Most Cancer Docs Avoid Saying It's The End

[Pea-n-Me]

Have seen this subject mentioned here before, so I thought this article was interesting.

http://www.msnbc.msn.com/id/25176326

 

[Shugardrawers]

A-FREAKIN-MEN!!!!! I was so incredibly lucky to have a Dr who was very straightforward with me. She wasn't pessimistic but she never sugar coated anything. I have told all my doctors I always want the straight truth. For me, it's just far easier to deal with what needs to be done when I have a good idea what that's going to be. Hope for the best and prepare for the worst.

 

[Mackey Mouse]

I was just coming to vent a little and so I will put it here..

Tom has a terrific doctor, the man carries the weight of the world on his shoulders and you can see it in his eyes... but he does not sugarcoat anything, rather blunt at times which sometimes stings, BUT, we now know that this is the way we want him to be.. We think he is incredible and ok getting a little weepy, know that he will tell us when it is time to stop treatment and then.....if we have the time, Dear God, I hope we do, I want to take the whole family to Ireland.. everyone of us, my 3 daughters, the baby, Tom and I.. us, the immediate family to see his and their roots... I am not Irish, but darn it, I feel like I am because I have lived with this man for it will be 39 years on July 12.

Anyway this was my little vent, I have great faith in my doctor and I know my friends and family mean well and send me these articles to read all the time. I read them and think well what if???? What if I do not ask the doctor and this is something new and it has not been done at our hospital yet and maybe he would consider it down the road... So I send him emails and God love him, he answers each and every one of them and I know it is him answering because you know his style after a while.. But, deep sigh here, please let me have faith in what he is doing, I know they mean well, but there are not many options for Pancreatic Cancer. I am not defeated, I am just a realist..

Anyway, kudos to Patrick Swayze, he is going back to work......I am proud of his determination.. I hope he does well and has many years of work, life and love. My husband never went back to his job, he was never well enough after the Whipple and all the treatment, but he is well enough to enjoy his grandson and get out and enjoy life the best he can.. Periodically the insurance company tries to throw him off disability, shame on them.. see they obviously have not done their homework on PC.. there are no remissions, there are just good times between treatment times.. it is always there..

OK.. sorry for the rant, but it was boiling up inside of me.. hugs all around.

 

[Pea-n-Me]

Marsha. FWIW, I think you're doing a terrific job. I know it ain't easy.

 

[kimis]

My mom passed 18 months ago of small cell lung cancer. What is small cell lung cancer? It is VERY aggressive. We had mom for 3 and 1/2 months after the diagnoses was made. She was my best friend. I went to all of her dr. appts with her and I have to say that NONE of her doctors suger coated anything. Hospice was called and she moved into my house where my sisters and I could take care of here. She wanted to go on three trips. One to Kansas for a family reunion, one to Corondo Island to stay at the Del and the last one was to see the redwood trees. The only trip she was able to go on was the reunion in Kansas and that was hard on her.
Her doctor was awesome. He even came to the house three times just to see her. At the end Hospice told us anytime but the doctor said probably two weeks. We knew in our hearts that Hospice was right. She lived a couple of days after hospice said it would be anytime.
I think if my doctor wasn't honest and direct I would find a new doctor.

 

[breezy1077]

I was just coming to vent a little and so I will put it here..

Tom has a terrific doctor, the man carries the weight of the world on his shoulders and you can see it in his eyes... but he does not sugarcoat anything, rather blunt at times which sometimes stings, BUT, we now know that this is the way we want him to be.. We think he is incredible and ok getting a little weepy, know that he will tell us when it is time to stop treatment and then.....if we have the time, Dear God, I hope we do, I want to take the whole family to Ireland.. everyone of us, my 3 daughters, the baby, Tom and I.. us, the immediate family to see his and their roots... I am not Irish, but darn it, I feel like I am because I have lived with this man for it will be 39 years on July 12.

Anyway this was my little vent, I have great faith in my doctor and I know my friends and family mean well and send me these articles to read all the time. I read them and think well what if???? What if I do not ask the doctor and this is something new and it has not been done at our hospital yet and maybe he would consider it down the road... So I send him emails and God love him, he answers each and every one of them and I know it is him answering because you know his style after a while.. But, deep sigh here, please let me have faith in what he is doing, I know they mean well, but there are not many options for Pancreatic Cancer. I am not defeated, I am just a realist..

Anyway, kudos to Patrick Swayze, he is going back to work......I am proud of his determination.. I hope he does well and has many years of work, life and love. My husband never went back to his job, he was never well enough after the Whipple and all the treatment, but he is well enough to enjoy his grandson and get out and enjoy life the best he can.. Periodically the insurance company tries to throw him off disability, shame on them.. see they obviously have not done their homework on PC.. there are no remissions, there are just good times between treatment times.. it is always there..

OK.. sorry for the rant, but it was boiling up inside of me.. hugs all around.

Vent anytime you want - better out than in, that's what I always say . I'm still praying for Tom, you and your whole family . Sometimes even the best Tigger has Eeyore moments. We'll be your Tigger for you for now Mackey Mouse - you can lean on us.

 

[Mackey Mouse]

Hey guys, you all are the greatest, we are seeing the grandbaby and he makes all things good....I am glad to have all my Tiggers around me and I endeavor to be a Tigger myself.....just sometimes you need let it out... I am ok, I actually think we have been pretty lucky so far as his type is slow growing and so we live our lives.. '

Thanks for the sweet words, we can all use them when we need them..

Hugs

 

[Shugardrawers]

I really think the puppies and rainbows approach is more for the families and loved ones who can't or aren't ready to accept the cold hard facts. They tell us not to think like that because they think it makes us stronger when in reality, it makes them feel better. I haven't met anyone living with a terminal illness yet who didn't want to take a straightforward approach. I hear frequently in my support group that they want to talk about final arrangements but their families won't let them. My Dh refused to hear it. I took my DSis and my Daddy to the funeral home and made the arrangements myself. My sister was quite practical. My daddy lost it. My Dh still won't discuss it.

I hear people say all the time "If something should happen to John/Jane, God forbid" ummm...something IS going to happen to ALL of us some day. It's just a matter of when. When I came to accept that death was a fact of life, I learned to stop worrying about it. And I figured out real quick that dying was no way to live. That's my motto now

 

[Mskanga]

My daughter always said that as difficult as it can be , she would rather know the truth in advance so she can make decisions on what she wants to do. At this time there's no need to worry about this as she is in remission but I would expect her doctors to be straight forward

 

[RMulieri]

I was just discussing this article at work.I am an Oncology RN, and some of our DRs are awful at this.I think they take it as a personal insult if a pt dies or decides they do not want to continue wit htherpay that may be futile.I am never ever one for taking hope away, hope is GREAT thing and I have seen miracles occur.But I have seen some pts that don't know that their situation is as dire as it is because the Dr plays it down. Case in point I recently had a very advanced Breast Ca pat.She fought hard and valiantly for 5 yrs.it just kept returning.On her last admission the Drs KNEW it had metastisized everywhere, knew that this was probably the end and would not admit it to the patient and family, even when they asked outright( they were still in stages of denial though and probably would not have accepted it), they did start a Chemo protocol and the woman died after 4weeks in hospital.The family now wants to know why the drs weren't honest.They would have rathered taken the pt home and let her live out her last days with family.I have a hard time dealing with this everyday.I would definitely want someone to be honest with me and my own.As a positive outcome we are putting together an action committee with some of our Drs, staff, and pt family members to discuss what we need to be doing differently.

 

[AllesonWonderland]

This is exactly what I was afraid of at my mom's first oncology appointment this week. All this has happened in the last 2 weeks, so it's very fast. I was expecting to go in and hear a very bad prognosis. (Mom was diagnosed with a Glioblastoma Multiforme brain tumor.) Instead, the doctor talked about how more people are living with the combination of chemo and radiation. Granted, it's still only 23% making it past the 2 year mark, but it's better than 0%. I left 'guardedly optimistic', but still a little fearful that he was sugar coating. I guess we'll see after radiation and chemo.

 

[Pea-n-Me]

RMulieri, as a hospital nurse I understand what you mean. And being an oncology patient myself, I also understand the doctors offering hope as well. I guess the problem comes when walking that fine line between hope and futility. And add in the uniqueness of every patient, family, and situation, and there aren't many easy answers. Do you have an Ethics Nurse Specialist on staff who can help guide these types of situations? We have one who's part of a multidisciplinary Ethics Dept, and we also have a forum for staff to discuss these situations and receive support ourselves. Thankfully, our hospital leadership recognizes how difficult it can be for us, too. Thanks for the good work you do.

 

[Rustysmom]

I wish my mom's doctors did sugarcoat a tiny little bit. None of them did. From the ER doc that blurted out that she had pancreatic cancer with mets to the liver and lungs and that it was very bad, to her regular doctor who told her the same thing, to the oncologist who told her it was a bad kind of cancer to get.

I wish one of them had given her a little bit of hope, because she only last 9 weeks after that ER visit. Maybe if they gave her a little hope she would have tried chemo. She didn't because the way they talked, it wouldn't make a difference, but I read about people who are still around months later on chemo. Who knows, but I wish she would have at least tried it.

 

[jennz]

Okay, this thread has opened my mind a little bit...my mom has ovarian cancer. Diagnosed 2 1/2 years ago, stage 3c, met to abdominal muscles, colon. Surgery removed most of it but it remains in her muscles and spread out through her body. She's been on chemo and they just changed it to a different type. She talks about stopping chemo b/c she doesn't like her quality of life. Her dr. has told her that if she stops the chemo she dies. I get mad at her b/c she doesn't get sick from the chemo and seems to have no side effects. She says she spends too much time at the hospital and has no energy, and she has a bad knee that she can't have operated on b/c she's on the chemo.

I've told her I know it's her life and her decision but I hope she continues on the chemo. Maybe she wants to talk about dying. She's hinted at it and I don't do it. Should I???

 

[kimis]

Hi jennz! I know where you are coming from! My mom was diagnosed in 2006 with small cell lung cancer. It is very aggresive and with a healthy person you are given 6 months. With treatment you might make to 7-8 months but at what quality of life. My mom also had parkinsons disease. She made it just three and a half months.
She didn't want treatment. As her daughter I wanted her to live forever but the hardest thing I ever did was agree with her. I had a saying for her "you are the boss applesauce".
So you see I do know what hard place you are in. How old is your mom? How is the rest of her health besides her bad knee?
It is very hard talking with someone you love about death. Remember they need to talk about it. It is very important for them. When your mom talks just listen (this is hard to do with no tears). I would take notes that way I would be looking at the paper and I would hope mom wouldn't see the tears fall on the paper. My mom had a "no cry" rule, which was the one rule I found the hardest to keep. This rule I found very unfair!
Is there a hospice in your area that you could call and talk to? Hospice was wonderful with us. They came out right away. My mom thought it was too soon but they assured her they like to come early so they can get to know the patient and the family. We had two great hospice nurses. They answered questions and prayed with us.

 

[jennz]

kimis - thank you SO MUCH for your post! My mom is 75. Her knee is so painful that she cries at least a few times each week. She also has a back problem that can get quite painful. My mother-in-law died recently from emphysema and she also had alzheimers, and I'm comparing her quality of life (couldn't even walk ) to my mom's, which I know isn't fair to her. And it's hard because she's in Florida and I'm in Indiana...I suppose I just need to pick up the phone and tell her to say what she wants to. They're having some financial problems due to medical expenses so she cashed in their savings to an annuity and she said that should cover them for 5 years which "should be more than enough." She says things like that and then says that she knows I don't want to hear it, but she's definitely dropping hints that she wants to talk about isn't she? We used hospice w/my MIL and they were great, but I hadn't thought about it with my mom.

Thank you again!!

 

[Pea-n-Me]

I saw an article today and I thought it went along with this thread, so I thought I'd put it here in the hopes that it helps somebody who might be in that situation.

I think the word "hospice" scares people. It's ironic, because it's hospice that can really help get everyone through it.

I guess the biggest barrier is knowing when the time is right.

Terminally ill patients delay talk of hospice

 

[jennz]

You are so right about hospice - they made everything so much easier for us, including my mom. 6 weeks ago they told her she had 2 -3 weeks left to live, I am glad her doctor was straight with her. They were able to move her into a hospice center since my dad was still recovering from his stomach removal surgery (stomach cancer!). My family and I spent 10 days with her and she said the hospice workers were angels sent to her.

 

[Teacher03]

The hospice nurse my mom had was wonderful. My mom was diagnosed with cancer in September, she decided not to have any treatment, and hospice was called in early October. I was so upset because I thought it meant the end was right around the corner. But what a blessing! She made my mom's life easier, along with my dad's and my two sisters and me. Sadly, my mom passed away on New Year's Eve, and the hospice nurse was there within 25 minutes. I can't say enough good things about hospice care.