SCC at base of Tongue

I also was 46 years old when diagnosed, although for a different cancer (nasopharyngeal – behind the nose). Three years later, I am doing pretty well. Make sure you are seen by oncologists with experience, working at a big cancer center, makes a big difference in terms of treatment plan and outcome. Be prepared to take notes during meeting with doctors, and even better if someone can accompany you, to do that. As you move along with the treatment plan, feel free to ask questions on this forum; many went through treatment for the same cancer you have, and might be able to provide suggestions that doctors or nurses might know, but not necessarily share with you when needed.

Hi Dave -

My brother has finished treatment over a year ago - sounds very similar to your condition.  In my opinion, the only thing I wish we had done differently is going to a major cancer center for a treatment plan.  Please take the time to do that if you do not live in a major metropolitan area.  He is cancer free but still managing the effects of radiation on his jaw.  Best of luck to you!

internet home....you have found a great place to ask questions, get tips and tricks for getting through treatment, and vent or just talk.  Everybody you hear from on this forum came in scared to death....that come with the territory of hearing the dreaded "c word".  Took me weeks to be able to put the word cancer and my name in the same sentence....they just didn't go together.  A lot of us didn't have a clue anything was amiss, until we got a lump on our necks....

Treatment can be rough....but it's temporary.  I'm three years out at the end of this month, and my life is pretty much as normal as it ever was. 

Stick close to this board, and understand that there is no question that is off limits. 

p 

wmc said:

Welcome to the H&N Group

Welcome Dave and sorry you need to be here. However, you won't find any place better. Marble is better than most are so that means it was found early. It is a rough road to go down, but many have been down it before and we will all help as we can. Mine was just above vocial cords 3cc x2.5 cc T3;N0; M0 and they thought it was a T4; N2 before surgery so I got lucky and it was not as bad as they thought. You might want to start putting on some extra pounds and drink lots of water and swallow all through treatment. Keep swallowing is very important as you can forget how to. Will add you to my prayer list and keep you and your family in my thoughts. You are not alone.

Bill

Sorry for the loss of your Mother. I lost my Mom last October. You can beat this! I will keep you in my prayers.

Candi

Hi Dave,

Welcome to the H&N forum, so sorry you are here, but we have walked (metaphorically) in your shoes and can relate to your condition.

There is a bunch to learn but you will catch on easy.  I am sure you have questions, so ask away.

Don’t forget, check out the Superthread.

Matt

Dave45042 said:

1st Dr. Appt

The new Dr. canceled any surgery, he is doing a biopsy of the tumor and then Radiation and Chemo to try and fight it, if that doesn't work then surgery and more rediation and chemo, does that sound about right, its not a big cancer center, I live in the middle between Cincinnati and Dayton Ohio this Dr. is out of Cincinnati, should I seek a bigger place, travel would be a hardship & burden on my family, I feel I will be a big enough burden already.  Thank you for the great big welcome everyone

Dave,

As you read many of the posts, you will find that not all patients had the exact procedure done on them. Some of us had Surgery first, followed by Radiation and Chemo, some Surgery with only radiation to follow. Others had only Chemo and Radiation to treat their issues. Others had the Rad's and Chemo first, then they had Surgery. The end result is to rid the patient of the cancer.

With that said, you as the patient should feel comfortable with your decision and how comfortable you are with your Doctor(s). As you posted, your new Doctor canceled any surgery and will schedule Chemo and Radiation as your treatment plan. Many here have done this and are doing just fine.

I was given the same option, but in my mind, I wanted the tumor out completely and had the Surgery to remove it, and part of my tongue as I had Base of Tongue cancer. With my choice came some other issues that I deal with daily. I only had Radiation as the follow up  and Chemo was held as a back-up in the event I had reoccurance which did not happen.

As another survivor posted many years ago after he visited 4 different Doctors and all had a different approach. He finally asked the last Doctor how come so many different ways? The Doctor gave him the example of a Baker, each have the same ingredients, they each add the ingredients at different times to get the end result of a baked cake.

Do what suits your needs the best, my one neighbor was treated locally for tonsil cancer and he is an 18 year survivor. I traveled to the city which wasn't too awful far away because my local ENT knew the Surgeon and I am nearing my 11 year mark, both of us are fine. He had surgery followed by radiation only like I had.

My Best to You and Everyone Here

Dave45042 said:

thanks

Thanks for that info, I also want the tumor out of me, I will have to check on what options my Dr. will go for and if not satisfied find a new one.  As I first stated my mother had the radiation and chemo first and it didnt help, then they removed the tumor but it grew back within weeks.  I would have a better peice of mind with the tumor removed and then follow up treatments.

welcome to the site no one wants to need, but if needed is the greatest site to help you get thru this which you will.  Sorry about your mother.  I had Base of Tongue, Chemo 33 rads, no feeding tube, I was DX in March 2012.  As the others have said there is no place better than this site to get information, and as we all have learned stay away from DR. GOOGLE, most of the information is out dated and does not make sense or can just scare you.  The one thing I would tell you is do not over rush things, take your time and seek out you best options.  Myself and others were frustrated with what seemed like forever to get the process started.  For me it was about 60 days from being DX and to starting treatment.  In reality that is not unusual, so time is not your enemy at this point so discuss all your options with your team (I say team because many have the ENT, Radiologist, and Oncologist working as a team to plan out your treatment)  Either way it is a rough course to follow but as others have said doable and we will be here 24/7.

rhondap45042 said:

Dave45042

Marine,

 

   Can I ask what are the daily issues you face because of your decision?  I am Dave's wife and we want to get very educated and base our decision on knowledge.  The end result is we just want to Dave to be healthy but want to know the pros and cons of everything.

Hi,

I just saw your post and we are about to eat, so I will reply tonight in a bit, but it will be thru the e-mail system here on this site. I type slow and it might get a little long as I sometimes ramble, but as I mentioned, I will reply tonight.

My Best to Both of You and Everyone Here

rhondap45042 said:

Pain Meds

So apparently, pain is a big issue with Dave's throat.  Dr's do not readily give out pain pills.  Just wondered what you guys all get for pain?

Glad you joined our group also.  There will be times that you will need support.  You asked about pain meds.  I found that the cancer doctors had no problem giving prescriptions for pain and nausea meds.  For awhile my medicine area looked like a druggie!  I haven't heard of one person on the forum getting addicted.  When the time comes you just don't stop some meds, you have to get a smaller dose until you are off.  Pain meds play havoc with bowels, make sure he is taking a stool softener or you will have another problem to deal with.  Take care of yourself also, you won't be able to take care of your husband if you get sick.

Dave45042 said:

1st Dr. Appt

The new Dr. canceled any surgery, he is doing a biopsy of the tumor and then Radiation and Chemo to try and fight it, if that doesn't work then surgery and more rediation and chemo, does that sound about right, its not a big cancer center, I live in the middle between Cincinnati and Dayton Ohio this Dr. is out of Cincinnati, should I seek a bigger place, travel would be a hardship & burden on my family, I feel I will be a big enough burden already.  Thank you for the great big welcome everyone

hi dave.  i was treated at the Barrett Center in cincinnati as i live in cinti.  when i had radiation, i had it done in a very small place as that is where i was refered.  i did not know about this site so therefore, i went throguh tx not knowing anything or that i had options.  i'm glad you will be more knowledgable as you take this journey.  if i can help you get through this, please let me know.  i will be praying for you and your family.

God bless you,

dj