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Tumor (s) responded well to chemo, but.....


Guest hearrean

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Guest hearrean

Well, I met with my MD Anderson Thoracic Surgeon today & he gave me the results of lasts weeks tests following the 4 weeks of chemo I had. I guess the good news is that (based upon the CT scan) the primary mass & affected lobes decreased markedly since the CT of 11/21. (As much as 50% reduction). So the chemo did seem to have been somewhat successful. At first I took that as good news, but then he laid this on me. He told me I now had (2) options. (1): Surgery which would be major & could not be done as a minimally invasive procedure & had a lot of major risks including death at 2%; he said, if successful, this could result in a 40% chance of a cure or (2): go with 3 weeks of daily radiation along with more chemo which would lower my cure rate to 30%. He didn't sound too optimistic about surgery and, based upon that, it would appear to me that the radiation + more chemo would be the way to go. If I do go the radiation route, he did say that surgery would then not be an option later.

He told me something interesting though. I asked him about side affects of radiation & he told me that I should not have any at all. I thought that statement was unusual because I thought I had read in several posts where a lot of folks have severe side affects from radiation. He is referring me to one of their Radiation Oncologists & I will see him this coming Tuesday & I'll be able to ask him more questions. But any feedback from anyone would be greatly appreciated.

Like I said, I thought I was going to celebrate when I read the report, but then he took my optimism back away from me when he started talking about percentages that, to me, seem low & how surgery would probably be dangerous. And since he's a Surgeon, I figured he should know.

Ken

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Guest hearrean
"tnmynatt"]Ken,

I would seek a second opinion. Your best chance at a cure is surgery. Very, very, very few get a cure from radiation and chemo. Looks like to me you have a 2% chance of dying with the surgery and a 2% chance of living long-term without it.

Take care.

I guess I'm confused about the last 2% you are referring to. The Doc told me that with the radiation route, I would probably be looking at about a 30% chance of a cure. With surgery, my odds only increase to 40%. As to the surgery, he knows about my initial PFT which showed my lung function to only be at around 50% because of being a former smoker years ago. I'm sure he is definately taking that into consideration. I guess to me that would also be a consideration. I'd hate to undergo what he calls a dangerous surgery and never be able to come off a respirator. That would be no quality of life that I'd want to accept.

I actually went to MD Anderson as a second opinion. I had been told they were among the best in the country. I still believe that; I think he's just being honest with me as he sees it.

I will be seeing a Radiation Oncologist on Tuesday & that will give me the chance to ask more questions.

Lastly, I am surprised to hear that very few individuals see a cure with chemo & radiation. I thought there were many right here in this forum who had. If not, that fact alone may change my mind and cause me to lean more toward the surgery route.

I would appreciate hearing from those who have had just chemo/radiation & how you responded.

Ken

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Before I say anything else, Ken, please know that I AM NOT A DOCTOR!!!!! My opinion based on what I have researched, read, and found discussed right here on this site is that I''m not convinced that ever we are pronounced cured. Even my world renowned surgeon says he calls it having no evidence of disease ~ which in my interpretation means not a cure. Now that MAY mean it never comes back again, but I believe a person in the medical field is remiss if he/she leads a patient to believe he/she is cured. I would doubt that doctor for sure. Many here are living LONG lives without evidence (or even with evidence) of disease. That is different than being cured.

I was treated with rad and chemo and then went on to surgery. I knew the surgery could kill me......but the death I was facing without it would have been much worse than dying on an operating table. My tumor was a rare subset of LC which I won't even go into trying to describe right now. Just know that my surgery was an 8-1/2 hour quite extensive one.

For another opinion I would recommend you contact my doc at the National Institutes of Health. Please PM me if interested in more information. He is one awesome guy who is world renowned as I stated before.

As to the stats your doc was quoting.....I haven't come upon those particular numbers in all my research. And even if I had, remember that they are ONLY numbers and ALL patients are different. They may actually have nothing at all to do with YOU. Please be cautious and informed before making any decision. Leave no stone unturned and don't be stopped in your tracks by negative stats. These are the stats I was given in the fall of 2004........I would not see flowers bloom in the spring and there was no light at the end of my tunnel and all my reports and scans were dismal. Here I am 3-1/2 years later, Ken. Had I listened....well, who knows.

Finally, I do not want to influence your final decision. I just so want you to be sure before deciding, that's all. I care so much about everyone here and I get upset over docs slinging stats around and either scaring folks or giving false hope. Please know I care. Hope to hear from you.

Kasey

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I can't add anymore than what Kasey and Tina posted.

Please keep asking questions. and from reading your post I would seek more opinions than those of your oncologist before making a final decision.

If you haven't visited onctalk yet, I'd recommend it too. Dr. West is a great resources for information.

www.onctalk.com

Please keep posting and keep us posted on your decision.

Prayers for you,

Katie

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Ken,

Please consider getting a second opinion. I certainly am not a doctor either, but I do strongly encourage you to get a second opinion. If the second opinion is same as the first then you know that you have a plan that is best for you. If not there may be a better plan. I had 6 weeks of daily radiation and weekly chemo before my surgery. I then had an upper right lobectomy, followed my adjuvant chemo. My surgeon explained to me that this was my best shot of ridding my body of the cancer. That was in July, 2005 and my scans have been clear since. Of course each of us is different. I just would like for YOU to know that you have given yourself the best option for yourself.

Carol

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Everyone has given you great advice-- I would contact Kasey's doctor. My husband was not a surgical candidate and had radiation and chemo. Once they give you the curative amount of radiation you can not have surgery because the area will not heal. One of John's doctors referred to his radiation as "a non-surgical resection" which meant they killed off that area of his lung. His chest sunk in where his lung was destroyed by the radiation. In the end, I believe it was further radiation (the brachytherapy) that caused his pulmonary bleed.

If we would have had your shot at surgery we would have taken it in a heartbeat. I just want you to know that the long term effects of radiation are no picnic either-- you need to make sure you ask the radiation oncologist exactly what you're in for. Please get another opinion and contact Dr. West as Katie suggested.

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Ken

I can only say that some people would give their left arm to have their Doctor offer surgery as an option. I know you said this was a second opinion-I would get a third as soon as possible. As far as the 2% chance of dying-anytime you go in for any kind of operation there is going to be that chance.

Here are a few things I found for you:

Surgical Care: Surgical resection provides the best chance of long-term disease-free survival and possibility of a cure.

Only 30-35% of patients with NSCLC present with sufficiently localized disease at diagnosis to attempt curative surgical resection (stages IA and IB, IIA and IIB, and IIIA).

Two small, randomized trials have suggested that neoadjuvant chemotherapy (ie, chemotherapy given prior to surgery) prolongs survival in subjects with stage IIIA disease

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Hi ken,I had the surgery to remove my right lung and then 2 weeks later had to go thru it all over again because of a stump leak. The 2nd surgery really kicked my butt but I feel it was well worth it and would make the same choice again. But each of our cases are differant. Best to you whatever you decide. Mike

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Hi, Ken:

Please don't get hung up on the word "cure" -- it's not an all-or-nothing proposition. Cancer docs generally don't consider a person cured until he's been free of cancer for 5 consecutive years. If someone told me I had a 30% chance of a cure, I'd be dancing on the tables! And if I fell into the other 70%, that would not necessarily be a disaster. I'd be happy with remission for a while, then if something came back later my onc and I could hit it again. Heck, stable is good too, and there doesn't have to be a time limit.

Aloha,

Ned

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Wow Ken! I really feel for you right now trying to sort all of this out and make the right decision for you. Just from what I have read on these boards, it always seems to be a "good thing" when they offer surgery. I do know, from seeing what my sister experienced, that "radiation ain't no picnic."

I would be so confused if I were you. Maybe asking Dr. West would be beneficial for you right now.

I wish you the best and will pray that the right decision comes to you in the perfect way.

Love,

Bobby

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Ken~

I was scheduled for a RLL lobectomy, last June, they found to much involvment during the procedure, stopped after the Bronch, staged IIIB. THAT was a bummer. My profile shares the decisions we made. I feel great,7months later. I now believe my return to work last Oct. was a little premature even for this super hero. My quality of life is good, I'm on no meds.Know the "stats" that are avaliable now are 3-4 years old as that is how long studies take to be published. Dr. West is an excellent resource. Please keep us posted, sending prayers to you and your family. Mary

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Guest hearrean

Just wanted everyone to know that I posted my question/situation which was the subject of this thread on Dr. West's forum as some suggested. Based upon his response, I now feel good & confident with my decision to elect radiation along with add'l chemo in lieu of surgery. I feel my Surgeon was simply telling me that, in my case, surgery would be high risk & quite probably not worth the possible add'l 10% higher survival rate.

Ken

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I am glad to hear that you are feeling confident about your upcoming treatment. I certainly pray that you have successful treatment. Best wishes and Happy New Year!

Carol

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"hearrean" ...I now feel good & confident with my decision to elect radiation along with add'l chemo in lieu of surgery. I feel my Surgeon was simply telling me that, in my case, surgery would be high risk & quite probably not worth the possible add'l 10% higher survival rate.

Ken -- I'm glad Dr. West's response to your OncTalk post helped you make a decision that you're comfortable with. Considering your reduced lung function, I believe it was the right decision.

Please don't think I'm quibbling over semantics when I point out that you've used two very different words along with the 30% and 40% figures. In your first post of this thread, you discussed a 30% versus 40% "cure" rate, which means 5 consecutive cancer-free years, and that's probably the correct word. But in your last post (quoted above) you referred to "survival" rate, which really has no meaning by itself but needs to be associated with a time period -- 1-year survival, 2-year survival, 5-year survival, etc. The group expected to have a 30% cure rate would have a considerably higher 5-year survival rate, since at the 5-year point the survivors would include those who still had some evidence of disease and therefore could not be considered cured.

Expecting great results for you! Aloha,

Ned

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Thanks for keeping us updated!

Dr. West is a gem.

My prayers for your complete and total success with treatment.

P.S. Do your research on the treatment. I think I read somewhere that someone told you there were no complications from radiation- and that isn't true. There can be immediate complications, irreversable side effects and long-term effects as well (see ConnieB's situation now 12 years later with her 4 heart surgeries as an example)

All that said, I believe the benefits of radiation to eliminate the cancer far outweight the risks for sure.

Prayers for your total success! Keep us posted.

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Hi-Glad you got another opinion from Dr. West.

As Katie said I would do some research on radiation to the chest-my Mom had concurrent radiation for 3 weeks for a total of 30 treatments and on her very last one was admitted to the hospital because she couldn't swallow her saliva it was so bad. I think knowing what the possibilities are ahead of time keep you prepared.

Good luck with everything

Dar

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