Hello everyone,

I've addressed on a few occasions about my father in law Joe's condition and subsequent surgery.He was to have this major surgery to remove so many parts of his mouth and jaw I lost count.Well on the day of surgery which we expected to be around 15 hours the surgeon came out in about 6 and said there would be no need no plastics to operate because he "got all the cancer".It turns out he removed the tumor from left side of his tongue and the left side of the tongue itself and that is all he did beside the left radical neck dissection.Now,I was thrilled that it hadn't turned out to be the monster surgery that he had planned and that he had a great chance to be cancer free.We were all thinking this way until today when I finally bumped into the doctor in the hospital.He said the reason that he didn't take his whole tongue and disfigure him was because he felt he doesn't have much of a chance.I remember him saying after the surgery about he may have found 2 different types of cancer in his neck and that his trach tube would be in for a month but I must have missed the part about him not having much of a chance.He says he has a poor prognosis and a 40%chance of living a year and it goes downward from there.They have not told him yet and asked me not to.Joe thinks he's basically cured and they are blowing sunshine up his butt.Has this happened to anyone else and has anyone not have a doctor be straight with them I find this morally and ethically wrong but anyone else I've spoken to in the medical field says it happens all the time.I would just like some feedback if anyone is willing to share.

Patty

Hi Patty, I have been following your posts for a while but couldn't think of anything to add to the other replies till now.

I personally haven't had a problem with a Doc not telling the whole truth. I do get peeved when they do things based upon the statistics (as in it's terminal anyway). In my mind that creates a catch 22:

The statistics are bad because nobody tried harder because the statistics are bad!

Please consider another opinion! from what I have read even the worst cancers have had survivors. Joe might be one that beats the odds. Please look through the archives and see that we have posted alot about statistics. They simply do not apply to the individual. It is impossible for the Doc to know for sure what will happen and to withhold any treatment options because of his pre-conceived notions is unethical.

Life is "terminal" does that mean we should always do nothing?

Yes melanoma is perhaps one of the worst but he isn't gone yet. Please seek additional opinions.

Take care and try to have a special thanksgiving

Hi Patty,
Yes I've come up against doctors like this, but it may not be as clear cut as it first seems, doctors know we are all different and we all have a different level of "Need to Know" My husbands level of a need to know is much lower than mine, and I have had to learn to respect that, so the doctors have a steep learning curve based on the individual, when Joe asks the right questions of the right person, at the right time it is more likely to result in the truth, but doctors know if they try to give you too much too soon you will crumble under the load. Don't know if this will help at all, but you are both in my prayers and thoughts.
love and hugs Helen

My team of doctors have never discussed statistics with me. I remember asking at that first, terrifying appointment but one doc just said that he could "spew" a bunch of numbers at me but they wouldn't mean a thing. He told me, point blank, that this cancer would either kill me or they would kill "it". He told me to get strong, get ready to fight, because they planned on winning this battle. So, I left there figuring I had as good a chance as anyone of beating it all. If I were in your father in laws position, or yours I should say, I would get a second opinion.

Patty,

I agree. Get a second opinion. That is the one thing we didn't do often enough that I will always regret. Of course, in Heather's case, the docs were all so positive about her good chances that we didn't even think about getting a second opinion. After all, they were telling us what we wanted to hear, at least until they found the second tumor. Then they changed their tune. (Maybe they were just blowing smoke right from the beginning, but I don't think so.) Anyway, it is possible that there truly is nothing left the docs can do for Joe, but I would want to hear that from more than one doc before accepting it.

About not telling Joe the truth, my gut feeling is that he should be told. But you know him better than the docs. Do you think he would want to know? Of course, if you decide to get other opinions, you will have to explain at least some of it to him. He certainly would question why you would want second opinions if he thinks he is "cured". It's a tough call, but at some point, he's going to know anyway. Will he be angry because he wasn't told sooner so he could prepare himself? There may be things he will want to do if he knows the end might be near. I personally feel he needs to be told the truth. If it were me, I would want to know. Would you? Maybe if you put yourself in his shoes, it will help you decide what to do. I'm so sorry you have to make this decision in the first place.

Rainbows & hugs,
Rosie

Patty,

I guess I have to chime in on this one. I agree -get a second opinion!!! I don't remember from previous posts - but you are so close to a cancer center? They can give you a multi discipline diagnosis from a tumor board.

If I'm wrong and that's where you are going now I apologize up front. But as Rosie says a second opinion is a must. Take it from someone that was patted on the head (like a good girl) and told I was going to be just fine. (NOT)

Remember also, although not for everyone there are clinical trials available, also.

Take care and I wish you and your father in law the best.
Dinah

Hi Patti,

I see you are from NJ also, where did he have this surgery done? Was it at a major cancer center? Depending where in the state you are there is FOX CHASE in Phila and MSKCC in NYC and JOHNS HOPKINS isn't that far away. I'd definitely get a second opinion. Having said that, however, I
was not treated at any of these, but at U of P. I had never heard of FOX CHASE until recently. Does this particular cancer not respond to radiation or chemo? Why are they not suggesting that?

I find it appalling that that had to 'bump into the dr' to get this news. When had they planned on telling you? I also was never quoted statistics, but then was never in a situation where the expected a reoccurence.

I too think Joe should be told. Only he can know what agenda he wants to follow if his life is suddenly to be shortened. I would certainly want to know so I could make decisions about what treatment I would follow or possibly none, depending on what was involved.

Take care,
Eileen

Hi everyone,

First of all to Eileen.He is being treated at Cooper Cancer Institute in Camden.When the oral surgeon that finally recognized what he had and the serious nature of the situation. He wanted him to either go to either Cooper or Sloan Kettering.He leaned more toward Cooper because of a particular head and neck oncology surgeon there.This doctor has had other patients with oral melanoma and has written articles about it.So,since he had been to 5 doctors previous to this who just gave him antibiotics thinking that his tumor was an abcess. We realized he needed to be in a center that not only deals in cancer but oral melanoma.We received his path reports back today and out of the 32 nodes they removed from his neck 20 of them had mets in them.The report goes on to say that 10 of the nodes were completly taken over by the cancer.My whole point with this is that Joe has expressed that he does not want his quality of life to be diminished if he may only have a short time to live.He would rather enjoy the life that he can have without the devastaing side effects of chemo and radiation.I am torn with all of this because yes,he may have an extented period of life once the treatments are done,but at what cost???In regard to the second opinion,lets put it this way,he filed for SSA&SSI 2 weeks prior to surgery and he's already been approved.It seems they feel after reading all his medical materials that there was no time to waste.I have never seen the government work so fast!!!They call it a "terry case".I asked the medical oncologist when someone was going to explain all this to him.They want to wait until after his out of the hospital.If any of you can think of something I should be doing or if I'm missing a step please let me know.


I wish you all a very Happy Thanksgiving,
Patty

Hello All,

I have already written an email to Patty on this subject so this is not addressed to her.I have tried like the dickens to stay away from this site because I get extremely frustrated, and I hate to say things that may anger people.I am no longer able to contain myself so I hope you all take what I'm about to say in the manner it was intended.


You are all giving her great advise on the caretaker and survivor view on oral cancer.I wish I would have known that this site was here when Tony was going through his illness.The major probelm I have is that you're all trying to guide her on how to deal with oral melanoma.I have already searched this site for myself and the only discussions about oral melanoma have been from Patty,or myself.In retrospect this means that NONE of you have dealt with it.It is not SCC and stats and predications and all it don't apply.I'm fully aware that they lump all oral cancers into the same group but it just shouldn't be so.


When my Tony was dealing with this horrible disease,I was like a crazy man trying to educate myself with every piece of available information I could find.To my dismay there are only a few journal articles and papers evn written on this subject.I will give you all one stat I have come across.The odds of getting oral malignant melanoma are 1 in 2 million cases of recorded oral cancers.There has never been a recorded case of anyone living past 22 months regardless of which stage they have.So,since I know you all are probably cursing me right now I believe that Patty can handle these things.She is as just as anxious for any kind of information that she can get a hold of.The doctors are side stepping the issues with her and her family because they are clueless!!!!!There are going by the little that is documented and it isn't enough!!

I'm very sorry that I am coming across so boldly but if someone has clued me in on the fact that Tony didn't have a chance from the second he was diagnosed then we would have done things entirely different.I invite you all to log on to www.emedicine.com in the search terms input oral malignant melanoma.This is the most extensive article I have found, and maybe you'll understand what we're dealing with a bit more.I do not mean to diminish anyone or the suffering that you or your loved ones have dealt with.Oral cancers of all kinds are not pleasures to cope with.I appauld all of you who have endured the treatments and the pains and are living wonderful lives now.I wish you all many happy days free of pain and worry.Again I'm sorry if I came off to strong maybe I shouldn't have done this but I felt I had to.

Happy Thanksgiving to all

You are correct in stating that most oral cancers are not melanomas which are better known when they affect they exterior skin of the body. ALL melanomas are highly deadly, but your statement that there is no record of anyone surviving more than 22 months is just plain wrong.

Oral melanoma often is overlooked or clinically misinterpreted as a benign pigmented process until it is well advanced. Radial and vertical extension is common at the time of diagnosis. The anatomic complexity and lymphatic drainage of the region dictate the need for aggressive surgical procedures. As with all oral cancers it is finding it at such late stages that impacts the death rate so strongly.

The prognosis is poor, with a 5-year survival rate generally in the range of 10-25%. The median survival is less than 2 years. As a result of the absence of corresponding histologic landmarks in the oral mucosa (i.e., papillary and reticular dermis), Clark levels of cutaneous melanoma are not applicable to those of the oral cavity. Conversely, tumor thickness or volume may be a reliable prognostic indicator.

The relative rarity of mucosal melanomas has dictated that tumor staging be based on the broader experience with cutaneous melanoma. Oral melanomas seem uniformly more aggressive and spread and metastasize more rapidly than other oral cancers or cutaneous melanomas. Early recognition and treatment greatly improves the prognosis.

In one large study (1074 mucosal melanomas), when lymph node status was known, 30% of patients with mucosal melanomas had positive nodes. When lymph node metastasis occurs, the prognosis worsens drastically. For instance, the 5-year survival rate in patients with positive nodes is 16.4% as opposed to 38.7% in patients with negative nodes.

Those that survive longest are found as early superficial tumors, and treatment is frequently limited to COMPLTETE excision of the tumor at that early stage. Anything less allows recurrence. Chemotherapy drugs have not proven widely helpful, although there are anecdotal reports of success with interferon based therapies.

THE HARD FACTS.

*The prognosis for patients with oral malignant melanoma is relatively dismal.
*Early recognition and treatment greatly improves the prognosis.
*Late discovery and diagnosis often indicate the existence of an extensive tumor with metastasis.
*After surgical ablation, recurrence and metastasis are frequent events, and most patients die of the disease in 2 years.
*A review of the literature indicates that the 5-year survival rate within a broad range of 4.5-48%, but a large cluster occurs at 10-25%.
*The best option for survival is the prevention of metastasis by surgical excising any recurrent tumor.
* Researchers Eneroth and Lundberg state that patients are not cured of oral melanoma and that the risk of death always exists. Long periods of remission may be punctuated by sudden and silent recurrence.

That you are frustrated with lay people trying to offer help to others is understandable given your own loss. This is especially pronounced when current medicine is dealing with a disease for which cures do not exist. With the exception of the error in statistics, there is nothing wrong with your post, or even the tone of it. We all share your feelings when we are up against odds like these, whether they are due to a late diagnosis of a SCC, or the lack of medical options with oral melanomas. Our loved ones are too frequently taken away from us, and with all we know about medicine and cancer, the answers are frequently too few or non existent.