My heart goes out to you in this predicament. No easy answers that's for sure. Time to weigh the pros and cons. You know him best, maybe you know how he'll react to tough news. The docs are not always right. Prognosis' are educated guesses. I recently read my docs thoughts on my condition. I've already proved him wrong. As a cancer patient I like to have all the opinions. Other people on this site may be able to give you some insight. As long as it doesn't break your will to fight, I would think most people would want the truth. Good luck.
Lung Cancer Questions
To tell or no to tell
Asked by Jray on Tuesday, April 23, 2013
To tell or no to tell
Last week I asked to speak with my husband oncologist about his prognosis. She replied to me in writing on a document similar to what we get when we leave her office. Keep in mind my husband has diabetes, renal failure and congestive heart failure too aside from the cancer. The statement said that my husband was in stage IV and his prognosis was poor but if the chemo is effective and if the side effects are tolerated he has a 40% chance of living 1 1/2 years. My thought is to wait till after the chemo is done in June and see what progress he has made. But I tell you, knowing this info has made me a wreck. I have never had to hold something this important from him ever.
8 Answers from the Community
Hi. I'm Aliza, a Breast Cancer patient and the site's unofficial Medical Librarian. Med Librarians offer answers -usually non med ones [Librarians have a Code of Ethics that prevents us from answering Medical questions as it also happens to be just a bit illegal as well, since it's practicing medicine sans license]], but I offer referrals to docs, hospital. insitutions, agencies, books, media, etc. and research when requested or required. Im also permitted to speak from my own experience as well as those of my family and friends.
Not telling a patient his/her prognosis is something that was done back in the late 60's and early 70's. I know this because my Grandfather, who died from Colon that metastasized to his liver was kept in the dark (theoretically) by my mother, aunt, and grandmother and his oncologist. I was 12 at the time (i'm 54 now). But I suspect my Grandfather knew anyway as he was a very accomplished Dentist and a pioneer in Dental Anesthesia (and had studied the entire human body).
I think we all (these days) have evolved to the point where we deserve to know about our mortality. Before I was a BC patient, I was diagnosed with Lupus20 years ago and not long afterwards had a t.i.a. as young single mom who worked full time. My daughter stayed with my parents. My older brother was my health care proxy and power of attorney. I spent a week in the hospital. These days, outside of having had cancer (I'm cancer free for 4 months now), I'm a bit tired and have a cold at the moment, but I'm doing well, but boy was I worried back then about the possibility of a major stroke or my death and what could happen to my daughter and ultimately I had to make my peace with it.
Denying your husband the right to live out his days as he wishes (or not go through chemo, which may make him feel quite ill) is the decision you would make for him (of course you love him and want him around) but is it what he himself would want? These are hard truths to face. Eventually he will not be around and you will have fond memories to cherish, but you will have a life to make for yourself.
My late father had CLL (Chronic Lymphocytic Leukemia). He was nearly 87 when he died and had had the disease about 6 years. Toward the end after he'd have chemo, he'd catch a secondary infection (pnerumonia), go to the hospital for about 3 weeks, and because he'd been bed ridden for so long, he needed to go to a rehab center to learn how to walk again, walk stairs-the house in which I now live has stairs, etc. Ultimately after about a year of this on an off merry-go-round, he opted out. It wasn't that he didn't love us and it wasn't that he was in pain. He was just tired out. I don't blame him.
The 40% chance of 18 months is not promisiing. What would be more promising in my humble opinion is to give your husband dignity in deciding for himself how he wants to spend his remaining time. If he opts not to participate in chemotherapy, he can enroll him in hospice and palliative care (this just means that they are not pusuing a cure and will keep him comfortable because no one should be in pain or discomfort) This way, he could enjoy his remaining time with you.
This was a difficult letter for me to write. Two and a half years ago, my mother suffered from a Cerebral Hemorrhage (due to her dementia) and was comatose for a month. They wanted to send her into Manhattan to operate at one of NYC's premiere hospitals (i live in NYC), but I discussed it with my brother, daughter and her neurologist and we all agreed that since the operation wouldn't have helped her walk or speak again, that it was time to let go. It would not have been a better situation to have her crippled in a nursing home and unable to speak. During the month she was in the coma, we each visited her 3 times a day at the hospital and read to her Nora Ephron's "I Feel Bad About My Neck" which she'd loved (I bought it for her). It gave us something to do.
I cannot presume to know your husband and how he will react. It is entirely possible that I am wrong (this would not be the first time...;) Perhaps, if you belong to a religious community, it would be a good time for you to call upon your clergyperson to see if they have a different take on this than I do. I would be surprised to hear that. My rabbi, whose wife has Hodgkin's disease, certainly has not tried to shelter her from her illness. I'm well acquainted with priests having obtained my Master's degree from a Catholic University and I think they feel people (unless they suffer dementia) should have a say about their own lives.
This is a long letter. I apologize. I'm a professional writer in addition to other things I fdo and have been. Everyone on this site has great compassion for the situation you find yourself in, myself included. I think it would be a great gesture if you brought you husband to the doctor and had him/her explain it to him. That way you can act like you didn't know in advance (you can always tip the doc off) and the two of you can deal with this as a couple.
I wish this was a happier and more hopeful letter. But if your husband finds himself receiving palliative care that alleviate his discomfort, he may become happier.
If there is anything that I can do for you, please don't hesitate to ask. Feel free to email me as well as contact me here on the site.
We faced this with both my mother and my father. Both were given terminal prognosis 10 months apart. We were told by the Dr. like it was a secret. We then told both of them. Dad was in such a delerious state of mind that I don't think he understood just how bad he was. Mom knew, she was still quite healthy at the time. She had a lung tumor that was inoperable, and she was told she might make it 6 months with or without chemo. She chose to not have it. We made the best of the last months of her life. She made it 10 months.
Your right, it's hard. I look at it from the point of view as the patient, I've been there 3 times, I would want to know.
Then as the caregiver, I've been there twice, I would want to tell him. You will feel better I think, and he can decide how he wants to live out his remaining time.
Sorry for your situation, but we wish you the best.
This is a very heavy burden for you to have to bear. There is no right or wrong answer in this kind of experience, and only you know your situation intimately and how you think your husband would react. I kind of wish your oncologist had in fact discussed it with you both instead of sending a "report." And, keep in mind that it's not an exact science, and none of us have exact expiration dates. Perhaps you could request an appointment for you, husband and oncol. to discuss the issues together. I will say that, if I were the patient and my caregiver had this information about me, I would want him to tell me so we are both on the same page. You and your husband have a lot to deal with, in addition to the cancer, and I wish you the best.
Hijra, you are asking a question we all have asked at one time or another. When my husband was diagnosed with terminal lung cancer. The doctor said he would tell him. I told him no, you won't, I am his wife and we have faced everything together the good and the bad. It's my place to tell him. I tried right after the doctor told me, but I couldn't do it, I went to the little chapel at the hospital, I asked God for his help and guidance and for the strength to tell my husband. I didn't feel like he answered me, I didn't really feel anything.
But, when I went to my husband's room he spread his hands apart ,since he was on life support and couldn't speak a gesture for what's wrong. At first I said nothing, then he made the gesture again, so I told him he had lung cancer it was terminal and they could not operate because it was in his trachea and inoperable. He just spread his hands and kind of shrugged his shoulders. But after that he seemed to except it, a lot better than I could.
It's not easy to tell the one you love the truth sometimes. Only you know what you and your husband have been through and how you have handled the small and the big both good and bad. But I will say, Talk to God, ask him for his help,guidence and for strength. My prayers are with you.
The oncologist should be talking to your husband. You shoud not be the one to share this information with your husband unless you asked for this to be done. You don't have the answers to his questions the oncologist does. Yes, you should be there but the oncologist should talk with him.
On the other hand if your husband is the type of person who prefers to just go along then perhaps going through the treatment is all he needs right now.
No one knows how he will do or progress. Perhaps just taking it day by day is really the right solution here. He knows he has cancer. What good will come out of focusing on the potential outcome. He may live for a very long time.