:( Advice?

MichelleP · July 2009

Hubby has Ct scan scheduled for Wednesday. The onc and his Pcp both believe the disease has spread to his liver. They said that if indeed it has they recommend all treatment stop and hospice called. I'm going out of my mind with so many emotions. My hubby doesn't know any of this information. They told me privately because he refuses to discuss any of this with them. They told me that I need to "force the conversation" with him privately. How do I do this and where do I begin? I'm thinking that I have to at least wait for the Ct scan results because that would just be cruel to do it now. Has anyone out there dealt with anything like this themselves????

The doc also prescribed anti depressants for him and I know he won't take them. He needs it yes, but I'm going to have to lie to him about what these "new pills" are really for. (He analysis each and every pill I give him).

Advice on how to approach this conversation would be appreciated. I just don't know what to do.

soccerfreaks · July 2009

Approach
I am once again flabbergasted that the survivor is not being made aware of his/her prospects, unless he/she is unable to grasp the significance and consequences of those prospects and the decisions that have to be made as a result.

That is really not your job but THEIRS. They can answer any subsequent questions he has, some of which you may not be able to handle; they are skilled at this, purportedly, having been through it many, many, many, ad infinitum, times before. You have not.

But I am going to get off of that soapbox, since you didn't ask about it explicitly.

It is tempting to suggest that you wait until after you get Wednesday's results. It is mighty tempting. If those results came back the same day, I would even contradict my past statements and say that you should ride it out and make sure that this is accurate stuff before telling him it is basically now just a matter of time.

Assuming that he has his mental faculties in tact, however, I must still advise that the sooner he knows the better.

Since he is a grown man, here is what I would expect from my wife, if for some reason the people I was about to fire and sue didn't give me the news rather than her:

< Honey, you have been refusing to talk to the doctors, so they laid this on me instead, and I have to tell you. Our relationship has been built on honesty, and I have to be honest with you now, especially: if these results come back as expected, they do not think they will be able to do much more for you.

That is not a given. There is still hope. But you need to be aware of that possibility, that probability.

We can dwell on that, or we can decide how we want to enjoy the rest of our lives together, starting with you taking the medications they are giving you.

I love you.>

Just speaking from my end of things.

Take care,

Joe

Glenna M · July 2009

Advice??
Hi Michelle,

As usual Soccerfreaks reply was right on the mark! I also want to say "DON'T GIVE UP HOPE", not until the day they say there is nothing more they can do. Miracles do happen - I know from experience that they really do happen. My brother had inoperable/incurable NSCLC and was told he didn't have much time. After chemo and radiation he lived another 5 and a half years before the cancer came back, during those years he lived a happy fufilling life. When the cancer came back they said it was the end and put him directly into hospice thinking he wouldn't make it through the weekend. They gave him 5 radiation treatments when they put him into hospice and after 2 weeks he told them he wanted to go home - he wasn't ready to die yet as he had some unfinished business. They unwilling released him and he went home to make sure the house and all of the paperwork that his wife would need after he was gone were in order. Our entire family took turns helping him with whatever he needed to get done. He lived at home (on oxygen) for 3 months before he finally told us he was ready to go back to Hospice. He went back into Hospice 8 days before his wifes' birthday, we visited with him everyday, most days we just held his hand while he slept but I know he could hear us all talking about the good times the family had together and we told funny stories about our growing up together. We never cried or acted sad while we were in his room, if you had to cry you went outside for that, we wanted him to remember us as a happy family. The day after his wifes's birthday each of us sat on his bed and told him how much we loved him and that it was finally okay to let go - he had not wanted to die before he spent one more birthday with his wife. We had her birthday party at the Hospice house and brought a g ift (that he chose) for his wife. We received the call that he had passed peacefully the next morning. He knew that everything was going to be okay.

This story is not meant to be morbid or in any way cause you to think that your husbands time is up, I just wanted you to see that the doctors don't know when a persons time will end, that is up to each individual. The doctors thought my brother had 2 or 3 days and he stayed another 4 months until he was sure it was okay with his family and that we would survive.

Please Michelle, don't give up hope yet. I know this is exhausting, both physically and mentally, but try to stay strong for your husband.

I wish there was more that I could say to help relieve some of your stress and pain but unfortunately I'm just someone who cares and wanted to give you some hope.

Please stay in touch. You will be in my thoughts and prayers.

Your friend,
Glenna

tiny one · July 2009

Please seek a second
Please seek a second opinion. There are treatments out there for when cancer has went to the liver. Doctors don't know how long we have and I know that in alot of cases they've been wrong. There is a difference between cancer that has metasized to the liver and liver cancer. The liver has the ability to regenerate also. Would your husband be open to go to a different doctor?

MichelleP · July 2009

tiny one said:
Please seek a second
Please seek a second opinion. There are treatments out there for when cancer has went to the liver. Doctors don't know how long we have and I know that in alot of cases they've been wrong. There is a difference between cancer that has metasized to the liver and liver cancer. The liver has the ability to regenerate also. Would your husband be open to go to a different doctor?

Thank you all for your kind
Thank you all for your kind and powerful words of encouragement. That's something I need very badly right now. This wasn't the first time the doctor suggested hospice. He mentioned it to me right after the diagnosis too. It's so confusing to me because I've read about many others here that have had worse cases and were diagnosed years ago. I mentioned those cases to the doctor and he basically said that those people are maybe one in a million. Well, geez maybe we're one in a million too, right? I also asked his opinion on the idea of myself having a ct scan (paid by me of course) just to make sure all is okay and he said that even if they did find cancer it wouldn't change the prognosis. SAY WHAT??????????? (By the way these are words from the pcp, the the oncologist)

There are only two oncologists here where we live and the other one I've heard awful things about. The one we are using now I've heard good things about and I believe he is very experienced, so if it turns out that my hubby has liver mets I will ask that we continue chemo. I just hope the insurance company doesn't deny us like the seem to have a habit of doing to us.

We did go for the ct scan today and should hear something soon I hope. Hubby is still having pain in his right abdomen which worries me. And I'm wondering...he did have an ultrasound last week for that pain and they only said they saw inflammation and prescribed antibiotics. Said nothing about seeing anything else.

I'll keep you all posted on the results....and please let me thank all of you again for your encouragement. I don't know what I would do without you!

Warm wishes and prayers to everyone

tiny one · July 2009

MichelleP said:
Thank you all for your kind
Thank you all for your kind and powerful words of encouragement. That's something I need very badly right now. This wasn't the first time the doctor suggested hospice. He mentioned it to me right after the diagnosis too. It's so confusing to me because I've read about many others here that have had worse cases and were diagnosed years ago. I mentioned those cases to the doctor and he basically said that those people are maybe one in a million. Well, geez maybe we're one in a million too, right? I also asked his opinion on the idea of myself having a ct scan (paid by me of course) just to make sure all is okay and he said that even if they did find cancer it wouldn't change the prognosis. SAY WHAT??????????? (By the way these are words from the pcp, the the oncologist)

There are only two oncologists here where we live and the other one I've heard awful things about. The one we are using now I've heard good things about and I believe he is very experienced, so if it turns out that my hubby has liver mets I will ask that we continue chemo. I just hope the insurance company doesn't deny us like the seem to have a habit of doing to us.

We did go for the ct scan today and should hear something soon I hope. Hubby is still having pain in his right abdomen which worries me. And I'm wondering...he did have an ultrasound last week for that pain and they only said they saw inflammation and prescribed antibiotics. Said nothing about seeing anything else.

I'll keep you all posted on the results....and please let me thank all of you again for your encouragement. I don't know what I would do without you!

Warm wishes and prayers to everyone

Doctors don't know
There are a couple of people who are in my support group that were told that they were terminal. They responded well to treatment and are proving the Doctor wrong. I've heard of cases where one doctor has told someone to go home and get their affairs in order. They didn't, they saw a different doctor and years later are doing well. This doesn't happen in every case but please don't give up. Sending you hugs and saying prayers.

SonSon · August 2009

Whimpy...
Well, first, I can't believe that the doctor is making any sort of analysis of what the possible action to take is without performing the appropriate tests first.
The doctor is whimpy - cannot do his job and wants you to do it for him (or her). Personally, I would MUCH prefer having a doctor tell my hubby or other loved one to seek hospice and then let me be the one with the soft shoulder and strong arms to comfort and help him. Doctor would be the target of initial anger, not me.
I agree with the others here - get a second opinion ... even if you have to travel far to get it.
I think by the time of this posting you have had the CT Scan already - will you tell us how it went, any news from it?
Fatima

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