Hello all. My husband was diagnosed with squamous cell carcinoma last Friday. Through the internet with GREAT sites like this and the drs. we've went to so far, we have learned a lot in such a short time. My husband is 35 yrs. old, never smoked or drank-the healthiest person I've ever known (so I thought, he's never had a physical in his adult life). I have been in a state of shock and just want to wake up from this bad dream!

He's already had a biopsy and MRI. He goes on Monday for a CT-scan. Tuesday he has a chest x-ray & PET-scan. The Chemotherapy Onc, Radiation Onc & ENT are to get together on Wednesday so decide the best treatment plan. We meet with the Radiation Onc. on Thursday. They've already told us it's probably a stage 2 or 3 and that it will probably take a combination of radiation & chemo to get it.

My biggest fear is that is has spread to his lymph nodes. He complains about them hurting so bad. The pain killers they've prescribed to him are only lasting less than 2 hours.

I would love to hear from anyone who knows if the lymph node pain he's experiencing is cancer causing it. Although we should have the true answer on Thursday, it kills me to see him in pain. I would appreciate any advise or support anyone can give me. We also have a 9 yr old daughter and trying to explain what's happening with Daddy and not getting her totally scared is tough.

Thank you for your support,
JudyB

Hi Judy:

Welcome to the board and try to breathe because it looks like you have moved quickly in the treatments process and are putting all the right things in place early. The fact that your husband is scheduled for relevant tests (Chest x-ray & PET scan) demonstrates that you appear to have a progressive and assertive treatment team.

In answer to your questions about the lymph node issue and treatment plans in general, it would probably be helpful if we all have some more information:

1. Where is the primary site of the lesion? Where was the biopsy taken from?
2. When he has the CT scan, ask if the lesion can be visualized and the size approximated.

3. Does you husband have any palpable (can you feel them?) lymph nodes and if so, did the MD's give you an idea of what size they are estimated to be?Tell us more about his symptoms...

4. Is the predominant mode of treatment intended to be raidation & chemo? If so, you need to inquire about unilateral and/or bilateral (depending on how many nodes and if all oare on side or on both) are involved. It would be wise to get a surgical oncologist(who specializes in head and neck cancer) to look at his CT scan and examine him when the info is available.

5.Get a copy of the biopsy so you have it to shown to all the health care providers you consult and guard the CT scan like gold if it is being passed around to different people.

6. The good news is regional spread to the lymph nodes does not always mean there is systemic spread to major organs but it is a concern and bears checking, especially the abdomen and lungs for starters.Some also scan the brain. Luckily, initial tumors often stay localized but the risk does go up when the lymh channel becomes a player because it is like a tour guide to other parts of the body. Thus, it would be wise to formulate a treatment plan quickly and start acting. But, balance out your panic with the thought that most MD's think lesions have been around for 24-30 mos. before people have symptoms so taking a little time to sift through information and make an informed choice is okay.

My partner, Dave, had a tonsillar lesion removed about 6 weeks ago and is currently entering his 2nd week of post-op radiation after having a neck dissection and lymph node removal on the right side. Between us, we have 3 kids (17, 10, and 6). Once you formulate your plan, I would be glad to share how I explained the surgery and radiation to my kids (the younger of the 3).It is a scary time for all of you but life can still go on-for you and your child.

We'll all stick with you through this...you've entered a wonderful safe haven of information and support where you will find we all care deeply about each other and helpifng with positive outcomes.

Kim

Judy, Welcome to the board. You will find it to be a place of great compassion and knowledge as you begin your journey with cancer. My husband was only 37 when diagnosed with squamous cell carcinoma of the tonsil which had spread to three lymph nodes in his neck. Like your husband, he had never smoked and only had an occasional beer, so he really had none of the risk factors. It was a very big shock for me, like you, because my husband was so healthy like yours. It is hard to imagine how someone so active and apparently healthy can one day be told, you have cancer, what a shock. We have three children, they are 15, 11 and 9. It was hard explaining to them what was going on, but we tried to keep an open communication going with them and to explain things to them in terms they could understand. My husband's cancer was two years ago and while we went through treatment in Houston, Texas for six weeks, we lived there and my Mom came and lived with the kids here in Mississippi. It was a very trying time, but we made it through and you will too. Try to keep your chin up and remember that you are going through a temporary treatment plan that will hopefully give him a lifetime of cure. Thinking this way helped me get through the dark days and nights, and now we are on the other side and things are going great for us. So hold tight and if you ever want to email me personally, please do. As far as the lymph nodes being painful, my husband had a large lymph node on his neck, that is how we found the cancer originally and his was never painful.
God bless you both.
Julie

Welcome to OCF. As you can see from the previous posts, this site is populated with lots of wonderful, giving people who share their knowlege and experiences to help you through your own. At this stage of things I can not add much to the posts which are above, only to say that in my own experience, and with most others, malignant nodes are not usually painful. Of course this is not an absolute. We wish your husband quick and successful treatments and a return to a normal life for both of you in the future.

Hi,
My husband was diagnosed with Stage 3-4 cancer of the base of the tongue this past April. He had no symptoms except an enlarged lymph node on the right side. It felt like a swollen gland but was not at all painful. After all the testing, they discovered a small lesion at the base of the tongue which was the primary source. He had radical neck disection and radiation and chemo. I can't add anything very technical or medical, but I can share some of the lessons we learned.
1) If your husband is strong and young and has support, I'd go for the most agressive treatment possible. We figured 6-12 months of hell is worth 30 more years of life.
2) We had the decision to do surgery first then radiation/chemo second OR radiation first THEN surgery. We chose surgery first and we are very glad we did. Our ENT Surgon (which you must get-- someone with specific experience in head and neck surgery) convinced us when he said it was easier to see the surgical site without the scarring of tissue from radiation. We are so glad we did surgery first because the RADIATION IS SO MUCH WORSE than the surgery. My husband healed from surgery quickly and could face the radiation better than if he had to face the surgery after radiation.
3) The one regret was that we did not use a feeding tube or PEG. My husband lost far too much weight and I think it added to his complications. You must keep up with nutrition. It may become extremely difficult to eat or even drink water.
4) If you do radiation or chemo or both, be mindful that the worst usually comes AFTER the treatments end. My husband sailed through treatments, even driving himself up to his last treatments. Then, within a week he was in intensive care with serious breathing problems (had to be intubated) and pnemonia.
He's doing much better now. He's home and (slowly) gaining weight.
The only advice I can give you about the kids (we have two, 11 and 13) is that because of their limited experience in life, they don't always understand the implications of what might be happening. I would stick to clear simply facts about what they might experience or how things may change as they happen. We let our kids know what was going on in stages, and didn't dump everything on them at once. And we didn't get too technical or medical. We kept a very positive but honest outlook. I hope this helps and we're praying for you. To say this will be a trying time for you is an understatement but you will get through it.
Best of Luck,
BC

B.C., Your husband's situation sounds similar to mine...stage IV, base of tongue lesion with neck nodes. However my tumor was to big to make surgery an option, so I had just radiation and concomitant chemo.
I am curious about a couple of things: Did your husband ever get the PEG? I have had mine since the third week of radiation.
Secondly, you said that he is gaining weight. Is he now eating solid foods? If, so, how long after treatment was he able to eat? I have been through with treatment since labor day and still , not only cannot eat, but, as you mentioned, even have difficulty swallowing liquids including water.

Danny

Hi Danny:

Kust checking in and wondering how you are? I'm also thinking I never asked you if you had a formal swallowing evaluation with a speech therapsist who specializes in head & neck issues? I know that here that sort of evaluation is standard post-op but would think it woudl make sense post-radiation too if yo ar ehaving so much trouble.

What was the final word on your CT scan? I've still been keeping everything crossed!

Cheers,

Kim

Sorry, it's 6am here and I just noticed my spell check isn't awake yet-hope you get the point above.

K-

Thank you for everyone's advice and encouragement. I will try to answer some of the questions I've been asked.

His tumor is on the right-underside of his tongue near the base.

We went to the ENT yesterday and he said given the location and size of the tumor, surgery is not at option at this point. It would entail removing 2/3 of his tongue.

The CT-scan which was scheduled for yesterday was cancelled. Don't know why but atleast he did have the PET-scan today. We will have the results from it on Thursday.

Depending on the results, he will atleast have radiation therapy possibly chemo as well. He really doesn't want chemo but if he has to, he has to.

Thank you for talking about a feeding tube, I will mention it to the Dr. on Thursday. My husband is 6ft. 172 lbs. to begin with, he can't afford to lose much weight, if any.

I will keep you informed on Thursday's results. Thank you everybody for being so informative and I'm sure we'll get to know each other a lot better of the next few months.

God bless,
JudyB

Judy,
My diagnosis is similar to your husband's. Surgery was not an option so we did radiation with concurrent chemo. The chemo was given in small doses and caused very little discomfort and no hair loss...so don't write off chemo. Some studies show that it really helps shrink the tumors along with radiation. My problems have resulted from radiation, not the chemo , which has long since passed. Putting in the PEG is a very simple procedure and eating with it is no problem. Obviously it is better to eat if one can eat, but if you cannot, the tube is a wonderful alternative.

Kim,
The CTscan showed a little something in one of my neck nodes. I will have ultrasound and perhaps needle biopsy next week. I am hoping that it is only a little scar tissue. The doctors cannot feel it manually. Last week I did meet with the speech/swallow therapist. Bottom line: I am still very sore and swollen from the radiation, so she was pretty lenient with me. We did schedule a barium swallow, contingent upon being a little more healed.
Thanks for asking.
I hope that everyone is doing well.

Danny G.