Hi everyone, I have an urgent question, I hope someone can help me. I posted some messages with regards to my husband tongue cancer. He just diagnosed two weeks ago with T2 tongue cancer, the doctor took the tumor out already, however, without too much security margin. We had our first consultation last week, the doctor will do another surgery to take the lymph nodes out, as well as tongue reconstruction. But my husband, he is 50+ is seriously in two minds now, he is concerned the quality of life after the operation because it does sound horrible and scary.
Does anybody know any cases of people didn't take the operation at all? What could happen? And how many years he has? Thank you

Hi Honeybee

I had the same operation as your husband is facing just over two and half years ago, except all my surgery was completed in one twelve hour operation.

The surgery does sound pretty horrible and scary and can take a little time to recover from, but as I have mentioned in my previous posts, the reconstruction can also leave you with a good quality of life in terms of speech and eating etc.

I felt that I really didn't have a choice at the time if I wanted to stay alive. Although sometimes I wonder if it would have made any difference if I had refused the radiotherapy as it was only given as a precautionary measure after the surgery. Again I just wasn't prepared to take the risk of not having it.

Hope this helps - best wishes for your husband's surgery should he decide to go through with it.

Wendy

Hi Honeybee,

I didn't have your husband's form of oral cancer so I can't be of much help but 50+ is still pretty darn young in the 21st century.

What could happen? He'll most likely die younger than he would with the operation. And how many years he has? No one knows. Those are questions you should be asking his doctors.

We have a board member, Sharifah, who has a blog you might find inspirational. She is a wife and mom of 2 teen boys and is a grade school teacher although she is missing a good portion of her tongue. On the right side of her blog under My Cancer Warriors, click on "Beyond the Glass Door." Lots of information there. In addition, there's John Spencer, Haag and Julia who have posted brilliantly on this board. Find their posts.

Sharifeh's Blog

As both a patient and a care giver, I think the latter is more difficult. Best of luck to you.

Mimi

Good Morning Honeybee,
Take note of what Miller and Mimi have to say, they have been there and know just how scarey and horrible this all sounds and non of us will pretend that the treatment is fun because it isn't. But we all had the treatment as prescribed by the professionals and now we thank God that there are people who can carry out this work because without them we would be dead but as it is we are living pretty normal lives because we listened to the experts.
As Mimi says fifty plus is not old, I mentioned earlier that I was sixty eight and in poor health when I had the first cancer operation, I have had three more cancers removed since then and I have been told there could be more, If that is the case I will have the treatment as recommended because I enjoy the life that I have.
The only people who can answer your final question are the professionals who are familiar with,and understand,your husband's case and it would be a mistake to ignore their advice.
Honeybee, I am sorry to sound brutal but cancer is a brutal business and delay is cancer's best friend so putting off the decision for a while will result in the necessary treatment becoming more drastic on an exponential scale.
Keep Smiling
John

Miller, Mimi and John, thank you so very much for your replies. I agree with you guys, I truly believe that my husband should go. He is in two minds now because he has less pain and can chew a bit and very active, he is scared that after the operation, all of these will gone. Well.... I know it's gone for a while, a while ONLY, but for good. I will ask as many questions as possible before the operation, and encourage his to go for it.

God bless you all.
Honeybee

Good afternoon Honeybee,
There will be many questions buzzing around in your mind, it is a good idea to write them down now and as you think of more write them down at the time, and get your husband to do the same.When you go to the meeting don't be put off, if you do not get an answer ask again.Take a pad and pen and write down the answers. I still follow this procedure after more than fifty visits (over seven years) to the oncology clinic.
Keep Smiling
John

Hi Honeybee
I had the same procedure as your husband (all done on one day) seven years ago at the age of 51. I think I was in too much shock to consider whether or not to have the surgery - I just thought this was the only way to survive so I put complete faith in my consultant.

Yes, it is scary and it had quite an impact on my life for quite a while - though most of my problems were due to the radiotherapy, not the surgery.

The dry mouth improves over time, though I still need to drink lots with food and always carry water. My food choices are more limited but everyone is different, some people find they can still eat most of the things they did before.

I was given the all clear after 5 years and now my general health and quality of life is good. Oh, and I can talk on the phone for hours so it's not affected my voice too much!

Hope everything goes well for your husband, whatever he decides, and remmeber there are lots of people here on the forum who are willing to offer support and advice. This forum has been an absolute God-send to me, everyone is so kind and helpful.

Sheila

Hi Honeybee

Cancer is scary as hell whatever your age. I was 40 when I was diagnosed, and I was absolutely freaked out--partially because I was expecting the worst, partially because we lost my paternal grandfather to throat cancer a year before I was born. But I digress. If multiple procedures had been suggested, I'd probably be reacting like your husband. Like Miller, John and Sheila have said, my operation was done in a one-day surgical marathon. It's GOT to be less traumatic than going in several times.

After 6 and a half years, everything's well: I can eat anything I like and I sound like I did before. The best part is that I didn't need RT or chemo.

You're not alone in this.

Julia (and Flappy)

We will have another meeting tomorrow with surgical team,I will ask all the questions I have written down. Thanks John to remind me not to be put off, the docs like to do that here. Thanks Mimi to recommend blog, I will read it, thanks Julia to share your story. Did you guys have to have trachy? How long did you carry it?

I was trached for about a month. No one bothered to tell me how icky it would be. You might want to invest in some "v-neck" undershirts for him to wear. You'll need to bleach the heck out of them when you do laundry. Trust me.

Is your husband going to have a feeding tube? Another unpleasant necessity, and when you flush it clean with water after "meals," it's almost a ticklish feeling.

Julia

This message has been edited. Last edited by: Julia,

Hi Honeybee

I had a trachy in for only five days after the op as I had very little swelling. I can honestly say that I found the tracheotomy the worst part of it all in terms of discomfort and felt that I was really progressing when it was removed. I was discharged from hospital the following day. So as you can see we are all different in terms of recovery etc.

All the best for your meeting.

Wendy

Hi everyone! We are back from the meeting. To be honest, we are a bit at ease this time compare to the first scary time. Yes, my husband has decided to go gor the operation! The doctor will do the reconstructions, remove lymph nodes as well as the saliva glands.(but he said that not the major ones, he can hardly feel the difference) well... I am not sure but I hope so. He will be in the hospital for about a month until they remove the trachie. Then again, it all depends how fast he can recover from it. Feeding tube is going through the nose instead of his tummy, the doc said is less risky in term of infection, bleeding and all that sort of thing. The operation will be in 20 days time, so far, no spreading, healing well, he can chew, swallow and eat well in fact.

I thank everyone again for all the experience you kindly shared with me, most appreciated! I will keep post

Hi Honeybee

I'm really glad that we were able to help you.

The left floor of my mouth was removed during my surgery (not because of cancer but to provide access to my tongue), so those salivary glands went bye bye as well. I've had no trouble with dry mouth; for a while it felt like the remaining glands were going out of their way to make up for their fallen comrades.

I'm glad that his doctor opted for an ng tube rather than a peg--your husband really doesn't need another surgery.

Julia

Hi Honeybee,
I'm glad your husband has decided to go for the surgery as we all know what the consequences could be.
If it's any consolation, I had 3 invasive surgeries, lasting a total of 31 hours, 6 weeks of chemo and radio therapy, a feeding peg and a trachea - the works in other words!
That was 3 years ago and I am now leading a more or less normal life, and as my waistline proves, I can eat just about anything!! I have substantial scarring and a slight speech impediment, but it's a small price to pay for still being here.
Wishing you lots of luck and please feel free to ask about anything you're worried about. As you already know, there are some brilliant people on here who are always ready to listen and give words of advice whenever you need them.
All the best,
Dian xx