CancerCompass message board discussion started by Sistersuzy25 on 10/10/2006 http://www.cancercompass.com/message-board/message/all,7198,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ We need some input.... My husband has a mass on his left lower lobe of his lung and in a lymph node next to his heart. The pet scan revealed that these areas are glowing pretty good. The Dr. has not gotten a biopsy until last Friday. We don't know what kind of cancer it is yet, but Dr. is planning on removing his whole left lung next week. We are scrambling trying to get a second opinion. They are doing a MRI of the Brain tomorrow and a bone scan on Thurs. At our insisting. The Dr. removed four inactive nodes from his trachea area between his lungs to see if it has spread. Next week the plan is if they are negative to go in through his side and remove the node affected next to his heart and take out his lung. if positive start Kemo & Rad. We asked our primary Dr. for a referral for a second opinion but he said that we have the best Dr's. We don't want to delay things or make the Dr. mad what should we do? Is this normal to remove before shrinking? diagnosis code is 239.1 what ever that means! 198.3 unknown malignancy - eval. for metastatic disease confirmed. eval. for intracranial mastatic disease with unknown primary tumor. Help please! Sistersuzy25 Tue, 10 Oct 2006 00:00:00 GMT i would get a second opinion. i am concerned that they did not do a PET scan. i am concerned that they want to remove the lung without a complete staging workup. for example, suppose this was colon cancer that metastasized to the lung. without a staging workup (including a PET scan and other things) they would not know where the primary cancer was. your husband would be without a lung and still have colon cancer. maybe i am off base because i am basing what i say on what your said which may not be complete. however, unless you are at a place like md anderson or sloan-kettering or johns hopkins, i do not see how your doctor can claim you are already getting the best care possible when you ask for a second opinion. is this being done by your primary care doctor and a surgeon? with no oncologist involved? that is bad. based on what i read in your note, it sounds like they are incompetent. even if they are on the right track, getting a second opinion is still the right thing to do. pick someplace on the list below. my suggestion is to go with one of the top 3. go to their web site. click on patient appointment or something similar, call the phone number listed and just make an appointment. ask them what they know about transportation there (some airlines may offer discounts) and what hotels are near the hospital that they suggest (they may have a deal with a local hotel to give cancer patients a discount). TOP 50 BEST *CANCER* CENTERS 2006 http://www.usnews.com/usnews/health/best-hospitals/rankings/specihqcanc.htm 1. Memorial Sloan - Kettering Cancer Center, New York 2. University of Texas M. D. Anderson Cancer Center, Houston 3. Johns Hopkins Hospital, Baltimore 4. Mayo Clinic, Rochester, Minn. 5. Dana - Farber Cancer Institute, Boston 6. University of Washington Medical Center, Seattle 7. Duke University Medical Center, Durham, N.C. 8. University of Chicago Hospitals 9. UCLA Medical Center, Los Angeles 10. University of California, San Francisco Medical Center Amnia Tue, 10 Oct 2006 00:00:00 GMT i re-read your note with my glasses on this time and i see they did a pet scan. that is a good sign. if there was cancer elsewhere it would have shown up on the pet scan. so this is likely a primary lung cancer that has only spread to one lymph node. removing the lung and local nodes has a good chance of curing the cancer. people can live perfectly fine lives with one healthy lung. if this were my lung, i would still have this done at a facility that has a lot of experience just doing just this. a top cancer facility is where i would go. Amnia Tue, 10 Oct 2006 00:00:00 GMT 239.1 is the code for: "Neoplasm Of Unspecified Nature Of Respiratory System" You asked about shrinking. in this case, shrinking it with chemo or radiation may sound better than major surgery, but in reality it wastes valuable time during which the cancer may spread. So far, according to the pet scan, it has not spread. So it needs to be removed before it does. Amnia Tue, 10 Oct 2006 00:00:00 GMT My wife had 2 lobes of her lungs removed 4 years ago. I am absolutely amazed at the bodies ability to recoup from major surgery like this. After the operation she did all of her breathing exercises as instructed. She went from 60% lung capacity immediately after the operation to 97% lung capacity in three years. The doctors explained to us that the body does not like to have vacant areas where organs used to be. It will allow other organs to grow to fill in the empty space. if you do your exercises after the lobectomy you can allow your lungs to be the organ that does the majority of growing into the empty space and therefore will allow a complete recovery. If my wife had it to do all over again she would still have chosen the lobectomy as the preferred treatment. A word of caution though. Keep all over the cancer testing for at least 5 years after the surgery. In my wife's case she had a metastisis to her brain that was not discovered until last year. We found out at that time that the brain is one of the main sites that lung cancer will metastisize to. Here we were getting lung X-rays for 3 years and thinking that she beat cancer altogether and in the meantime a tumor was growing in her brain. Had we known to watch for it we would have caught it earlier and possibly even beat it. I wish you the best of luck and sincerely hope that your operation will be the end of your ordeal with cancer. Loving Husband Wed, 11 Oct 2006 00:00:00 GMT My wife had 2 lobes of her lungs removed 4 years ago. I am absolutely amazed at the bodies ability to recoup from major surgery like this. After the operation she did all of her breathing exercises as instructed. She went from 60% lung capacity immediately after the operation to 97% lung capacity in three years. The doctors explained to us that the body does not like to have vacant areas where organs used to be. It will allow other organs to grow to fill in the empty space. if you do your exercises after the lobectomy you can allow your lungs to be the organ that does the majority of growing into the empty space and therefore will allow a complete recovery. If my wife had it to do all over again she would still have chosen the lobectomy as the preferred treatment. A word of caution though. Keep all over the cancer testing for at least 5 years after the surgery. In my wife's case she had a metastisis to her brain that was not discovered until last year. We found out at that time that the brain is one of the main sites that lung cancer will metastisize to. Here we were getting lung X-rays for 3 years and thinking that she beat cancer altogether and in the meantime a tumor was growing in her brain. Had we known to watch for it we would have caught it earlier and possibly even beat it. I wish you the best of luck and sincerely hope that your operation will be the end of your ordeal with cancer. Loving Husband Wed, 11 Oct 2006 00:00:00 GMT A second opinion is a good idea. If you have trouble finding a place try this list.Go to the web site below and it will give you a list of places that give second opinions and how to contact them. I went to Sloan Kettering in New York. They are not on the list but they are very good. http://www.blochcancer.org/articles/xtrnew.asp Stay positive, Ernie Ernie 2 Wed, 11 Oct 2006 00:00:00 GMT I was diagnosed with non-small cell carcinoma in August 2002. They estimated I'd had it for at least five years, undetected. I only had lots of crazy allergy symptoms, and no one thought to take a chest X-Ray (even though I smoked), because my lungs "sounded" so good. By the time I was diagnosed it was so large they wanted to shrink it before surgery. Unfortunately it was very resistant to chemo. I had five separate rounds of chemo combinations, including 37 radiation treatments with one of them, before it shrank. By that time my body was not in any condition to survive the surgery. Without surgery, there is no cure, so I am still fighting it, and lucky to be alive at all. If I was in your shoes I'd go for a second opinion and then surgery, just as fast as I could. California Girl California Girl Wed, 18 Oct 2006 00:00:00 GMT I would have a bronoscopy done first and biopsy more lymph nodes. This I know from experience, a pet scan will show lot of concentration on infection, also, I had lung ca. and the pet scan and ct scans all showed the mass to relatively large. When the surgeon did the bronchoscopy and did the biopsey on lymph nodes, there were all negative, even down in the affected lung. They removed the lower half of my lung, and the pathologist determined the mass could not be measured accurate, due to inflamation and scarring around the mass. It was non small cell squamous, but the pet scan and ct scan will show scars and inflamation like a mass. I did the chemo, and it has been 2 years and has not returned. My surgery was done at Duke university by Dr. Berfiend, and my onocologist is Dr. Crawford, and they are absolutely excellent. I would advise anyone to consult them. Duchess Thu, 26 Oct 2006 00:00:00 GMT Did your wife have chemo after her surgery.? Duchess Thu, 26 Oct 2006 00:00:00 GMT I don't know why your doctor feels you do not need a second opinion. My oncologist insisted that I get a second opinion, mainly to put my mind at ease. Your doctor either has an ego problem or is incompetent to deal with this cancer. The advice from another reader was very good advice. I went to Johns Hopkins and was told my doctor was treating me the way I should be treated but that if I ever need anything, call him (the Johns Hopkins doctor). Very nice and caring and it eased my mind considerably. I get a little leary of doctors who don't want you to get a second opinion. My oncologist said that is your right. Honey Fri, 27 Oct 2006 00:00:00 GMT dear susan, how is your husband? i hope everything is ok, -Amnia Amnia Tue, 31 Oct 2006 00:00:00 GMT I just went through this with my father. He found out in Aug 2005 that there was a shadow on his lung. In January 2006, he had his right lung completely removed. There are a couple of things I wanted to comment on: 1. Get a second opinion. I don't know where you live, but we went to University of Chicago, which is one of the top ten cancer treatment centers. I would highly suggest going to one of those, or talking with other people in the area to see where they went, and if they were happy with the treatment. My father was told by another thoracic surgeon that he would basically have a scar from his front middle around to his back and all the way up to his neck. The surgeon at U of C gave him one that is about 6-8 inches long, and that was with a major complication with his heart. If he had gone to the orginal dr - he wouldn't be alive today. Do your research - there are a ton of websites. 2. Based on the research I did - removing the whole lung actually gives you the best chance for surviving long term. However, they also said that if there was lymph node involvement, they would not do the surgery. Luckily, both bronchoscopies that my father had came back negative, however, during the operation, they removed 33 lymph nodes, and 6 (luckily all in the lung) came back positive. I really believe that he has a better chance to live a longer and healthier life because of the surgery. There are schools of thought that think that chemo and radiation before surgery to shrink the tumor are your best bet. I don't agree (not a medical professional - just an opinion) I think that your body needs the strength to survive the surgery, and that chemo/rad makes it too weak. Now, after the surgery, chemo is fine after a couple months of recovery. Wow - sorry - didn't mean to go on and on, but I really wish you and your husband the best. Allison Schmeeee Thu, 09 Nov 2006 00:00:00 GMT Well, I researched his Dr and he is one of the top ten Dr. in our state. He had surgery on Oct. 17... they were prepared to remove his lung once a pathologist confirmed cancer! DR cut out several wedges, they checked it over real good. They decided that it didn't look like cancer! Thank You GOD! They sent the biopsy in and determined that it is Histoplasmosis caused by a fungus in the Ohio Valley area. In most cases it shows up with calcium in it on tests, his didn't. His whole left lung is full of this mass. They have him working with an infectious disease Dr and said he may need antibiotics for a year to a year and a half. He came out of surgery hoarse. They think that his vocal cords are paralyzed, he is seeing an ENT to see about applying Teflon to bring his voice back. He is still coughing constantly and sore. Sorry I haven't been back, Our son spent a week in the hospital with Strep Phenomena! Thank you for all of your prayers and advice. It really helps! Suzy Sistersuzy25 Sat, 11 Nov 2006 00:00:00 GMT Suzy, I'm so glad to know that your husband is okay, and that it's not lung cancer! Hopefully your son is better now too. Best wishes to all of you! Allison Schmeeee Tue, 14 Nov 2006 00:00:00 GMT I would seriously get a second opinion. Don't think about making a doctor mad. It is your husbands body. Just because they are the doctor doesn't mean that they can boss you around trust me. They should be helpful in trying to find the right things and knowing that you are comfortable! Lulu050887 Sat, 18 Nov 2006 00:00:00 GMT Quote (Lulu050887/Kimberly M.): "I would seriously get a second opinion." Quote (Sistersuzy25/Susan L.): "They sent the biopsy in and determined that it is Histoplasmosis caused by a fungus in the Ohio Valley area." ********************************* if it is Histoplasmosis, why does he need a second opinion? -Amnia Amnia Sat, 18 Nov 2006 00:00:00 GMT