On June 13th, my wife had a biopsy that on June 20th, came back malignant. We were referred to an ENT clinic and at a consult on July 2nd, were told that we were lucky, caught this at an early stage (stage I) and could be treated with surgery to remove the tumor and using a skin graf to cover the tongue. They ran a few tests including a CT scan. At an appointment on July 7th, we found out the CT scan came back showing the tumor was larger than thought and would need more extensive surgery. Now at Stage II, surgery performed July 31st to remove the tumor (2.5cm x 1cm), using a fore arm flap for reconstruction and a bilateral neck dissection. When the pathology reports came back, it showed a total of three lymph nodes(2 on one side and one on the other) were positive for cancer. At our surgery follow up today, I asked if she was still a Stage II and was told that with the lymph nodes positive on both sides of the neck that it would be considered "early" Stage IV (T2N2C). Now I have had great respect for the surgeon, excellent credentials and head of the department but each time we have had this Stage move, it has been devastating. We are preparing now for radiation and chemo to start in three weeks. I was wondering if this was typical of others diagnosis where over 6 or 7 weeks the diagnosis keeps changing or if your original diagnosis was more accurate?

On a slightly different note, can anyone tell me that this gets easier. We are 3 weeks from the surgery, she has been home for 11 days and feel that I am running on empty. We are having a little problem with the healing of the arm and neck causing dressing changes 4 times a day. As a caregiver, how long was it before you were able to return to work? I know it sounds terrible to think about finances while your wife is battling for her life but...

Thanks for any input from your experience.

Tom- Hang in there. This will get a little easier as you get used to your "new normal". I learned this term from this website and didn't really understand it but believe me, you will. My husband had reconstruction using his leg and the healing process took quite awhile but did heal beautifully. As for the stage changes, we knew right away that Neil was at stage 4 because of the size of his tumor. Sometimes it really is hard to tell how far the disease has spread until they actually get in there.

Do you have anyone that could help you out? This is terribly hard for caregivers especially if you are alone. I am fortunate enough to have only been working part time until my husband's surgery. The lack of pay from that didn't make a difference in our finances but it must be weighing on your mind if you are the only one working right now. I know people on this board who have gotten help from the American Cancer Society-maybe you could give them a call.

All the best,
Sue

Tom,

It's unfortunate but reality that until all is known about anyone's particular cancer, accurate staging can not be achieved. What is fortunate is that she got and is getting the necessary treatment to hopefully get rid of all her cancer. This is a very aggressive cancer and it needs to be dealt with equally aggressive treatment.

You both have a ways to go and it will be tough but there will be light at the end of that treatment tunnel so keep that in mind. I was a Stage IV and in a few weeks I will be cancer free for 2 years.

Tell us more about her radiation (type, number of times, etc) and her chemo (type(s), frequency) and we can help you both a lot more in the months to come. You have hit the jack pot in finding this site.

Tom, I echo what David said, and understand completely how the spiral of diagnoses can become overwhelming. I did not have the changing statements about stage, but remember the same gut feeling when the doctor said it was Stage IV.

I am now 13 months post treatment, and am doing really very well. I also had a similar regimen, in the sense that my neck dissection preceded my radiation and chemo treatment. Physically as active as ever, eating well, working, all of those things we do. Sure, I deal with the dry mouth and the pain/stiffness in the neck and shoulders, but these are relatively minor.

As you will learn through more reading and interaction on the site, the Stage is a difficult concept when it comes to Head & Neck Cancer. There are a huge number of variables for each person's individual case, and the Stages are the profession's best attempt to logically group cases for study and statistical purposes.

Bottom line is to not fret over the Stage. Just follow the treatment protocol one day at a time, and you will be amazed at how quickly it is over.

OK, had a few hours of sleep and things seem much brighter today. We have been very blessed with having great families close by. Between them, friends and co-workers, the support given has been overwhelming. But being a man, it has been hard accepting that support and still haven't talked real openly about what is going on. We have used a CaringBridge website to keep most people updated with her condition but this website has been a Godsend, discussing many of the issues that I know I would not have understood if it wasn't happening to us. I believe it was "LuvMyHubby" that explains much of it so well, that when people ask how is my wife doing today? Well, what do you think, she is battling cancer, has pain from being cut ear to ear, an arm that isn't healing well, missing 2/3 of her tongue and getting ready for radiation and chemotherapy. Sorry got off the subject.

We have had two meetings with the radiologist, she has told us that it would be 33 treatments but as of yet not determined what treatment. From my notes yesterday, she said most likely IMRT or I thought she said something like "suma". I haven't had the time yet today to research what she actually said. Another blessing of this website, I can usually understand what I am being told if I take enough notes while talking to the doctors and then doing a little searching here. We don't meet with the chemo people until next week. I have my list of questions for them but if you have any things that you know we should be asking, would appreciate your thoughts.

I know for me it is hard getting past the numbers, I realize that they don't dictate whether someone lives or dies but it does make me step back from my old "normal" life to make sure my new "normal" is everything it can be without any regrets.

Tom, my brother had a similar instance of the stage number increasing pretty dramatically. His tumor grew pretty quickly (he could feel the difference) between the initial diagnosis and subsequent treatment. He went from Stage 3/4 (that is three-quarters ... yes, that is what he was told) to Stage IV in a short time. At the maximum, it was 6x4x2. I don't know if that is considered big when it's on the tongue, but it looked huge to us.

His treatment ended last December. He started a new job in April (I think) and feels great now.

For me, I focused on learning as much as I could and I tried not to think of the "numbers". I started asking Joe a lot of questions about his treatment until he finally told me that he just wanted to talk about "normal", everyday things ... what I was doing at work, what vacation I was planning, where he planned to go scuba diving, etc.

Jean

Re the chemo, you first have to find out what their recommendation is as it could be many different combinations and approaches. Come back and I'm sure you'll get responses. One thing is pretty clear though, that the current trend is to give smaller weekly doses as opposed to larger spread out doses in some of the chemos. It appears to lessen the toxicity side effects without reducing the desired benefits.

She's having three major body-mangling events back to back -- I'm two months out from the free-flap procedure (Dunno why they call it free; my new tongue is pinned down pretty well and it sure is costing $$!) and just feeling better -- It about wiped me out to walk 1/2 mile to appointment last week and I sure did sit on a lot of benches on the way back!

I haven't experienced the chemo, but the radiation is likely to put her on the sidelines for a couple of months before she stops getting worse and starts to get better, so my advice is to prepare yourselves for the long haul.

They are still finalizing the treatment plan but it seems pretty much that it will be 33 radiation treatments of IMRT at 5000 to 6000. The chemo will be 3 treatments of Cisplatin. They are suppose to be contacting us within the next 2 days to schedule outpatient for the port for chemo and the PEG. Her neck still has about a three inch section where the skin died so we are doing a wet/dry dressing trying to get some new skin growth. They would like to get that to heal up some before starting the radiation/chemo but they still want to stay within the six weeks since surgery. Next appointment is Wednesday with the ENT clinic and would imagine they will give their thumbs up or down to starting treatment on the 15th. I see that David had mentioned that many were going to smaller doses of the chemo rather than the spread out. They are planning the larger spread out for Pam and I see they used the 3 treatments for you also. Did you feel it was too much and would have been better with the smaller doses? I know they mentioned if she couldn't handle the larger doses that they could go to combo with taxal. Pam has already lost about 6 pounds since surgery and doesn't have much to spare (she is 5'2" and today weighed 96#).

Tom,

I had 3 bags of Cisplatin and that was 2 yrs ago. Now the current trend seems to be breaking those into smaller infusions of once a week for 6 weeks and the harsh side effects of the 3 big bags like I suffered seem to be lessened. You may want to ask your MO.