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

[MM]

Mike and I have been through 5 months of a nightmare. Long story short, we were going to a cancer stat center where the doctors were contracted out with our insurance. They kept sending us to doctor after doctor and test after test.

After 5 months of no treatment. We finally figured out what was going on and changed all our doctors so they are NOT contracted out (out of network it's called).

However, throughout the tests and appointments the doctors have been trying to get Mike to do surgery. He doesn't want to.

His FEV1 numbers on the first pulmonary function test were only 42% and after quiting smoking, taking Advair and Spriva (spelling), plus physical therapy his FEV1 numbers only got to 56%. He has chronic bronchitis (bad) and emphysema so he does NOT want surgery.

He asked me for my opinion and I told him this was a decision he had to make. I did re-quote all the test numbers and the negatives we were given, as well as stating that all the doctors felt surgery was the best way to go, then I again told him how much I love him and again said this was a decision only he could make.

We were told today by the radiologist that the cure for this cancer with just radiation and chemo was quite low.

I feel like I should have told him HAVE THE SURGERY, yet I too am scared of it for him. I feel like I'm going to be to blame if he gets really bad and doesn't make it, after doing just chemo and radiation.

If I convinced him to have surgery and it turned out bad like he's scared it might, then I'd feel to blame too.

How can I not feel to blame?

The cancer has an SUV of 14.3 and a volume doubling time of 52 days. If he goes for surgery, he'll have to again quit smoking for 5 weeks before he can even think about it, and he'll have to have a split lung test. So, it'll be a while before he can have surgery.

The cancer sits in the lingular portion of the left upper lobe with extensions that have reached the middle layer of the lung lining and the onc. said the linear extensions are heading for the heart.

I'm so scared and don't know what to advise him to do.

Can anyone give me some support and maybe suggestions?

Thank you so!

[Connie B]

Are you aware that radiation and chemo are hard on a person's lungs and heart as well? In my opinion these treatments are just as harsh or serious as surgery. Looking at ALL the options is the best way to go, but if ALL these doctor's are saying surgery then I would think they feel Mike has a good chance of coming through it.

There aren't any easy answers in this journey. I'm not sorry I did surgery or chemo and radiation, and yet I have heart issues today because of the radiation. Surgery, chemo, radiation all gave me 12+ years.

Best wishes.

[MM]

Hi Connie: As always when I do post, you are there on the spot and I so appreciate you, thank you.

Yes, Mike has been made aware of the drawbacks of radiation and we've talked at length about the surgery.

When we woke this morning, fresher than we were last night (he had had 3 hrs of sleep and me 5) he was more adamant about not having surgery than he was last night.

I have to support him in whatever decision "he" makes and perhaps I'm wrong, but I can't try and sway him when he has such strong feelings with regard to the treatment plan he wants.

This morning, having had some sleep, and once again satisfying myself through listening to him, radiation and chemo is the way he wants to go.

If he felt STRONG about surgery, I would probably be jumping up and down with a big grin on my face and then sitting and crying with relief.

But it's not what he choses and having gone almost the same route with my twin (who passed Jan. 15) this is so hard. My twin chose to have NO treatment. She lived two years and the last 5 months were horrible. Mike knows this, and still feels strong about his decision.

I can only support and love him, be there for him and come here to talk. Which I hope is OK.

Blessings!

[Kasey]

Gosh, Sharon, you are in a fix, aren't you? It must be so very difficult to wish something different than what Mike wants to do. I've read your Profile, but I cannot recall if you mentioned ever getting another opinion??? Would Mike go for that? And I understand some of his issues, but has he ever really explained just WHY he is so adamant about his decision?? Just wondering. I believe he's staged at Ia ~ is that correct?

I have absolutelly no advice. I guess you can just keep doing what you are doing, and that is to be supportive. Another opinionn though, couldn't hurt a thing, you know?

Well, keep posting, researching, and supporting. I wish I had answers for you......but don't.

Kasey

[MM]

Thanks Kasey. Mike is now 1b because of the growth between CT/PET scans (from 2.4 cm to 3.97 cm's in a little less than 3 months...and it's now been a month since the last one...the SUV is 14.3).

Since we have changed up all our doctors because of "out of network" problems with the insurance companies and getting doctors at the Cancer Stat center that can see us there, but not in their offices. So, changing up both the medical oncologist and the radiation oncologist I guess you could say we've gotten our second opinion and both sets of doctors have stresses (and stressed!) the advantages of surgery to Mike. He's still adamant about "no" surgery.

As a wife (and quite often our powers of persuasion with our guys) I think I could talk to him until he gave into surgery...but that does not feel right at all. It has to be his decision and I guess I just wish he'd want surgery.

[fillise]

Sharon,

I wonder if Mike doesn't want the surgery because he doesn't think it will make a difference in the long run. So many people hear the words "lung cancer" and then think there is nothing that can be done for them. There is also a perception that treatment is worse that the disease. Those perceptions may have been true at one time, but are not anymore. At 1b he has a good chance of, if not a complete cure, a good and long remission. I haven't had the surgery so I can't speak to how hard it is, but others here have and will offer their experiences.

Has Mike talked to other LC patients? It seems like you both have talked to a lot of doctors, but maybe if he talked with people who have been through the surgery then he would be making a decision based on a more complete understanding of the process. He might also be able to talk to someone who has confronted their fears and can help him with that.

I also wonder (and please don't read this as blame because I don't mean it in that way) if he just doesn't want to have to quit smoking again. People tell me that quitting smoking is one of the hardest things they've ever done and if he is stressed by everything else, his smoking may something he feel he just doesn't want to give up. Or maybe subconsciously he blames himself and doesn't think he really deserves to be treated. If it is one of the things that he feels like he needs during this stressful time, I can see why he might resist giving it up. Again, this isn't blame, but it could be a reason.

Ok, I'm way beyond my pay grade (which would be 0) on the psychoanalysis. Ultimately it is his decision, but it also affects you. You should at least have the opportunity to say what you think about his choices. Being supportive does not always mean agreeing with everything someone wants to do just because they want to do it.

Good Luck,

Susan

[Connie B]

"MM"]

However, throughout the tests and appointments the doctors have been trying to get Mike to do surgery. He doesn't want to.

He asked me for my opinion and I told him this was a decision he had to make. I did re-quote all the test numbers and the negatives we were given, as well as stating that all the doctors felt surgery was the best way to go, then I again told him how much I love him and again said this was a decision only he could make.

We were told today by the radiologist that the cure for this cancer with just radiation and chemo was quite low.

I feel like I should have told him HAVE THE SURGERY, yet I too am scared of it for him. I feel like I'm going to be to blame if he gets really bad and doesn't make it, after doing just chemo and radiation.

If I convinced him to have surgery and it turned out bad like he's scared it might, then I'd feel to blame too.

How can I not feel to blame?

I'm so scared and don't know what to advise him to do.

Can anyone give me some support and maybe suggestions?

Thank you so!

I think where Kasey and I were going with our suggestions was we were trying to help you to help Mike make a decision being that's what you were asking for. In one sentence your asking for help on a decision, and in the next sentence your saying it has to be Mike's decision and that Mike is Adamant about not having sugery. And as stated in your message, the Doctor's are all for surgery. This is a roller-coaster ride of emotions, but if you leave this up to Mike,(and yes, this should be his decision) then you need to let it be HIS decision and go with that.

I agree with the doc's in that surgery is the way to go. But this isn't about me. He is lucky enough to be able to have surgery, most people aren't.

Best of luck to Mike and to you.

[MM]

Forgive me..the written word sometimes doesn't work well, especially if one is tired like I was last night.

I was asking (for myself) for support with regards to allowing this to be Mike's decision. I was asking for support (or otherwise) for my not working hard to convince him, against his will, that surgery "is" the best option. I wasn't asking for the best way to go, I know, according to the doctors and many here, surgery is best. I guess I was tired and felt terribly guilty for not giving Mike the heavy hand when it came to making a decision. Part of me feels it's my duty to set him straight as to the best way to go, and if I don,t, then I'm to blame if the outcome is bad. Another part of me feels I have to let him decide and support him on that decision.

As to why Mike fears surgery, he has a fear of surgery because they lost him one time before while under anesthesia. He has a fear of being left with one lung (and lower left lobe) to do all the work when he has his bouts (about 2-4 times a year) of bronchitis. His right lung, the one not removed, shows damage has been done to it already.

He is a moderate risk for surgery because he has COPD and when he does have his bouts of bronchitis(he's had bronchitis for 30 years and has beginning emphysema)they are very, very bad. He's afraid that he'll be on oxygen after surgery because of his risks, and has been told this is a possibility. He's stated a lot of reasons for his fears.

I apologize if I wasn't clear in my original post. Guess I'm not as good at writing as I sometimes think I am.

[Connie B]

Oh Good Heaven's there NO NEED to apoligize for anything. As I stated this journey is an EMOTIONAL ROLLER-COASTER RIDE, not just for the patient but mostly for the caregivers. I remember the emotional roller-coaster ride when I too was a caregiver. It's TOUGH!

Please know, we too are just trying to help you get through this the best way we can, and we don't always know all the details about someone as you may know. So we can only go by what is stated in the person's posts.

I only had your best interest at heart. My very best wishes to you and Mike.

[MM]

Thanks Connie. You're right, this is such a roller-coaster ride of emotion and experiences. And, to add to what we're going through, I just lost my twin 3 weeks ago to breast cancer. She had decided on "NO" treatment whatever.

I begged, cried, argued and tried my best to get her to do surgery and chemo, etc. But to no avail and the last 5 months were so difficult on her, I and the family. Even though the last year she had my total support, I don't think she ever felt she had it totally because we didn't support her decision in the beginning.

I don't want to put Mike through the same thing, so I'm again wanting to beg, cry and argue, but not doing so.

I guess my confusing posts shows the emotional struggle and you let me know you understand this roller-coaster I'm on, and that's honest support, probably exactly what I need. Thanks for letting me know I'm not alone in this struggle.

Well, we're off to get the CT simulation test done.

[Littlegirl]

Sharon,

My mom has emphesema/COPD as well and she was told she could not have surgery to remove her cancer due to her breathing issues. The doc said if she were to ever need any type of surgery there was a good chance she would never come off the vent. (I think that news scared me as much as hearing she had cancer!) She had chemo and radiation, and the docs now consider her in remission. Just wanted to let you know it can be done. Also, have you looked into the possibility of cyberknife? My mom's tumor was too big for cyberknife but it sounds like a very good form of treatment.

And you know what...no matter shat decision is made, you are not to blame and he is not to blame. It is what it is. It is his decision to make and as caregivers we can give advice but utlimately we just need to be there to support them in any decision made.

Hang in there!

[MM]

Thank you Littlegirl, that helps.

Yes, we've checked into cyberknife and almost got it, but found out that, a big if, our insurance company OK'd it (and they NEVER have yet), the cost to us would be a minimum of $25,000, probably more like $60,000.

I guess it's just hard knowing he's not going to do surgery.

[Mendy]

MM,

I was in your shoes not too long ago and told my husband I would support him no matter what he decided. He was lucky to be a surgical candidate. I reminded him that his best shot at beating it and being around to help raise our children was surgery. My husband has COPD and quite a bit of lung damage but his pulmonary function was good enough to withstand losing a lobe. He recently had surgery on his other lung (yes another thoracotomy-matching scars) and it has been challanging but he is doing ok. He did have radiation and chemo after his surgery. The good news is that this June will be 2 years from the original diagnosis and his last scans in Oct. were clean.

I know this is a difficult position to be in. He needs to trust his doctor (especially the surgeon). They won't operate if they think it will make him worse. They want to give him the best chance for a cure.

Feel free to pm me if you need to talk.

Mendy

[Adrian]

At the risk of sounding less than sensitive:

I suppose I understand the fear that one might have of surgery given a prior bad experience---But really, your husband has a rare opportunity to go for cure, which the vast majority of people diagnosed with lung cancer don't get (my dad didn't).

Go to the best surgeon you can find, get the best anesthesiologist out there---but don't let him throw away the best opportunity out there to get cancer out of his life, which is surgery.

Chemo/radiaition is no walk in the park and it is certainly no guarantee that it will fully rid him of the cancer.

As you stated, it ultimately is his decision to make, but your pivotal role here is to guide him towards the direction that makes sense. As you clearly understand, the stakes are extremely high, and in that sense it is the most important decision he has (probably) ever made. But given the probabilities, if not dying of cancer is his goal, there is a statistically right choice and wwrong choice. Get him the surgery, worst case scenario, you pushed him to the decision that was absolutely the recommended course of action.

[Connie B]

I agree with Adrian 120% your Mike is lucky enough to have doctor's that are WILLING to offer and do surgery on him. He's early stage and he has GOOD chance of getting rid of his cancer via surgery.

I KNOW all to well all about surgeries. I just got done having my 4th, YES 4th open heart surgery. I had 7 Cardiologists tell me I would NOT live through a 4th surgery. Well, long story short, I found an OUTSTANDING TOP NOTCH SURGEON how not only told me I would make it through this surgery, but he also fixed the problem as well. Without the surgery I would have been dead within the year. Not so say I may not dy tomorrow, but at least I know I gave it all I got and I went for the gusto!! The truth is, those 7 doctor's that said I wouldn't make it through surgery, didn't have the GUTS to do the surgery. They didn't have the first hand knowlage. I found someone who did.

Best to you and Mike. (okay, I'll butt out)! It just sadden's me he won't even think of doing surgery, but it's his and your choice.

[SBeth]

Sharon,

Arm him with all the FACTS, the pros and the cons of having the surgery; then love him and support him in whatever decision he makes regarding his treatment plan.

No matter what path he chooses, you will always find yourself saying "What if".

Just love him and support him!

[MM]

Thank you SBeth. I've given this a LOT of thought and brought the subject up to Mike a number of times, even to the point of telling him I'd perfer he do the surgery, but I understand how he feels.

I have to support him. I didn't support my twin and even though in the end I did because there was no longer any thing else to do, the lack of support in the beginning put a wall up between us for quite some time.

When I went home to nurse her, that wall came down, but I know there is a line you need not cross when someone has made that decision. I'd want my wishes supported, no matter what.

I'll support him. Sorry to everyone who doesn't understand.

Blessings

[Adrian]

MM, No need to apologize to us.

Make sure he understands the reality of what the chemo response rates are in lung cancer (usually around 10%)---by that I mean, make sure he sits down with his oncologist who can dicuss it with him (and you together). Make sure he understands that surgery is a limited time offer. The unfortunate reality is that lung cancer spreads and oftentimes it does so quickly (to the bones, brain liver etc.). Once his lymph nodes light up, surgery will be off the table for good.

I understand the concept of loving and supporting unconditionally, but I also understand the concept of advocacy. They are NOT mutually exclusive.

Again I write with this fervor because of my own recent experience which culminated in the death 3 months ago of my 67 year old father. It makes me view your situation as if your husband is in a burning house. There are risks in using the fire escape, but you use it if you have it. Especially when you know that the fire extinguisher (i.e. chemo/rad) is not that powerful.

Best,

Adrian

[Connie B]

Once Again, No need to Apoligize. That's not what we're sharing our feelings with you for, so you get upset or feeling sad. (((Sharon))) Not what we're trying to do at all. We honestly are just trying to share with you our very own experiences in this horrible world of lung cancer.

I lost my mother, father, sister and many many friends and even other family members to lung cancer. I am no stranger to this horrible disease.

Then I was dx.d with it. I too thought for sure I was going to die! No one lived from lung cancer, (so I thought and no one I knew had). Well, 12+ years later here I am and I was dx.d late stage IIIB.

So, please no more apologizing, we honestly totally understand what your going through and I understand what Mike is feeling as well. The support is here, and we just want to make sure you have a VERY CLEAR picture of the lung cancer journey. You could say, we're trying to cover all bases.

No matter what your's or Mike's choices are, we will support you. ((((((SHARON))))))

[MM]

Thank you all. It's been one of those rough days, on the roller-coaster ride, today's been one of the down days.

My twin and I had a special bond. She wouldn't do anything, no treatment, nothing. I begged, cried, got firm, nothing, now she's not here.

My heart is breaking over my husband. I've told him that we know, from research and from what the doctors have said that surgery is the best option, far above just having chemo and radiation. He knows all of this. I haven't pushed or prodded, just laid out the facts.

I also know he has an extreme fear of surgery, coupled with his FEV1 numbers being so low and his severe bouts of bronchitis, he's put his foot down and said, "no surgery". So, the only thing left for me is a little bit of hope.

I scour the net trying to find chemo/radiation success stories to hang onto.

When I do allow myself to cry these days, I soon quit because I don't know who I'm crying for anymore, my twin, my husband or other family members (who have diseases other than cancer).

Anyway, thank you so much for having me. My hearts heavy right now.

Blessings

[Adrian]

I totally accept that his reluctance has to do with his "extreme fear" due to the prior bad experience with surgery. This is a rational fear in the sense that there are risks of complications and frankly getting cut open is not too many people's idea of a good time. What I don;t accept is that this fear, however rational, should be the final consideration.

In fact, this is the precise type of fear that needs to be overcome by any and all means necessary. I will not mince words. If he does not have this surgery, in all likelihood he will die soon of lung cancer. Book a therapist, a hypnotist, anybody so that he can deal with his fear, but do not rest on it. I'm sure after his bad experience, he doesn't trust doctors, hospitals etc., but the reality is A. he had a bad experience with the anesthesiologist, but believe me, the (thoracic) surgeons and anesthesiolgists they use for lobectomy's are usually the best the hosptial has to offer and B. surgeons are usually very conservative when it comes to operating on lung cancers. If they thought it was too dangerous, they wouldn't be for it.

People have put their foot down before and said "absolutely NOT," but it turned out not to be the final word. With everything on the line, I do believe you should put everything you have into getting him to make the right decision.

[Adrian]

by the way, the bronchitis may well be relieved or lessened by the surgery as the tumor may well be contributing to his cough.

[recce101]

MM, this will be somewhat different from the other messages you've received. And, like Susan, this is way above my pay grade too. But here goes:

You know how we frequently advise people to ignore statistics, they're just averages, everyone is different, etc...? When we say those things we're usually speaking to a new member who has received a depressing prognosis from an insensitive doctor, but that same approach can apply to other situations too.

I have the utmost respect for the points of view expressed by Adrian and everyone else, but please consider this. Your husband seems to have all the data, and he knows that statistically the best chance of a good outcome for people with his diagnosis involves surgery, but something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him.

If you think there's any merit in that line of thought, and your husband is firm in his decision, then perhaps the best way for you to support his decision is for you to truly accept that same reasoning. Then you would both be in synch, with no spoken or unspoken pushing on your part and pushing back on his part, and you can both plan for and expect great results from chemo and radiation. After all, that's pretty agressive treatment too.

Aloha,

Ned

[MM]

Recce: You said: "I have the utmost respect for the points of view expressed by Adrian and everyone else, but please consider this. Your husband seems to have all the data, and he knows that statistically the best chance of a good outcome for people with his diagnosis involves surgery, but something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him."

That's almost to the word what he said to me last night. He said because of his bronchitis (which he's had for 34 years, the scaring in his right and left lung, because of the pneumonia and bronchitis, and His instincts are STRONG (his words)that he cannot do the surgery. He said somehow he just knows.

I had forgot that, or maybe didn't think it was something to put on the board, but thank you Recce.

Ya'll, I know you all KNOW what you're talking about, I BELIEVE you. Please know I do know his decision may be his death sentence and it's breaking my heart. I've just gone through this same scenario with my twin and she died. Please believe me, I believe you. I've been there, and am in this nightmare again, all I can do now is support him.

I'm trying to cope with this fear, this disbelief that I'm going through this again (this decision to not get surgery). Please, please don't keep trying to convince me to convince him. Again, it's breaking my heart and the fears are so many.

I just need to know I'm not alone going through this scenario. That's all.

[Adrian]

Ned maybe you're right, as you say: "something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him."

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

And if it is concern that his respiratory problems would be compounded by surgery, aren't these concerns precisely the kind that you take up with an expert? My stomach tells me a lot of things, but it is not an MD, so it certainly does not get the final word in my medical decisions.