famograham Posted April 10, 2008 Share Posted April 10, 2008 Hi everybody Things are going well at the moment, mostly. Mom is feeling good, aside from needing a nap most days. She's still doing all her fun stuff like bowling, ceramics, long walks etc..so that is wonderful. BUT I'm upset about something and I don't know if I should be or not. Mom had her biopsy (bronchoscope) on April 1st (lung specialist), they are not fitting her in to get her results until the 23rd!!! To me, this sounds like an INSANE amount of time, when she could be starting treatment! Shouldn't she be seeing an oncologist by now?? I'm really pissed about this...is it normal to have to wait 23 days to get biopsy results?? And if not...is there anything I can do to help?? hugs, Linda Quote Link to comment Share on other sites More sharing options...
fillise Posted April 10, 2008 Share Posted April 10, 2008 It shouldn't be normal, but unfortunately it is more common than you would expect. Most of us were frustrated in the beginning by all the time it takes to get the diagnosis, figure out the treatment options and get started. You can call the onc. office or the hosptial and keep calling until you get results. I had a friend a few years ago who could move mountains by never losing her temper, but continuously repeating "I'm sorry, that's not good enough" until she got what she needed. I've tried it and it works more often than not. It's worth a try. Susan Quote Link to comment Share on other sites More sharing options...
Patti B Posted April 11, 2008 Share Posted April 11, 2008 Linda- I was diagnosed by CAT scan on September 29, 2006. I was told to call a pulmonary doctor. I wanted to go to the Cleveland Clinic and was originally told that the first available appt was in November!!! I was freaking out!! The only thing that saved me was a very close friend worked at the Clinic and pulled a few strings and got me an appt. the following week. So I guess sometimes it does take longer than what we as patients want. Its just so frustrating, though!! Good luck and keep us posted!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 11, 2008 Share Posted April 11, 2008 Hi Linda. I am from BC as you know. I do not think the 23 days to get the biopsy results is normal at all. I found out within days of mine,if not less. Then had other procedures (see below) done for staging purposes. Probably fortunately for me, I ended up in the hospital and had bronc and then other stuff done. I think that once you are in the system per say, things happen quicker. Where was the bronch done?? I would be phoning that doctor's office everyday to get the results...they are available in a matter of days if not less from my experience. And you should be able to get a copy of the report. Does your mom have a GP, because the GP would also be copied on the report and you could get it from there. Then you get can on with whatever else needs to be done. You definitely shouldn't need to wait for an appointment to get the results. There is potentially other waiting in the works for you but this one does not make sense. PM if you like, maybe I can help. I don't blame you for being annoyed at this one. I would encourage you to be exceptionally annoying with whomever it takes at this time. Sandra Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted April 11, 2008 Share Posted April 11, 2008 Linda Like Sandra, my Tom had his results in days as well. From the time he had the first x-ray ubtil the first treatment started was 29 days. We have a very good team of doctor's that pushed him through. The longest wait's in between were to do the bronchoscopy because he had to be off Plavix for a week and then 10 days after diagnosis to see the Onc. So no I do not think it normal to have to wait so long. The waiting is the hardest part though. When I called the pulmonologist to ask if waiting 10 days to see the Onc was going to be bad as I was still in freak out mode she said to think of it as breathing time. I wanted to smack her!!!! But as it turned out he is fine and treatment at this time is working. Good luck with everything. Denise Quote Link to comment Share on other sites More sharing options...
dchurchi Posted April 11, 2008 Share Posted April 11, 2008 Alan had a chest x-ray in the morning, we were told (and saw) the tumor that afternoon and within 2 days he started radiation and chemo within a week. I agree 23 days is unaccetable. It can not hurt to call and yes kindness helps. I made it a point to make "friends" in high places. Alan's medical oncolgist jokes I have Alan's scan reports on my computer before he has them. Not really, but almost. You need to be your own advocate in this situation. Good luck and keep us posted Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted April 11, 2008 Share Posted April 11, 2008 I would get a 2nd opinion.... I think it was only a few day(less than a week) before I got my results. Quote Link to comment Share on other sites More sharing options...
ztweb Posted April 11, 2008 Share Posted April 11, 2008 Linda, This does seem like a long time to me. If (and I don't think it is!) it were small cell, there would be significant growth in the tumor after that much time. I hate to say it, but I am a huge fan of the second opinion. My dad had all of this done at Mayo and we had results the next day...I know that isn't standard fare, but at the same time, it just lets you know what is possible. Blessings and good luck, Jen Quote Link to comment Share on other sites More sharing options...
famograham Posted April 11, 2008 Author Share Posted April 11, 2008 THANK YOU so much, for the validation!!!! I just read this whole thread to Mom. She is going to call our GP, and go see him. Maybe he has the results by now, or maybe he can help her push for speed. It feels SO wonderful to be backed up...so thank you once again. Much love, and I'll let you know what happens, xoxox Linda Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted April 13, 2008 Share Posted April 13, 2008 Hi, Linda. It sounds to me as if there are two items here: (1) The date the results get back to your doctor; and (2) the date of your appt. with doctor to discuss those results. In my case, my doctor (the pulmonologist who performed the biopsy) contacted me within 3 days to give me results (biopsy returned squamous cell cancer cells). My appt. with her, however, was not for another week or two, and its purpose was to discuss the next steps. My response to that was B--- S---! Instead, we "agreed" (translation: I demanded) that I would see a medical oncologist the next day, which I did, with the result that my concurrent radiation and chemotherapy started four days later. (YES!) I have decided during this past 15 months that the first "treatment" every lung cancer patient should undergo is Assertiveness Training! Carole Quote Link to comment Share on other sites More sharing options...
famograham Posted April 15, 2008 Author Share Posted April 15, 2008 OK, I will try to explain this the best I can...but my head is pounding right now...and I feel a little ill! My Mom went to see her regular doctor to see if he had any information. He did, but felt not entirely qualified to explain everything as well as necessary. FIRST- Bone scan was negative SECOND- Biopsy came back NEGATIVE! So what does this mean???? Are there very often false negatives for biopsies? She now still has that appt. with the lung guy on the 23rd He will be able to explain this all better I guess! Dr Sulz (our doc) assured Mom that if the results had been conclusive, they would have had her see an Onc by now. I am freaking out a little bit! Just the negative bone scan is enough to make me very pleased. But this negative biopsy has all kinds of fantasies running through my mind! We live on the east coast of Vancouver Island, where there is a tree fungus called cryptococcus (sp?). The disease it causes in the lungs can be mistaken for lung cancer and can also cause weight loss. See this link: http://www.thoracic.org/sections/clinic ... tient.html My mind is absolutely spinning right now. Of course, it is most likely still cancer, but even still...I do have reason to be feeling so excited with the negative bone scan right??? PLEASE share your thoughts... xoxoxo Linda Quote Link to comment Share on other sites More sharing options...
SandraL Posted April 15, 2008 Share Posted April 15, 2008 Hi Linda. I think you have more reason to have more hope. YEAH...take a deep breath and can't wait to hear back after that appointment. Take care, Sandra Quote Link to comment Share on other sites More sharing options...
Brandyswa Posted April 15, 2008 Share Posted April 15, 2008 You know that old saying Best thing come to those who wait. Be patient and everything will be just fine. Sending prayers for your family. Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 15, 2008 Share Posted April 15, 2008 "famograham"Are there very often false negatives for biopsies?...My mind is absolutely spinning right now. Of course, it is most likely still cancer, but even still...I do have reason to be feeling so excited with the negative bone scan right??? Hi, Linda. Yes, a negative bone scan is very good news, also the fact that the CT scan didn't detect any suspicious areas outside of the lungs (a chest CT scan generally includes the liver and adrenals, and of course the heart, aorta, and esophagus). The clinical case you referenced is quite interesting -- the lung specialist (pulmonologist?) you see in 8 days may have an opinion on how likely the cryptococcosis scenario is in your mom's case. About the biopsy... My impression from what I've heard (you can't take this to the bank) is that when a pathologist designates a sample as "negative," that's pretty reliable, as long as the sample was taken from the proper spot. On the other hand, an "inconclusive" result means there may be something going on there but the tissue supplied doesn't contain enough information to pin it down exactly. My exploratory surgery in 2006 started as a relatively simple scope procedure, but after several samples were declared inconclusive, the surgeon transitioned to a full thoracotomy to get tissue that tested positive for cancer. Again, the lung specialist should be able to advise you on the significance and reliability of the "negative" biopsy. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 15, 2008 Share Posted April 15, 2008 Linda, The regular doctor had the report and was unable to give more details on what could be wrong. Two negative tests are good news. He would have taken action right away otherwise. The specialist may be looking into the fungus associated sickness to get back to you. Good luck Jackie Quote Link to comment Share on other sites More sharing options...
fillise Posted April 15, 2008 Share Posted April 15, 2008 Linda--I think you can breathe a little easier until you see the lung guy on the 23rd. I think a negative reading on a biopsy is pretty conclusive. Susan Quote Link to comment Share on other sites More sharing options...
JocelynM Posted April 18, 2008 Share Posted April 18, 2008 Being patient and living with uncertainty is becoming a normal part of my life. I think it forces us to live in the present. That's a good thing. That being said, I had a doctor who took more than a month to tell me she something on my chest x-ray and to get a ct scan. She took another month to tell me I should have a PET scan. That woman is no longer my Dr. I don't really know what is an acceptable waiting time with this disease. We only know that there is something going on inside us that should be stopped NOW! I hope it all turns out to be something other than LC w/your Mom - it sure happens. It happened w/my neighbor. He had that fungus thing. It happened w/my Dad - just scarring from some other illness. Hoping for the best. JackieM Quote Link to comment Share on other sites More sharing options...
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