06211219 Posted March 29, 2019 Author Share Posted March 29, 2019 Spoke to the doctor and he had nothing to offer other than his results were negative for a fungal/bacterial issues. He wants us to keep the pulmonary appointment - and possibly schedule a broncoscopy. My question is, I don’t understand why? As much as I like to “doctor google” everything - I just don’t know what we could be looking at. His doctor just isn’t very forthcoming and I am always left with a thousand more questions that he can never seem to answer. Link to comment Share on other sites More sharing options...
Curt Posted March 29, 2019 Share Posted March 29, 2019 The not knowing is what many people (and their loved ones) struggle with most about cancer. I went through that with my dad and spent the last year going through it myself. Doctors tend not to speculate on things. They prefer to follow the evidence until there is a clear diagnosis. I’m sure there are ethical and legal reasons why they have that approach. If you are feeling frustrated it is perfectly reasonable to seek a second opinion. Link to comment Share on other sites More sharing options...
albertstanley Posted May 21, 2019 Share Posted May 21, 2019 On 3/24/2019 at 6:25 AM, 06211219 said: And just to note he has had no symptoms whatsoever. His scans just stared showing this weird fungus or infection. Up til now the only thing on his scans was the cancer. i heard that some of the best radon detector can detect the cancer too. You can test radon levels yourself, but getting expert help is a wiser choice, as professionals offer radon mitigation services if required. Stop taking risks! Simply contact PA DEP (Pennsylvania Department of Environmental Protection) certified radon mitigation specialists for a radon inspection of your home. If you are wondering, “Why does Pennsylvania have such a high concentration of radon,” the answer probably lies in the fact that the state has unique geology – distinctive soil and rocks! According to very recent findings, the rise in radon levels in the state may have a connection with the fracking activities, although this is yet to be confirmed. Fracking is the process of industrial development by which water is used to extract natural gas and oil from shale plays (formations). like this one best radon detector. Link to comment Share on other sites More sharing options...
06211219 Posted May 23, 2019 Author Share Posted May 23, 2019 Thanks Albert. But he smoked and was firefighter for 19 years. So I am sure this is just unfortunately what happens with SCLC. It's horrible. Link to comment Share on other sites More sharing options...
0621121974 Posted June 8, 2019 Share Posted June 8, 2019 Update - still no answer as to what is going on I his upper right lobe. There are now two nodules with defined cavitation, and multiple smaller nodules. It is not TB or NTM. He has been off of all cancer treatment. His pulmonologist and oncologist, do not want him to have immunotherapy because they are not sure if this is what possibly caused these new nodules. His oncologist said, they truly don’t know how SCLC behaves in immunotherapy, there isn’t enough data since this is relatively new. The lung cancer is still there, and slowly growing. We go for a follow up mri on Tuesday for his brain mets, hopefully they are still stable. Hope everyone is doing well 😊 Link to comment Share on other sites More sharing options...
0621121974 Posted June 12, 2019 Share Posted June 12, 2019 MRI of the brain results today - still stable at 9 months 😊. Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 12, 2019 Share Posted June 12, 2019 Like you’ve been saying- your hubby is a fighter. Thanks for the update! Link to comment Share on other sites More sharing options...
0621121974 Posted June 13, 2019 Share Posted June 13, 2019 Pulmonologist called will definitely have to have surgery - they have tested for every possible fungal infection you can believe this has been since March. Multiple cavitation nodules in upper right lobe and middle lobe and multiple satellite nodules. Anyone have any experience with thoracic surgery? And if all the blood, sputum and even biopsy’s keep coming back negative or inconclusive, what could it possibly be? I asked the pulmonologist if there is a chance this is just more cancer, he thinks it’s unlikely but said obviously anything is possible. His fungitell level was 31 on March 21at, his May 30th levels were 298. Sorry so long winded, this is the first time my husband seems apprehensive. He is extremely worried about the chest tube. Any answers would be greatly appreciated. 😊 Link to comment Share on other sites More sharing options...
BridgetO Posted June 14, 2019 Share Posted June 14, 2019 Is his surgery going to be open (thoracotomy) or VATS (video assisted, small incisions)? I had VATS for removal my lower right lobe and it was fairly easy, as surgeries go. Mine turned out to be cancer, but I suspect that any thoracic surgery to remove part of a lung would be pretty similar. Do you know how much they are planning to remove? The chest tube was a big drag, but tolerable. I was released from the hospital the day after surgery with the chest tube in place since I still had an air leak. The tube was in for 10 days. It took some management to prevent the drain bag from leaking, but I was able to get around OK with it attached. Moving in certain ways while I had the drain in caused a jab of pain, so I learned pretty fast how to move to avoid this. I was on opioid pain meds while the tube was in but got off it pretty quickly once it was out. A lot of people end up staying in the hospital until the drain comes out. I was glad to be released earlier. If your husband thinks he will be released with a tube in, I can give you more info about tube management. So far as surgery goes, my main recommendation is to have a wedge pillow to sleep on when he comes home. Having upper body on a slant makes it easier to breath after lung surgery. Trying to achieve the position with other pillow just caused me to have a kink in my neck. Best wishes. Let us know what other questions you may have. Link to comment Share on other sites More sharing options...
BridgetO Posted June 14, 2019 Share Posted June 14, 2019 Hey, one more thing! Has your husband been tested for Valley Fever (coccidioidomycosis). It's a fungal disease and It can produce cavitary nodules. I had never heard of it until my pulmonologist (while evaluating me for lung cancer) asked me where I grew up. She was not surprised when I told her central California. She said I had lung scarring that looked like the result of past Valley Fever. This is most common in dry desert areas, especially central California and the desert southwest. I had never been aware of being infected with this, but apparently sometimes it causes no symptoms or only mild ones and other times it can be severe. Link to comment Share on other sites More sharing options...
0621121974 Posted June 14, 2019 Share Posted June 14, 2019 Thank you so much for your reply. We will find out today for sure, but I believe it will be vats. And yes he was tested for that!!! I have never heard of most of the stuff he was treated for. Link to comment Share on other sites More sharing options...
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