I am SOOOOO frustrated with my hubby!!!

His initial surgery was at a smaller hospital 2 hours away . Though the surgeon says "He got it all" he is sending us to see a radiation oncologist. Although the lymph nodes were clear, there may have been vascular invasion.

I want him to go to Mayo for 2nd opinion, evaluation and treatment....he says he will not go anywhere except a small local hospital ie 5 min away. Perhaps he is still in shock/ denial.

Whenever I try to talk to him or suggest he come on here and educate himself about oral cancer he gets VERY annoyed and goes downstairs. I am at a loss as to what I can do

Don�t push him too hard. Cancer doesn�t ask permission; it just barges into your life. Your husband probably wants to have some sense of control. At the very least, go to the appointment with him. Be prepared to ask about the treatment plan in detail. Will they follow the NCCN treatment guidelines? How many oral cancer patients they see each year? Ask the doctors their opinion about Mayo. (Run away fast if they do not support a second opinion.) This may be enough to get your husband to agree to go to Mayo for at the very least a second opinion.

I know I�ll be attacked here for saying this, but going to a regional cancer center is not a death sentence. Unless your husband were to get into a clinical trial, he will get the same standard chemo radiation treatment at Mayo as listed in the NCCN guidelines. You have a long, hard road ahead of you. I wish you the best of luck.

Susan

there are lots of great H&N cancer centers in Illinois (Chicago area) so you don't have to go to Mayo. Maybe hubby would consider one of those ? University of Chicago, Northwestern and Loyola.

The wife of an OC patient posted this in February 2010 after her husband was diagnosed by a regular (not cancer specialist) ENT. Since they live in New York City, several people here encouraged her to seek a second opinion for her husband at Memorial Sloan-Kettering, one of the top cancer centers in the U.S. She posted this after making an appointment there:
[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote] At the least, getting a second opinion from a top cancer center (Mayo, or one of those Ingrid K mentioned in the Chicago area) will let you compare what the local docs recommend with what the people who see this disease every day say.

In any case, I would suggest looking at the guidelines prepared by the National Comprehensive Cancer Network -- an alliance of 21 of the country's top cancer centers -- before the visit with the local RO so you all will have an idea of what the "gold standard" of care is. The NCCN protocols are updated every year and represent the state of the art in cancer treatment. There's a lot of valuable information in the main part of the OCF website as well, and everything there has been vetted for scientific/medical accuracy.

Other caregivers for patients who were reluctant to come to this site have found good luck in printing out relevant threads and leaving them lying around for the patient to "find" and read. Perhaps this would be helpful in your case as well. Best of luck, and keep coming back -- you won't find a more knowledgeable group anywhere.

Hi Shelydiane,

I'm sorry about the Dx. It's a roller coaster ride that seems to be out of control. One way to gain control is to be armed with good information. When making a decision as important as this, a 2nd opinion is vital, preferably at a major Comprehensive Cancer Center.

I'm not saying that there are smaller hospitals that are capable of treating your husband's cancer, but you should be confident and comfortable with the team.

I started my journey locally but ended up at Johns Hopkins after a 2nd opinion. Everyone there has been amazing. To know I'm at the best H&N center in the country puts my mind at rest concerning the plan of action. The Team of doctors, nurses, techs etc. are all on the same page. The state of the art technology and facility instills a great deal of confidence in me and promotes a positive attitude and outlook which is vital in battling this beast.

Check out this link: http://health.usnews.com/best-hospitals/rankings/cancer

My experience locally was troublesome to say the least. My gut feeling as well as my partner's/caregiver's feelings were the same. She just didn't feel good about things locally. Upon reviewing the ratings and researching the doctors, it was apparent why my gut was telling me "not" to seek treatment there.

Look up the local hospital and see how they stack up. There are doctor rating pages as well (a Google search will bring up several) that give you information and reviews from patients. I hope this can help.

"T"

Hi Shelydiane - I have to agree with Susan about not pushing too hard to get your husband to come on this forum. When my son was diagnosed, he only came here for a very short time. He said it depressed him to see what others were going thru, but what I did was print out all the good ideas I found here (and there are lots!) and just leave the info by his bed so he could look at them when he woke up or whenever he felt like it - when I wasn't around. Whenever something came up that I thought could be helpful (and leaving out the depressing stuff) I would print it out for him. That way, it was some other objective person(s) offering suggestions and not his mother (me) telling him what to do. THis way he could make up his own mind about what he wanted to do and keep some measure of control in his life. Your husband's life is soooo important and worth a second opinion which could bring some encouraging results and relieve a lot of stress for both of you! I'm a former Chicagoan and there are some really good hospitals there. Hope everything goes well for both of you!

Everyone is different, and your husband may not like the whole blogging idea, I didn't pre-cancer, even though I had a computer since 1995, I never blogged, and did not belong to any cancer sites when I was diagnosed, although I knew they existed by my short research. I did not, actually wasn't, able to join any until a year after my diagnosis, and initial treatment in 2009, and it was limited to another site, to share my experiences, and usually not the type to ask for advise. I just joined here last July. Eventually, your husband may join to share his experience too, help others, after he completes treatment.

Hi Shelydiane

I had the same sort of problem with my Alex. He also refused to travel to a hospital better known for its focus on cancer which was an hour away or get a second opinion, saying that he trusted the doctors he had.

It just seems to be their way to cope and you can't change it. I often wondered if Alex was so overloaded with everything that even small changes to the routine (even future ones) was just too much for him and he reacted with attitude which I can only describe as petulance.

Alex is normally a very gentle soul who considers his responses before opening his mouth and we almost never argue. During treatment it was a different story... Even things like the way I drive became cause for Alex to snipe. He doesn't know how close he came to being dropped off on the side of the road . I can laugh about it now, but at the time I would lie in bed wondering if I was going to make it through (let alone him)

All you can do is come to terms with it yourself and get on with making the best use of what you have.

The only other suggestion I have would be to get his doctors to talk to him about issues you feel are impacting on his current or future health. I enlisted the help of the co-ordinator who spoke to the doctor who then spoke to Alex on a fairly regular basis. It didn't work all the time (he still ended up in hospital with malnutrition and dehydration) but it was usually more successful than just me saying it.

PS Alex is doing great 3 years out, and our relationship has returned to better than normal.

you can't force it. you can show him this:

for months my dad's local ent and small hospital system bounced him around using up the time where his cancer could have been curable. by the time we got him to to a CCC (comp cancer center) his cancer was only treatable.

he's likely afraid, doesn't want the travel, doesn't want to put others out, all/any of this. bottom line, and as Charm our patron saint of all things said point-blank told me early on, a CCC is where you go for this type of cancer--and my opinion, ANY cancer.

best wishes!