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leslieb

Like a deer in the headlights

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On 10/16/07 I was diagnosed with SCLC in my lung with two mestastices to my brain. Never in a million years did I think that I might become a statistic. One of the brain tumors was removed surgically on 10/18 and the rest has been treated with chemo, cyber knife, etc. Treatment is going well, the tumors are almost gone and I only have two more chemo sessions to go.

I thought I was doing GREAT and was on my way to recovery until yesterday when I had an appointment with my oncologist. Over the last 3 months he has been very reluctant to talk about future treatments etc and suggested we just take everything one day at a time.

Yesterday in answer to some questions he could not sluff off, he cut the hope and positive attitude right out of me by telling me that an 8-10 month life span was average and that I could hope for a litte more, but not alot. He acutally laughed when my husband say could she survive 10 years and he said he had never known anyone to live that long. I felt so numb when I left I didn't know what to do.

I am hoping that I can find some inspiring stories here. I know now that I cannot listen to doctors - it is not in anyone's best interest- I suppose they are afraid of being sued, but it is sad what they can do to you.

Please - tell me some good resutls. Also if anyone has any input on whole brain radiation, let me know. The doctor wants to do it, but I am not sure.

Leslie

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Well there is a lot of hope here. Start in our SCLC forum and keep reading. Make sure you read Don's sticky post at the top about how he beat SCLC. We have survivors here of 6 years plus-- see CindyRN's posts. The statistics do not take into account all the new drugs coming on the market for lung cancer. My husband was given 4 months and he lived over 5 years. So hang in there-- and just try to visualize how good it's going to feel to prove that doctor wrong. Welcome to our site-- I am glad you found us.

Rochelle

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There are a lot of survivors on this board. I am sure they are all about to write to you. No one knows when anyone is going to die but God. That is a fact and the only one you need to know. Miracles happen everyday and you could very well be the next one.

Stay positive and never..never give up.

Love,

Bobby

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Welcome Leslie. It sounds to me as tho. the doctor gave up on you a long time ago. :twisted: It's probably too soon to know how effective the current chemo will be. A scan some time (I don't remember how long is recommended) after you complete chemo will give you all an idea about what to do next. You definitely need a different doctor. I don't have SCLC, so I'm not very familiar with treatments for it. If you read the profiles of people who post often on the SCLC board you'll probably see that many have lived much, much longer than your doctor has said they do. Also, take a look at the various chemos they've had.

First of all, however, I recommend that you find a new oncologist.

Please let us know what you decide to do and how you are getting along.

Muriel

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Hi, Leslie:

I agree with all the others -- find another oncologist. Even though you've been with him for a while, you don't owe him any "loyalty" since it's apparent he doesn't value you as a person. The bottom line is, these guys work for you, not the other way around.

In the meantime, if you want a great example of how a doctor SHOULD relate to his patients and their family members, please visit onctalk.com. There's a wealth of information there, primarily on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here.

Best wishes and Aloha,

Ned

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Hey can i jump in and recommend another doctors advice?? THis CAts a Loser baby. Oh yeah read the good news forums and the inspirational forums for some really uplifting stories and encouragement..Prayers and Hugs from the Carolinas!!

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Hi Leslie, I have SCLC and live in the Pasadena area. I have really great doctors. Surgeon, oncologist, and pulmonologist. They are considered doctor's doctors. If you would like to chat, please PM me and we can exchange some information. I have had 3 lung surgeries, lung radiation and brain radiation and am on my 6th chemo, and I am feeling really good. I have been doing this for 8 years and have no intention of giving up soon.

My first oncologist sounds like yours - I didn't stay with him!!!

Keep in touch and let me know if there is anything I can do to help you.

Nancy B

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Hi Leslie, Sorry to hear your doctor is bailing out on you. BUMMER! Time for a new DOC!

I have a few friends that have SCLC and they are all doing just fine. One of them was told she had 6 months to live. That was 8 years ago and she's STILL here and DOING JUST FINE!

Shame Shame Shame on that doctor for doing this to you. NEVER GIVE UP HOPE!

I hope you'll stick with us and let us help you through the rough spots. This is a good place to be for information and support.

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Now,

Had that doctor said that to me about my dad, he would have been spot on...(after the fact) but that's the thing...everyone is different and him giving you that statistic and LAUGHING at the idea of surviving the disease, managing it, controlling it, even obtaining remission in some...is simply disgusting to me.

There are so many factors, like how well you react to treatments and how your body responds-side effects, etc...

There ARE long term survivors of extensive stage SCLC. I had to fly to MN and Chicago to meet them face to face after all these years, but they do exist and it can be done.

Where there is breath, there is life and when there is life there is HOPE.

You have many folks on your side here. Take some time to review the sclc or my story forums for inspiration. Sounds like you have a great hometeam, it's time to find the right medical-team who is on your side to do whatever is possible to help you survive this disease.

((hugs)) Keep us posted...I am still so angry at that insensitive jerk...I wonder how cavalier he/she would be had that news been given to them that way about their LIFE.

Look on the bottom of your foot.

Any foot, just pick one.

If you have a sock or shoe on, take it off.

Ready?

Do you see anything?

No?

Didn't think so.

There is NO EXPIRATION DATE stamped anywhere upon you.

All ANY of us have for sure is right now, today.

ARGHHHHHHHHHHHHHH :evil:

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Leslie,

Glad you are here. As far as your oncologist is concerned, asking for ten years more after a cancer diagnosis is like asking for a new BMW. It's a statistic over which he has no control. I don't mean to be harsh, but sometimes we ask questions which we don't really want answers to. Changing docs may or may not buy you more time. It's always, always important to seek another opinion.

Like most, I asked the same question, then was embarrassed bargaining with him for additional time. Others may suggest that this is not the doc for you, but if you are looking for answers beyond the statistical curve, it's anyone's guess. And that does not take a medical degree.

Having said that, I will share the experience of a young facilitator in my local lung cancer support group, a med student. She recently interviewed for a residency at City of Hope Cancer Center in Southern California.

She was floored by the newest research there, which is being done at a cellular level on cancer DNA. They have devised a method to "break" the DNA chain, causing the cancer cells to die. Her description was that when two important links are broken, the cells literally commit suicide. It means that someday, 170,000 moms, dads, brothers and sisters, and, yes, children, per year, who suffer from lung cancer, will come home at night to their families.

So, contrary to my former beliefs, there may actually be a cancer cure forthcoming. Meanwhile, I have enjoyed the last four years from original diagnosis and am looking forward to some more time. How much? I have no clue.

The real question and constant challenge for me has become not, "..what could I do if I had another year?"...but "..how can I make TODAY more significant in the lives of my family, friends and self?".

Best,

Michael Lewis

Seattle

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Leslie: ditch the doctor and find one who will fight for you. This guy's an insensitive jerk and even if his bedside manner improves you will always have this bad memory of this visit to haunt you.

There are compassionate doctors out there who are up to date on all the latest trials and research and you would be much better served by one of them. Good Luck, and God Bless

wendyr

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The first doctor Mom had after her diagnosis told us that they were only performing her brain surgery for her "quality of life", that her lung cancer was incurable, and that the tumor in her lung was inoperable. We refused to accept this and went for a 2nd opinion. The doctors at the Mayo Clinic informed us that the tumor in her lung was operable and they were going to "go for a cure". Those are the doctors you want, the ones who are willing to at least try to beat the statistics. I feel the first doctor simply went by the textbooks and wasn't going to be aggressive in the fight for my mom's life.

My mom had whole brain radiation. I think you should absolutely go for it. Mom went once a day for 10 days. She was very tired and had no appetite, but that was the extent of her side effects.

Stay positive and please don't let one doctor's words kill your hope!

God Bless,

Maryea

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Thank you all for the support and advice. I really appreciate it. I have had a 2nd and 3rd opinion - (from UCLA and USC)all in agreement with the course of treatment to date. We are thinking of going for another opion to City of Hope or Mayo Clinic in Phoenix. We live midway between Los Angeles and San Diego - but are willing to go where the cure is.

If anyone knows of a good Oncologist in the South Orange County area, it would be great. I have one more chemo in my series left and then I will make a decision.

Another question - the oncologist is pushing for whole brain radiation at the end of the chemo. But my brain surgeion says that since I have reacted to the chemo so well, I don't need it. I have read terrible things about the radiation - that 10 months from now it could cause anything from minor loss of memory (which I am already having) to dimentia!! It is so frightening.

I know some of you have experience this - what do you think?

I love being able to ask these questions and get your thoughts - it means so much

Leslie

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I cannot tell you loud enough that you need to get a second opinion. I truly believe that some docs go by stats and have little hope, and I do believe there is a ton of hope out there. It breaks my heart to think of you losing it.

You are responding well to treatment, and that is a HUGE bonus! My dad did the same and he keeps on going!

Bless you always,

Jen

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Leslie-

I do not know anything about whole brain radiation but I can tell you that I am so happy that you went for other opinions. Being happy and comfortable with you doctor means a lot.

Please keep us updated on your progress. Am glad to see your last post you added the FIGHTING HARD!!! Adda girl - keep it up!!!

Hus - Patti B.

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A few of our past memebers had good luck at City of Hope. I don't think Mayo would have anything different to offer. Try and stay with CANCER CLINICS/CENTERS if you can.

Could I bother you to please take a minute and fill out your PROFILE for us. It's at the top of the page where it says, MY PROFILE and you can put in all the information of what type of lung cancer you have, treatments, etc.etc.,etc. It's very helpful for us to be able to read this so we can better help you. That and our memories aren't what they use to be! :roll::wink:

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Mayo does cancer. I know of someone who flies to Mayo in Minnesota every year for check-ups and for treatments when needed. She's had better luck there than anywhere else, but I don't recall what kind of LC she is having treated.

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Hi Leslie -

We went thru almost the same thing with my mothers first doctor and 11 months later she has been doing fabulous.

She went thru 16 rounds of radiation to the brain with very minimal side effects - she says the radiation didnt cause her any side effects and that is was more the chemo that followed that tired her out.

11 months later - her hair has almost grown back, no dimentia, no memory loss and has been on the go since October when they told her she could resume driving.

We started her on great nutrition the day we heard about the "shadow" and the doctors all said her diet kept her strong and healthy thru all her treatments. the most weight she ever lost was 3 pounds total!!!

SHe will begin radiation probably this ocming monday to her lung as it has collapsed due to the tumor blocking the airway. She said she does not feel any different and is ready to start the fight all over again. Stay strong and HOPEFUL as from reading these boards and others, we KNOW this can be beat.

prayers are with all of you

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