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Newly diagnosed

tferg
Posts: 1
Joined: Nov 2009

My husband has just been diagnosed with Stage IVA squamous cell carcinoma of the tongue. The tumor is small, less than 1.3 cm but it's in two lymph nodes on the same side of the neck.
This is all so very new to both of us. It feels like everything is moving very fast and yet, dragging very very slowly. He's seen the first cancer doc and has his PET scan Weds., 11/18. My wish is that this turns out well with no further problems so we can progress ahead.

My questions:
So far, we're pleased with the docs, what the treatments will probably be, the start of what to expect. Advice on whether second opinions are necessary.

Also, they are recommending 7 weeks of radiation and chemotherapy as courses of action. When and how quickly should these start? In my brain, I wanted this to happen yesterday, because I don't know what's happening, how fast things spread etc. But I know things go in a logical path, so how soon will his treatment start?

pk's picture
pk
Posts: 192
Joined: Aug 2009

My husband went thru 7 weeks of radiation and chemo(Erbitux once everyweek during rads).
He is now 6 weeks out of treatment and doing quite well. He had his feeding tube pulled out last week and is eating and drinking Boost. He will have a PET scan again the first part of Jan. We too are thinking positively about that - hoping for no further treatment. The treatment gets rough after the first couple of weeks and the first couple of weeks post radiation. Extremely tired, pain, inability to eat food, lots of skin maintenance so as to keep the radiated skin from drying out and burning too badly. The most important thing to do prior to rads is to have a feeding tube placed. He will need it. My husband started is treatment a week and a half after diagnosis - very speedy. We did not go for second opinions as we have an oncology dept. in the medical center where we live. Good docs and from everything we read about this treatment they were right on target. This sight is the place to be as all who are on board have lots of experiance and great advice and support. PK

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

Your husband and my dad must have been diagnosed around the same time. My dad was given the diagnoses on 11/2/09 so it will be two weeks tomorrow. My dad a 65 year old nondrinker and nonsmoker has stage II SCC of the tongue but it has not spread to his lymph nodes. The size of the tumor is 3.9 cm. The information we have received thus far is that the best course of action is to treat with 7 weeks of radiation and chemo. We had asked about surgery to remove the tumor but the doctor said he would have to remove about half of my dad's tongue to get all the tumor out. We did see two different docs and they both agreed on the course of action. I don't think the treatment will be starting until the beginning of December because they still have to put in the PEG tube (on 11/23) and make a mask for him which apparently takes time.

How are you and your husband dealing with this news? Because my parents are not doing well. My dad is walking around like an 85 year old man which is totally not like him. He usually digging a hole to plant a tree and I am usually telling him he is going to have a heart attack and die while planting the tree. Anyway, he is usually a positive, outgoing, friendly guy and that is not him at all right now. And my mom is sitting around crying and worrying about the treatment and how bad it is going to be. And I of course am worrying about both of them.

I know I haven't given you a lot of info but I hope it helps to know that you are not the only one going through this right now. Please keep me posted on your husband's progress and let me know how you are doing as well!

Thinking positive!
Lisa

pk's picture
pk
Posts: 192
Joined: Aug 2009

My husband has completed the treatment that seems to be prescribed for your Dad except his Scc to the base of the tongue was 2/3 and a lymph node involved. Once your dad gets over the shock and gets started on his treatment it will be more manageable. The treatment is tough and several weeks after radiation is also tough, but I can tell you that embracing this and just getting going knowing what you have to do is really important. I can also tell you that at 6 weeks out - in my husbands case anyway - he no longer has his feeding tube and is trying to eat many foods. Oh, it's not always the most fun and there is some discomfort but the situation does get better - slowly. My husband and I are the age of your dad and I know what you mean by having a go getter man around. My husband is like that, but has learned that the rads take it out of you and that's just part of the deal. He's got more energy now, but still tires out easily. Encourage them to get on with this and keep planning for the future - there's no reason not to.
PK

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I know everyone is different but I agree with PK to take it head on. I am 48 and was diagnosed end of June 2009. (3 cm tumor back of tongue and 1 lymph node, SCC) I had exploratory surgey within 2 weeks (a Wednesday), results of about 20 biopsies from tongue and lymph node went to cancer board that Friday, PEG and medi-port put in next day Saturday, chemo started Monday and radiation on Tuesday. (3 chemos and 33 radiations over 6 weeks) PEG was a life saver, everyone right on with tough times. First chemo not too bad. Radiations a breeze. (I thought) Start of 2nd chemo things got rougher. By all means, don't lose your swallow. Keep sipping and trying to drink all the way through. (very important I think, was for me) Stayed rough through final chemo and about 2 weeks out of final radiation. Skin got pretty bad from radiation. I used the green aloe vera sunburn treatment with lidocaine in it. Skin recovered well but even now, 5 weeks out, skin kind of leathery and slightly dark. I had my PEG removed 2 days ago and am able to eat just about anything. Teeth had no problems, throat was manageable but certainly sore for many weeks. Once again, keep drinking everyday. The sooner you can eat real food the faster strength and stamina come back. Get in there and battle. Good luck!

Mike

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

Thank you for the words of encouragement! We got some good news yesterday, my dad will not have to have any of his teeth pulled! That was a big relief for all of us especially my dad. Anyway, he went to have his mask made yesterday and my mom said he did really well. He will have the feeding tube put in on Monday 11/23 and then will begin radiation on 12/3. He is doing better he seemed a little more "normal" to me today which is a good thing. I think he is realizing that he has to just do it and get on with his life. My mom is getting better too she was a little weepy today, but yesterday she seemed really good. She told me today that she was still scared about the radiation and what side effects it will bring with it. What was the worst part of the radiation for your husband? I keep thinking it must be the sores in the mouth....it sounds terribly painful! Thanks again for the encouragement! Please keep me posted on your situation as well!

Thinking positive!

Lisa

debbij
Posts: 22
Joined: Oct 2009

my husband has the same thing...like PK said...head on !! you are in for a battle as well as him....my husband is going to go thru similar treatment...he already has 2 chemos under his belt and his third is nov 30...he checks into Mt Sinai on dec 27 for 24/5 chemo and 2 radiation treatments a day...this will go on for a period of 10 weeks...from what the radiologist told us and from what we are hearing from other people..its going to be hell weeks...hang in there..we are here for you

xoxoxo

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

I had a very close diagnosis to your husband, base of the tongue, small tumor and two lymph nodes , same side. 39 radiation treatments and 3 rounds of 21 day cisplatin chemo. To finish everything up I'm scheduled for a neck disection on 11-30-2009. They will use the PET scan to set up the fields for the radiation, really goood pictures. Ask to see them and the Rad treatment plan. Then ask to view a radiation session from the control room. Will give you a great perspective and the techs are all very informative. If you are at a hospital using a muti dicipplinary approach of team concept then its time to go for it! The treatment is doable but not pleasant at times. Ask lots of questions. tell him to start eating now.

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