So scared!

[MaryB806]

My 59 yr old husband started a cough in August. He brings up a little blood but only occasionally. An Xray showed pneumonia which antibiotics didn't cure. Ct scan showed a small spot and a shadowy mass. Pet scan and biopsy is next but hasn't happened yet.  He is a runner/biker,is never sick and very health conscious. He has never smoked. The pulmonologist says he is impressed with the fact that he still has energy to run. He has not changed his routine at all! Doctor says that he can't rule out cancer but has seen this on cat scans before and it's not always cancer. What else can it be? We're so scared!!!

[MaryB806]

Hi anyone there?

[ipnotica]

Pneumonia can cause a benign nodule that mimics lung cancer.  So can tuberculosis, sarcoidosis, and probably a few other things that I don't know about.  I know it's hard not to worry, but it is possible that it's not lung cancer. To know for sure, you'll have to wait for the results of the Pet scan or biopsy.

My father-in-law got sick and the doctors thought he might have lung cancer.  It turned out to be valley fever.  Once he had the right diagnosis, he was given the right drugs and was finally cured.

[MaryB806]

Thank you. The waiting is horrible. I'm sure many of you know. We will take one step at a time.

[MaryB806]

I don't know if there is no sense of urgency or if it's the norm for scheduling tests. We saw the doctor on Wednesday.  We still havn't heard when the biopsy is scheduled for and the PET scan is scheduled on Oct 20. Does it seem like they are not worried or is this just scheduling.  I would think if it were an urgent situation they would get these tests done sooner. thoughts?

[ipnotica]

As far as I know, they won't do the biopsy until after the PET scan.  The PET scan looks at the metabolic activity of cells and will help identify any areas of concern.  Then, if necessary, they will do the biopsy to determine whether or not cancer is present.

I'm not a doctor, so I can't say for sure, but it seems to me that they aren't particularly worried.  Maybe it's because your husband doesn't have the typical risk factors in his history.  The doctor said he has seen this on scans before and it's not always cancer, but since he can't rule it out based only on the scan results, he's being thorough by ordering the PET scan.  Did he say how big the spot was?  

I know it's hard and I'm sorry you both are going through this.  I think you have the right attitude taking it one step at a time.  Take care, and keep us posted.

[MaryB806]

Thank you. We have plans to visit our daughter soon in Italy. Hopefully we can go but know what the priorities are at this time. This was so unexpected...he's the healthy one in all of the family!!

[MaryB806]

Just wondering...My husband's PET scan is on Saturday.  Next Tuesday he is scheduled for a needle biopsy. How definitive is a PET scan?  Is it possible he may not need the invasive biopsy or is it just better to have both? My mind is all over the place with this.  Still can't believe it's happening to him.  

[MaryB806]

Another question....Is it true that you cannot fly after a needle biopsy?

[ipnotica]

A PET scan looks at the metabolic activity of cells.  Areas of increased metabolic activity will light up more brightly on the scan.  However,  bright areas that show up on the scan don't always turn out to be cancer.  So, it's possible he won't need the biopsy, if nothing lights up on the PET scan.  But if anything lights up, then he'll need the biopsy to determine whether or not it's cancer.  Does that make sense?

After a needle biopsy it might not be a good idea to fly the same day, but if there aren't any complications it's probably ok to fly in a couple of days.  However,  pneumothorax (collapsed lung) is a common complication of a lung needle biopsy, and if you have a collapsed lung, you definitely can't fly until it's completely healed.  The doctor should explain this to you.

I hope your husband has good scan results.  Take care, and keep us posted.

[MaryB806]

Thank you for responding ipnotica..yes, that makes sense.  

[belle123916]

Just how common is collapsed lung with needle biopsy?  husband 47 has two nodules 10mm and 11mm from pet where suv is 2.1 and under 2.  other nodules show no uptake. no other sypmtoms and never smoked.  he did have a collapsed lung as a teenager (opposite lung) and said the tube procedure in the emergency room was traumatic and never wants to repeat it - hence his deep reluctance to have the biopsy done, but there really seems to be no alternative - we have to know what we are dealing with.  Pet results say malignancy not likely, but cannot be excluded.  The stress is unbelievable!  Any info or thoughts very much appreciated.

[ipnotica]

The collapsed lung your husband had as a teenager must have been serious to require a chest tube.  No wonder he doesn't want to repeat it.  

Even though it's a fairly common complication, they usually aren't as serious as the one your husband had.   About 25% - 50% of patients having lung biopsies will develop a small pneumothorax, and they will usually resolve on their own without treatment. Only a small percentage of patients will develop a pneumothorax serious enough to require hospitalization and placement of a chest tube for treatment.

I hope your husband has good results, and no complications

[MaryB806]

How often does it happen that not enough tissue was retrieved from a needle biopsy?  The procedure was done last Tuesday and we just found out yesterday that my husband has to do this all over again!

[ipnotica]

I'm sorry to hear that.  That only happens in about 10% of patients.  Are they going to use the same procedure for the next biopsy, or are they going to do something different?

[MaryB806]

As far as we know it's the same procedure, fine needle biopsy.  Both doctors, our family doctor and the pulmonoligist went on vacation.  It was the lab that called the house and rescheduled with intervention radiology!!! It's just so frustrating not being able to speak to a doctor. The doctor covering for my husband's pulmonologist did not return calls.  We don't even have results of the PET scan which happened over a week ago.  The nurse at the pulmonologist felt bad and told us (she probably was not suppose to) that although she's not an expert, the Pet scan looked "good" to her.  Where is the sense of urgency here. Is there any?

[MaryB806]

Update....We finally got a report from the doctor covering.  The PET scan showed activity in the same area where the mass was found on the CT scan.  The good news is that the biopsy was negative....all three samples!!!! Thank God!
However...we still don't have a diagnosis....hopefully we will tomorrow when the pulmonologist returns.  

[ipnotica]

Congratulations ~ that is good news!

I hope the pulmonologist has a diagnosis for you tomorrow.   When the doctors thought my father-in-law might have lung cancer, it turned out to be valley fever.  Do you know if your husband's doctor has checked for that?

[MaryB806]

Hi ...an update on my husband....we traveled to Italy and the day after we returned he had another CT scan. There was a little improvement, but not much according to the pulmonologist.  In order to accurately diagnose his problem he wants my husband to have a surgical lung biopsy.  He said this could be a number of lung diseases but won't speculate.  I think he still suspects cancer but won't say.  Thoughts?  

[belle123916]

Hi Mary,
Glad you posted an update - i have been wondering how you have been doing.  It sounds like we are very much in the same boat.  Pet was low, but dr. now wants to refer us to surgeon to consult about surgery.  They said no good can come from the nodules being there and they dont want to do the needle biopsy first - just remove and see what we are dealing with.  It was quite a shock - we are consulting with a few university hospitals and will then make a decision, but surgery - even VATS - sounds so invasive and a long recovery time - so stressful!  Dont like the idea of him going through this surgery when he is so healthy, but also dont like the idea of the nodules sitting there waiting to cause problems - the prognosis for lung cancer is just too ominous.  He has another CT this morning to look for any changes in size.  Anyway, just wanted to wish you both the best - i hope you get the answers you are looking for.  Glad you got to visit Italy!!

[MaryB806]

I wish you the best as well Belle....Keep us informed...as will I.
Happy Thanksgiving!

[MaryB806]

My husband decided on seeking a second opinion and we're happy he did.  The new doctor was excellent and gave us a much better explanation as to what was happening. He spent 2 hours with us! My husband is scheduled for a bronchoscopy on friday and if that fails to bring a diagnosis a surgical biopsy will be performed asap.
Belle, what's happening with your husband?
I will update next week.  

[ipnotica]

I'm so glad he got a second opinion, and that you're both happier with the new doctor.  I had written previously, suggesting he seek a second opinion, but I can see now that my message didn't go through.

Please keep us updated, and good luck!

[belle123916]

Hello!
We had an appt. with the surgeon yesterday, liked him very much.  There has been no change in the nodules since the last ct scan.  The nodules are close to each other and on the periphery of the lung, he said they are very accessible with the VATS and suggested they come out along with a slightly enlarged lymph node in the area.  He feels worst case scenario is a carcinoid, but even if it is, it has not involved any other area.  Another option is to watch it, but with the location,husbands young age (47) and good health, if it were him, he would just get it out and off our minds. He said the whole procedure will be done within an hour.   So we are going to wait until after xmas and then make some arrangements - thanks for checking up on us - it has really helped to have this thread with both of you!

[MaryB806]

The bronchoscopy did not give us a diagnosis, even though the doctor was able to collect a good amount of tissue to biopsy. The pulmonologist was able to get us an appointment with a thorasic surgeon right away.  Both these doctors are very confused about this.  They both say that after all the needle biopsies and a bronchoscopy there should be a diagnosis of some kind. He's going for another ct scan today...if no change pre op work next week and surgery the first week in January. The surgeon is concerned that after he removes the mass and sends it to pathology, they may tell him it wasn't malignant. At that point it's too late because the location of the mass will force him to take at least part of the lobe.  If it is malignant, the whole lobe will be removed. However, we just don't know and with a positive PET we can't fool around.  So, we move forward.  My husband and the doctors are concerned that this will compromise his running but feel that he is so healthy otherwise he will recover and still be able to stay active. At this point, we both agree that he needs to get this thing out of his body.

[belle123916]

So sorry to hear the test are inconclusive - so frustrating.  The stress and anticipation involved - and then to not get any answers.  I guess we are still headed on the same path, although my husbands sound a bit more accessible.  But we have the same feeling - whatever this is needs to come out because of the positive PET and potential of cancer - that is just a risk we are not willing to take.  I hope things go well for you both, you are in my prayers - please let me know how things are going - i check often to see any updates.  All the best. stay strong.

[MaryB806]

Just as we were preparing for surgery in the new year the doctor informed my husband that one of the labs (from the bronchoscopy) showed a rare bacteria called nocardia. Last week he began to take a very high dose of bactrim. His symptoms, the coughing and hemoptysis have stopped. Another ct scan will be done in about a month to see if there is any improvement in the mass. If so, he will continue with the bactrim. The risk is that sometimes, an infection like this can surround cancer. The medical team feel he should pursue this route first since the mass has not grown any since it was discovered. All we can do is hope and mostly pray.
I pray for all going through these terrifying experiences. Peace and love to you for Christmas and the new year!    

[ipnotica]

I'm so glad he finally got a diagnosis.  I had a feeling it might be something like that and not cancer.  

Nocardiosis is very similar to what I told you that my father in law was finally diagnosed with when they thought he had lung cancer.  Coccidioidomycosis (valley fever) and Nocardiosis have similar symptoms, they're both caused by organisms that are found in soil, and they are contracted by inhaling the contaminated dust.  

Since your husband is athletic and outdoors a lot running and biking, he probably picked it up one day while out on a run.  He will probably have to take the medicine for several months, but now that he has the right diagnosis, he should make a full recovery.

Take care, and Merry Christmas!

[MaryB806]

High doses of bactrim have reduced the mass by 20%!! The ID doctor never expected this kind of improvement so soon. Hopefully, since all his symptoms have disappeared, this is the whole problem and not covering up an underlying condition. Time will tell, probably months.

Belle...how are you doing?  Did your husband have the surgery? Hope all went well and he is recovering successfully. Let us know if you are able to.

[belle123916]

Hi Mary!  So happy for you both!  Husband is having his VATs this Friday.  Just very anxious to get it overwith - this has been going on since July, but at the same time nervous.  We are hoping the recovery will be quick and this will be the end of it.  Thanks for checking on us - and hope your husband continues his progress!  You should go back to Italy to celebrate!

[belle123916]

Hi Mary!  So happy for you both!  Husband is having his VATs this Friday.  Just very anxious to get it overwith - this has been going on since July, but at the same time nervous.  We are hoping the recovery will be quick and this will be the end of it.  Thanks for checking on us - and hope your husband continues his progress!  You should go back to Italy to celebrate!

[belle123916]

sorry 'bout that!

[ipnotica]

Mary, that's wonderful news!

Belle, let us know how your husband's surgery goes.

Wishing you both all the best!

[belle123916]

Update:  Husband had VATs today.  Went very smooth - 1 hour start to finish. He feels so good they may release him tomorrow or next day.  Nodules were removed, no sign of cancer.  Appears to be a fungus, being sent out but will take a few weeks to pinoint exactly what it is.  So glad this is over!  Thanks for keeping this thread going, it has been so supportive!  

[ipnotica]

I'm so glad to hear that your husband is doing so well and they didn't find any cancer!  You both must be so relieved.  It sounds like he may have the same thing Mary's husband has.   Keep us posted on his progress.  

[MaryB806]

Belle! Sorry I didn't see this before today.
Wonderful news for you both!  Believe me I know how you are feeling right now!
Nocardia takes 6 days to 2 weeks to confirm although it would be really weird if your husband has the same thing as mine.  Let us know !!  

[MaryB806]

Glad this thread is still in the system!  I thought I would give a final update.
My husband is doing great and the nocardia is completely gone after months on antibiotics!! He just finished last week taking the meds and the doctors told him there is no reason to return, unless he starts exhibiting symptoms. Scar tissue remains and they will keep an eye on that with periodic Ct scans.  
Thanks for the support. This is a great site.
I wonder if Belle still visits here.  How is your husband doing?

[ipnotica]

That's wonderful news!   Thanks for the update.  I hope Belle's husband is doing as well, too.

Wishing you both continued good health!

[MaryB806]

Thanks ipnotica...especially for your support during the scary time.

[belle123916]

OK, this is just TOOO wierd!  I never come on this forum anymore, and for some reason clicked on it to see if there was any word about Mary's husband!  So glad things are going so well for you!  We are doing great - the fungus was dead, didnt grow, and was never identified other than a strain of yeast - most likely cryptococcus, but didnt require anything further after surgery after a followup cat.  I wish all of you the best and thank you for supporting us - you are right, it was a very scary, stressful time. xoxoxo

[Kathy007]

My husband, 53,  has a ping pong size lung mass and is awaiting a CT scan.  It was found with current pnemonia (pneumonia).  He  now has had pnemonia (pneumonia) several times.  I'm wondering why they didn't scan or biopsy this mass that showed up with pnemonia (pneumonia) awhile back and he never told me about that.  It is nerve wracking to wait so I am glad I read this sight.  I'm wondering what was prescribed for Belle's husband's lung fungus.  My husband's mother and family were chain smokers, so he was exposed to lots of second hand smoke but he does not smoke.  

[MaryB806]

Hi Kathy,
I was surprised to see this thread come up again. I know what you and your husband are going through. I'm wondering why your husband's mass has not been biopsied. Have they done a bronchoscopy.? This is how my husband's nocardia (a bacterial infection) was diagnosed. The pulmonologist sent specimens to  labs that tested for all kinds of things and this rare infection finally tested positive. My husband had several needle biopsies which all tested negative for cancer. Still, the docs thought it was. Surgery was scheduled but this diagnosis came back in time. He was on high doses of bactrim for 6 months and is doing fine now. Good luck, keep us posted. This site is a great place to find people going through the same thing that you are.
Mary