Hi Everyone,

I am not the patient. My husband is. I am at this forum because I feel like so many questions are not being answered. My husband had surgery a week ago. He is still in the hospital. They removed half his tongue, the lymph nodes in his neck and reconstructed. He is T2N1M0, well differentiated, non smoker, doesn't drink. 42. We have two kids. They say he will get out this week and start chemo in a couple of weeks. No radiation. I want to know what to expect. How long does chemo last? What chances does he have of getting through this? How can I best support him? What do I tell the kids, eleven and fourteen? How can I make chemo easier on him?
Thanks for responding.

Hello, this is a very stressful time for you and I'm sorry to hear you are not getting answers.
My first question is about where your Husband is being treated. Is he at a Comprehensive cancer centre? A CCC. These hospitals are the most experienced at dealing with these Head &Neck cancers. They do it all the time, all week and are at the cutting edge of treatments. They use a whole tumour Board approach where your treatment decisions are decided by the surgeons, the radiation and chemo oncologist, the oncology dentists, dieticians Speech Therapists etc,. At any time through this did you get a second opinion from anywhere?
My concern is that your Husband did have spread to a lymph node. Even though this has now been removed in the neck dissection. I would have presumed that this warranted radiation treatment. This cancer likes to spread and the risk of recurrence is high. Personally I would hit it hard from the get go and I would be wanting follow up with radiation.
Many others will, I'm sure, come along shortly and give you further advice.
My thinking is to be upfront and honest with the kids. They will already know Dad is unwell as he has had surgery . Reassure them that he is being treated by the best and there is an excellent chance of a cure.
I wish you the best.
Tammy

Welcome to OCF! Im very glad you have found our site. We will be able to help you with info and support.

I see you are not located in the US. Im sorry but Im not familiar with what treatment centers other countries have available. here, our top centers are comprehensive cancer centers. They offer a team based approach so all the specialists are always on the same page. If something like this is available where you are located, then a second opinion would be a good idea. Its unusual here for patients to have surgery and be given chemo as a follow up. You will need to ask your husbands physicians what the treatment plan is and what type of chemo he will be given. Also ask if he will be given smaller weekly doses (much easier to tolerate) or a larger dose every 3 weeks. Most patients here have had cisplatin or Erbitux along with radiation. I would also suggest asking why no radiation has been considered.

In the US, its not the normal treatment plan to have surgery, then follow it up with only chemo. If your husband has squamous cell carcinoma (SCC) of the oral tongue, in the US usually patients like this are treated with surgery and radiation with or without chemo. By itself, chemo has not been proven to kill this type of cancer. But chemo when used in conjunction with radiation helps to make the radiation more effective. In other countries, there could be different medications that have not yet been FDA approved for use in the US.

I was diagnosed with OC when my children were teenagers. It wasnt easy telling them but it was something necessary. I was their only parent and this was something I was not able to hide from them. I suggest a long honest discussion with the children where they can be reassured would be the best option. I know its not easy to have this type of discussion. I wish you all the very best with this.

About the only thing you can do to make chemo easier is to help by focusing on his intake. Every day he should take in at least 2500 calories and 48-64 oz of water. Water intake is especially important when having chemo. Its needed to flush the poisons out of his body. So pay close attention to his chemo schedule and push the water intake on the day of and after chemo is given. If your husband is nauseous, he should take anti nausea meds around the clock. Once he becomes nauseous its nearly impossible to keep anything down or to put back everything he throws up. Anti nausea meds are available here in suppository form just in case he cant keep anything down.

Best wishes with everything!

Appleseed - as far as I know chemo by itself isn't terribly effective against this type of cancer. If they're doing follow up treatment (I would based in the 1 node) then it should ideally be radiation. If you're not at a cancer center get a second opinion at one. Hugs

Appleseed, we are also not close to a Comprehensive Cancer Center. My husband also had 1/2 of his tongue removed 6/1 with a left neck dissection. He had 2 positive nodes. We did get a second opinion. I agree radiation is the absolute correct treatment with maybe chemo depending on a number of factors. I dug through many articals and treatment guidelines understand this. A few of the factors that would warrent chemo are, were the tumor borders negative, were the lymph nodes encapsulated, was there perineural invasion. We were reluctant to offend our providers by getting a second opinion, but they embraced it. We told them we were doing it, and had the opinion sent to them. We let them know that we didn't necessarily want to change providers, but hoped they would consider the opinion of experts. All worked out well. We stayed where we were and there were a few tweets to the treatment plan. You've come to a great site. Everyone here has been very helpful for us. My husband is now in his 5th week of radiation and also receiving chemotherapy. He's doing great, is upbeat and can't wait to get this behind us.