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Opinions needed


MilliBr1

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Ok, when mom was in the hospital they did a PET scan and said she still had a tumor in her lung, but pnuemonia could also show up like that so they couldn't be a 100 percent certian without a biopsy, which mom is way to weak for. They said whatever the case she declining and is not improving even with treating the pnuemonia, so they recommended hospice. We talked with all the doctors involved and they all felt hospice was best, so we agreed. But we all felt a bit unsettled. Were we giving up on her when we should be fighting? My sister talked to moms oncologist again and had him compare her first PET scan when she was diagnosed to the new one. He said from what he saw that yes there still was some cancer there, but that this should not be making her so weak and declining so fast. He feels that the treatments combined with the Subdural Hematoma from her fall are causing this. My sister asked if this is something he feels she could recover from and he said no he did not think she could.

We didn't tell our dad that we called the doctor because we didnt' want to upset him by thinking we felt we made the wronge decision. I just wonder if we should get a second opinion? Or since she still does have cancer and is to weak for anymore treatments should we just let it go? I mean I know we had her in therapy and at first she seemed to be doing better and then she just got worse till she couldn't walk anymore. Her eating never really improved and it has always been a challenge to get her drink enough. Her mind has never been the same since the hematoma and has gotten worse since the PCI, which we tried to talk her out of since she had just had brain surgery but she still wanted. I don't know, I'm sorry I'm rambling I just want to be doing the right thing. If only she would talk, she just never really talks anymore I just wish she would talk. :cry:

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Millie,

I know you are looking for some opinions. I can't tell you what you should do, but I do understand how very very hard these decisions are and how nerve-racking they can be to be. I just want you to know that I hope and pray that you will be at peace with whatever you decide is best for your dear Mom and if you feel that a second opinion is in order and you don't want to leave any stone unturned, then by all means do it. You need to be able to have some peace of mind with making your decision. I will keep you in my thoughts and prayers.

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Millie,

I am so sorry your mom, you and your family have to go through this. My mom was receiving chemo treatments and we always thought if anyone could beat it she could. We never talked about her not making it. So when the time came when my dad and I could no longer handle her care ourselves we called hospice. We didn't call them sooner, because we too never wanted my mom to think we were giving up. It was the best thing we did. By talking to them I felt that calling hospice doesn't mean you are giving up. They specifically told us that if my mom showed improvement and wanted to pursue treatment again then she could. They were a support for us. Unfortunately my mom never improved, but hospice made her final days so peaceful and comfortable.

Second opinions are very valuable. It can give you a peace of mind.

Don't ever ever feel like you are giving up. I can tell from your post that you love your mom dearly and would do anything to help her. I told hospice that I wanted my mom to be comfortable and have dignity...she got both.

Thinking of you.

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Millie,

I know how upsetting this is for you, as it sounds quite like the situation that we were faced with a few months ago.

There are certainly lots of things that might account for your Mom's decline - one of which is simply symptoms associated with the cancer. It is a matter of running tests in order to determine if there is something going on that could be reversed.

Mum experienced a rapid decline, both physically and mentally before she died. We presumed that her brain mets were growing again, which would account for some of the alarming cognitive symptoms that she was experiencing. Yet, a head CT revealed that the remaining mets had continued to get smaller! Mum was admitted to hospital at one point to determine if there was anything going on that was potentially treatable. Unfortunately, the doctors were unable to come up with any obvious explanation for her symptoms other than it being part of the disease process. I think it is better to leave no stone unturned, so that at least you won't be left wondering whether there was anything else you might have done.....

I hope that the situation with your Mom is able to be turned around. I wish strength and comfort for you all during this difficult time.

Love Karen

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Gosh Millie,

So very sorry to hear about your Mom's decline.

From what you have written, it sounds as if you have had quite a few professional opinions. They all seem to point in the direction of hospice.

I don't have any advice or wisdom for you Millie. Only have love, care and support for you. I am confident that you will know what to do and do that when you and all the family is in agreement.

Praying for peace for you all and for your Mom.

Cindi o'h

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If anyone is sensitive about discussing the dying process, please do not read this.

My heart goes out to you. I remember feeling the same way with my father. None of the tests showed any tumor growth or progression, yet he kept declining despite all our efforts. We kept asking for more tests. We wanted the doctors to tell us exactly what was happening in Dad's body so we could understand. We still don't know what that caused him to die. Was it the brain tumor -- which all reports said was shrinking? Was it the lung -- that was stable with no growth and no new lesians? Was it the tumor on his spine -- that was shrinking? What organ or organs finally just quit? Why did they stop working?

When Peter Jennings was diagnosed with lung cancer, Larry King did a segment on it. The quote that interested me most was this one:

"KING: Dr. Natale, without being crass, what kills you? What happens from cancer that causes death?

NATALE: We actually don't know, Larry. Many patients with lung cancer, when they die, they have healthy-appearing lungs, or adequate amount of lungs, or their heart or other organs are still functioning pretty normally. Somehow, the total tumor mass in the body gets to a point where the body begins to shut itself down."

I'm not trying to be graphic or quell your hope. Whatever it was that took our Dad, we felt powerless to stop it. It was a terrible moment when we realized that the doctors had nothing left to offer. Calling in hospice was an excruciating decision because we wanted to be Dad's valiant warriors, fighting for him every step of the way. We finally realized that we could still fight for him, but the battle objective had changed. We could no longer fight for long-term survival. We had to fight for his quality of life, for his comfort, for his peace of mind.

I hope your mother finds peace and comfort and I hope that she feels profoundly the love that you have for her.

Pam

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This would be so much easier for you if you knew what your mother wanted. As hard as it is for us caregivers, it really is the patient who is in charge. When my grandmother had lymphoma, she did one round of chemo and told us she was through. She made her own decision, and we respected that. She went very quickly, but we knew it was what she wanted.

I hope you family will have some peace with this issue. I fear that no number of opinions will make you feel settled until you truly know what your mom wants. I hope she is able to communicate that with you.

You'll be in my prayers.

:) Kelly

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Why not get a second opinion here by posting a question in the ask the experts forum? Maybe they can help you sort this all out and you can understand the reasons for her decline. All my best to you and your mom.

Rochelle

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Dearest Millie,

My experience with Daddy was almost identical to what Pam wrote.... and what you are going through. Brain mets were shrinking, spine met was stable, lung growth was not changed, but he kept going down, down, down hill.... it was so frutrating. I blamed it on depression, I blamed it on dehydration and in the end... I blamed it on myself for allowing him to be put on morphine because there was nothing else they could do. And I felt that I did not do enough research before I made that decision. Now when I read Pams post, I see that Daddys case was not that unusual... and maybe much more common then I ever thought... and for the first time in the 10 months since Daddy passed, TONIGHT I DON'T FEEL LIKE I KILLED HIM... My god Millie, this post is about you and somehow, a lightbulb just went on in my own soul. Do what you know you must to make this process easiest on you and your Mom, and I pray that you never, ever feel guilty about the decisions you are about to make.... PAM, I thank you for sharing your post with us all you have touched my life more than you know. Love, Sharon

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Can your mom be able to say her own will? Is she conscious enough to make decision for herself? If she can, let herself make the decision. If not, in my opinion, if doctors said there is no return and they have nothing to help, then I think should let go and pain management is the first priority.

Treasure every moments that you have with your mom. You have done the best that you can, sometimes, life is out of our control. She knows that you love her very much and you are her forever good daughter.

You are in my prayers.

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""KING: Dr. Natale, without being crass, what kills you? What happens from cancer that causes death?

NATALE: We actually don't know, Larry. Many patients with lung cancer, when they die, they have healthy-appearing lungs, or adequate amount of lungs, or their heart or other organs are still functioning pretty normally. Somehow, the total tumor mass in the body gets to a point where the body begins to shut itself down." "

And this is why I am so aggressive in pushing for treatment by surgery, radiation, or chemotherapy to reduce the total tumor burden in my body.

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Sorry I am late here Millie. Have been away a few days and haven't kept up.

I reread all that you have posted so far. Oh Millie, you have done EVERYTHING that you could and EVERYTHING right....as far as I can see.

I will continue to keep in prayer and hope for the very best. Please do not suffer needlessly over your actions and decisions. They have all been done as best as you could and with a pure heart.

(((Millie))),

Kasey

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Hi Millie,

Just got home and read your post. I am so so sorry about the sad news about your mom.

I have no advice just prayers sent to her to be pain free and at peace.

Hospice is wonderful and a blessing to many people including myself when my dad passed.

Prayers sent out. I am sorry Millie. We are always here for you. 24/7

Maryanne

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Dear Millie,

Just wanted you to know that my heart goes out to you, and that I'm hoping you can find some peace with yourself after making decisions that are so very, very difficult. The idea of posting in the Ask the Experts panel is a good one, but in the end, I hope that you can enjoy some time with your mother and that she will be at peace with herself and those around her. We can all second guess ourselves deaf, dumb and blind, but in the end, we have to do what we think is best and try not to feel the pressure of "what if's". Let the people from Hospice help you through this -- they've seen it all before and you are as much part of their job as your mother.

Will be thinking of you and hoping that you can find some respite in all this,

Ellen

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