FrannieB

My sister had a PET scan last Wed. but the thoracic surgeon she saw today didn't have the results (aarrgghh!!!). He scheduled her for a mediastinoscopy Thursday. The peculiar thing is, once she was at the hospital today getting the pre-op stuff done, the doctor called over and said he wants to ALSO do a broncoscopy at the same time. Does anyone know why that would be necessary? He also told her she either has a fast-growing cancer or sarcoidosis. He said the spots are growing "really fast," even for cancer. Has anyone ever heard of that? Thanks for your help. Frannie

I understand how you feel. My mom died of SCLC almost nine years ago and I was her primary caretaker. Now it looks like my (half) sister has LC and she's seeing all the same doctors in all the same offices as my mom did, and I'll be taking care of her, too. Life ain't fair! Hang in there. Frannie

Thank you to everyone for your quick responses. I was not able to convince her to go to the hospital Thursday night but she did OK. I called her pulmonologist on Friday and he's going to see her on Monday. I REALLY appreciate you guys! Frannie

My sister's having a PET scan Wednesday, then will be scheduled for a mediastinoscopy. The information the doctor gave us about what the PET shows and things I've read online are a little conflicting. Can anyone enlighten me? Things I've read online indicate that the PET scan can diagnose the presence of cancer, but the mediastinoscopy will be needed to determine the type. Is that correct? I'm wanting to know so that we're prepared next Monday (a week from this one) when we go in to get the results of the PET. Thanks! Frannie

I just discovered this forum a few days ago and I already am asking a lot of questions. Now I have another... To recap any other postings I've made, my sister went to the pulmologist last week due to SOB and a cough. Chest CT compared to one taken in March showed that she had (unreported) multiple lung nodules in March. They have approx. doubled in size since that time. She's having a PET and a medialtoscopy over the next couple weeks, but the pulmo fully expects the PET to show that the nodules are "hot" due to their rapid growth. LC is probable. She left yesterday for a three day workshop in Fla. I have talked to her several times each day and she has told me each time how much difficulty she's having getting around. She has not had to leave the hotel for the workshop, but she's so tired and SOB that she is getting to her sessions after they are full. She only made it to two sessions today (out of six). She's complained of pain in the middle of her chest. Just a little while ago, she called me very upset because she's "so exhausted" and the middle of her chest hurts "so much." She was not able to join her colleagues on an evening trip to Universal Studios and won't be able to join them tomorrow evening when they go to Disney World. She said she feels so much worse than she did even a week or two ago. She is very frightened, particularly by the pain. Are the nodules (yes, unfortunately, there are several of them) possibly causing this pain? What about the fatigue? She has always been a high-energy person. This rapid decline is really scaring me. Should she seek medical help in Fla at this point? I swear, I'd like to get in my car and just go get her (I'm in NC). My mom (not the same mom as my sister - same dad, though) died from SCLC ten years ago and she didn't have pain until the end and then it was from the liver, so this is new to me. Thanks! Frannie

I'm new here. My mom died of SCLC ten years ago and now my sister "likely" has LC. I've read a lot of the histories here and it seems that a lot of people get a really quick diagnosis and start treatment/have surgery quickly. It started out that way for my sister, but not it has slowed down and it's making me nervous. She saw the pulmonologist last Wednesday and last Friday had a "stat" CT scan. We saw the pulmonologist for the results this past Tuesday. That was pretty quick. Well, now she's got to wait until next Wednesday to have the PET scan and the following Tuesday to even have an appointment with the thoracic surgeon to schedule a medialtroscope (sp?). I'm thinking it may take a week or two for him to schedule that. By the time we get a diagnosis, it's probably going to be month from her initial appointment. The reason he suspects cancer is that multiple lung nodules that were seen but UNREPORTED (don't get me started at how mad I am about that. They also didn't report that she had pneumonia at the time) back in March had grown "significantly" by her CT the other day. If that is the case, it seems to me that a month is a lot of time to lose. Or is this a fairly normal time span and I am just going nuts over the waiting? Thanks... you guys are great! Frannie

I know just how you feel. I lost my mom in 1997 when she was just 60 and I was just 31. There just never seems to be enough time. Now it looks like my half sister/best friend/roommate has LC. Life's tough, but we just keep going, don't we? Hang in there! Frannie

Update on my sister: We saw the pulmonologist today for the CT results. HE said the nodes have grown "significantly" since March. She's having a PET scan a week from tomorrow so they can determine which nodules (the word used on the referral)are "hot." (am I correct in thinking that means malignant?). The following Monday (two weeks from yesterday) she sees a thoracic surgeon to schedule at mediasconoscopy. Hopefully, that will happen quickly because this is already seeming rather drawn out. He, of course, kept saying "we'll have to wait and see" what it is. One thing that concerned me is that when he learned she had a liver biopsy last fall (for NASH), he asked the PA if it was "negative for glomulomas(sp?)... that leads me to think he's definitely leaning toward cancer (he probably didn't realize one of us would know what that meant). Boils down to more waiting, I guess. Ugh. Thanks to all of you, though, you're a great group! Frannie

Hi. My mom died almost nine years ago from SCLC and now it looks like my half sister/roommate may be headed for the same LC journey. I was mom's primary caretaker (moved in with her) while she fought for 15 months (it was stage IV when she was diagnosed). My half sister/roommate is 57 (I'm 39 - different fathers)has never smoked even a single cigarette but she did grow up in heavy second hand smoke (as did I). Last winter, she started feeling badly and had tests. The only thing they found was an enlarged lymph node in her pelvis and an elevated WBC. A couple months ago, she started having difficulty breathing, shortness of breath, etc. She went on asthma meds but they haven't helped. She has had a cough that won't go away and hoarseness. Last week, she saw a pulmonologist. I waited in the waiting room because we both assumed he would just change her asthma meds and send her on her way. That's not exactly what happened. They did a chest x-ray and compared it to one she had in February. The doctor told her "we have a potentially serious problem" and that there was a "significant change between the pictures done in Feb. and the one done that day." She pretty much stopped hearing after that. They set her up for a CT scan the next day ("STAT" was the instruction) and arranged to come in Tues. (tomorrow) to meet with her about the results (the doctor and his PA are usually at another office on Tuesdays). Myself and a friend are going with her tomorrow, needless to say. I'm not a medical person but I became VERY well educated about LC and cancer in general when mom was sick. After the CT last week, they gave her the hard copies to take to her doctor. I took them out and looked at them. There is something pretty big in one lung and something smaller in the other. My understanding is that lungs aren't supposed to have anything "in" them. I don't expect to be told anything concrete tomorrow. I think it will go one of two ways. 1.) they can tell from the scan it's scar tissue or an enlarged lymph node or whatever and that would be good news or 2.) It's something but they need a bronchoscopy to know WHAT. Does that seem reasonable or am I jumping to conclusions because of my history? Oh, and she's going out of town to a workshop for five days on Wednesday, so it'll be at least a week or two before they could do a bronchoscopy. I think I'm actually more antsy to know what's going on than she is! On a personal note, this is kinda freaking me out because the pulmonologist is the same one who diagnosed mom's LC, same office, everything. Like I said, I was mom's primary caretaker and I would be my sister's, should it come to that. I'm already having some trouble coping with the possible repeat trip down this road, especially since she's my only remaining family member. Thanks for your input. I've read some of your posts and this is a really nice group of people. I wish I'd had this kind of support available when mom was sick! Thanks, Frannie