The waiting…for a diagnosis

I'm sorry you're going through this! I have a story extremely similar to yours. January 5th of this year I went to bed started wheezing and spit out a bunch of blood. I went to the er, they did a CT scan right away, and the CT scan showed a 5.7 cm. Mass on my right upper lobe. They said it had been there a while and of course they thought it was cancer. I was beside myself with grief I take care of my five-year-old granddaughter I'm all she has.

I imagine the worst, and I was living in absolute tear! The next thing my doctors did was a pet scan the pet Scan also showed that the mass was hypermetabolic, so it looked like cancer but the pet Scan also was saying that it seemed to be more of an infection than cancer which was a little shocking. So then they scheduled me for the bronchoscopy and once the doctor got in there they could see that I had a horrible infection in a lot of my lung and he poked around in that Mass but really couldn't tell what that was so they took some biopsies, and a few days later I found out that I had Klebsiella pneumoniae, and about 3 weeks after that I found out I had MAC, Mycobacterium Avium Complex, which is in the family of TB but it's a lung infection that causes cavities to form in your lung, (which is what my mass actually was) but it can be treated with antibiotics once they find out you have it. It's very slow going and can take years before someone notices it on a CT scan by accident, and some people get symptoms like coughing or being very tired, there's a long list. I had no symptoms except for the coughing of blood and I had a pretty big mass.

I hope that you don't have cancer, I know what it's like to live in that terror and it taking forever to get these tests done. I had to wait almost 4 weeks to get the bronchoscopy done and then another five days to find out that I had a pneumonia and another 3 weeks before I found out I had Mac because they grow the cultures in a petri dish. It takes a while for them to see if you have a weird infection!!!

If you have any more questions I'll answer anything the best I can. But I pray that it's something other than cancer, and I am absolute proof that it can be something else because everyone including my doctors thought that I had cancer on my lung. I am 52 years old and smoked for 30 years but quit a few years ago. I will never forget the terror and the fear I felt during those weeks, and I don't wish that upon anyone so I pray for you to have some peace in your heart and to know that this can very well be an infection.

Many strange things have been going around since covid, you just don't know. And try to stay off the internet I'm reading about things because you will just scare yourself right into a corner!!!

The best thing I can tell you to do is try to just accept whatever's happening at this moment right now since the waiting for tests and on results take forever and you're not going to get the answers immediately ! The more I accepted things, the better things were.
Angela

Thank you… so much.

I guess one question.. were the doctors pretty certain it was cancer before the biopsy? I haven’t had a PET yet, that’s actually after the biopsy…. But so far they aren’t optimistic it isn’t cancer. I know they have to prepare us for the worst and they have to stick to the textbook… but what was the Drs tone and mood before you knew?

They didn't seem real optimistic because 80% of the time if you have a mass that large, over 3 cm, on your lung it's probably going to be malignant. When I first saw the pulmonologist he did tell me that it didn't look like cancer to him but that didn't mean that it wasn't. So he was the first one that gave me some hope! When I had the pet Scan the pet Scan actually showed that it was hyper metabolic, and that's what cancer shows up as, but the impression on the pet Scan said that it seemed to be more of an infection than to be a neoplastic process (cancer). Even after being diagnosed with Mac, my doctor ordered another biopsy because they wanted to take a chunk and see if it was cancer off of the cavity lesion in the lung, but when they did the first round of scans it showed that things were already healing and the satellite nodules had largely dissipated that had been around that mass and the radiologist just told me that cancer doesn't shrink so they deferred it.
I've heard of a couple other people having some strange things going on with their ones now. There is something called long covid where you can develop these like things that look like cancer on your lungs from having covid, and also been cases of people developing these masses on their lung from vaping (although rare) you're so young I just highly doubt that cancer is what it would be. I definitely have a lot of Hope for you that it's not that!!!

Thank you. That’s the only thing is that the pulmonologist said in her opinion it was but a biopsy would say for sure… oh well, I will know within the next two weeks either way 🙂 thank you for your replies, sincerely.

The fact is.. that it can be something else though. But generally doctors like to prepare patients for worst case outcome. I have had cancer and I know that's what they do. Also, just know that if that is what it turns out to be, lung cancer treatments have come so far just in the last 3 years that they can do the most remarkable things, but as I said before, you're so young, I just have a lot of hope that it's not going to be that!!!
Angela

I just wanted to add that my lymph nodes were also swollen above the mass and showed that on the CT scan as well. When they did the bronchoscopy they biopsied 4 lymph nodes and the mass, which was 5.7 cm. I just wanted to add that because there is a chance with all the weird infections in the lungs going around that this is nothing more than that! 🌞

Thank you... that helps a ton because frankly that is what I am worried about the most (if it is cancer, that it has begun to spread). I really, really appreciate your thorough and sincere replies. It has reinforced the hope that I have right now. Thank you so much

You're welcome! I wish someone would have reached out to me and let me know that it could be something besides the worst, because the fact is there are many other things it can be!🌞 Have a great day

Hey, I added a new post but unfortunately this is now confirmed as squamous cell carcinoma. So the fight begins.

Thank you for your words of hope and thoughtful responses, and I hope you are doing well!