He won't do surgery...please help me.

[Adrian]

I posted while you were responding to Ned. I will respect your request to stop trying to convince you.

Adrian

[recce101]

"MM" I've just gone through this same scenario with my twin and she died.

As I read your post, your sister chose NO treatment, but your husband is opting for an AGRESSIVE treatment, chemo/radiation. And from your description of what he said last night, I'm even more convinced that this MAY be the best approach for him. I don't think it's a death sentence, any more than life itself is.

"Adrian" Ned, what if you found out that for Mike, his fear was simply fear of surgery or another bad anesthesiologic experience, then what would you say?

I don't think I'd be able to know that for sure. All I can say is that since 9/1/2006 I've been a lot more respectful of, and receptive to, intuition than in my previous 71 years.

Aloha,

Ned

[J.C.]

Sharon,

I'll put my two cents where it is not needed.

Mike (my husband) could have been operated

in the States, where treatment are more advanced

than here in Quebec, Canada.

We had private insurance that paid for needed medical

expenses anywhere in the world, he refused.

Tried for him and for myself to make him change his mind,

impossible........stubborn Irish man.

so he had chemo and radiation never got sick

during the treatments but *no operation*

After I accepted his decision during and after

the treatments were finished,

we had the most enjoyable time of our life,

He was bedridden from October 7th am,

councious and happy and died while

sleeping on October 13th..........

His only regret, having to leave me, but

proud of the marvelous time he gave me.

He made the best decision possible for himself

and was happier with quality of time instead

of quantity of it.

Jackie

[jaminkw]

MM: I can't even imagine the emotional pain you are in. You said you lost your sister 3 weeks ago? That's no even enough time to begin grieving before having to face this issue with your husband. I'm throwing in with those who say he needs to make his own decision, and following his intuition knowing all the facts appears to tip the scales for him against the surgery. What is important for you to know is that the situation you are in--between a rock and a hard place--is considered one of the primary stressor situations. Just remember, it's o.k. to feel like you are damned if you do and damned if you don't. Your belief system here--believing that accepting surgery would be his best choice and it's your duty to convice him of what's "best" for him vs believing you will put a wall between you (like you feel you did your sister)if you push for him to have the surgery. You can work your way out of this double bind by changing one of those beliefs or choosing one over the other. Follow your instincts or perhaps keep following your instincts because you sound like you already know what you have to do but it is so hard!

Judy in Key West

[MM]

Ned, Jackie, Judy thank you so very, very much. Thank you. Adrian, Connie, Katie thank you also, so very, very, much. And all who've posted trying to help.

I've been on the internet and have belonged to various groups on a wide variety of subjects for years. This thread has been the hardest and most heart wrenching I've ever experienced.

I needed each one of you to say what you did. Last night I prayed and cried my eyes out. I tried to look at the chain of events that have taken place over the last five months to know why Mike made his decision, why I basically supported him and didn't rant and rave and try to change his mind.

I'll never know if it would have been different with him than it was Diane. In Oct. Mike's tumor was 2.4cm. By January 14th it had grown to 3.97cm with a VDT of 52 days and an SUV steady at 14-14.3. He started smoking again on December 17th after quiting 5 weeks. He felt that if he started smoking again, they couldn't do surgery because they had told him in no uncertain terms he HAD to be smoke free for 5 weeks. He said it was his protection against any influential talk trying to convince him to have the surgery.

Some of you have made me cry and I wanted you to stop because it not only hurt, it compounded the guilt. But you are the ones who KNOW surgery is the best option and you were trying so hard to have Mike make the best decision. Other's of you also knew this, but you gave an understanding that balanced out the others. All of you I will be forever grateful to because I won't have to say, I didn't know. If only I knew, etc. If only...

Because of all of you I'll be able, from here on out, to digest these "what ifs" and come to terms with them slowly through thought and prayer.

So again, I KNOW you're right, my heart breaks but I thank each of you for your heart wrenching posts. I know it has to be hard on those, like you Connie, who fight, fight after fight and then see someone come on here only willing to put up what is probably a partial fight. Yet you fight on, not just for yourselves, but for others.

From the bottom of my heart I thank each of you for your caring. For a while I didn't want to come back here, you weren't each holding me in your cyber arms and coddling me. But I realize now, I got honesty and the honesty was given because you do care and love the human being faced with this disease. Because of the understanding of Ned, Jackie and Judy, the sometimes brutal honesty was balanced out with just enough understanding to keep me coming back.

What a group this is. This may sound strange, but you all feel more like family now. I hope those who still are angry at Mike and I (not personally, more at the disease) can forgive us for choosing the path he chose and will continue to be with us on this path. [/b]

[Kasey]

(((Sharon))),

I have not responded before because I do respect everyone's right to choose their own path. None of us here have walked in YOUR shoes, so we do not know all that you do. But I must say, I cannot imagine anyone is angry at you OR Mike. Mike chooses what is right fo Mike. You support that. We support you. That's the way it works. Some here would not have gotten 4 opinions like I did, but I was supported nonetheless, because it was MY decision to choose.

This is the place you can cry if need be, vent if need be, get info if needed. I have heard every word you've said, and I can feel you intense frustration and angst. Let us lift you up so you can help Mike fight this fight.

Kasey

[fillise]

Sharon,

I suspect that my post was one of the ones that has made it difficult for you and for that I'm sorry.

I'm here to support you 100%. I can't imagine what this has been like for you, expecially with the loss of your sister, but it sounds like Mike "knows" that the surgery is not for him. Sometimes we do need to trust our instincts. Does that make it any easier for you--I don't know, but please know that we will be here to support you through this.

If we(I) overreact interms of wanting people to pursue aggressive treatment it is just that we get so many people here who have been told that their situation is hopeless and we want them to see that it is not. Sometimes we (I) might go too far in that effort.

If you are going to be Mike's support through this, then we want to be your support--100%--ok?

Susan

[chloesmom]

I'm with Kasey. Everyone here has a certain experience with lung cancer, and everyone can draw on their own experience, yet they can't put themselves in others' shoes.

We've had people here who choose to do no treatment. That's the purpose of "The Path Less Travelled" section here on the board.

While no treatment was not the path I chose, I think we all need to respect that right for your Mike.

I had an in-law who chose no treatment. In fact, she and her husband told no one about her diagnosis until it became obvious that something was terribly wrong. And it just so happened that she had a career as a registered nurse, so she was not in the dark about her diagnosis, surgical possibilites, chemo and radiation, etc. Yet, she decided that she wanted no part of treatment.

My heart goes out to you and I can understand your grief over this and over the loss of your sister. I think it's your responsibility to help him gather the information he needs to make a decision. But, it is the patient's decision as to what treatment to take.

I hope you know we will be here for you and for your husband, whatever decisions you and he make.

Cindy

[MM]

Cindy, Susan and Kasey, thank you. Susan please know it was posts like yours, Connie's, Katies, Adrians, etc. that opened me up to look at the guilt and fear I was trying to bury. For emotional health, perhaps you've done more good than any one else.

Please don't ever hold back. I needed those posts to be able to honestly look at where Mike and I are. If everyone would have just coddled me, I'd have know somewhere inside that this issue of guilt was unsettled. Because of you and others, I can honestly go forward. Because of Ned and others who were the balancing factors, well, it just feels balanced.

There may always be a part of me that blames myself for not ranting and raving at Mike. But there's another part that realizes I, and my family did that with Diane and it didn't work. Perhaps it would have worked with Mike, I'll never know.

I'm just grateful for each one of you. This is a great group of people who REALLY do care...enough to be honest, enough to support, love and just be there.

Thank you!

[MM]

May I add to the above a special thanks to Ned, Jackie, Judy and others.

After thinking long and hard last night, crying, and praying, I understand surgery is the best option for a cure if it's possible. But I am also very comfortable now with the understanding that sometimes instincts, when they are as strong as Mike has them, has to be paid attention too.

I am resting much more comfortably in my support for Mike and his instincts. His decison, and I thank all of you.

Somehow during this less than 24 hour discussion, I've reached the point of peace with what Mike is doing and I owe that to all of you and my Lord.

So once again. Thank you!

[MM]

Thanks Katie. I know, Connie pointed it out in the beginning that my original post was quite confusing. I'm sorry if it was, that was my fault.

The night I wrote it I was so confused and in so much emotional pain.

[MM]

I've been riddled with the fear that I've not done enough to talk Mike into surgery.

Last night at 10:30 I called my brother-in-law (Diane's husband) asking how he went through her decision to do nothing about her cancer. We talked a long time, it helped some, but not much.

So this morning I called our radiologist. She's a wonderful young lady that we immediately liked. We had a LONG conversation and I thank the good Lord I called her.

She admitted she pushed us hard during our last (and first) appointment with her toward surgery. However, after we left, and hearing why Mike is refusing surgery, she said she took a Long time reading his charts and even comparing them to some of the medical journal reports.

She says now, after reviewing everything, she's agreeing with Mike. She said he had very valid reasons for not wanting surgery and she felt if he had it, because he's such a risk, she wouldn't give him much hope of much of a life after surgery.

She went on to tell me of other patients with Mike's level of lung damage that didn't make it through surgery or their life after wasn't what anyone would want. She mentioned one man who, a year later, although considered cancer free is still in an assisted living home because of post-operative complications. She said there's a strong possibility, because of the conditions of his lungs he wouldn't ever get off the ventilator, if he made it through surgery.

Of course she said no one knows, but again, because of Mike's lung history, she actually said if she had to make the decision for herself she would probably make the same one Mike has.

So, it's amazing me how right his own instincts were and how strong he has been to stand up to everyone for his own quality of life he has left. I know he knew, even though I tried not to say, that I too was wanting him to have surgery. Yet he stayed strong.

I am so grateful I talked to our Dr. this morning. Just wanted you to all know where we are now. He'll probably start chemo and radiation next week.

[Connie B]

I'm glad you found some comfort in your talk with the radiologist. I can't help what wonder what the surgeon's opinion would be, but now you and Mike are on the same page and that's all that counts.

Put this to rest and move on and enjoy your lives together.

Time to move to the next chapter, this one is solved and you both agree and have your answers. Good for you both!

[MM]

Thank you Connie. Our radiologist said the doctors had a "conference" once a month to review and discuss patients and potential treatments. She asked permission to bring Mike's case up and I told her "by all means, please do". So, perhaps we'll learn even more in a few weeks.

Yes, I am much comforted, but because of this group I'm not totally giving up the idea of surgery or talking with Mike about it.

[snappy]

Hello MM, I do know what your question was. I am going a little away from it because I didn't see any mention much about the COPD. People often think that disease is a death sentence and it is not. If severe enough, then there are changes that may have to be made but you still have a life. Yes, maybe some even wear o2. Diabetics use insulin, one shows and one doesn't. It is not the end of the world.

My question is: Had you conversed on message boards with people that were well informed and actually had surgery with COPD similar to this.

I know people do surgery and even at lower FEV levels than your husband. However, I have not read any with cancer surger, except in a mild stage of COPD. Maybe there would be a problem. My experience listening to people about COPD and surgery is you have to get the heart Dr, lung Dr, and surgeons together and work together and the one that administers the anesthesia, which is very important.

I am not getting on anyone for smoking, that is their choice. HOWEVER, if he continues to smoke the COPD will progress more rapidly and it might take him before the cancer. If he would quit smoking (I am aware that is very tough), the COPD is not cureable but it can be manageable and slow the progression. There are a few other things that would help like exercise, etc. I just wanted to be sure you did know this so he has all the information to weigh this.

I wish you both the best of luck. I do hope you can find the peace of mind you are looking for. We can oly do what we feel is the best thing at the time.

[Maryanne]

Hi MM,

I just read your post and all your responses. I am glad that you spoke to the doctor and you undestand your husbands reluctance to have surgery. I'm so glad you have come to terms with this and it must finally be a load off your mind.

At first I was like... have the surgery he is lucky to be a candidate. However after reading about his COPD and his breathing level, I understand his choice.

The only thing that really bothers me which was not brought out until actually Snappy's post before mine was that he started smoking after he stopped.

As was mentioned it would only deepen his COPD and not to mention his emphysema. As emphysema is directly related to smoking and whatever stage it is in it will stay at the stag when a person quits smoking. It will only continue to get worse if he keeps smoking and will eventually have to be on oxygen.

As I repect his opinion for no surgery and to do treatment, he is only hurting himself by continuing to smoke. In other words he is defeating his own purpose.

If anything please try to get him to stop if he values his existence.

I may be way off here, but for some reason that stood out to me when I read you first post.

I hope I am not stepping out of line here. Just trying to help as Iam concerned for him and you.

Maryanne

[MM]

Thank you both, and no you're not stepping out of line here and yes, you're both right! So, I've gotten him the Chantex, Committ and gum, anything that will encourage him to quit.

Thank you so much!