Mom just diagnosed w/lung ca - can't get parents to consider 2nd opinion

• By LindaFL
• Posted August 27, 2008 at 12:07 pm

Hi. Sorry you had to join us here, but you'll be glad you found us. So sorry to hear about your mom's diagnosis. My mom was diagnosed in May, with surgery in July, and we are currently seeking our 3rd opinion for chemo...so I've got the opposite problem as you!

As far as a 2nd opinion, especially one from Duke, it is definitely the wise thing to do. Duke is a NCI comprehensive cancer center and should definitely have options available that local oncs may not. However, your parents are probably deep in shock and have so many emotions going right now that even thinking about it is too much to handle. I've found that I've had to give my mom info in small doses and as time goes on, she's much more apt to listen to what I'm saying. First, I'd hear what the local guy has to say. Once you have an idea of the next step (as recommended by him), you can make a decision on how urgent it is to get a 2nd opinion. Alot will depend on if surgery is an option or if they want to start right away with chemo and radiation. Your mom's comfort level with the oncologist matters alot too. Most first line treatments are pretty much the same, so you may be able to convince them of a second opinion a little down the line.

Also, I've heard through the grapevine here that MD Anderson (#1 for cancer) will do a 2nd opinion consult without you coming there...so that might be an option. Getting a 2nd opinion absolutely does not obligate you to anything and I would definitely keep pushing for it, but wait and see how time critical it is before you push too much.

Good luck on Friday and keep us posted. I work at a University in Pharm. Outcomes & Policy, so I know you probably have alot of knowledge you can offer here from your background. I hope we see you on the site often...and definitely keep us posted on what happens with your mom.

~Linda

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• By karilynn
• Posted August 27, 2008 at 1:00 pm

I would contact David Harpole at DUMC. They have hotels around if your parents need to stay in one for a week or so. They can even recommend the chemo/radiation that your mother needs and she can have it locally. Best of luck! Keep us posted.

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• By Inkblot
• Posted August 27, 2008 at 1:21 pm

Hi Linda and karilynn,

Thanks for your replies, it is good to hear from you.

I actually have already been encouraged to go see David Harpole by Phil Dennis at NCI/Bethesda Naval (I have friends at NIH, Dennis is a researcher in lung ca with regards to the AKT pathway and MTOR resistance). Phil felt that if mom is resectable (which I don't know yet) Harpole would be the surgeon who could navigate her complex case w/the a.fib, hx of bleed and active clots.

Linda, you are right, my folks are still in a state of shock, I have to remember that. My biggest concern is my dad is a very intelligent, yet very selfish and impatient man. When I mentioned a 2nd opinion, he shot it down saying he wants mom to be treated "right away". Ugh.

I used to work with Roy Herbst at MD Anderson with my last job, I'm sure I could get back in touch if needed as well (although interesting to hear that they do 2nd opinions remotely - of course, mom can't get on a plane right now with all the clots in her legs).

Thank you ladies for the advise and good wishes - I will be back after Friday with an update. Thanks so much!!!!

Dawn

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• By BETTIEANN
• Posted August 27, 2008 at 3:08 pm

In my opinion a comprehensive cancer center is always the best option. Were it me, I would go to the local consult then to Duke and see what both have to offer. It may be that local treatment is the same as the treatment from Duke. In that case then the local option would be the most logical choice. Chemo is chemo and the protocols are pretty much standard. Surgery and radiation are, of course a horse of a different color and that bridge can be crossed when you get there.
As far as pain management, having been there and done that, addiction would seem to be the least of your mothers problems. Given the options that you have at this time, I would do whatever is necessary to control the pain so that concentration can be focused on fighting the disease.
Now to the smoking: having been a lifelong smoker, I have done a lot of researched and pretty much concluded that with the exceptions of one or two of the chemo drugs, you are pretty well screwed if you have smoked more than 100 cigarettes in a life time. There is not much evidence to support that continuing to smoke during chemo has a significant effect on the outcome. Of course I am not advocating that one continues to smoke during chemo for the obvious reasons, pneumonia, breathing problems, etc. I, myself, chose to quit when I was diagnosed. That being said you are dealing with grown individuals who are use to making their own decisions and are not ready to give up that control. At this particular point, you should learn to choose your battles, so to speak.
Hopes anad prayers come your way.
Bettie Ann

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• By beachgoers5
• Posted August 27, 2008 at 8:11 pm

I went through this a bit w/ my mom. We are all in NJ. She got 1st opinion from a local doc, then went into NYC for 2nd one at mskcc and then Philadelphia for their opinion at UPenn. All the opinions were in agreement, so she opted for UPenn b/c it is an easier drive for her to do, still 1 1/2 hrs,but a straight shot into the city and hospital area v/s her naviating NYC and the traffic,etc. But I will say the only problem w/ doing the non local is the commute back and forth. Some friends tried to convince her to stay local but since she is in a good health status (albeit the l.c.) I encouraged her to go w/ the better pulmonary oncology program.Like I said Phillie is a good 1 1/2 hrs and that is if all goes well. So every 3w it is back and forth for treatments, then there was a time she was hospitalized,etc. I can understand especially if someone doesn't feel well they may find it all a bit overwhelming to do treatment somewhere several hours away, it is a big comittment.For my mom it has worked out well so far b/c she has yet to really feel 'sick' so to speak,so doesnt mind the back and forth too much.But if she were to start feeling bad I do think we would have to consider something closer, I could see it getting tough.Best of luck.

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• By Toddy
• Posted August 27, 2008 at 8:17 pm

I am so sorry you've found a need for this site. I've said on many occasions that the caregiver or family really have the most difficult role of all during and after an LC diagnosis. I agree 100% that a second opinion be sought, but If your requests for a second opinion fall on deaf ears bless you for trying. You said it yourself, you cannot make them drink. Perhaps time and the realization of your knowledge will eventually give way to further investigation.

I hope you don't mind, I'm not responding as a caregiver but as just one LC patient who's husband is also an LC patient. I stopped smoking many years before diagnosis my husband perhaps a week before his. I have had surgery, chemo and a MET to the brain treated with gamma knife. My husband had surgery and now a possible MET to the same lung on which the surgery was performed. He also has heart disease.

I mention all of this because as a patient I have told my husband and my children that I will make my own decisions regarding treatment as long as possible and I asked that I be respected in that. My husband has asked the same.

As for addiction, (this is just my personal opinion) the misuse of pain medications has created an unintended backlash resulting in those who need pain management the most being denied. Again just speaking for myself, should the time come when I need all the pain help I can get please allow me to have it, If I survive what's causing the pain I'll gladly go to rehab. Forgive me if that sounds flip, I don't mean it that way. I've seen pain meds. withheld by well meaning folks so I throw it out there for thought. Just to be sure your dad is doing it right perhaps you could check with your moms doctor while your there.

Wishing your mom, your family and you all the very best,
Toddy

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• By cathylynn
• Posted August 28, 2008 at 3:34 am

I am so sorry for you and your parents. I have lost both of my parents and one thing I learned, is that unless they are suffering from dementia we have to respect their wishes. Your case may be different, such as if you mom would want a second opinion and you dad continues to refuse allowing that. Not sure how you will deal with that if it happens.

If you read here much you will find MANY many lung cancer patients who have never smoked. At this point, for your mom, it is water under the bridge. using energy being upset or angry at that, uses energy much better spent on helping her fight the disease.

As for addiction, I don't even think it warrants a passing concern. the concern needs to be with easing her pain. I agree with the poster who stated there is way to much attention in this area and now everyone, even those who truly need pain relief, are made to feel like addicts. As caregivers, I feel my job is more in the area of fighting to make sure their pain is controlled, than worrying about addiction.

I wish you and your family the best of luck and please give us updates.

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• By Maxie
• Posted August 28, 2008 at 8:47 am

I have had a similar situation, my mom was diagnosed 5 months ago with Stage IV mets to the brain. She lives in Florida, I wanted her to go for a second opinion after her diagnosis because she underwent bladder cancer surgery last year this same time and we thought she was 100% cancer free, at her 6 months check up they found the NSCLC.

I emphasize with you and can only let you know that the only things that help me to accept the fact that she and my sister didn't want to go for a second opinion. I wanted her to send all her files up to Memorial Sloan, I have friend there that was going to have one of the top people look at them, they only wanted her doctor, it's a really difficult situation escpecially with all of your knowledge.
Best of luck...Amie

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• By amymaura
• Posted August 28, 2008 at 11:03 am

Hi Inkblot,

Everyone here has already given you good advice, but I'll just reiterate, people make different decisions for different reasons. Life is complicated and often "hopping on the next flight to Houston" for a consult isn't always realistic or desirable. Do I wish that my mom had done that when she was fighting cancer? Or even to head up to Memorial Sloane Kettering, since we are mid-atlantic? Not necessarily. She did what she felt she had to do. And I'm honestly not convinced that the outcome would have been much different.

The father of one of my good friends just had surgery Monday for an aggressive brain tumor (from brain cancer, not lung cancer). She is frustrated beyond belief because she can't get her parents to listen to her even about simple things like questions to ask the doctor. For her dad, this is definitely a life or death situation and in a seriously small window of time. But sometimes you just have to respect the decisions they make, even if you would have made those decisions differently, and just recognize that everyone has their reasons.

And believe me, it makes me crazy to even say that! Goodness how I wish more people would listen to me when I know I'm right! ;-)

Hang in there.

Amy

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• By Ramona
• Posted August 28, 2008 at 1:27 pm

I can only tell you my experience. I switched in mid-first line chemo from a local hospital to a cancer center. It allowed me to avoid wbr. I am so glad I went for another opinion.

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• By andmegab
• Posted August 29, 2008 at 7:01 am

dad sounds like the practical, git er done kinda guy. hit him up with its a mini vacation and the opportunity to do some stuff they might wanna do in the area while still writing it off on the taxes as medical expenses. what the heck...any angle is better than none.

will keep you and yours in my thoughts and prayers.

hugs,
deb

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• By kaencarsmom
• Posted September 19, 2008 at 11:00 pm

My dad wont get a second opinion either which he so desperately needs. i do not think his doctor will/can do all that there is for my dad. My dad is also complicated. he has had two bypass surgerys and so his heart condition can be an issue for him. he had a lobe removed and was deemed cured and just two months later his cancer was back with a vengence. i wish your family much luck on this horrible journey.

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• By Inkblot
• Posted September 23, 2008 at 11:47 am

Hi All,

I will close out this thread by posting that I was able to get my folks to go to Duke for a 2nd opinion (I went with them). It was good to hear that, while the Duke doc may be a bit more aggressive, the original (more local) oncologist's recommendation was what Duke would recommend.

Mom has since started her first cycle of chemo (taxol/carbo) last Friday, so she is on Day 5 today.

Thanks to all who offered support on how to get the horse to drink the water I lead them to... it worked!

Inkblot

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