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Am I wrong?


Guest DianeP

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I went with my father today to his oncologist appt, we expected to hear our chemo & radiation options - he was supposed to have his port placed tomorrow. Instead the onc came in with a huge smile and said that he feels that the cancer is IIA instead and he wanted us to meet with the thoracic surgeon right away to schedule a pneumonectomy. Talk about relief, joy, excitement and hope just flooded us. I was thinking this is a second chance!!!

Well, the joy was taken right away as soon as we spoke with the surgeon....

Little history first, it has been proven that my dad has a tumor in the hilum area...meaning that his whole right lung would have to be removed due to the tumor location. The pet scan showed some activity in the SAME lung, but not postive its a tumor because of pneumonia.

Ok...so the surgeon comes in and says he will only operate if a needle biopsy is done in the questionable area and it comes up negative. Then if we proceed from there, he will perform a mediastinoscopy and take a biopsy of the nodes there and if they are positive for cancer, that will place him in IIIA-B and he refuses to go any further. He'll close him up and send us back to chemo & radiation without even removing the nodes.

My feelings are that as long as it's in the same lobe and the cancer is in there anyways - why not remove it??? When I asked him this, he said he cannot in "good conscious" remove his lung since the cancer has spread. He said that the cancer had to get their through the blood stream in order for it to grow to another area...he's right, but that's why they do chemo afterwards - right??

Then he threw out there that 1 out of 11 people that go through pneumonectomy do not survive the procedure. Heck...if this is your best chance of survival, I just don't understand this rational. He said that no surgeon in their right mind will perform sugery on IIIA-B.

I know that this is a lot to write, I want to know if I'm crazy to think that, god forbid the other tumor is there and the nodes are infected that the surgery should still be performed. The surgeon was so negative, and throwing out all these stupid statistic death rates....that is not my dad!!! he is not a statistic.

Has anyone experienced this? Am I the crazy one, or is this surgeon correct? Am I right to want to be so aggressive with treatment...he is 60 with no other health issues. Any feedback is appreciated, I'm very upset and don't think I'll be sleeping much tonight. :|

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Guest Cheryl Schaefer

My husband was originally staged at home as Stage IV - inoperable. He went to MD Anderson, was retested and restaged at Stage IIIa. He has had no spread elsewhere except within the lung. They sent him home for two rounds of Chemo and he is scheduled to go back to Anderson for surgery in two weeks. I encourage you to get a second opinion from another surgeon and/or Cancer Clinic. I don't know where you live, but at a Stage II diagnosis, surgery should be the option of choice.

Aloha, Cheryl

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Prior to surgery, my diagnosis was Stage I or II. It was AFTER the pathology report came in that I was diagnosed Stage IIIa. No chemo, no radiation before surgery. Needle biopsy showed cancer cells, there did not appear to be lymph node involvement and surgery was scheduled. While open, there were suspicious lymph nodes so all seven were removed and tested -three were positive. Tumor was staged IIIa on lymph node involvement, not size.

Ask your first doctor for another thoracic surgeon referral. It doesn't sound like the two doctors really concur on treatment options. (Doctors are a "service provider". If you don't care for the one you have or are not comfortable with his/her recommendations, seek another opinion.)

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Please get another opinion. I was staged llla after my surgery. One lymph node was cancerous. I had the two upper lobes of my right lung removed along with about 10 nodes. I celebrated 2 years of survival in May of this year. There is life after a cancer diagnosis. Hang in there. All my best to you and your dad.

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They performed surgery on my mom and she started at stage 4 and after chemo and radiation went down to stage 3b. The surgeon keeps emphasizing that she still only has a 30% chance of beating it, but he also says what's the alternative. I agree with the others in getting a second opinion. She just had the surgery last week, so we don't yet know how it's going. The surgeon does say, however, that everything looks good, so there might be some hope for your dad.

You can tell from this site that there are more aggressive surgeons. Getting a second opinion sounds like the best option. If you're in Colorado, my mom's surgeon is Dr. Narrad (303) 778-6527. Maybe his office might know of some referrals where you're at.

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I too was originally thought to be Stage I -- it wasn't until after surgery that I was restaged at IIIA -- I had a very aggressive, highly recommended surgeon (Dr. Larry Kaiser of University of Pennsylvania) who removed my upper right lobe, along with 12 nodes for testing -- 4 tested positive. I then had follow up radiation and chemo for 6 weeks. I recently had a PET scan and Brain MRI and both were clear. (Thank the Lord above!!).

Like several others have said - there are aggressive surgeons out there with different lines of thinking.

Best of luck to you and your father -- keep fighting!!

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I personally agree with a lot of what the surgeon said. Make sure the stage is correct before an operation.

There are studies that "may" indicate that chemo/radiation BEFORE surgery may produce better outcomes especially for stage III - there are even clinical trials for induction chemo for stage II

It might not be bad to ask about induction chemo with the intent to have surgery after a reduction is seen. PET scans have been used in clinical trials for determining if chemo is effective, but the insurance might not want to pay.

In anycase, do as much research as you can. If your dad feels surgery is the best then someone will probably do it. I think the surgeron is being thorough.

just my opinion

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Diane P,

Take your Father to another surgeon. If you can make it to MDAnderson in Texas that's where I would start. (And Diane, there are ways to get him there.)

Now, my story: In the beginning I was erroneuously put at Stage I and operated on twice for removal of tumors in my upper and lower lobes of the right lung. I left the first group of doctors because things that were going on did not feel right, and I went to another cancer center hoping to find answers and have the cancer completely removed. I was actually a stage IV, according to my docs. Very long and convoluted story fast forwarded from November of 2000 to May of 2003 I am still a Stage IV, and the surgeon who was supposed to have done a completion pneumonectomy in January of 2001 decided it was time to do the completion pneumonectomy in May of 2003. I still don't know the real reason why I went from a non surgical candiate to a surgical candidate in this surgeon's eyes.

I had the lung removed in May, along with a rib, and all the lymph nodes in the right side mediastinum. Some of the hilar nodes showed evidence of central necrosis consistent with treatment effect, but no viable disease. The cancer was in all three lobes of the right lung. When I first came to these people 2 1/2 years earlier I had only 1 small hilar lymph node.

I disagree with the assessment of you surgeon that no surgeon in his right mind would operate on a Stage IIIa or b , or Stage IV. Because it's pretty common practice to do stage IIIa and sometimes b after a course of chemo. And no joke, I am a Stage IV lung cancer patient who just had my third big thoracotomy...my entire right lung removed along with a discection of the entire right side mediastinum, all the way up to my neck.

And all things considered I feel a heck of a lot better than I did before the operation. I started chemo this week for any micro mets that may be floating around, because my lung showed lyphatic spread. The surgery was rough...and I had some problems...but I STILL feel better since the lung came out. Physically better. Went from an upper abdomen measurement of 47 12' back to 33" since that lung came out. Swelling in my arms and legs is significantly reduced. And a lot of other symptoms are just gone, or eased.

Find another surgeon who is a bit more open minded. By the way...I was given a 20% morbidity figure. I am only 48, but I had had three previous chest surgeries, a heart murmur, genetic kidney and liver disease with fragile artery syndrome, Shogrens Syndrome, Crohn's Disease. These would all be known as complicating medical factors. I have an almost desperate will to live and will do just about darn near anything to insure my survival. I'm not quitting until I'm ready to stop. Period.

Hope this helps... This is one of the those situations where you have to fight for life... It isn't always an easy thing to do, but it's definitely worth it. To me anyway.

Best Wishes,

Fay A.

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Diane,

My husband was stage IV with a single brain tumor. After a craniotomy and 14 whole brain radiation treatments, both a thoracic surgeon at the U of Penn and one at Fox Chase Cancer Center recommended surgery. Both said it offered him the best chance for a cure.

He had a very small, 1 cm and change they called it, tumor in this upper right lobe. Pet scan prior to surgery showed lymph involvement, mediaoscopy (spelling) showed negative lymph nodes. Surgery proved that there were some positive lymph nodes. Therefore, Earl had 28 chest radiations and 3 taxotere infusions.

Through his last scans, end of May, he has no evidence of disease. We are just about to start the damn scan process again.

Moral - even Stage IV can have surgery. I am sure that the location and size of the lung tumor contribute to the decision.

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Diane,

Hang in there, and find a surgeon who BELIEVES in what he is doing. I had a procedure of chemo+rad prior to surgery that was pulled from an ABSTRACT of a meeting. This protocol was a Phase II clinical trial that closed at 12 months for immediate implementation because it was so effective. Literally, three days before "palliative" surgery for an enormous pancoast tumor, the surgeon called me into his office at NIH and offered me this other option. (I work at NIH, so I had the fortune to be able to talk directly to doctors here through my boss who was also an MD). I took the other option, the tumor started to shrink, when my lower left lobe and the accompanying mass was removed, it was found to be nonresectable = DEAD, and then two more chemo (cisplatin/vp16). My surgery was 14 hours, involved two thoracic and a neuro surgeon, pus the residents etc etc etc, and the final mass removed was over 13 #. My prognosis at best was grim. Here I am 3 years out with a clean bill of health from my last set of scans. Be PROACTIVE and find a doctor you believe in. Doctors who are more worried about their statistics are not the ones who are going to believe in your ability to get well....

Miracles happen.

MaryAnn

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I want to thank everybody again for their support and post an update.

My dad had went in for a lung needle biopsy to determine the questionable area in his lung, and it was determined to be a deformed bone that was appearing on the CT scan and PET scan. So we are pushing forward with surgery. He had his head CT scan yesterday, bone scan tomorrow, and stress test on Friday....so I'm thinking that the surgery will be scheduled for next week or soon after.

My parents have also agreed to get a second opinion from a thoracic surgeon to make sure we have the "right" surgeon on our side. If anyone is familiar with a thoracic surgeon in the Metro-Detroit area (or close to it), please share!! :)

I'm also looking to hopefully find out more about a right pneumonectomy. I've looked a lot on the internet, and I can't find much. Any info would be great!!

You guys are right!!! Hope helps. We were first told (prematurely) he was stage IV, and now we are hopefully looking at IIb. I feel ready to help my dad kick this cancer's rear end!! :lol:

Thanks again!!!

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