This post is about my mom, however; she has been very ill and uable to research her illness, so I am taking the step. I have really enjoying reading all of your posts and am excited to be a new member. It seems like you all have a great support group.
Mom went to the emergency room with chest pains a month ago. They observed her for a night and did not find anything. Five days later on April 14 she had a high fever, chills, chest pain, short of breath etc. She went to the doc. said she had pneumonia and put her in the hospital for 6 days. Her white blood count jumped up to 23,000.
Three weeks later she is still suffering from severe chest pain, short of breath, diareha, bad cough, losing weight, extremely weak. The only symptom that is better is that her fever is gone, and her blood work looks good.
We went back to a different doc. last week and after all of the chest x-rays they have done, she found something suspicious. We went for the cat-scan and it showed up as: 2 nonspecific noncalcified lung nodules, with the advice to get a pet-scan in 4-6 weeks. We are in the midst of getting an appt. with a pulmonologist.
She quite smoking right before the onset of her pneumonia, but smoked for 40 years. She has also had nodules about 20 yrs. ago that calcified and were nothing.
I have seen that alot of you have had similar posts about nodules, and would LOVE any feedback! Is there a correlation with the pneumonia and nodules? Could it be cancer? I would love to know if anyone has had any similar situations. Sorry this is so long, I am just so concerned!
My best advice for you if your going to be the one researching is to get ALL the records of any testing your Mom has had. That way you will know EXACTLY what they say, so it can enable you to do better research. I believe this is MOST important, so you and your Mom can be the best advocate in her healthcare! The CT scan will tell you the shape, and size of these nodules, as well as where they are in her lungs. As well as the "impression" the radiologist has of them.
The fact they are ordering a PET scan leads me to believe that they are suspicious for cancer. BUT, something you NEED to be aware of is this..A PET scan CAN detect cancer (hypermedobolic uptake), BUT it can ALSO have "Hypermedobolic uptake" and NOT be CANCER! This happened to ME personaly! So that is something you need to be aware of. I had two nodules which were also non-calcified in my lungs which they "followed" through CT scan. I had a sudden rapid growth of one, and it became "spiculated"(which can indicate cancer) in shape and it had "Hypermedobolic uptake"(Which can ALSO indicate cancer) in my PET scan. I was told it was 94-97% sure, it was cancer! I went through a cancer "staging" procedure biopsing all the lymph nodes in my chest, and all were benign. The nodule itself was in an area they couldnt biopsy, plus, unless they can get a positive biopsy for either fungus, infection, or malignant cells ect.., then they really cant be 100% sure. Then I was scheduled for surgery to remove my right upper lobe. I went through surgery, and by the Grace of GOD it wasnt cancer! It was a rare type of infection called MAC(Mycobacterium avium complex) that presented just like cancer.
This all happened at a Mayo clinic, as a matter of fact they are using MY CT scan as a teaching tool today, because of how this infection CAN "look" just like cancer. Doctors really have a huge dilema when it comes to lung cancer and early detection. The fact cancer cells can be missed in a biopsy, you can get a "false negative". So it leaves them in a situation where, UNLESS they have a positive biopsy for something, then there is still uncertianty. And with how deadly cancer can be unless its detected early, SOMETIMES its better to go in, and get it out, to know 100% for sure what it is.
The fact your Moms WBC count was soo high indicates something MAJOR going on (infection). My WBC reached 22,000 on one occation and I was in congestive heart failure at that time. 23,000 is MAJOR high but I see you mention her labs are back down to normal now. I'm not understanding WHY they are waiting 4-6 weeks for PET scan though, that dont make since to me. Hopefully you can get into a Pulmonologist quicker and they can get the PET scan moved up.
The thing is, Nodules can be MANY things like, scarring, granulomas, infection, fungus, virus, and cancer. But I think its VERY important to KNOW FOR SURE what exactly it is. Dont be afraid to be persistant, and dont leave until you feel satisfied and understand what they know. Also IF at all possible they can do a biopsy, MAKE SURE they do a test for MAC infection also! It seems to be something that gets overlooked in the testing faze, and there IS a rise in women getting this disease. Just MY opinion of course, but just may save a surgery?? Although it does take a couple weeks for results on that test. You never know.
I think its wonderful your doing this for your Mom. But "TRY" (I know its HARD) Not to get too worried, until you have ALL the facts! But DO educate yourself on everything they find. That way YOU and your MOM can make the best decisions for her own healthcare!
I do wish you all the best! Please let us know how she makes out with all of this!
Thank you so much for your detailed response! This has helped me tremendously and I feel like it will help guide us in the right direction. I hate that they thought you had lung cancer, but so glad that it was MAC. I just started looking it up on the web, and have written it down to tell the pulmonologist. We are working on getting all of her test results now to take to the pulmonologist when we go.
I hate that they said 4-6 weeks for the pet-scan, and will definitely try to move it up. The internal medicine doc. also mentioned that they may want to do a bronchioscopy (spelling?) before the pet-scan, but isn't sure which route they will take. The pneumonia is still very evident in her chest, so I'm not sure if they will have to wait for it to clear....but I hope not.
We live in Montgomery, AL and I have discussed taking her to the MAYO clinic depending on the feedback from the pulmonologist. I have heard wonderful things about that hospital, and obviously they were able to detect a rare disease on you!
I am going to be extremely aggressive for my mom, because I want to get to the bottom of this. Hopefully it is nothing bad, but I will not stop until we know for sure. She is just still so sick from the pneumonia with little improvements that has made us more worried about the nodules. I am a HUGE fan of early detection, and whatever it is I will not rest until it is detected!
Thank you so much for your time, and your insight. This has greatly helped us move forth in our journey. I will most definitely keep you posted. Mom did not even know I was joining this sight, but I was so excited and relieved to receive a reply from you that I read it to her. She starting crying and wanted me to tell you that she is very grateful. My mom is a very strong lady and I am sure we will get through whatever it is.
Thanks again for your generosity.
Im glad I can help somewhat, and tell your Mom she is VERY welcome. Her having a positive attitude will take her a long way, what ever this turns out to be. I dont know how old your Mom is, but I'm a single Mom of two young boys, 15 and 10, I'm 43. To be told you have lung cancer, and telling your children who knew exactly what that all ment, totaly broke my heart. But I told my children that they "thought" it was cancer, that I had the best Doctors out there, and they would do everything they could to help me. Which I truely believed! And that I would be totaly honest with them.(I researched that also "how to tell your children".
I can remember like it was yesterday having my appt with the surgeon. He told me that the "Greek" word for cancer is "crab" and he showed me my CT scan, he said This is the classic case of cancer. Yes it was shaped like a crab at that point. So with ALL the research I had done prior to seeing him I said..Well you know, I've defied the odds before. He said, "Well denial is a common reaction for someone who is told they have cancer"(In a nice way of course). I said .."Well, YOU Call it deniel, "I" call it FAITH, I will believe it, when I see it...Quite honestly Casey, I didnt know what it was, but I KNEW that what ever it ended up being, I had GOD on my side, and I felt safe. And SO Many people praying for me, that what ever I was facing I could get through it. Positive attitude, can take you so far, and gives you the ability to stay strong, and face what ever comes. Needless to say, the surgeon was SO happy to be wrong, as well as my Pulmonologist.
When I went for my follow up appt with my Pulmonologist she was kind of "feeling me out" to see how I felt about how things transpired, and wether I really understood their dilema when it comes to lung cancer. It was all the research I had done, that made it very understandable for me to know they were looking in MY best interest. Plus I had peace of mind knowing exactly what it was. She was actually relieved by that.
Unfortunatly NOW I have 2 new nodules in that same lung, and she told me that "HAD" that been cancer, she would be VERY worried it was back. So right now I do have some uncertianty myself, and these new nodules have to be watched. The Doctor feels "safe" in waiting 6 months for follow-up scan with these, because the main mass was benign. I DO feel un-easy with waiting that long, but having too many scans is ALSO a risk..Its crazy.
The MAC itself is a nasty infection and very difficult to treat. It's actually in the TB and Leprosy family but IS'NT contagious. But is harder to treat than TB itself. I mentioned before that there is an upswing in this disease particularly in the Southeast,(which is what Mayo told me) and in women. Being your in Alabama, could be a possibility.
The bronchoscopy they would go down into the lungs and take a "brushing" or "washing" of the infection, and also can do biopsies as well. Mayo has this procedure called "EBUS"(endobronchial ultrasound) and "EUS" (endoscopic ultrasound) so together its called EBUS/EUS. I believe they are the ONLY ones using this technic together. It enables them to VIEW and BIOPSY all the lymph nodes in front of AND behind the lungs. They go down into the lungs via the mouth as well as go down your throat to the stomach to check for any spread there as well. So no incisions are made on the outside of the body. Its a team of a Pulmonary, and a GI Doctor that perform this procedure. It has a very high accuracy rate in detecting any cancer spread in the nodes. They concider this a cancer "staging" procedure. The old way these stagings are done involves actually opening the chest to biopsy or going in through the chest with needles to biopsy. I go to the Mayo in Jacksonville Florida, which would be closet to you as well I believe. It really is an amazing place.
Your Mom must be wonderful to have raised a wonderful daughter as yourself! I'm sure she is proud., shes very blessed. If you run across something your not sure of, please feel free to ask. I certiantly dont have ALL the answers, but will help you look for them.
Thank you so much for your wonderful support and feedback.
I wanted to let you know that we got mom an appointment with a good pulmonologist in town for this Wed. We ran around and gathered all of her test results from everywhere on Fri. She is still doing about the same, eating a little more though, which is good. She had a fever of 99 tonight. I know that is low grade...but wouldn't you think after almost 4 weeks the pneumonia would be gone? All of the symptoms are still kicking strong. I think we are both a little anxious. We just want her to feel better. We also started writing down a big list of questions for the doc. so when we see him we will remember what we have been concerned about. (I wrote down about the MAC and mom wants to ask him about MRSA). I also mentioned the mayo clinic to mom again. She said she definitely has not ruled that out. So I guess we will wait and see what happens on Wed. I will most definitely keep you posted on what the doc. says.
By the way, my mom is 57 and I am 24. I have an older brother that is 36, so I am the baby of the fam. Also, I will definitely keep you in my prayers about your nodules, I now realize how scary this can be! I had no idea!
So great to hear your Mom is getting in to see the pulmonologist SOON! Don't be surprised if they havent heard of MAC! That was MY experience with a local pulmonologist here at home. I went to him to "try" to save a trip back to Mayo for my follow-up appt. after my surgery. All I wanted was a local Doctor just in case I got sick or needed referal back to Mayo. When I told him what the infection was he literly backed away from me, stood across the room and told me he didnt know enough about the infection. That if it was up to him, he would send me to a "infectous disease" doctor and that I should be tested for HIV!...HUH?..He didnt want ANYTHING to do with me, and literly said.."Consider yourself Married to Mayo clinic"! He wouldnt order even a chest x-ray! So with that puzzling a responce I called Mayo back and said..."I thought you said this wasnt contagious, and whats this about HIV!?
The pulmonary Doctor I see at Mayo was NOT HAPPY! She said, "I wish these doctors would stay UP TO DATE on these things"! So she assured me I WASNT contagious, and that MAC was a common organism in our enviorment, It's in our water supply, and our soil. And people who DO get it, their lungs are compromised in some way, (I have emphysema, and larger "bullae" scattered in my lungs) OR they have an immune system problem,(Which I also have a autoimmune disease called Myositis)so with me, these two things made me susceptable.
So it MAY help you to PRINT out something about "MAC" also can be called MAI (mycobacterium avium-intracellular) infection. They are used interchangably. The "University of Texas" has good and accurate information site on MAC, they have been studing this infection for 15 years. So it amazes me that it HAS been around for quite some time, but STILL because it's Rare, many Doctors don't know alot about it. Just a thought.
With all my health issues, I've been through many Doctors, and have learned the hard way that to be our OWN best advocates we have to educate ourselves, as well as the Doctors sometimes. Everything I have is "Rare" with multiple body systems involved and nothing is related to each other. Mayo is the facility that I FINALLY got answers to these symptoms. But I still need to have local Doctors should I need something quickly, given Mayo is 300 miles away for me. So I have a local Neurologist that I see for the Myositis, I bring her printed information off the net to explain some of these rare ailments I have. Then she also does research if she isnt up to date on things. We have an awesome "Team relationship", and thats how it SHOULD be, in my opinion. So a "Good Doctor" dosent have to have ALL the answers, BUT a "Good Doctor" has to have to passion to learn, or admit its beyond their expertice and send you where you need to go. Just my opinion of course.
I look forward to hearing how your Mom makes out with this Pulmonologist, and will certiantly Pray that he turns out to be a "Good Doctor" and you get answers quick! Thank you for the prayers! Prayers are ALWAYS good!