Hello all and glad I found this site. It's not me it's my husband 59yrs old. He had a complete laryngectomy with neck disection almost 9 years ago. He has been using the Blom/Singer voice prosthesis with great success for all this time, and leads a very active lifestyle in Florida. April of this year he noticed there was something going on in his throat. After all the tests, scans, and biopsy he is now scheduled for IMRT 2x day for 3wks and a few rounds of chemo to treat the squamous cell carcinoma. It's the nightmare all over again....

Dear EBJensen,

Welcome to this forum -- I'm sorry to hear your husband is having to face this all over again. I'm sure you'll find a lot of support and helpful information here.

When does your husband start with chemo and radiation? Is he being treated at a major cancer center? As you may have already heard, radiation in the head and neck region is typically very debilitating for a period of months, so it's important for him to be prepared ahead of time to meet his nutritional needs and try to minimize weight loss during the course of treatment.

Please feel free to post your questions and concerns and there's bound to be someone here who has experienced something similar.

Cathy

Thank you Cathy. Thanks for your prompt reply.

This cancer is located on the posterior pharyngeal wall. The surgeon removed most of the lesion during the biopsy. Yes he's being treated at a cancer care center through the local VA. He was treated by this RO before. It hasn't been staged yet but Monday he goes to be fitted for a mouth piece through which the (beam?) will be focused. He has complete upper and lower dentures so access isn't a big problem, plus he can breathe through his stoma. Wednesday he goes for a Pet/CT scan. The VA wanted to go right in and split his jaw, but they were just a little too gung ho for us.

He was a smoker since 16, he was on the flight deck of an aircraft carrier for 4 years and has worked around all manner of toxic stuff not to mention his previous love of beer.

He magically bounced back from his previous surgery, improved his diet and other lifestyle habits, and continues to work on the water for a living .It is almost a certainty that this cancer is the result of the previous radiation therapy. And also why it is so much harder to deal with. All this time thinking you are "home free" so to speak.

It is extremely difficult for me to maintain a positive outlook as both my parents died of cancer and sometimes the medical community is so lacking (occupational hazzard?) in compassion, not to mention the fact they don't communicate well with each other.

Then we have the fact that I have a major dental event happening as well. I know we're not ever given more than well can handle but this is really pushing it.

EBJ

Dear EBJ

I am sorry that you and your husband are travelling such a difficult path again. Fortunately your husband is able to have radiation to knock the recurrence out.

As Cathy says, many people are here for you and wishing your husband well.

Best wishes and love from Helen

Dear EBJ, it sounds like you are both really strong fighters and support each other well. I wish you best luck in dealing with this. Amy

Hello EBJ,

I'm sorry you and your husband have to go through this horrible diaease again. Hoping this second round of trearment does it's intended job.
Please keep us posted as he travels through his treatment. We may be able to help with any questions you will have.

I think the medical professionals that deal with
death all the time become immune to the personal
part of it. I know that all the Nurses and my doctor are very caring compassionet people. Takes special people to work in the cancer department.

It only takes a few bad apples to spoil the bunch! Ignore them.

Best of luck, Danny Boy

Dear EBJ, my thoughts and prayers are with you both during this time. Just wanted to let you know I care. God Bless, Carol

Thank you all so much for your responses and encouragement. I see that some of you have indeed been through and continue to live with this awful thing that is cancer. We can all be glad we are living in an age of incredible technology. I have learned and continue to learn more than I really wanted to, but it is my way of bearing part of the huge burden my husband has been faced with.

Today K.C. was fitted with a device that will allow them to place the radioactive (seeds?) He did very well. On Wednesday they will do the scans and we'll then know the stage of this beast. He starts his treatments next Monday.

I can look forward to having three teeth extracted sometime next week. Hoping to do it on a Friday so that we could rent a motel room so I can crash between his treatments and then go home and have the weekend to get mostly over the dental thing. We joked that we'll now be eating the same sorry goo of pudding, applesauce, mashed potatoes, etc.

Again thank you all for a warm welcome.

Hi EJB,
I am also a total laryngectomy with a ATOS TEP prothesis. My cancer on the larynx was a tiny tumor on the edge of the esaphageal opening so they could not remove it with a laser. Since I had already had XRT 4 years prior, I could not have more rx so surgery was my only option.

I too have been experiencing some symptoms recently, like voice change, that bother me but drs think nothing is wrong. What symptoms did your husband have? Is this cancer of the esaphagus that they think he has? What type of radiation did he have 9 years ago? XRT or IMRT? Do they really think the rads caused it. I am having so many CT scans I am afraid they will cause cancer.

Keep us posted as to what the tests show and I hope all goes well.

Take care,
Eileen

PS. I'm curious. I'm a beach freak and have been told to stay out of the ocean. Have snuck in to my waist in FL. Does you husband get in the ocean at all? It can be pretty rough here in NJ but I would like to try whne it is not.

Hello Eileen,
Yes they do think that this was caused by previous radiation treatments 9 yrs ago. I don't know what type it was then, he had daily single treatments for 7wks.

Before the surgery and radiation the tumor was wrapped completely around his larynx. He had been for a consult a year earlier but the Dr. blew him off because he had a pack of cigarettes in his shirt pocket. I was so angry because it had taken so long to convince him to see a Dr. The soreness came and went and one night he coughed up a lot of blood (sorry so graphic). Another ENT (an absolute angel) said surgery or only 6 to 8 months before he'd have real trouble swallowing and breathing. Complete neck disection ear to ear, and 30 some odd lymph nodes. At that time we weren't concerned with the details, just that he would survive the 7Hr surgery and make it through the radiation treatments.

This time around he said a sore spot that was sensitive to acid foods and carbonated drinks, and then further pain and difficulty swallowing, no voice change. The lesion was a 2 x 1 cm that was removed.

K.C. doesn't really swim he sits in water that comes up to his upper chest and he also wades standing out to chest deep water. We have a small pool that we cool off in here in FL that is 9ft dia. and 48" deep. He's been on the water his whole life, so he's just about fearless.

Stay well,
EBJ

i just had 30 IMRT treatments and the side effects were not as bad as the doctor warned of. He said that had alot to do with the Imrt technology, really pinpoints the rad. don't know if this helps but it may not be as bad as 9 years ago.

Hi EBJ,
I grew up at a lake and at 17 starting started to work at the shore so I have spent my entire life in the water. This is the only surgery that has scared me. I was terrified of taking a shower for the first 8 weeks. I've over came that, but my surgeon has me scared stiff of the ocean. Granted NJ beaches are rough and uneven so I certainly can't get knocked off my feet. But he makes it sound like if I go under for a second I will drown. Like I would breathe in if I am under water? Think I will give it a try next time tide is out.

Really sorry to hear your husband has had this reoccurence and so many years later. I would have thought if it was a result of radiation it would have shown up sooner, but glad that they were able to remove it and he can still have radiation. One of my worst fears is cancer of the esaphagus. Thanks for the symptoms.

Hoping his treatment goes well without too many complications.

Take care,
Eileen

Hi EBJ,
My husband also appears to have another cancer caused from prior radiation. Nine years ago (age 34) he had six weeks of xrt rad for tonsillar non-hodgkin's lymphoma. Did great until this April when he was found to have Stage IV base of tongue/epiglottis SCC. The irony is that at the time he had the 1st rad he already had "odds" upwards of 90% cure with chemo and the rad was just really a little insurance. I try not to dwell on that though because we made the best decision we could at that time and we had to deal with what was at hand. I guess we don't really have the luxury of worrying about secondary cancers when we have one to cure now.It is a little scary though because now he has had rad twice to the same area. The docs do feel this cancer is most likely from the prior rad-never smoked and social alcohol. I wish you both well .

mghester, thanks for the positive info on IMRT. I think they want to prepare folks for the worst so they're relieved when it doesn't happen. Glad it went smoothly for you.

Eileen, I know the swim thing is a big taboo, due to the obvious stoma conflict, but but wading around in reasonably calm shallow water should be o.k. if you're cautious and you've always been around water. It's a personal choice.

As far as symptoms go, people know when things aren't right with their own bodies. They often don't pursue medical care out of fear. Once you've had any type of oral cancer, you still have to be vigilant. Stay well and thanks for your concern.

EBJ

Doreen, you're right we don't have the luxury at the time we get this news wether it's the first or second time. There is so much information, much of it conflicting. You wonder are the Drs. telling us what we want to hear or what we need to know? I think they fail sometimes with the statistics because we are all individuals and what may work for some may not for others. There are so many variables with these particular diseases. I do know that Drs. try the best they can to increase survival.

When you are the caregiver or the patient this disease becomes your primary job and hopefully, later a maintenance chore.

K.C. had his pet/ct scan yesterday and fortunately nothing has spread it's still a T2N0. He will start with 3-4wks IMRT with chemo (cisplatin 1x wk), and the Brachytherapy (the seed inserts?) not sure how many treatments directly to the tumor area last.

Bless you all

EBJ