:( Advice?

[michellep]

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.

[RandyW]

Michelle I cant give ya any advice but I can give ya some thoughts and Prayers right now! I know you will get some soon on this topic though!!

[Carleen]

Hi Michelle,

I'm a bit confused. I don't seem to understand why your doctors are so hell bent on calling it quits with your hubby. He is still so relatively new to this fight, and from reading your bio, it doesn't sound like he's physically failing either. Just because he's got liver mets doesn't mean "the end". My God, my hubby was diagnosed with liver mets, lymph node mets, from day one, and he fought a good 3 1/2 years more. From there he got brain mets.... fought almost 2 years after that, he got mets in his pancrease... fought through a year after that.

Are they just lazy? Are they just pessimistic, doom sayers who are too jaded to even try and extend his life even if it doesn't mean a cure. Why is it their choice to say that it's better for him to have 9 months in hospice with no hope, than possibly a few years? Is it the expense of treatment they're worried about or is it really your husband?

You seem to have fought so hard already for your husband against terrible obsticles, and it seems like there are few medical and insurance professionals on your side. I'd fire them all, and go find a real doctor. One that actually values life, the fight for it, the hope of it, and the quality of it.

My Keith also took anti-depressants, and did so from early on. Not so much because I thought he should to face his own mortality (which would be reason enough) but because the fight is stressful, and emotional, and we agreed if anti-depressants could keep him from getting mentally and emotionally at the end, then he had a better chance of beating it all together.

I am so sorry you keep getting faced with these nincompoops who try and drag you down and steal all your hope. If you and your husband don't want to give up, Don't give up. It's not their choice, it's yours.

Sorry, I may not know all the facts, but just from what I've read from you previously it doesn't sound like this is what you want, and I just get so mad when I hear about medical professionals assuming they are God and forcing their biases and statistics down our throats.

Sending lots of prayers and well wishes. Good luck dear!

[ChristinaMarie]

I have to agree with Carleen. Although we don't know all the details, the presence of liver mets is certainly not "the end" and people have indeed continued treatment after they develop. If your husband is up for continuing the fight (and it sounds like he is), I would definitely seek out a 2nd opinion if your current oncologist wants to discontinue treatment.

Good luck with all of this.

[Patti B]

((((Michelle)))))

I too have to agree with Carleen and Christina Marie. I am also confused because your post says that his CAT isn't scheduled until tomorrow and they are already convinced he has liver mets. Gee, wish my onc had that crystal ball so I didn;t have to drink that putrid stuff every 9 weeks for my scans!!! And yes, people have beaten liver mets.

I would also consider that if they truly feel he needs to stop tretment, they should be the ones to tell him, not you. Or, have the second opinion tell him if thats the route you chose to go.

Please keep us posted. I am so sorry you are dealing with more crap.

Hugs - Patti B.

[SandraL]

I agree with others that you should at least wait until you have the results of the scan. And even then, a second opinion would be in order. And I agree that your dear hubby should hear it directly from the doc. It is his choice to make and in his heart, he knows what those choices are. It just takes a long time to be able to digest them and longer yet to be able to discuss them. My heart is with you

Sandra

[ursol]

Michelle,

I'm praying for your husband. I also want to say although I don't know all the details, I agree with Carleen. Get another opinion.

Lilly

[fillise]

1. Wait for the can before you decide to do anything.

2. Perhaps the reason your husband doesn't want to discuss any of this is that he feels that these doctors aren't listening to him. It's his decision, not theirs.

3. Perhaps it would help to have the discussion framed as "here's what your doctors think. I need to know what you think. If you want to get a second opinion, we will. I think we need to see what the scans show first, but treatment is still an option with liver mets so if we need to find doctors who are more aggressive we will. Tell me what you want to do."

4. Shame on them for making you have this discussion with him and not doing it themselves.

My mom just found out she has a small met to the liver today. She starts a new line of chemo on Monday. There is no need to stop treatment is that is not what he is ready to do.

Susan

[michellep]

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

[Maryanne]

Sorry to hear this, and I remember what Colleen went through and Keith lasted (incredibly) so much longer than what they were first told.

Please get a second opinion as I don't feel you should just let this go. Then again I really don't know all the facts. But it definetely is worth looking into a 2nd, and 3 rd opinion if necessary.

I know cyberknife besides the lung is also used for liver... that might be an option there.

Keep us posted....I know how scared you are but there may be other options and with his attitude it seems he will be willing to try anything.

Maryanne

[Barb73]

Michele,

My husband, was originally dx'd as a Stage IIIB, and he was definitely that, but in shorter than a year, he was deemed a Stage IV. Lymph node in neck began to swell.

Still here after 4 years and 7 months, and that would be one in a million? No, I don't think so.

Bill has been through the mill and back. He has had WBR (whole brain radiation) as well, and there were those dire postings predicting that he would be really damaged by that. I thought I would have an imbecile on my hands. NOT.

As for liver mets, they are not an automatic a death sentence. I know this from a very close experience regarding my own mother and colon cancer.

Please, seek a second opinion.

Keeping you in my daily prayers,

Barbara

[michellep]

My Dear Barbara...I read the story of the journey with your husband. It has been such a long one for you both and it brought tears to my eyes thinking of everything you two have been through. And then I was thinking that I myself must be so weak compared to others . I do indeed gather strength from each and everyone of you each time I read about your journeys and will continue to do so....at least I hope anyway. It's so darn hard to do this for me mostly because my husband "refuses to discuss cancer with both me and his doctors". Which leaves so much on my shoulders because the doctors have no choice but to tell me alone. I have a few friends that I can talk to, but none of them have ever dealt with cancer so obviously they truly can't understand. I just feel so darn alone sometimes and so overwhelmed with all this information. It's been far more than a blessing to find all of you...the only thing missing is someone to physically put their arms around me and say the usual " everything is going to be okay"......perhaps empty words, I don't know....but just those "arms" would be great.

[fighting4mom]

Hi Michelle,

I want to add my voice, and prayers and virtual hugs to you right now! I know from reading your previous postings (calling 911 was a stroke of genius!) and your fights with the insurance company that you are no pansy. What you have dealt with thus far may have depleted some of your strength, but keep coming to this well and you shall be reinvigorated. I hope and pray that your dear hubby will take a queue from you and find the strength to have the tough conversations and adopt the attitude of fight.

I realize you said that there are only 2 oncs in your area, but what about calling or emailing the oncs at Stanford??? They have a great program! (I previously lived in CA and my roommate was treated (and dare I say beat - she's survived 8 years - non Hodgkin’s lymphoma)). Maybe a doc there could review scans, notes, etc. and give you a 2nd opinion and a more positive outlook? Maybe there is a way (I know there is a will) to get treatment there? Don't give up. Never give up.

I believe in miracles, prayer and positivity and I believe you and your husband are worth at least the chance to be "one in a million".

You go girl! We are all behind you!

Blessings,

Kimberly

[jstdzy]

Hi Michelle,

Sorry for the late reply. I had to get a grip on myself. I wanted to shake your husband and slap his doctors! I can't tell you how to live your life, but I would talk to my husband and say, "Look, I can't do this by myself. We are a team and I need your help. You aren't the only one that is scared out of their mind. So please help me". Then fact the docs are so willing to call hospice I don't understand either. I know you are on Grace a lot, did the ONCs over there give you any insight? I'm sorry, all I can really do is send prayers your way. Wish I could get on a plane and smack some people around for you! Oh yeah! You are pretty darn good at that without any help from me!!! Hang in there!

Dana