Lung Nodule In CF

J

JBM

New member
Hello Everyone-

i am 55 w atypical CF delta 508/5T and in the last 7 years have had 4 cancers...2 in situ, 1 early, and lastly lymphoma, which was in the blood when diagnosed.

Two weeks ago I coughed up blood, a bit different than my normal CF hacking, which brought me to the ER where they found a 2.24 cm nodule in my left lung lobe.

I had a bronchoscopy in an effort to get it, and they removed a mucus plug thinking that was it. Long story short, the nodule remained and a lung culture showed I had RSV, MSSA, and Aspergillis growing, so I can't have surgery to remove nodule, and I am waiting.

Its such a scary proposition knowing that waiting can be deadly if it is cancer, but they don't believe my lungs will make if I don't -- anyone have any experience with this? Also they won't give me anti fungals to help...not sure why. Feedback would be great!
 
P

Printer

Active member
Wow, I have so many questions. Were you diagnosed at an APPROVED CYSTIC FIBROSIS by a CF SPECIALIST> Have you had a FULL CF SEQUENCING done?

Bill
 
J

JBM

New member
Yes, I am at Yale CF clinic. I always sort of believed I had CF but I was diagnosed with ABPA as a young girl. I had lots of lung issues and bronchestasis and was tested at National Jewish for a Delta 508 in 1998. I was grateful to be there because they too believed that I did not have ABOA solely, and told me to test again, when they had identified more alleles. Long story short, 8 years ago at 47 my lungs became more CFie, and I went to Yale after 25 years with my pulmonologist. They did do full sequencing for CF, (but I would have to pull that out), and put me in their clinic. For some like me, the clinic reported symptoms "turn on" and these last years have been highlighted many infections and cancer, which it appears can also be a symptom of having a crappy CF immune system for all these years.

i am blessed to have had fabulous doctors ( for the most part ) and I try to take one day at a time. This nodule though is not what if hoped for after fighting all of this for so long. I can't complain, I've lost so many friends at younger ages, so I make the best of every day I have.

would love to know if anyone with CF has had to have a lung resection,and how they fared during recovery.

thanks!
 
P

Printer

Active member
I would suggest that it is time for a second opinion. You could go into NYC or up to Boston either way it is a one day round trip on the train. If you select Boston, I would recommend Boston Children's Hospital Adult CF Clinic.

Billl
 
J

JBM

New member
Hi

I appreciate your response but can you explain to me what the basis is for you recommending that I get a second opinion?

Are you basing it on my CF diagnosis, or nodule diagnosis?
 
P

Printer

Active member
It is only my opinion based upon many, many years of mis-diagnosis. I am only commenting on what you have posted here and what I would do, if I were in your situation. BCH has one of the best CF Clinics in the US, it is also DIRECTLY connected with Dana Farber Cancer Clinic.

You do what is best for you but now you know what I would do.

Bill
 
J

JBM

New member
Hello again--

I understand you are just offering your thoughts and opinions-- I appreciate that. My question is what makes you feel that way based on what I shared?

I would be willing to go anywhere for a second opinion, and am just interested in what raises red flags for you. I appreciate everything shared is in good faith and a hope to help people...so I hope my response didn't make it sound otherwise. Sometimes it's good to hear why other people feel the way they do.

Thanks in advance
 
P

Printer

Active member
The big red flag, for me, is the haste to do surgery. I was recently hospitalizes (CF floor, CF Team) and I coughed up a quantity of blood. There was no talk of surgery and the CF Team feels that a bronc can cause additional problems. With CAT Scans and MRI's there are less invasive ways to get answers.

If I were in your situation, I would want a combined opinion of both CF & Dana Farber before I went one more step on this journey.

If I can be of any hepl, let me know.

Bill
 
J

JBM

New member
Thank you for your input... That makes sense. The only arguable issue I have is a relatively large solitary nodule 2.24 cm And s history of cancer, but I too have had several misdiagnosis' so your point is well taken especially considering the seriousness of the surgery itself.

Thanks
 
M

Melissa75

Administrator
JBM,
hi I don't know if my experience can help reassure but most of my CT scans show nodules, one time one was 1.7 centimeters. And thus far it's always been infection and inflammation, because on follow-up scans the nodules are in different places. I believe the follow up choices are fine needle aspiration biopsy or a follow up scan to check the rate of growth. It's probably not super helpful for me to say, try not to worry, but with infection, esp apba and ntms, I was told nodules are very common.
 
P

Printer

Active member
While I honestly believe that my Father had CF (2 milder mutations) he was never diagnosed. He was diagnosed with lung cancer at age 45, he was diagnosed with TB at ages 49, 52 and 59. Yes he had 2/3 of one lobe removed. He was diagnosed with COPD in his late 60's. He lived to be 76. My Mother, Brother and Sister each died from Cancer. While I have never been diagnosed with that disease, it is never far from my mind. So you see, my comments to you are based on several years of contemplation and not just on your current post.

I was told that reviewing a x-ray of a CF patient, by an uninformed radiologist, is akin to walking through a minefield. If I were dealing with CF and Cancer, I would want my Doctors to "be golfing buddies". By that I mean, I would want a clear and continuing line of communication between them.

When I say "this is what I would do" it is because I have pondered the thought for several years.

Bill
 
J

JBM

New member
Thank you for your advice. I contacted Dana Farber today, and they call within 24 hours for a second opinion, so I am scheduling that ASAP.

You are right, it is so scary, after 4 cancers, to have them find a new nodule that wasn't there two years ago, almost an inch long. But I am trying to stay positive because the chance that it is non cancerous exists as well, especially with all the garbage my lungs grow. You have been amazingly helpful. Thank you so much.
 
J

JBM

New member
I don't see my last post, so I am going to try again. Thank you both. I did make an appointment with Dana Farber for a second opinion. And yes it is terrifying to think I might have another cancer after having 4 diagnoses of cancer in the last 7 years, along with the official CF diagnosis.

I am trying to keep positive, knowing that there is a chance this nodule is benign CF garbage, and not cancer.

Thank you for the support!
 
P

Printer

Active member
When you get your appt with Dana, I would call the Adult CF Clinic at BCH to get a 2nd opinion there also. There is a bridge connecting the two buildings.

Let me know if you need any City of Boston info or if there is anything that I can do to help.

Bill
 
J

JBM

New member
Ok. I will call ahead tomorrow to try to get the appointment the same day or the next day and we will spend the night. Thank you. I will check in again as soon as I get more specifics. Again thank you so much.
 
J

JBM

New member
Hello Everyone--

i wanted to share with you all that I had a PET scan yesterday, a PFT today where my FEV1 went up by 25 points. I also met with the thoracic surgeon to tell me what the outcome of the latest scan was, and he reported that the nodule is resolving itself, and is not even measurable!!! They will keep a watch and scan me again in 8 months! I wanted to thank you all again, and share sometime miracles really do happen. Until today I have never been the recipient of good medical news, instead it has always been sorry but it's cancer..... Today the miracle was, sorry but it's a serious infection and I couldn't be happier? Thank God!!!!!!!!!
 
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