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.
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.
Hello Everyone,
Please,first of all let me say,I am deeply saddened if I have offened any of you.The web is a fantastic place to gain and share information,but the personal aspects are sometimes lost during written translation.If you were talking to someone face to face the emotion shows in your voice and actions,but when you're writing it sometimes can be translated in a different way.I wish that I was a more eleoquent writer but I'm not.If I come across as being insensitive it's because I can't find the words to say what I truly feel.I did not mean in any manner to suggest that any of you are confused.I meant that I was not being as clear as I wanted to be.I was confusing my own topic.I can't express to you how much I appreciate all of you taking the time and effort to help me with my own cause when all of you have gone through so much.
All of the information that you have shared has been very helpful.I have come to the conclusion that there is no right answer to my original post.
As you all can see there have been conflicting opinions and everyone is very passionate about the "stats and prognosis" numbers.I have learned a valuable lesson in regard to these numbers and I will steer clear of them in any future posts.I based entirely to much on them.There is no clear cut way to do what I feel I need to.If this were my choice,I would do everything that can be medically done to prolong or improve his life.My children are devasted now and he's only been in the hospital for 8 days.I understand that the doctors can give no one guarentees,because there aren't any for anyone healthly or otherwise.I believe Joe is deriving his opinions from watching his Mom die of lung cancer.She suffered from diagnosis through the end of her life.He stated back then to us that if he was ever in a situation like this he didn't want to suffer like that.I know what you're all thinking,that he may be different.The little bits and pieces that the doctors have told him suggests that he may.Although,he can't talk right now,we still talk using a tablet.When I visited last night he told me again that he's tired of being in pain.
They are sending him for blood tests today and a MRI because his skin tone is yellowish.They had to replace the peg tube twice while he's been in the hospital.He was supposed to come home yesterday but they deceided to keep him in for a while longer to run more tests.This is what I was talking about before the doctors are not saying what they know.When the surgery turned out not to be as extensive as they first thought,the surgeon said he would remove the trach tube in 24 hours.From there it went to I'll remove it in a week,then it went to a month.Now it's undetermined.
These are the reasons that I'm so confused.Everytime I believe we have a set game plan it's changed.I'm sure this has happened to many of you.I think I've written a book here so I'm going to close.Again,I want to thank you all for your interest and I am very sorry if I have offended any of you it was truly unintentional.
Thanks Again
Patty
Patty,you didn`t offend me, most everyone here on the Board know that I can be a blithering idiot at times...........I read your last post, so now I`m probably going to open another can of worms......you mention your husband is tired of being in pain.........there is absolutely no excuse in the world for him to be in pain, especially if he`s in the hospital. Either he has to tell the staff or you have to yell and scream..........there is absolutely no reason, there are plenty of drugs out there for the pain. When Frank started rad 6 wks ago, the doc kept him in the hospital for a week simply for pain management.Lets face it, being in severe pain does make you want to just quit..........he needs to be pain free, and that can be done..........Love and Prayers Dee
Hi Dee,
Thank you for your understanding,I have come to understand that this is much bigger than me.I've been trying to conquer
the world by myself.LOL
He's on a pca pump with morphine sulfate.They have also been adding a little something extra at night for him to sleep.The majority of the pain is surrounding the peg tube right now.His stomach seems to be the worst.The first 2 pegs weren't sealed right and air was getting into his stomach.They think there is another probelm that needs to be addressed.They've stopped his tube feedings and he's just having glucose in his IV for now.He's scheduled for a bunch of tests on Monday.The pain from the actual surgery seems to be minimal compared to his stomach.
Patty
Dear friends,
Last night I re-read this entire string of posts again
Hello Everyone,
Rosie,
I in no way took your post as you think.I think we all got caught up in the moment,everyone has their own views and is very passionate about them.I deceided that the choice on what he wants to do is going to be solely up to Joe,I will listen to him and try to help him if he doesn't understand the things that the doctors are saying but I am not going to interject my own feelings into them.I thought it was my duty to do so but I now understand that it isn't.The only thing I'm going to ensure is that all the doctors are as frank with him as they possibly can be,and let him make his own choice of free will.
Also,there is not an issue about disfigurment.He was going to allow the surgeon to remove all he needed in the first place.He understood what he would have looked like.His answer was I guess I won't be posing for playgirl anytime soon!!!So that has nothing to do with it.He wants just enjoy with quality the life he has left regardless of however long that is.I know that is very hard for some of you to think of.We are taught as a soceity to preserve life to all extremes.It seems I've answered my own question after all,it is all about free will.So Rosie,please don't second guess what you've told me it was very valuable as was everyone elses input.So,You're right let's stick to PICC lines and peg tubes and all the rather mundane stuff and the rest will take care of itself.
Thank you all again for all your thoughtful and insightful responses.I feel better right now than I have in 2 months.I feel a huge weight lifted off my shoulders.
Patty
