PamT Posted September 22, 2004 Share Posted September 22, 2004 My husband, age 58, was diagnosed three weeks ago with sclc, stage IV, with met to pancreas, liver, peritoneal cavity and spine. Our oncologist says chemo is not therapeutic, only palliative. Richard has had chemo (cisplatin and irinotecan) once weekly for the past three weeks and is now on a two week off period. The oncologist has planned this protocol for the next five months. Richard is not tolorating the chemo well and is sick all of the time with diarrhea, vomiting, dizziness and headaches. He is cold and sleeps most of the time. He is sometimes confused and is no longer able to concentrate well. Although the doctors have been very honest with Richard, he has not "heard" the prognosis of no cure for him and a limited life expectancy. The oncologist tells us that chemo may add two months to his life. Hospice is already involved, and their advice is to be honest with him. When do you decide to stop the chemo which is so devastating to his body? He has lost 60 pounds since May, and eating is very difficult for him. I don't want to take away all of his hope, as I know that his attitude toward the disease is so important. I pray for a miracle and believe miracles do happen. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 22, 2004 Share Posted September 22, 2004 I don't know the answers to your questions. I just wanted to offer you a big electronic hug. It's all I have, but I am moved by your pain. Curtis Quote Link to comment Share on other sites More sharing options...
paddy Posted September 22, 2004 Share Posted September 22, 2004 Hi Pam! I haven't seen a post from you before so I presume you are new here. Welcome to the place where no-one really wants to be! This is my advice to you. If this chemo isn't working, and It doesn't sound as if it is, and if your oncologist isn't being aggressive in fighting this thing, take the bull by the horns and get a second opinion. My husband would never agree to it and I now wish he had. Just don't give up and don't let him give up, just keep fighting. When my husband was diagnosed with LC, his pulmonory specialist came to see him in hospital, (after he had had two litres of fluid removed from his lung,) and told us the bad news. I immediately said, "OK now what do we do now" meaning, "When do we start treatment?". The ps replied, Take him home and make him comfortable I suppose"! I honestly thought David was dying right then. The oncologist was a little more encouraging in that he offered "salvage" (how dare they use that word,) treatment! Well, that was over a year ago and tonight he is sitting here watching T.V. and working on a model locomotive. OK, so he has been through a great deal, and he is not cured, but he is still here and we are making the most of every minute. My thoughts and prayers are with you and your husband, Love, Paddy Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 22, 2004 Share Posted September 22, 2004 Pam, The advice for a second opinion is valid, Please, involve your husband in any decisions, which are his to make. Tell him this doctor thinks he can buy time but no cure. Ask him what he wants to do. Respect his decision. I feel your pain, and I know that you mean well. God bless you all, and give you strength to deal with this terrible disease. CANCER SUCKS!!! XOXOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 22, 2004 Share Posted September 22, 2004 Hi- I agree, you should get a second opinion. Good luck!!! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 22, 2004 Share Posted September 22, 2004 Welcome! I agree you should get a second opinion, maybe even a new Oncologist. I would not want an onc treating my wife who did not give her hope and was not doing all he or she could to lengthen her life. If you have guys on the football team whose hearts are not in the game, you lose the game. My two cents. Don Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 22, 2004 Share Posted September 22, 2004 Welcome! I agree you should get a second opinion, maybe even a new Oncologist. I would not want an onc treating my wife who did not give her hope and was not doing all he or she could to lengthen her life. If you have guys on the football team whose hearts are not in the game, you lose the game. My two cents. Don Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted September 22, 2004 Share Posted September 22, 2004 I think the idea of a second opinion is always a good one. But your post left me with a question rather than answers. What does you husband want to do? It is, ultimately, his decision on how to treat, or not treat, this disease. If his wish is to continue the fight then I'd suggest getting a better team together. Folks that are willing and able to provide the treatment, and hope, that he needs. If, however, his choice is to walk "the path less travelled" then he needs folks around him who support and understand that decision. Praying that whatever the decision might be that the road ahead is smoother than has been travelled so far. Dean Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 23, 2004 Share Posted September 23, 2004 OK, this may get me thrown off this board but here goes..... Why does everyone think this oncologist should be fired? It sounds like he has been very honest. The treatment he is using is the most active known combination for small cell lung cancer and is very aggressive. I did not see anywhere in Pam's post that this doctor has "given up". On the contrary, he appears to be hitting this cancer with both barrels. I am not in any way opposed to second opinions. I have many patients who have sought them and I have rendered them myself many times. But if you are with a doctor whom you think is being honest and is treating you well, why leave? I have had patients who went on the "second opinion tour" seeing multiple doctors I think sometimes trying to find someone who will tell them what they want to hear. I took care of a 50 year old woman with metastatic breast cancer which had spread to her liver and bones. I explained that we could treat her cancer and often can control it for quite a while but that the treatments that I could offer would not cure her cancer. She went to a clinic in Houston (not MD Anderson) after she called and they told her they are curing 75% of patients with metastatic breast cancer. They required payment of a large sum up front for their treatments and she saw me periodically over the next year as I administered some of the treatments they recommended and ordered her scans so that it wouldn't financially ruin her. She in the process did cash in a large portion of her savings (which was meant for her children's college) and took out a second mortgage on her house. She passed away about 18 months later. Before she died, she was told by the doctors there that she must have a highly unusual form of breast cancer because they generally have a very high cure rate for it no matter how far it has spread. This patient left my care because I didn't offer her as much hope. In my opinion, the clinic that did treat her didn't offer hope, they offered lies. As an oncologist, it makes me feel so conflicted. I think that I have become less honest with my patients. I feel pressure not to tell terminal patients that they are terminal because it is too "negative". I feel obligated to give patients toxic drugs that I know won't work, to commit them to spending time dragging in and out of the clinic and hospital that they could be spending with their loved ones in the spirit of "not giving up". Sigh, sorry guys, just a bad day at the office. Pam, 3 weeks is not enough time to tell if the treatment is working for your husband. It should work but it might just be too much for him right now. Many of the symptoms you are describing are typical of irinotecan. You might ask the doctor if he would consider reducing the doses a little which can ease the side effects without necessarily compromising the efficacy. He has been very sick since May because of the cancer. If these drugs can beat it back (which they usually do) he may and probably will make a remarkable recovery. Maybe not forever but maybe longer than anyone would predict. Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 23, 2004 Share Posted September 23, 2004 Dr. Joe- You said that with alot a feeling. I want honesty! If I'm terminal, I want a second opinion! You truely seem to care and wish I was closer to you so I could get a second opinion from someone who really seems to give a damn about people. Your intitled to your opinion and your not going to get "thrown off", I need you and others need here need you, you've given me hope! I wish my Oncologist would given me some encouraging words. Quote Link to comment Share on other sites More sharing options...
paddy Posted September 23, 2004 Share Posted September 23, 2004 OK Doctor Joe, The last paragraph in your post is what I would have wanted to hear if I was Pam or her husband. I understand that although there is (to-date,) no cure for this disease, there is hope for "more time" and "a better quality of life. Pam's husband however doesn't seem to be improving with the chemo he is on now. The oncologist says this regimen must go on for six months. I reccomended a second opinion because I am sure there must be a chemo out there that doesn't make him feel so ill. Where is the "quality of life if", you feel so darned awful all the time. Now that you have explained that . three weeks is not long enough to know what change the chemo will make I realize I have been hasty with my advice. I do know however that my husband felt a lot better after two chemo infusions, even though there wasn't a great deal of shrinkage at the end of the whole session. Respectfully, Paddy Quote Link to comment Share on other sites More sharing options...
karenl Posted September 23, 2004 Share Posted September 23, 2004 I think Joe is right in that we have a tendency to keep seeking opinions until we are told what we want to hear. I know that my family have spent the last twelve months searching the internet for treatments/therapies that might help my Mum, and when we find something that makes us hopeful, we tend to believe the supportive evidence, and ignore the evidence that suggests it won't actually help (well, I do anyway ). Now, that being said, my Mum has remained asymptomatic 14 months post diagnosis of stage IV NSCLC. Her cancer has spread somewhat, but she remains fully functional and otherwise healthy. I like to think that some of the supplements she is taking, together with her phenomenal attitude, have played a part in maintaining her health status. My parents understand the implications of the diagnosis. They don't really expect ANY treatment (conventional, adjunctive or alternative) to eradicate the cancer, but what we are hopeful of is turning the cancer into a chronic condition that can be managed for a long time, and ensuring that Mum remains well for as long as possible. I think that doctors must always leave a patient with hope. Following the final staging of my Mum's cancer, she attended an appointment with her chest physician. She went in with a very positive attitude, and keen to fight, but he suggested that she could simply go home and wait until symptoms developed for which she could receive palliative treatment. As I mentioned, Mum is in otherwise excellent health, and this fact, together with her positive approach, make her an excellent candidate for treatment. She came out of that appointment feeling very deflated, but with an appointment with an Oncologist who tends to treat fairly aggressively. My belief is that the physician should have taken Mum's lead and encouraged treatment without 'dwelling' on the fact that her condition is considered terminal. She already knows that. What she needed from him was some hope. I think it is totally abhorrent to take all hope away from a patient, but at the same time, honesty is also an important part of the doctor/patient relationship. It's a very fine line, and I don't think there are any easy answers. Karen Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 23, 2004 Share Posted September 23, 2004 I hope that I'm not making the impression that I would tell a patient to just go home and get their affairs in order, that is far from the truth! In that case, I definitely think a second opinion is warranted (althought there are times when getting affairs in order is not bad advice). I think quitting chemotherapy is a hard decision to make and Paddy is exactly right, maybe for Pam's husband the question should be can I do something that doesn't make me so sick? But what do you do when the doctor tells you it is time to quit chemotherapy? Do you think that it is ever appropriate for the doctor to tell a patient that? This is one I constantly struggle with. There are lots and lots of chemo drugs out there, I can always find one more drug. But what if we get to the point where it is fairly obvious that they are no longer going to work? Is it my responsibility to let the patient know that? Is that taking away hope? I sometimes feel that I am crossing over the "doing harm" threshold. One of my partners takes care of an elderly patient with testicular cancer. This is usually a very cureable disease. This is the exception to the rule. He has battled this over the last two years and during that time he has been through 5 or 6 different chemo regimens and several courses of radiation. He has lost his kidney function (on dialysis), is completely bedridden. He is unable to eat at all, he has a gastric tube that is feeding him. He is no longer able to live independantly and is in a nursing home. Radiation to the abdomen was completed one week ago complicated by severe diarrhea and nausea resulting in hospitalization. Scans obtained during the hospital stay show his cancer is growing rapidly just outside the radiation field. My partner has told him that he can no longer treat the cancer and that more chemotherapy will only worsen his quality of life. I was on call this weekend and so met with the patient and his family in the hospital. His son told me that his doctor has "given up" on him and would I give him more chemo. There is always more chemo. There are drugs I could give this man. They will not work against his cancer and in his weakened condition I will definitely make him very sick. How do you feel about this situation? Do you think that if there are drugs that have not been used, they should be offered even if there is no evidence they will be effective? Would advising against further treatment be giving up? Or does "never give up" mean receiving chemotherapy until the very end? Would it be wrong to recommend complementary therapies or alternative practitioners even if I don't have much faith in them? Quote Link to comment Share on other sites More sharing options...
paddy Posted September 23, 2004 Share Posted September 23, 2004 As a caregiver, I will fight as long as my husband wants to fight. When he chooses to stop, I will respect his choice. From then on, I hope I will be able , (with help from hospice,) to keep him as comfortable and peaceful as possible. Paddy Quote Link to comment Share on other sites More sharing options...
karenl Posted September 23, 2004 Share Posted September 23, 2004 Joe The doctor/patient relationship is very complicated. Some patients view the doctor as 'working for them' and that the patient is therefore in control of treatment decisions etc. Patients come to you for your expertise, and your opinion is therefore extremely important. I do believe that the final decision ultimately belongs to the patient with regard to the continuation or otherwise of treatment, but they certainly need to be made aware of the likely outcomes of that treatment. If a patient is already extremely incapacitated, and, in your opinion, unable to tolerate the administration of toxic therapies, then they need to be made to understand the likely consequences of continuing with treatment. I guess the key word here is 'likely'. I'm sure that there are patients who were apparently on death's door, and finally received a chemo that did the trick for them. But these cases are rare. I think in instances like these, statistics might actually be helpful in assisting patients and families decide about the appropriateness of continuing with treatment. Each patient will be different - some will want chemo even if the likelihood of a positive outcome is miniscule. Others will consider the quality of the time they have left to be more important. That is a decision only the patient can make. With regard to alternative and complementary therapies, I think that patients can be encouraged to consider options that have been shown to be harmless, but which MAY help to control tumour growth as well as symptoms of both cancer and treatment. There are lots of these around. There is obviously little in the way of empirically based scientific research to support the use of many of these therapies, however there is loads of such data which indicates that traditional medicine is of little benefit in the treatment of advanced NSCLC. I do not advocate alternative therapies in preference to conventional medicine - but I don't think it can hurt to consider the alternatives, and it might just help. Searching for gentler therapies has the added bonus of once again providing some hope to the patient and their family that they may at least improve the quality of their life while they are battling cancer. I think the fact that you are asking these questions is to be applauded. Your patients are lucky to have you. Karen Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 23, 2004 Share Posted September 23, 2004 Joe, I appreciate your opinons from your perspective. Makes me think broader. No way would we toss you off here. Now that we've got you, you're stuck with us! Your approach to your patients is hopeful -- for quality time, for more time. That is what I seek for Lucie. I know to whom you refer here in Houston and I think he is a quack -- I would not recommend him to anyone. The second opinion or new onc, in my opintion, is not one of those types. And I agree with DeanCarl that it is ultimately the patient's decision, and should be. Hang in there with us us, doc, and we will all be better off. Don Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 23, 2004 Share Posted September 23, 2004 Remembering back 9 years ago when I did my chemo, I recall this elderly (94) year old lady in the room next to me crying, and whaleing and pleading to PLEASE, PLEASE stop doing this chemo. Her family wanted her to have it and they insisted she continue on with it in hopes she would beat the cancer. (breast cancer with many mets) I cried for that lady, because all she wanted to do was die and go be with her husband, is what she told me one time. She got SOOOO SICK from the chemo it just broke my heart. Dr. Joe, I wouldn't want to be in your shoes for all the TEA in CHINA! (and I'm a tea drinker) That has to be a very hard call to make. Without it sounding like the Medical Family is giving up. Hense the fact with our board here why we have a forum called (The Path Less Traveled) For me I want HONESTY UP FRONT ANSWERS! But, then again, at this stage of the game, I know to much about this disease and I know what my chances are being a ONE LUNGER what options are available to me. In my humble opinion, you are a DOCTOR, and I don't think that is spelled (GOD)! You can only do what you can with what their is to offer in the Medical Field and having compassion is one very STRONG WONDERFUL quality you have, but some doc's don't have that, but that's not to say they aren't great doctor's. So, on that note, is the glass half empty, or half full, do we want QUALITY OR QUANTITY? Oh so hard to answer!!! I also agree that three months isn't a very long time in doing the chemo. I'm going to take a flying guess here and say, Richard didn't start his chemo the day he was dx.d did he? I also wish to say that even I have never heard my doctor's talk about me being cured, and I'm cancer free now 9 years. Can cancer be CURED? It's not the flu or a cold, it's the big C! Do doctor's even offer a CURE today with cancer patients, using that word? I'm so sorry to hear that poor Richard is doing so poorly. It is so sad and so heart breaking. For what it's worth, I went through the hot and colds during my chemo. One minute I was FREEZING the next I felt like I was on FIRE! I wish you the and Richard the very best. I'm so sorry you have to go through this. I'm glad your a part of our family here. If Richard can, maybe he should be the one to call the shots here. I think if that were me, I would want to be the one that has the say to what I want to do or not do. (if he is able to)! Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 23, 2004 Share Posted September 23, 2004 I have prefaced many a post the way you did, Joe I wrote a response to this earlier, but then didn't post it because I wasn't feeling well enough to endure any fallout or since a recent poster pmed me telling me of the secret underground list sent to him when he was a new members, I didn't want to have to imagine it. But your response gave me the courage, I guess. Here is a part of what I wrote: I guess this is the night for unpopular posts--StandforHOPE thinks she just posted one. I keep coming back to this thread and wondering what people are seeing that I don't see. What is the indication here that the Dr is not doing his or her best to treat this patient? The answers don't even seem to be addressing this poster's question. She is saying that her husband is not hearing that he very likely has a terminal illness. Hospice has been called in whether or not any one of us would call in hospice or not. This poster is asking totally different questions than what people are replying to. All treatment for late stage IS palliative. Sure remissions can and do occur sometimes for long periods of time. There may be "cures" that I am not awared of. But look at this board and you will see that it is most often not the case with late stage. The people who die are not anomolies. One thing I have noticed is that Drs seem to use language that symantically blames patients ie "The patient failed to respond to ....." On the other hand, patients and caregivers/ family members seem to blame Drs when they aren't hopeful enough even in the light of a situation that may well not be hopeful, long term. I think that we all want to hear what we want to hear. Myself included. But I also think that we can eventually find someone who will take our money--and give us little in the end and also the worst there is of the standard medical treatments. I also know that many of us arent going to get the best that the medical establishment has to offer. I think that is wrong, as well. I remember Mr. Ry's Dr telling them that he didn't want them coming back later and saying, "Why didn't you tell me?" I have to agree with that. Even though as it turned out , quite happily, that the Doctor was very wrong about his prognosis. This reminds me of the field I was in. The blame game. Is it the student's fault that they aren't more successful or is it the instructor's fault. I have sat in room's in too many meetings to even count where the lack of virtue and the hoplessness of students is bandied about. Or the failure of the high schools. High school teachers blame middle school. Middle school blame grade school. Grade school blame parents or pre-school etc. etc. Parent blame schools. Students grow up, go to college and blame instructors. ( I took out a lenghty example of a student who was smart but because of a learning disablity could not write ONE word and who was getting ready to graduate with a certificate in building trades, but had not passed my class after three times enrolling in EN 101. I refused to pass him. He was "advised" to take someone else who passed everyone. He refused. In the end, he did graduate without the class and a new class was created for certificate students in fields not likely to require writing tomes, lol.) It boiled down to what would preserve HIS dignity? Continuing to lie to him a bout something he knew already. Further, for all those years, nothing was done to address his real problem, which could have been addressed had people been honest. (He could have gotten a machine that would basically write what he said.) After all, he WAS smart. Very smart. It also boiled down to what would be the best use of his time? Sitting in classes that he knew he wasn't going to pass, making him feel badly about himself, making him devise ways to hope he could pull another one off, after all he had done so in the past, or hoping someone in his family or school administration would pressure someone--since for years and years NO ONE was addressing his real need--how was he to even know what that real need was? He and I did work on getting that machine after the day I first saw his writing sample and talked with him about it. But by then, the wheels of the state move much too slowly. Though it never was an intended result, lots of blame got thrown around before a solution was devised--one that did not help his writing but may have helped others--I don't know. I hope people can see the analogy with many of the details taken out. All I know is that HE was happy that someone had done something to address the issue that HE had. He finally had it from the professionals that he WAS NOT DUMB as it had been assumed, something he furiously attempted to prove -an even longer story. Thus, the inital question of Bill's wife also leads to this: what DO people with a terminal illness need? I assume that people with an often short term terminal disease need many things and not all people need the same thing. Each of us has a different set of "final affairs" to get in order. It's not all just about wills or final arrangements. Honesty is hard to come by. We don't want to hear it. Oftentimes, I don't want to hear it. But without it, how can ANYONE make an informed decision? How can the patient make a decision if it is only the family members and doctors who have the information the patient needs to make a decision? Who is protecting who, I often wonder. I can't begin to tell you of the Pms I have received from caregivers who feel devastated that their medical teams have continued to treat their loved ones aggressively from the time of DX to their demise without really one good day of quality of life. They don't often post that--fear? I can't tell you of the Pms I have from survivors who feel they themselves have failed since treatments haven't worked for them. They don't understand why the treatments are not working. I don't have a clue, other than some pathology is more aggressive than others and that bodies differ. They don't often post that--fear? I can't tell you of the PMs I have gotten from family members who feel bad that they believe, in the end, that they forced their loved ones to endure treatment after treatment until just days before their demise. They don't often post that-- fear? Some day I may have to write my story. The story I don't post. I may have made the wrong decision, since the last two weeks have shown a rather dramatic decrease in my physical abilites. I now park at 7-ll, the space closest to the door and hope my legs are able to withstand buying cat food. The grocery store looks formidable. I have some decisions to make. Again. All I can hope for is the strength to both face the decisons and the consequences. The emotions are fragile when the body is weak. I forgot to account for that. To answer the original post. Hospice has social workers and clergy that can help decided what to do and in some cases they will help you by doing it or by being with you. YOur husband may know more than he is letting on. He may hear and by presuming not to hear, be telling you that he is in the fight. He may also be in denial, which is the mind's way of readying itself until it can better cope. In any case, pls consult with a professional about this. None of us can presume to know what is in your husband's mind. I extend my empathy for you and your husband. There are no good answers that don't lead to more questions. Nothing on this road is cut and dried. It's complex, heartbreaking and hopefully both a learning experience and a time where triumphs outweigh defeat once we are able to see beyond a set definition of either. I'm not sure of anything. elaine Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 23, 2004 Share Posted September 23, 2004 Pam, To some things in life, there is just never going to be a right or wrong answer. 2 + 2 is always going to equal 4, but telling the whole story to your dad doesn't guarantee any certain result like 2 + 2. It won't guarantee that he will stop or alter the chemo, and it won't guarantee that he will continue with it, either. It won't guarantee that he will be accepting, and it won't guarantee that he won't give up. I think in every single case, the only way to know what to do is to follow your heart and trust God with the results. I would think that any cancer patient that doesn't know that death is a possible result would have to be from another planet. I also think that hope is the most important thing of all to any patient with any disease. My favorite expression for at least my entire adult life has been to expect the best, but prepare for the worst. I think Dr. Joe said it a little differently on another thread: Hope for the best, but plan for the worst. My husband does NOT know that his cancer cannot be cured. Early on, he even used the phrase, "No sweat - they caught it early." My heart almost stopped beating because he said that right after he was told he had a 7 cm. tumor in his lung and 8 brain mets. It wasn't until June (I think) of this year -- it was right after his PET scan anyway, that it hit him. I will quote him, and he said this in a very loud, angry voice: "All this time, I NEVER - NEVER even considered that I MIGHT NOT MAKE IT - and I DON'T LIKE IT!!!" His onc is what I call a "don't ask, don't tell" doctor, so he has never even told him his stage. Early on I decided to just let him take the lead because he is the one with cancer, and if he wants to know more, he will ask. I have felt really good about that decision all this time, but now I am beginning to question it, but know I shouldn't. As we are approaching new scan results, I am scared to death that the results are going to be bad, that he is going to get the message loud and clear that he can't be cured, and that he is going to feel deceived and angry - both by the doctor and by me. I know if that happens, and he is angry with me, that I will cry for about 2 days, but I also know in my heart that I asked God what I should do, and I felt led to NOT tell him what I knew, and I will always feel that was the right thing to do. Is that the right thing for you and your dad? I DON'T KNOW and neither does anybody else!!!!!! You have to go with YOUR heart, and I hope that would be after you first asked God to lead you. I know there are stories of people that have been told the bad news up front and have just given up, but there are also others that after that first few days of shock and tears, decide to fight it. I have to add one more thing and that is that to "add two months to his life" can mean a lot of things. Adding two months to what? 6 mos? 1 year? 18 mos? 5 years? You see, I believe that the "two month" time frame he gave you is based on a statistic that he knows in his head - that being that the average life expectancy after dx for a lung cancer patient is overall increased by two months with treatment (I am not saying that is accurate because I don't know--I just think that's why he said two months). Well, for heavens sake!!! Increased from what point? 6 mos? 1 year?, etc., etc. Many of those people in that statistic pool lived more than 5 years, and many lived LESS than two months. Neither the onc or you have any idea how long your dad has, so if you decide to tell him he can't be cured, he also needs to know that many, many people live way beyond that median survival time and he could be one of them! Pam, whatever decision you make, if you go with your heart, and not your head, it will be the right decision. It could appear later that your heart failed you, but don't believe it. Even if it gets ugly, if you went with your heart and felt 100% that it was the right thing to do at the time, then it was. God bless you, Peggy And P.S. to Dr. Joe: I think the same thing is true for you: JUST GO WITH YOUR HEART!!!! If God is in your corner and you seek his guidance, you will make an individual decision in each and every case, and that decision won't always be the same, but if you asked God first, He will make it turn out ok. And some people might get mad at you for being honest and stomp out the door to go to somebody else, but you will know in your heart that you did the right thing, and it will be OK. There is no right answer here folks!!! It can go either way. Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 23, 2004 Share Posted September 23, 2004 Wow what a new perspective on things! Guess I never looked at from the other side! The elderly man with testicular cancer....it sounds like ya'll have tried everything humanly possible for him and his family wants more. If it was me.....I would want to know how the Dr. felt, it sounds like more treatment will only make his life more uncomfortable. I guess everyone needs to reach a point where they understand the "quality of life" issue. He tried but it does sound like conventional medicine has worked for him. He needs to discuss all alternatives with his family and do what HE wants. If he wants to keep trying the encourage it, if he wants to enjoy the rest of his time, encourage it. All you can do is give him the information and let him make the decision. Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 23, 2004 Share Posted September 23, 2004 Peggy Your post has made me question mine. That's a good thing, I think! You are right, there is no ONE answer. And I do wonder: Could your husband's treatment have been as successful IF he had known his disease, as of now, is not cureable. One thing I am sure of is that it spared him some painful thoughts... at a time when he didn't need them. As for you not telling &&&& You know him better than anyone. You asked for guidance. I am sure you knew that if he did understand the meaning of the brain mets, fully, that he would have chosen to do exactly what he has done, thus far. So, basically, I am left doubting my original post concerning honesty. I think that it has put a heavy load on you, but God must know you would hande it. The more I think about it, the more I think I would have done exactly what you have done. I don't think anyone should give timeframes unless death is likely eminnant(sp) without treatment as is often the case in some late stage SC and some lates stage NSC. It's the cureable or not question that has me still wondering. I fear Dr. Joe, as you have probably already come to find out, we aren't going to be able to tell you the "right way" because there is no "right way" that will fit like a blanket over all of us. The best I can come up with is that it would be prudent for someone in the family to know, and you will just have to use intuition to figure out who that person is. As far as the man with testicular cancer. I think in a situation that you have described, where the family seems to have taken over to the point it seems to have, someone, you or your partner, a social worker or the hospital chaplain needs to have a talk with the patient. It may not be easy, but if the line between "do no harm" is close to being crossed or has been crossed, someone needs to talk to the person it matters most to. Ultimately, it is the patient you serve and not the family. When my Dad was sick, the only Drs who I didn't really like to see coming were the ones who didn't talk to my Dad but instead seemed to want to address us (whatever family member was at hand) especially when it was bad news. I think they thought that since my Dad was in the room that he, too, was listening to them when they spoke to us, so I am not blaming them, it just seemed disrespectful to me at the time. Boy, this is tough. I can't even imagine doing what you sometimes have to do, Dr. I hope there is enough joy and success to overcome the difficulty. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
jean44 Posted September 23, 2004 Share Posted September 23, 2004 Just my opinion but, when my Dad was ill the very FIRST thing he told his oncologist is that he didn't want to hear a bunch of bull----. He wanted Dr. Hawley to tell him exactly what was going on, if he could help him and if he couldn't what was he looking at (pain, side effects from treatment, and the length of time he would have-either way). While his oncologist NEVER gave Dad a time frame (although the radiologist did and was right on how long he would be with us) he did walk into his hospital room and tell him that he believed they had used everything they could to help him but, nothing had worked. He then proceeded to tell Dad that he thought it was time to call Hospice and end the treatment. (Dad had ask Dr. Hawley to let him know when they had exhausted-in his opinion-anything that could help and Dad would make his decision at that time). My Dad was NEVER one to go to doctors. But, it was his doctor's honesty that made Dad feel comfortable with him and in the end he not only earned Dad's trust but also his respect. While I can understand alot of people on this board look for hope-which there is nothing wrong with-my Dad was not interested in the what ifs or hope. He was only interested in just exactly what the treatment alone could or could not do for him. I believe I would want the same from any doctor-honesty. Quote Link to comment Share on other sites More sharing options...
babesdaughter Posted September 25, 2004 Share Posted September 25, 2004 First of all, posting with tears in my eyes, so forgive typos and rambling....my Mom chose NEVER to receive chemo or treatment. Her disease was advanced at diagnosis and she just didn't want to do it....do I for ONE SECOND think that she gave up....HELL NO. Never have I seen a person face something with such incredible dignity and courage. Do I think for ONE SECOND that cancer "BEAT HER"....again a resounding HELL NO....she faced this monster with a calm that was totally beyond me. The docs told her that treatment could 'buy some time'. Certainly I wish I would have had more time with my Mom..another week would have been an millenium, a month an eternity, but that was not to be. Of course, I have moments, days that I wonder 'what if' we had sought treatment.....but we didn't. The choice to treat, not to treat....to continue treatment to stop treatment...it's a highly individualized decision and one that must be made with full knowledge. HOPE is a relative term.....we never did have HOPE for a cure....we but had HOPE that what time we had could be packed with love, devotion, courage and with grace....my Mother gave me and incredible gift..even in her death, she gave to me. I don't really know what the point of all this is.....except that there is a time that no matter how many opinions you get, no matter what high power clinic you go to.....the answer lies inside the person with the disease and no matter how hard it is for those of us caring and loving them....so be it. Quote Link to comment Share on other sites More sharing options...
PamT Posted September 26, 2004 Author Share Posted September 26, 2004 To all who have repsonded to my question, I thank you. It has been a very difficult week as Richard worked through the reaction to his third chemotherapy with vomiting, diarrhea and another 7 pound weight loss. But through it all, we have learned. Last Tuesday he refused to return to the oncologist after I had called him to report his symptoms, and there was no way to convince him otherwise. By Thursday, he was so dehydrated that he could hardly walk, and then he agreed to go to the oncologist. Once there, they gave him 2 liters of saline IV and started him on more anti-nausea drugs and gave him the hope that they would stick with him until we had this licked. Friday, it was back for two more units of saline and more anti-nausea drugs. I am happy to reposrt that today, Saturday, he is eating and drinking again in small amounts and not having vomiting and diarrhea. But more importantly, he has learned that the oncologist and his entire staff are on his side and he needs to trust them. Richard and I have also spent many hours in long talks which have let me know how much he wants to fight this disease. When he was first diagnosed four weeks ago, the pain and the drugs made it impossible for him to understand. At that point, I was making all decisions for him. That was the scary part. Now his mind is generally quite clear and he can make his own decisions, which is what I want. I will support him in whatever his choices are! Richard's brother died at the age of 17 with osteosarcoma, and his treatment (1962) was painful; his last days were in total misery. We were teenagers then (Richard was 15 and I was 14) and we watched as cancer took his brother's leg and painfully invaded his body. Chick, Richard's brother, chose to enter many trials at the University of Pennsylvania, knowing that his suffering might help others down the road as well as the possibility it might cure him. So I am especially proud of his desire to fight this enemy. I will keep you posted as we go down our journey together. Love and prayers for all of you, Pam Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted September 26, 2004 Share Posted September 26, 2004 Pam, Hi my heart goes out to you. From what I have read and heard small cell and non-small cell are so different. My prayers are w/you. You and your husband have some very difficult decisions. It seems alot of the decisions will lay w/ you if you husband is to sick to even thing that hard. Talk w/ him honestly. You know him better than anyone. Would he want the truth or a sugar coat? My dad several yrs. ago passed from Pancreatic cancer so I am no stranger to what you and Richard are going through. It's so soon since his dx, the shock probably has not even worn off yet. If you trust his ocon. dr. stay w/ him. I'm not against second opinions, but would this slow his treatments down? Talk to Oncondoc he seems truely honest and compassionate. PM him I'm sure he will tell you the god's honest truth if that's what you want. There always hope, but don't give up on the quality of life. Good luck to your family and I will pray for Richard daily. I hear the pain in your post and I know exactly where your coming from and it's no picnic. Try hard to stay strong for him, he needs you so much. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.