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Operation on 26th July/Scared now

colinc1
Posts: 14
Joined: Jun 2010

Sorry, i was meaning to put this in my original thread, instead of starting a new one,but cannot not find it.

Only a few more days before my op,and i am stressing with fear that i may die on the table.

I was told by the doctors that the tumor under my tongue is about 4cm long and stage 2

So what does stage 2 mean?? good - bad - in between??

I was told they hope to cut it all out and then take a skin graft from my wrist to fill the hole,and have a tracheotomy for a few day, in what they say will be an 8 hr plus operation, in which they will do biopsies in other areas.

And then radiotherapy,and speech therapy.

So how risky is this op, and expected recovery time

Thanks in advance

Colin

MarineE5
Posts: 746
Joined: Dec 2005

Good Morning Colin,

First, let me say that I'm sorry that you have to walk this path, but you have come to a good place for help with your questions. There are many people here that have travelled the same path you are about to take.

I am a Base of Tongue cancer survivor of 5yrs and 8 months currently. Yes, I can understand how you feel at the moment. In 4 days your life will be in your Doctor's hands and hopefully they will rid your body of the tumor.

Staging is a science and Stage 2 is in between, but can easily move to stage 3. Allot depends on the number and size of any Lymphnodes around your neck that might be effected.

http://www.oralcancerfoundation.org/cdc/cdc_chapter5.htm

Using the information at the site I have here, you would be listed as such T2NOMO

You asked about recovery time, that is a good question, and you will see by reading some of the prior posts that each of us recover differently. Some people have very few side effects to the surgery and treatments and others have a rough time of it. I was never in any real pain, but I was uncomfortable at times.

Your path and mine are similar, it won't be a walk in the park, but you can do this. The Doctors will try to make you comfortable and help with pain meds when you need them. After the surgery, you will need to relax for a few days and then start taking short walks around your neighborhood to build your strength back up. You will need to sleep sitting up or at least in a inclined position while you have the trach.

The Radiation will follow after you are out of surgery for at least 6 weeks to allow for healing of the tissue before the treatments start. Ask your questions and we will try to answer them for you. Take a deep breath, try to think of good thoughts and you WILL get through this. The next few months will be a little bumpy and your daily routine will not be the same as it has been, but you will adjust to the new routine.

My Best to You and Everyone Here

Oh, I have a cousin that is over at the South Island of New Zealand and he just finished his radiation last week and is doing good.

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

Hi Colin,

I agree with E5. You know, at first with me everything was moving so fast it never did sink in that I actually was very sick. Not until I was on that gurney getting ready to go in to get my peg and port installed did I realize that my doctors and God were in control now, and I cried, really cried for the 1st time. I am 4 months post treatment now, my peg has been removed and while I am not who I used to be I am alive and doing pretty good.
For that I am thankful to my team of docs and most importantly God. I improve now daily and feel truly blessed. So hang in there stay strong because you can do this. My thoughts and prayers are with you.

Best,
Steve

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Firstly, you are not alone. You are now among an army of survivors who have been where you are: scared and lacking information. We are all here for each other.

What I find most surprising about your post is that the questions you ask, your Dr ought to have already addressed. I am shocked that these fundamental questions which could give you some context to your illness and therefore perhaps some calm, have been left to you to discover in some other way. It's shameful. I'd love the name and telephone number of your Dr so I can set him/her straight.

Your questions:

"So what does stage 2 mean?" - Breathe easy. Stage 2 cancer means that your malignancy is limited to local advancement. It means you do not have any metastasis and that, my friend, is the best news you can get. In other words they can treat it locally. You will probably avoid chemo but perhaps not radiation (and re-reading your post I see you are scheduled for radiation). I was stage 4 (out of 4) because I had metastasis in the lymph chain in my throat (not good news, prognostically speaking) and got the full Monty. I am now in recovery and have a good chance of long term, disease free survival.

"So how risky is this op, and expected recovery time?" - Again I am stunned that you don't know the answer to this - your Dr needs to be spanked. Risk is dependent on a lot of factors I cannot know, like your general health and age, for example. If you are young-ish (under 70), in reasonably good health (can climb a flight of stairs without passing out), and, perhaps most importantly, have a positive attitude, you'll do fine.

Recovery time is also context dependent. It all depends on so many factors it's a bit unreasonable for anyone other than you and your Dr to say. Are you a fighter? Do you generally recover from illness quickly? Bottom line with your questions is to get on the phone with your Drs and ask them these questions, after you chew them out.

Radiation can be difficult in cases where the tumor is unknown, compared to a known primary (like you have). The target volume for the rads will be smaller and better focused than what I got (my primary tumor, the place where the mets came from was never found, so they blasted my entire mucosa).

You might read the 'Median' essay by Stephan Gould concerning the reality of percentages and the power of a positive attitude on cancer treatment. It's a great read and inspiring. Here's the link - http://www.ratbags.com/rsoles/comment/gouldmedian.htm.

Keep us posted.

Best,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

The only thing I can add to the above posts, being a 20+-month NPC who did not experience tongue surgery, is: this is 2010, Colin, and many advances have been made over the years, and you'll get thru this okay.

You are gonna survive this- so get used to it! Try to keep this Positive fact in mind- staying Positive all the way thru this will serve you well. And keep members of your med team informed as to how you are physically dealing with it- they will help with whatever meds you need to limit the discomfort. However bad you may imagine this might become- you will be surprised by how much better it turned-out being.

Believe

kcass

colinc1
Posts: 14
Joined: Jun 2010

I asked the specialist about why they made a choice to operate,it was not his decision alone, it was made be several specialists behind closed doors.

I guess that's the way it is when you are on the australian public health system, you dont get to choose your doctor, unless you have private insurance.

See you all next week sometime, am hoping to borrow my daughters laptop and get back online while in hospital.

MarineE5
Posts: 746
Joined: Dec 2005

Colin,

Glad to hear that you are planning to use your daughter's laptop in the hospital. Please keep us posted on how you are doing. That is the wonderful thing about these computers. We may be laid up in a bed for a while, but we can still reach out and converse with others when are not up to talking at any special moment.

We will be thinking of you next week. Where I am located, we are 14 hrs behind you if I'm not mistaken.

Colin, you will get thru this, one step at a time, visit here often and we will try to be of help and answer questions that you might forget to ask the Doctors as they come in to check up on you. We may even offer a few to ask your Doctor as well : )

We know that allot is on your mind right now, we all have been there. But, if you can, try to relax and enjoy your weekend with your family.

My Best to You and Everyone Here

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Colin, First off let me say what you feel is natural. But your doctors should have explained things to you. But this is the place to get answers. I am 4 weeks post treatment with BOT and one tonsil with unknown primary stage 2. The first thing that was done to me was the placing of the trache. I have had 5 surgeries to reduce the size of my tumor and then had 20 rads. I will have my scans done one Aug. 3 to see if the tumor has shrunk. For me, the biggest difficulty was adjusting to my trache. You will need to sleep elevated and watch showering..we installed a hand help shower head..never go anywhere without having the means to clean it. I also have a moist air humidifier that I can hook to trache at times I really need the moisture..usually all night while I sleep. Also, as bad as it may hurt..cough, cough, cough. Your body has to get adjusted to not using your nose and we get moisture thru our noses. Everyone on here has helped me so much. I would never have made it without them. Talk to your doctors and explain your questions and fears. Best of luck with you. I will keep you in my prayers. Please keep us posted.
Debbie

colinc1
Posts: 14
Joined: Jun 2010

hi all

I am now 9 days out of the operation theatre,for stage 2 cancer below the tongue,and am right now sitting up in the ward trying to eat with a spoon,very difficult,mouth & tongue still swollen,is not making it any easier,but i keep on trying,takes me about 1 hr to get maybe 4-5 tablespoons down, also very tiring on the jaws,and still on the feeding tubes,

I think the feeding tubes will be in for several months,as much of my tongue area is still massively swollen,dont know how i will feed my self when i get sent home.

The trache was a real pain especially when having to try sleeping upright,but thankfully it came out on the 6th day,and boy what a relief,i got at least 3 hrs of non stop sleep,hope i get rid of that bum rash now.

My left wrist looks like a couple of pork chops with all the meat stripped off,thats all been put in my mouth,but have been assured it will grow back,and i am very surprised its not at all painful,unless i bang it.

To keep me occupied, i got several usb sticks & memory cards,filled them up with e-books,documentary films and a realy good mahjong game, some pc/photography mags & books.

To cap it all off for the day, doctors say i am progressing very well, thanks to everyones opinion that you need to keep a positive attitude & sense of humor, of which i have in abundance,

Enough for now,damn tiring using one hand for typing

Cheers

Colin

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Colin, Happy to hear that you seem to be doing so well after surgery. I hope the rest of your recovery goes smoothly. I know you are probably anxious but don't rush things ;-)

Take care and stay strong,
Glenna

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Colin,
The sugery is behind you and now you have rest and recovery ahead. The body does heal...it is amazing. Your attitude and your planning will serve you very well as you move through this time. Be patient...the human body knows what to do to make things right.
Kim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Colin,
Good to hear the operation went well and you're recovering. It's obvious you do have a sense of humor (and pain meds - ". . . wrist looks like a couple of pork chops . . . "). wishing you a boring (physically and emotionally) recovery. Do well.

colinc1
Posts: 14
Joined: Jun 2010

Before i went in to hospital,my brother bought a book The Rainbow Diet-And how it can help you treat cancer,-- a very interesting book by the way,and what is written makes a lot of sense.

Before the op,I had a test run of using a juicer to make some health drinks based on what was written in that book,some yummy,some not,but my feelings were that the drinks gave me one hell of a boost.

After a week of attempting to drink the mass produced hospital syrupy drinks , i couldnt even swallow the stuff,i called up my brother to make up some fresh celery & apple juice, i drank half a litre(half a US pint??) in an hour,which had to be the most refreshing drink all week,and am hoping i get fresh juice on a daily basis,until i am out of here and able to make my own

I will be following up a lot of the dietary recommendations in that book,see how it goes..

Colin

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