Please let me know I'm making a difference. I'm losing my "drive."

Is anybody seeking second opinions?

I was stage 3B . . . very sick at the time. They told me to contact hospice because I might not make it through the next month or two in which they'd hoped to give me treatment. I made my funeral plans, but I also had a positive outlook and took the chemo and radiation (same time). The treatments weren't as effective as they'd hoped. The staff of 4 or 5 surgeons at my hospital wouldn't take a chance on me. I was too high risk. ( . . . . wouldn't want to mess up their perfect stats just to take the chance to save a human life). They advised me to stop treatment and enjoy the time I had left.

SOOOOO I got a second opinion. And a third. And the fourth surgeon agreed to take a chance on me.

That was in 2005. I've been cancer free ever since!!!! LITERALLY - ONE MEETING WITH ONE DOCTOR SAAAAVED MY LIFE!!!!!! (I wish I could stress it more. - I was a goner one day. And I was saved the next. . . . what more can I say?)

If somebody is telling you that you are not a candidate for this treatment or that treatment; or that you should give up or . . . worse yet - you're not a candidate for surgery - GET ANOTHER OPINION!!!!

In the beginning I was misdiagnosed (with Hodgkin's Lymphoma) for SIX MONTHS - given the wrong chemo for SIX MONTHS!! The chemo I took damages lungs (not something you'd give to a lung cancer patient.) So not only did a surgeon have to consider removing one lung because of my lung cancer, he also had to consider the fact that the delay in diagnosis had caused the tumor to wrap around my heart sac AND severe damage had been done to the only lung I would have left. (And the damage was far worse than typical COPD. My remaining lung only had a 22% ability (over the years it's increased to a 33% ability to absorb the oxygen I take in.)

The point is . . . your life literally lies in the hands of ONE doctor . . . and noone else. Considering that 12% - 15% of cancers are misdiagnosed, and another 30+% aren't given the "gold standard" of treatment .. . . It's frightening!!!!!!! If you don't like what your doctor is telling you - switch doctors.

To relate it to something everyone understands . . . we all went to school, or have children/grandchildren in school. Look at the difference between the teachers. Some know their stuff, some don't. Some care, some don't. A few would do anything for any child . . . . . . THAT is the doctor you want to find!!! Why do we think that all doctors are equal & qualified? Or that all doctors keep up with the latest techniques? And certainly . . . .why do we think that all doctors care? (Some teachers are there for the summer vacations. Some doctors are there for the $300,000.00++++ salary)

Please - get a second opinion.

My heart, thoughts and prayers are with you!
Dana

By maxgirltou
Posted May 29, 2009 at 6:33 am
Report post

Don't lose your drive Dana, you were a life saver for us. Hang in there, you are making differences that you just don't know about.

Hope everything is well with you.

God Bless,
Tina

By tezzasgirl
Posted May 29, 2009 at 7:09 am
Report post

thankyou for your insight,I feel we will need to seek another opinion if oncologist does not continue with chemo without good reason...Your post reaffirmed this.

By Munker
Posted May 29, 2009 at 9:32 am
Report post

Wow. amazing story. thanks for sharing. i think you will help a lot of folks by showing that you have to take control of your own healthcare and do whatever it takes to fight this beast!

By bubala
Posted May 29, 2009 at 9:50 am
Report post

I hear this and think I should have done more for my mom. It's hard for me not to second guess myself or feel guilty. I do wish I would have gone for a second opinion for my mom, but she was so tired and couldn't even leave the house or her room most of the time...what do you do in that instance? I would go crazy thinking of all the what ifs and the what could have beens... Thank you for your insight and I do encourage second and third opinions. I pray that you continue to do well...continue to advocate for people who may be afraid to get second opinions or don't know that it an option.
God bless yopu,
Tracy

By Barb267
Posted May 29, 2009 at 10:36 am
Report post

You have only yourself to do what is best for you and you did it. I believe that a second and third oppion might be needed at times. You just prove that you should never give up. Thanks for your story.

Blessings,
Barb

By Melissa725
Posted May 29, 2009 at 11:18 am
Report post

To Bubala -

My Dad just died from non small cell Stage 3B at 63. He had a long fight and at one point when they took 6 months to diagnose him they thought he was on his way to hospice. My mom, my brother and I never left his side. One of us were there every single time a doctor came in and stayed with him every night. We had to fight to get test results in faster, etc. Thankfully at the last possible second that it could have made a difference (he could hardly breath), they found a diagnosis and in a week the radiation began to shrink his tumor and he started Chemo. He came home after a month in the hospital. I feel strongly that in my Dad's case we fought for him every step of the way and did everything we could. We never left him alone at the hospital, and savored every moment. By the time they did, time was of the essence and we didn't have time to get other opinions. That being said, I feel that the doctors did the best job as anyone could. And my Dad looked healthy and was driving around before he died Monday night. He did sleep a lot and had to rally his energy during the past months like your mom, but he just had gone through so much that I am thankful that he was able to enjoy life until the end and at home with his family. We thought he would live a lot longer at the rate he was going at though. Anyway, I could write a book about it. But my point is that you don't need to feel guilty about your mom. Second opinions are absolutely vital for many people, but there are many cases where they may not have made a difference and in fact could have put her in a hospital longer with the same outcome. And it sounds like your mom's case and my dad's case fall into that category. All of that being said, Dana is definitely an inspiration. I agree about the prognosis thing. Those stats are based on what has happened in the past - they don't dictate what will happen in the future!

By HighlandGuy
Posted May 29, 2009 at 11:37 am
Report post

Everybody, listen to Dana! Read her story again and again! Remember it!

And Dana, for your information, your story with different specifics, precisely details my experience with cancer nine years ago.

We have great doctors, doctors of courage and integrity who understand and know their limits, men and women who are dedicated to the care of their patients and their profession.

Unfortunately, I am convinced that they are in the minority.

Only a week ago, I was confronted with an incident of absolutely stupid medical protocol! Had I not gone elsewhere, demanded and procured an immediate second opinion, I would have been rendered permananly blind! Hours later, that same day I had surgery that restroed some eyesight and prevented permanent loss of eyesight.

Yours is a great story Dana, a lesson everyone needs to learn and never forget. We need to keep reiterating the lessons we have learned, often so painfully.

highlandGuy

By kq182
Posted May 29, 2009 at 12:14 pm
Report post

Dana, great story, like you said it is your life and it is very important to find a doctor that will fight with you, everyone take charge of your healthcare, get as many opinions as you need, and find the right care and treatment!!
Karen

By sandy45
Posted May 29, 2009 at 1:35 pm
Report post

Hi Dana
What a nightmare!!! Thanks so much for sharing such important information. Who knows how many lives will be saved by you getting your story out
there.

"Good Job"
Sandy

By waterbaby
Posted May 29, 2009 at 2:11 pm
Report post

Dana,

Of course you are making a difference. Letting everyone know they have to take certain health issues in their own hands is a message alot of people need to hear. When I disagree with a dr I can see the embarassment in my husband's face but if we don't push we will not get the best care. No one knows our needs & sickness as well as we do.

Keep getting the messages you have out there. There are people who need to hear your plights & thoughts.
Good luck,
waterbaby

By robjo122
Posted May 29, 2009 at 2:37 pm
Report post

Hi Dana, I was also dx stage 3b. I had radiation every day for 38 days along with chemo once a week. Then 3 wks off & chemo again. 4 treatments every 3rd week. My treatment is finished, had cat scan & pet scan - went to my oncologist & lung dr. for results of testing. Didn't get same answers from both of them, so made an appt. with Sloan Kettering for 2nd opinion.

By hermanade
Posted May 30, 2009 at 1:02 am
Report post

You are oh-so-right, Dana, about the imperativeness of seeking a second opinion, that even in the best of hands it pays to get add'l input if only to support the initial proposal--really, so that one can have peace of mind that one is making ideal choices.

I have a dear, dear friend (and I have posted this success story, here, before, in an effort to motivate people in this community who weren't being helped and, likely, being harmed) who was told by an ophthalmologist at UCSF/Stanford that her eye had to come out; actually, it was more than her eye, it was pretty much the front quadrant of her head!!--a very disfiguring and mutilating operation.

My friend had an orbital tumor, and before its pathology was even ascertained (again, multiple institutions were stumped by her pathology), this ophthalmologist, at a world-class medical center, was willing to exenterate her eye and was even insistent about it.

Long story, short, my husband a local ophthalmologist did not like the indifferent, aggressive, and ignorant approach and finally landed our friend in some very capable and caring hands at Wilmer Eye Institute (at Johns Hopkins)--we had a connection at Hopkins, since the head of WIlmer was one of my husband's former residency professors.

When I flew with my friend to Baltimore from the West coast, we thought that my friend would be returning to San Francisco with a hole where her eye had once been and a patch over that hole. Our fear and apprehension were profound.

That horrible scenario of anxiety and uncertainty was 3 years ago, and I am pleased to report that a compassionate and brilliant orbital surgeon at Hopkins fought for my friend's eye like it was his own and through a few successive surgeries saved her eye. He had to sacrifice 2/3rds of her lid to the tumor, and, yet, her lid looks completely normal and untouched. My friend's eye is cancer-free.

It makes me wonder how many unnecessary exenterations had been done by this doctor at UCSF or, even, at other institutions, nationally. Scary to contemplate, and I shudder considering how many people would have merely submitted to the erring recommendation of this doctor.

So, yes, it pays to be aggressive on one's own behalf, be a pain-in-the-butt, if necessary; such an approach saves lives I believe.

Continued great health and happiness.
Best,
Danna

P.S. When standing in the pharmacy line at Hopkins to retrieve my friend's pain medication, after one of her eye surgeries, I met a woman who had had Stage IV lung cancer. Before she had been seen and treated at Hopkins (she had been initially treated somewhere else in the Mid-Atlantic), she had been told to go home and die; she didn't much care for that and, really, had her life handed back to her at Hopkins. She told me that she was going on 6 years of NED.

By prathergirl
Posted May 30, 2009 at 3:07 am
Report post

Thank you for this post. My husband isn't a candidate for surgery or radiation ( lung cancer with mediastinal node swelling and a small spot. on the PET showed near the spine. He's doing chemo now, but, it devastated us to not have further options since he has no mets to his brain and his bone scan was clear. I couldn't convince him a Dr. could ever be wrong from his old school belief they are the " experts " with whatever they say. Maybe he's not a candidate for more, but, maybe I can use this to convince him to consider another opinion just to be sure. Please keep posting your progress. Don't give up your hope because you've given us some tonight !

By babs
Posted May 30, 2009 at 5:33 am
Report post

Dear Prathergirl, Please get a second opinion. Four years ago I had the exact diagnosis. I saw doctors at four different facilities...two were comprehensive cancer centers. I also sought opinions from friends who are doctors in other parts of the country. My husband was a research pathologist. My father was an M.D. What I am trying to say is the medical profession ALWAYS seeks several opinions for themselves and their families. Your husband should too. I am NED four years past the same diagnosis. Good luck. Babs

By danasimi
Posted May 30, 2009 at 12:31 pm
Report post

Dana,
Your story is so freakin helpful to so many people! My daughter was misdiagnosed for a year, then a different hospital took out the wrong lobe resulting in removal of her left lung (can't spell it) I think your purpose in life is just what you are doing, telling your story and inspiring others to take charge of their lives.
If i had read a story like yours before my daughters surgery, maybe I would have asked more questioins.

we are all here to help each other (dalai lama)
sending big love
Dana (I am Dana too)

By lisalulu
Posted May 30, 2009 at 1:00 pm
Report post

I second that...
soooooooooooo true...
there are Doctors That are no good and lots of no good teachers.. thankfully I was gifted with a few really good doctors although my PCD I had to loose because he was a looser..
stay blessed and stay cancer free forever.. such a beautiful day!

Lisa

By Chauncey53
Posted May 30, 2009 at 2:23 pm
Report post

Dana - Don't lose your 'drive' - we all need it ! Your story and experiences are so important to share.
Many of us that have been here for awhile have similar stories and may be very aware of the need for 2nd opinions all along the way. Many more are newbies either for themselves or loved ones and are still in the panicked stage - or would not think of second-guessing or doubting a DOCTOR of all the omnipotent beings in the world.
We all need you - Debbie

By jazzbo
Posted May 30, 2009 at 4:21 pm
Report post

Hi Dana, long time no chat. Hey your story is so awesome and I know it makes a big difference in peoples lives to hear it. I mean how many times do all of us survivors here say "get a second opinion". You say it in such a concise and easy read that I think anyone who reads it is moved and thinks maybe I should get a second opinion. I wonder how many lives have been saved by this story of yours. I'm sure we'll never know but I'm also sure it has. Stick around and add your 2 cents. I'll give you the change if you need it. lol- John

Welcome to Inspire!

Explore topics in this discussion:

47 replies

Add to the discussion

Help from Lung Cancer Alliance

You