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 Dinanatha
Posted September 24, 2009 at 7:13 am
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My Dear Friends,
The biggest losers as those that give up and quit.
I had on Dr imply it was time to make funeral arrangements. I immediately called the VA and told I never wanted anything to do with that particular Dr again. I was then sent to another DR the first question I asked was is the any possibility of winning this battle. His answer was:"we believe your in stage 4 and it has spread to the brain and other parts of the body but I've ordered more tests." Well I went home to wait for the next round of tests. I proceed to go back through all of personal development material. I decided to concentrate on the idea that the cancer was only in my lung and it was curable. The next round of tests proved that worked it was only in my lungs but was inoperable at this time. I was placed on oxygen and started chemo. I no longer need oxygen and I'm off all pain medication and the chemo is almost over and will do some radiation to help clean up what the chemo may have missed.
If you believe you can't your right!
If you believe you can your right!
Search for your purpose if you have a purpose in life all things are possible.
My goal is to be cancer free by Dec, 25th a christmas present to myself, Don't give up!!

By frenchy
Posted September 24, 2009 at 4:52 am
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Dana, It is good to see you back on here, I think of you often and meeting you and your hubby was such a positive experience in itself. You are right, I think everyone should get a second opinion, I did and the second doctor assured me I was getting the best care from my first doctor and that made me feel much better just to know he has been doing all possible treatments for me he has never given up. Thanks for the post, it may be help many who have considered and never done it.

By avonmamabg
Posted September 22, 2009 at 8:59 pm
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Dana - thanks so much. I really needed to hear that today. I was diagnosed on August 19 with NSCLC squamous (?) staged 3b. I'm 46 years old, and never had any serious health problems. Just a nagging cough. I had a clean chest x-ray a year ago, and had been treated for bronchitis (antibiotics and steroids) for the last 6 months. Got a chest CT on a fluke August 16. I've been ridiculously healthy until this happened, and I've never had any cancer symptoms except short of breath. Still don't. This morning I had the last of 3 brachy procedures. I've been having HDR every day since 8/24 and had 8 days of chemo the first week of September. I have 8 more days scheduled starting the 28th. No side effects so far - I've been skating through this, praise God. But the prognosis is still really grim. My family is flipped out, and I've transferred all my assets, made my funeral arrangements and made sure my family has access to all my records. The thing is, I still don't feel bad. Other than short of breath, which is nothing new, I don't feel sick. I still go to work every day, and I'm able to do most of what I did before. I had to drop out of graduate school this semester (Evening MBA classes) and give up a small part-time job I had to pay for school. I gave these docs 6 weeks to get me breathing better so I could make decisions with a clear head. It's hard to think when you can't breathe. (And when you've been scared half to death!) We're on week 5, and I still can't breathe, but I also still don't feel sick, and still have no cancer symptoms. My family wants me to keep on with these guys (St Francis Cancer Care in Indianapolis, In), but I'd like to start exploring other options, and maybe have someone else look at this tumor. Especially since I still feel ok. I may not have the strength, energy or brain power to do this later on. Now seems to be the best time. There's a Dr in Long Beach Ca that has a more common sense approach. My sister in law invited us out to her home in Ventura for a week, so it seems like a good opportunity to investigate this alternative therapy as another option. Thanks again for your post - it gives me a little extra ammunition against my family's reluctance to upset the apple cart. I think 6 weeks of this is long enough. My prognosis is less than a year, so 6 weeks is more than 10% of what they claim is my remaining time. A 10% investment with no gain and no return of capital is a loss. No more. It's time to do something else. Thanks again! And congrats on your success. Wish me luck as I try to duplicate your experience.

By gjb38
Posted September 22, 2009 at 5:58 pm
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Dana, you have and do make a POSITIVE difference to many people who are experiencing cancer. It's a drag getting on this web site everyday but Team Inspire is both informative and informational!!!!!

Your story is truly helpful....

GJB

By lbp08
Posted September 22, 2009 at 4:33 pm
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I wish with all my heart I had seen your information when I was starting this journey with my mom. Your situation sounds so very much like hers. I am very happy for you. Keep up the news - it does make a difference to those starting on this journey. We have run across more than our share of the docs you spoke of.
Bridget

By Blondezilla
Posted September 22, 2009 at 1:47 pm
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Dana,
i just read your post and was so inspired by all you went through. i am now going to MD Anderson with a recurrence. i had my lower left lobe removed back in April at a local hospital but I don't think they got it all, although they took out 15 lymph nodes that were clear at the time. It is definitely a scary road. I am stage 2 now and undergoing chemo. They are talking surgery but that means the rest of that lung removed and I don't know if I want to go that route. Anyway, what I was wanting to know is that how did you go about to find this other surgeon, especically at St. Lukes. Is this all in Houston? I live outside of Houston and my dad used to always go to St. Lukes when he was ill. Although, MD Anderson is suppose to be the best (in your case that was proven wrong) I want to be ready for any changes. I may even would like to look up this Dr. Borkon if need be. He already sounds like a hero. I have met the surgeon that my team at MD Anderson has assigned me and I do not like his attitude already. He told me I have 2 options------first one is chemo and radiation and I have 20% chance of survival and second if I have chemo and surgery, my survivor chance is 60%. I am only stage 2. What gives him the right to say something like that? I've never been so devastated.
If you have anymore suggestions for me, please let me know. My ears are open to any help. Thanks and take care. Karen

By dusteerose
Posted September 22, 2009 at 10:18 am
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HI Dana,

DO NOT LOSE YOUR DRIVE. I have extensive sclc. No cure for me but damn I am not letting life go yet. Yes there are times I cry and yes there are times I am on inspire and see friends and acquantiances go (which makes at times the crying worse), but I am trying like hell to keep the fight up to live.

Jen

By Sandysiegel
Posted September 22, 2009 at 12:54 am
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OMG!
I'm speechless.
How did I miss this story the 1st time around?
Dana, you are INSPIRE!
Thanks for sharing. I'm glad I had surgery and a great surgeon.
Consider yourself bookmarked! :-)
These are the stories I'm searching for when I can't sleep and I come to this site.
I'm going to sleep well tonight. Thanks!
((((hugs))))
Sandy

By Dana
Posted June 11, 2009 at 9:17 pm
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Thank you everybody.

Vickie13, it is so wonderful to hear from you. I'm glad you are still visiting this site. I think about you so often. How are you doing?

~Dana

By Vickie13
Posted June 10, 2009 at 10:33 pm
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Dana,
I am so happy to hear you are still doing well. OF COURSE YOU MAKE A DIFFERENCE!!!! I think of you often. How is your voice these days?

By NCWife
Posted June 2, 2009 at 12:08 pm
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I agree. Please don't lose your drive and please do not stop posting. I suspect alot of people, myself included, read and appreciate a whole lot more posts than we reply to. Being a "new" member, that is especially true for me. I'm just trying to read as much as I can and everybody's input has been so valuable. Thank you for being here and sharing.

By jgaynor711
Posted June 2, 2009 at 10:14 am
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Dana,
You DO make a difference! Sharing your wonderfully hopeful story is so encouraging for people who only come across depressing news... Thank you for sharing your experience!!
Julia

By stephanie410
Posted June 2, 2009 at 4:55 am
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Hi, Dana! I got two second opinions during this process at top comprehensive cancer centers. I've asked questions of other scientists and doctors. As soon as I tell them the presentation of the disease, they all agree wholeheartedly that surgery is not an option (I have a couple small tumors in my right lung--different lobes--and some in my regional lymph nodes). My struggle is to accept that, because my non-scientific mind says why not debulk any of the disease they can get. And what's the big deal with "cherry-picking," as they call it, when the tumors are small. But what do I know?

I am so glad that your story turned out differently and that you are doing so well, despite the circuitous route!

--Stephanie

By prathergirl
Posted June 2, 2009 at 2:17 am
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We do have a couple major cancer centers and one is only 20 miles while his current place is 60 miles. But, his insurance won't cover any. If he would have had this insurance 8 more months before diagnosis he would have been able to leave the HMO and would have been able to be covered. The only other places are really the same as what he has, so we don't have a big choice. I am always on the lookout, though. Thank you!
Carla

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