.

MrsBD--glad to hear that radiation/chemo worked for you--or is working! My cancer is on the side of the oral tongue, not base of tongue (non-smoker, HPV negative)--but it sounds like the same comment that they told me today--with the amount of tongue that they would remove it would be devastating.

 

thanks for your feedback and prayers!

CC

Just stay positive..............

Having good docters [as you do] can really help, but staying positive and getting an attitude really does help. My doctors and nurse's all told my that my good attitude is what made my recoery go so well. My prayers didn't hurt ether.

There has been many on here over the time I have been here that did not have surgery and are doing great and all were told they are NED [No Evedance of Disease ]. You can beat this. It will be rough at times so just take one day at a time and the really bad ones. Just houre by houre and know you can do this. And it is so important to drink and swallow to keep that working, you must stay hydrated. Remember you are not alone as you can see in the responces...........

Bill  2013

Carolinagal4 said:

Thanks for your replies.
Hi

Thanks for your replies.

Hi Bill, yes it is the best renamed hospital in my area-Duke University Hospital and Duke Cancer Center.  I am really worried about how fast it has grown.  They did a Ct/PET scan 3 weeks ago And from scans thought that they would only have to take less than half of tongue--which still would produce a good quality of life.  my pain has accelerated a lot over the last 3 weeks and I worried that meant it was growing--doctors said that this was typically slow growing and plus they didn't have a surgical opening any earlier.  But yes, it makes me wonder about growth rate.

MrsBD--glad to hear that radiation/chemo worked for you--or is working! My cancer is on the side of the oral tongue, not base of tongue (non-smoker, HPV negative)--but it sounds like the same comment that they told me today--with the amount of tongue that they would remove it would be devastating.

 

thanks for your feedback and prayers!

CC

Too Much

I was surprised to read that your surgeon had planned on doing a neck dissection during the same surgery on your tongue.  IMO, that is too much trauma for someone to take.  At least that's what my doctor said.  And after having part of my tongue lasered off I couldn't imagine having to deal with a neck dissection too.  Unless your neck surgery wasn't going to be very invasive.

 

So it's just as well you didn't have the tongue surgery.

 

Good luck with the chemo/rad treatment.

 

Tom

Carolinagal4 said:

Thanks Grandmax, Bill, Candi

Thanks Grandmax, Bill, Candi and Tom,

yes, I am really beside myself with worry but I have to believe the surgeon made the right call if the cancer has spread that much through my tongue--of course, I'm just shocked to hear that is the situation. I do believe in keeping a positive attitude and I really have to in order to get through this--I just have to get a handle on the fear. Prayers and hearing how good folks like you all have made it through are a big help.

Tom, as to your comment about the neck dissection--I don't think I fully comprehended how big the intended surgery was going to be before now. I didn't really have much of anything done with the surgery--but they did have me fully under and did put in a trach (which they took out at the end) and just thinking how I feel from all of that--wow, the intended surgery would be so much more.

i meet with my doctors in a series of appointments this week to map out chemo and radiation plans. I'm really hoping to be one of those folks posting about NED results next year!

CC

At this point...........

At this point you will have some questions for the doctor. Please take someone with you as more ears do help. Write down your questions and leave room for the answers then hand it to the doctor. Hi will say or answer a question and you will go blank, I did. So I wrote them down and handed it to him and he even wrote the answers in for me and explained each one. 

Bill

Radiation and Chemo before Surgery

I fit into this category as my Tongue Cancer tumor was so large the only surgical option before treatement was to remove the entire tongue and voice box.  Not what I wanted to hear at 34 years old.

I went through 46 Radiation treatments with 10 simulaneous chemos that were supposed to be weekly, but ended up take a few extra months because of blood counts.  It is possible to do this, it is a hard road, but doable.

I ended up having surgery after treatment and recovery wasn't too bad.  I was able to start eating by mouth about 3 1/2 weeks after surgery and was off the feeding tube after 2 months post surgery.

I am now 15+ years of being NED and even with the side effects of treatment and surgery, I am still alive living my new "normal".

Carolinagal4 said:

Thank you for the prayers and

Thank you for the prayers and encouragement. I have just finished my first week of treatment (7 weeks of radiation with concurrent chemo, cisplatin, on weeks 1 and 5). I am having a rough time this weekend--not been able to hold much down. My cancer center is one that does not tend to put the feeding tube in as often, so I don't have that. It's looking like a long road right now.

YOU CAN DO THIS...Now repeat after me............ Yes I can!

CC it is hard and having a bad weekend you did the right thing. You came here and shaired with us. Now you know what you have to do. Drink lots of water, crushed Ice helps. Eat junk food if that is what you can get down. Jello is a win, win, it also counts as liquid. Pudding can slide down good as well. Stay hydrated and just take one day at a time, some days it's hour by hour. But most of all....NEVER GIVE UP, the reward at the end of this rough road is such a wonderful word....... NED. You can and will do this.

Bill

Your are in my prayers

I'm so sorry to hear about your condition. I was diagnosed with base of tongue cancer in 1996 and treated with surgery and radiation. That can be very frustration news and I hope the groth with shrink so the surgey can go as planned before. I will be more than happy to share my experiences and some tools to help your family through this time. If you want to have more information regarding this, feel free to contact me. Best of luck