Brandon,
I understand your passion in wanting me to know all about whatJoe is dealing with.I really appreciate your words of advise.I am not totally convinced that the doctors know everything about Joe,and yes I feel that they are putting a sugar coat on what they're telling me.The difficulty with this whole situation is that I am not a medical professional,although I have a neighbor who is an oncology nurse.I ask her questions the same way I do in this forum.She has told me things that chill me to the bone,and she is a very straight foward person.I am fully aware what can and probably will happen to him.My need is basically this,I see the serious nature of Joe's condition and the doctors have not been as straight foward as I'd like.Just like yourself, I have read as many articles as I can get my hands on.I have talked to numerous people in and out of the medical field.They have all given me similar responses.So,please don't think that I am searching for a cure for his cancer in this forum.I am in search of opinions from people that have gone through similar situations.I don't care that there is no one but you that has experience with oral melanoma.The answers that I am seeking are of a general oral cancer nature,not solely based in melanoma.I think I would be very hard pressed to find anyone.Joe's head and neck surgeon had 5 patients with malignant melanoma,and none of them lived more than 3 years.There was one case that a lady died in less than 3 months after biopsy.I read Joe's path report for myself from the surgery and it is not good.The tumor that they removed from his tongue alone measured 7.3by5.3 cm.I now that this is one of his prognosticators,and it's not good.The cancer was so extensive in his neck that the surgeon made a pont of saying that he hadn't come across a neck dissection that radical before.Some of his infected lymph nodes were 5-6cm.So,while I really appreciate your interest,I think you have my motives wrong.I only crave general experience answers not text book quotes.I get enough of them from the medical professionals.So,now I guess it's me who should apologise if I sound harsh but I need help with this whole situation.I don't want anyone to feel apprehensive to answer me because they have no knowledge of melanoma.I'll take all the help I can get.In the weeks I've been handling this disease with Joe,this forum has given me more that I could have asked for.

Thanks again for your interest,
Patty

Patty, Ask any time about any thing. You have a heavy load to carry and many here will help with the load if they are able.

Brandon, You are OK! you have been through a terrible thing. Your insights about what happened to you and Tony have value. The "cage" here gets rattled sometimes but we usually survive (we are experienced survivors). Expressing yourself is perhaps both helpful for you as it is for the readers. From my seat as long as comments aren't personal attacks or wacky untruths, generally they will be well received here.

Speak softly and more people listen.

Patty,

I have re-read this entire string of posts and I think between Brandon's post and your post immediately preceding his, you have your answer. Brandon stated that he and Tony would have done things differently and also stated in a previous post that Tony just wanted to be left alone instead of continuing treatment. You stated that Joe wanted to retain some quality of life. It is not easy for me to suggest this, but as long as you are satisfied that you have explored all the options and gotten enough educated opinions from good doctors, I think perhaps the right thing to do is to honor Joe's request. If chemo and RAD offer little to no hope of arresting this, he shouldn't have to suffer through them. They are hard enough to get through when the cancer is under control and the person is relatively healthy otherwise. It was excruciatingly difficult for Heather and I think it was at least partly because her cancer was still aggressively advancing and her body just didn't have the resources to fight the cancer and cope with the side effects of the chemo at the same time.

One really big thing we did wrong with Heather was to start chemo instead of having the surgery to remove the tumor and repair her spine first. She chose the chemo first because removing the spinal tumor wouldn't have done anything to halt the other tumor(s), the chemo would have to be delayed until she healed from the surgery and because the surgery itself carried the risk of paralysis. BUT, because she didn't have the surgery, the quality of her life was awful. She was totally dependent on others for everything. She needed help just to stand up and use the bedside commode. She couldn't even wipe herself. The morphine controlled the pain in her face, but it never was able to completely control the pain in her spine. She couldn't sit up because it hurt too much. When she sat on the commode, she had to lean against me because holding her head up was excruciatingly painful. It hurt every time we had to take her for a doctor visit, a chemo treatment or a test. That's why she didn't want to go for another opinion. She could barely stand a 30 minute drive. No way could she stand a 2 hr. drive to Johns Hopkins or a 5-6 hr drive to Sloan-Kettering. Then, on top of that, the chemo left her very weak, gave her joint and muscle pain, made her nauseous and some of it gave her diarrhea.

The upshot of all this is that had we known there was virtually no chance of survival, we would have definitely opted for the surgery first so she could have had a better quality of life instead of opting for the chemo first for the possibly of an extended life. Keeping a person alive as long as you can sounds like the right choice. But having to watch a loved one suffer with terrible, debilitating pain day after day makes one question the wisdom of that decision.
And, before some of you jump down my throat, this is in no way an endorsement of suicide, euthanasia or simply giving up. It's just that there are times to keep fighting and there are times to realize that the fight is over.

Patty, my heart truly goes out to you. You are in an exceptionally difficult position. May God (or whatever higher power there may be) grant you the wisdom to help Joe make the right choice.

Rainbows & hugs,
Rosie

My husband who is named in the display name was diagnosed with squamous cell carcinoma in the middle of May. He passed away July 21st. We did not get a 2nd opinion. We were told for his age and health he had a 90% chance of recovering fully. The end of May he had a radical neck dissection on the right side of his neck. After surgery the ENT said it was one of the best but hardest surgeries he's had. 12+ years he's been doing this. He said he couldn't get all of the cancer but the radiation and if needed chemo would take care of it. One thing he neglected to mention and I had to research over the internet. We never asked and he never gave us any information regarding the flip-side. My husband and I know little if at all, anything to do with anykind of cancer. The skin flap died! Wow, what the heck does that mean...So now what? We were told it'll probably heal on its own...I didn't feel good about this at all! He did start healing but then all of a sudden his right eye was swollen shut and he could feel something in the back of his throat. He thought he had an infection. After seeing the ENT again. He takes 2 minutes looks in his mouth says its not an infection it's the cancer. Now we had been thru over 2 weeks of radiation. To make a very long, sad story short. We struggled to get information out of the doctor. Is it not their responsibility to be completely frank and honest with their patients. Holding back critical information like, "Your chances of survival is now extremely low now". My husband could have gotten his affairs in order. He could have been alot more informed re: stage of cancer, which I got out of the radiation therapist some 3-4 weeks after the surgery. Stage iv, how could you not tell your patient they were basically terminal? I am very angry and I probably should have waited a little longer after my husbands death. Needless to say I have very little faith in doctors now. I am sickened by this entire ordeal. I have learned a lesson now. Certainly will not bring my Lanson back will it?

To all: Get a 2nd opinion, ask alot of questions, research anything said on your first appointment thru the internet or library.

I am truely sorry if this letter bothers any of you. It's just my 3 sons and I have alot of unanswered questions. If this letter helps just one person I will know that I have done my part.

Love your friends and family each day as though it were your last.

Nancy L

I want to really strongly advise you to get a second opinion at a major cancer center. Check Dana Farber`s website for malignant melanoma, and all the clinical trials. We have a friend, who`s son has been battling malignant melanoma for several years, he`s been treated with interferon and the new vaccine. He still, at this point, has a new tumor,but has had several years of life that I don`t think he would have had without a major treatment center. The major centers see more and do more. As far as prognosis, we have one right now from a couple months to a couple years....as far as docs saying they haven`t done a neck resection this difficult, etc, makes you wonder about the surgeon. Frank had his entire lower jaw, tongue larynx removed, reconstructed, failed muscle graft, but our docs always had a we can do this attitude,anyway, my point is, I strongly urge you to get to a major treatment center and find out what options you may have. We have been battling for 5 years, and I know if we hadn`t gotten to Boston 2 yrs ago, Frank would have been gone by now. I know Brian feels about clinical trials, but malignant melanoma is nasty, our friend`s son got the real stuff in the clincal trials as opposed to a placebo because it was so advanced, but he`s still here and still fighting......Dee

Hello,

First of all to Dee,the cancer center that he is dealing with is a major one.The doctors there are part of the University of Medical Dentistry.I had his surgeon checked out before he saw him and he has a 30 year spotless record with glowing accolades.The medical oncologist and the radiation oncologist are both the head of their repective departments.I have no issue with the actual care that has been given to him only the wall of secrecy that they seem to have.Almost all of the things I learned about his illness I found out by reports.I have in my possesion every report for all his tests and doctors visits because I needed to expedite his SS case.So since I was the middle man per se I had a lot of knowledge.My neighbor who I mentioned in a previous post,has shown his results to 3 different oncologists.They are all in agreement with his doctors.I think the whole thought process of this thread has gone off course.I am not asking if he should be seen or treated in a different manner.Although I am aggravated by the way his doctors are doing things I find them all to be excellent doctors.In a way they are going above and beyond for him.They convened a tumor board before his surgery to get other opinions.He has been the talk of that center,every visit that he had they took multiple pictures of the tumor in every doctors office.They even took pictures when he went to see the GI for his peg tube.This tumor was just something that only his surgeon had dealt with and even he didn't have one that big before.So,there are many doctors very interested in his case.I just wish one if them would show me the way to deal with this.I'm sorry I rambled on I think I'm confusing all of you and I'm sorry.

Patty

Patty, it is good that you make clarifications at this point of time. Having been a frequent visitor on this forum, sometimes I found that outsiders tend to sound more experts than the experienced doctors and seem to put the entire blame on the latter when something against our hope happens. While we have survived the life threatening battle, everyone is unique and there are many factors accounting for survival.One common goal we share here is to help and support others with what we have experienced. Yet we must be cautious about our response and 'advice' because we may 'hurt'or mislead others unintentionally, especially on very sensitive issues like prognosis.

Karen stage 4 tonsil cancer diagnosed in 9/01.

No Patty I don't feel confused....I stand by what I said in my previous post. Others have expressed contrasting opinions but it is easy to look back in hind sight and say what "should have been done" to spare pain and suffering, the problem is we nor the docs know when the painfull procedure is going to cure or when it is going to make things more painfull. I do not regret one minute of my painfull and difficult treatment protocol. Tragically some of us will not live our "normal" life span. It is, in my opinion, not a good practice to always accept that doing nothing is the only or preffered course. Some of the latter posts imply that doing nothing (or doing something less drastic) might have been the right thing. I cannot speak for them (and I really feel for their loss) but I will say I personally will not accept "do nothing" especially when vanity is the core reason (as in the treatment would be disfiguring so we didn't do it) I'll worry more about a good looking soul rather than a good looking body in a coffin. Frankly second guessing is always a potential when dealing with such important decisions.

To the new comer here with a recent diagnosis, it would be tragic if they read these posts and decided to not proceed with treatments.

Yes I have found a few flaws in the system, some rather serious others merely inconvenient. but if you give up too soon......

Hi, Patty, on good days I`m only slightly confused, bad ones I bounce off the walls, so I don`t mind being called confused. I`m going to stick with what I said and also agree with Mark. Sometimes, no treatment is worse than what can be done. When Frank had his first surgery our doc told us even if they didn`t get all the cancer and he ended up with a permanent trach and feeding tube, his quality of life would be better, and it has been, he can`t speak anymore or eat, but he is much more comfortable, and we have both adapted to the changes. One last note, I have address, liking a doc does not make them a good doc, Frank nearly died because he trusted a doc. I know it`s all your decision, but believe me, disfigurment is really a small price to pay in the scheme of things........Prayers, Dee

P.S. (I edited my own post with this):
Patty, I am not suggesting that I know what you should do in your giving care and support to Joe. I certainly am not suggesting that I know anything more than his doctors. This web site is watched and read by many more people dealing with these questions and frustrations. Some are deciding what they should choose as a course of treatments and occasionally the medical advice they have received seems incorrect (or incomplete). The most common general theme here is advocacy and information. Missed or delayed or incorrect diagnosis is a big reason these cancers get to be stage 3 or 4. Incomplete treatment protocols (like surgery only) because of a doctors limited experience is possibly why the survival rates are not higher. My post is as much (or more) for them to ponder as for you.

You have done very well for Joe and he is better off because of your efforts. I don't want you to think otherwise.