Summergirl

Wow Dave G., thanks so much for that description. I had all kind of scenarios in my head about how they handle these tissue samples, so just was not sure what happens. Thanks so much! Kelly

Cute, Cute kids! Both are adorable. Kelly

Hi everyone, I have a question regarding biopsy "slides". How is tissue handled at a lab-such as: when one hospital wants to see the original biopsy tissue what is the procedure that the lab follows? Do they send the actual slides they looked at or do they keep tissue and make new slides when requested? I hope that doesn't sound like a dumb question! My Mom has had brushing and washing samples from a bronchoscopy sent from the original lab, then to Mayo, then to Emory. I was just wondering how this is actually done. And then, when the pathologist looks at them, are cancer cells defined by how they look under a microscope, or how they react to chemicals, or what? If by sight, can cancer cells look like other types of cells, or do they have their own distinct "look". Wow, too much watching CSI! It's never as easy as it is on CSI! Thanks! Kelly

Thanks everyone, for the advice, support, and links. We do get copies of everything, all reports and sometimes I have to press for it too. I am having to kind of sit back a minute, my Mom is very tired and stressed. She is not right now interested in talking about should we wait or go somewhere else. She just heard the Emory doc say that they may not see cancer cells and that's what she wanted to hear. Lillian, what I understand about the inoperable part is that the nodes, tumors, are spread out, and some in the mediastinal area, and affect both lungs. They appear and some shrink and some stay the same. And that's why they can't operate. Or do radiation either. Also told the nodes are "too small and difficult to get to" to do a mediastinal node biopsy. Since the docs at Emory have now had their pathologist say maybe cancer, maybe not, on the original slides, they aren't recommending anything right now but wait. As of right now, my Mom doesn't even have an appointment w/her main oncologist again until April. But the pulmonary doc wants to see her in a couple weeks, so I am bugging her to make this appointment and I can question him some more! Yes, very confusing and stressing. Glad you guys are here to hear my vents! Kelly

Joyce, I don't have a medical answer for you, but I just wanted to offer you some support and say that I'm sorry you are in pain. And I understand the frustration regarding diagnosis, I'm going through that with my Mom's cancer. It is stressful. I hope that your pain subsides soon, and that you get the answers you certainly need and deserve. Kelly

Hi everyone. I will try to make this short, but it's just a huge story. If you read in my profile, you will see that we have been on quite a rollercoaster with my Mom through her testing/diagnosing procedures. So now we have a total of 5 pathologist that have looked at her original bronchoscopy slides (when NSCLC was diagnosed). The original 2 path. from the first hospital, who then sent the cytology to Mayo for confirmation due to the unusual presentation. 2 path. at Mayo confirmed. My Mom has nodes, bilateral, and in the mediastinum that seem to show up, then recede. Almost like they move around in between scans, or shrink and grow btw. scans. They are too small, and in places that aren't ideal for needle biopsy we are told. We go to Emory in Atlanta for 2nd opinion. And none of the procedures they perform, including a second bronch. show cancer. Pulmonary surgeon says this can happen. Sometimes you get negatives following positives while you are searching for the primary tumor. You keep looking and you find it. She has 1 cyst like structure in her liver, and one in kidney. Scans on this say appears to be cyst but malig. can't be ruled out and to keep following up. The doctors don't seem too concerned about these. Emory pathologist sends for original slides (that went to Mayo) and-drumroll please-says well, maybe cancer, maybe not. We are told to go home and recuperate from the ovarian surgery and biopsy procedures, then come back in 2 months for Spiral CT on chest and bronchoscopy in 3 months. This followed by: if this is cancer then the way it is presenting is not operable and not able to radiate. It is bilateral and multiple nodes involved. Chemo would be treatment option, but is not a cure. So waiting a couple months is not going to affect treatment plan. Which is what the first onc. said, although he had no doubts that this is cancer. Huh? Now I'm confused. Are all these pathologist looking at the same thing? My Mom has now decided that her original samples were somehow tainted so were read incorrectly. Okay, indulge me here-has anyone ever heard of samples that were somehow tainted? Like they don't sterilize tools or follow protocol while packaging the samples? I can hardly think that could happen. This was all just yesterday, so I am still absorbing this. But is this back and forth a common thing? I can hardly think that 2 pathologist at Mayo would get this wrong-that was the whole point in sending the samples to Mayo. They saw the same thing as the original 2 pathologist-NSCLC. Any thoughts on this? I have posted to the test/results forum previous to yesterday, and was given a link regarding CUPS (can't find primary source) which was very informative. This was not even mentioned by any of the doctors. I think I need to go to medical school to understand all this. Thanks for being here, and thanks for sharing. You are all such a comfort. Kelly

Angie, I am new here, so haven't posted much. But I've been reading your posts about your Dad while going through all this testing procedures with my Mom. I can feel your excitement right through my computer! So I had to post to tell you how happy I am for your good news. Isn't is wonderful to find all the supportive people that are here? Hugs to you, Kelly

Cheryl, I am sorry that you are having to deal with such frustration. My family is going through this right now. We have really been yanked up and down, and not sure even now what is going on with my Mom's diagnosis. So, just wanted to offer support, I understand the frustration. Yesterday I even ran a resident doctor in training right out of the room. I mean, come into the room, never seen this person before. We are there for an "answers" day w/our main doctor. And this person is like, "so, tell me how this started" I'm like, get out of here and go read the chart. Send the doctor in here. I know, rude of me, but I'm tired. hugs to you, Kelly

Hi Donna, yes I thought that was a huge difference too. I couldn't believe it. So, if we hadn't gone to Emory we would have treatment for stage 4 when it might be stage 1? I don't know-I'm going to wait for the procedures next week and see what the biopsies show. A month and 1/2 or so of waiting now, I'm ready to know what we are going to be dealing with and what we are going to do for treatment. Kelly

Hi all, I have posted an introduction under Time for an Introduction, and this is a follow up regarding our second opinion trip to Emory/Winship Cancer Institute in Atlanta. Wow, what a difference in opinion between one doctor to another. The doc we saw at Emory does not usually see patients, he is a research, teaching, and writing doc. My Mom's case is an unusual presentation though, so I think we got his attention. Mom's mediastinal and paratracheal nodes had shrunk. Great news. But, still a diagnosis of NSCLC confirmed by Mayo Clinic. Overnight we were set up for the pulmonary surgeon for a selective bronchoscopy of the lungs (Mon 2/2), a brain MRI and CT thin cut chest scan (Wed. 2/4), and surgery to remove the ovarian mass (Fri. 2/6). So, 3 full days at Emory next week, but should have some answers by week's end. The best outcome will be a very early stage of lung cancer, even the occult stage as the doctor called it. Hopefully, the ovarian mass is not malignant, because then we will have cancer that has spread. So, in just changing doctors we have gone from being told Stage 4, to being hopefully stage 1. I can't believe that can happen-second opinions are really important. My sister and I are optomistic, but carefully so, since we have been on such an emotional rollercoaster. I know they do not know until they get the tissue out to test. We also thought Mom's brain had already been checked, during the PET scan (?), but this doctor said we needed an MRI. We were excited that we had all her scans in our hot little hands the night before going to Emory-and held those things up to the light! Imagine-we couldn't read a thing on them! Guess that's why there's a school for that. Thanks again for all the warm welcomes over on the introduction page. Kelly

Hi everyone, thanks so much for the kind welcomes, they are such a comfort. I am posting on the early stage NSCLC discussion the results of our trip to Emory. That way I can get some feedback over there too. TeeTaa in Roswell, I will PM you-is that a private email that goes to you? Do i just click the pm button? I know, computer illiterate and I'm married to a computer geek! I am in Kennesaw, GA. Sharing information would be so nice. In my opinion, this is by far the best website and message board for lung cancer support. I have even given the patient social worker at Emory this web address to add to his list that he recommends to patients. They did not have much for lung cancer specifically. Thanks again everyone, you are all special people. Kelly