Can't get definitive diagnosis - Lung Cancer Support

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Can't get definitive diagnosis

iamjdf2 profile image
12 Replies

After clean scans for 2 years, I began to feel ill in September and was diagnosed with pneumonia. I went through a short round of antibiotics and had a chest X-ray which showed a mass in the right lower lobe. I was sent to my pulmonologist who immediately did a bronchoscopy. I was then placed on a 5 week regimen of antibiotics and had another CT which shows the mass has grown. My pulmonologist believes it is cancer but can't get a specific diagnosis. I'm having another scope Monday. We know what it's not as he did a ton of biopsies etc... Anyone else ever had this problem? My first cancer was Stage 1 upper right lobe adenocarcinoma. It was removed Aug. of 2017

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iamjdf2
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12 Replies
yessirmam profile image
yessirmam

That is curious, indeed. It is the mystery that’s stressful. By all means keep slugging away. It may well be massive insult from your sickness...I hope. Having had cancer, you must always presume until proven otherwise. I can’t offer any insight, sorry. Keep us posted, god bless!

JanetteR57 profile image
JanetteR57

Have they suggested whether it could be scarring from your original surgery to remove your upper right lobe? is the 'mass' at the site of surgery? sometimes tumours can be benign and if the biopsies have been taken and they're negative, that suggests it's not. Ask whether you can have a blood test as circulating tissue cells can be tested for cancer which may be another way to reassure you or alert the clinicians to what it might be. hope you get some answers soon.

iamjdf2 profile image
iamjdf2 in reply to JanetteR57

Mass is in the right lower lobe. I'll see a surgeon after the bronchoscopy Monday.

Gatorb8 profile image
Gatorb8

Hi there! I would see a surgeon immediately. It is possible to do another lobectomy but time is not on your side. You need a biopsy to make sure it is cancer and then likely a Petscan to see if this is the only spot. Best if luck to you!

Denzie profile image
DenzieModeratorVolunteer

Have they done a PET scan to learn if it is metabolically active? Where are you being seen? It would be a good idea to get a second opinion at an NCCN designated comprehensive cancer center.

Edit to add: nccn.org/members/network.aspx

iamjdf2 profile image
iamjdf2

I'm being seen at a MD Anderson cancer center in Indianapolis. Pet scan is next after bronchoscopy. I see the Oncologist next week.

iamjdf2 profile image
iamjdf2

After 2 bronchoscopes and 3 CT's and numerous antibiotics, I have been diagnosed with fungal pneumonia. The infection has subsided but the mass hasn't changed. I've been on an anti fungal since being hospitalized on Dec. 24th. It's not cancer but after 3 opinions all the Drs. agree that if the mass doesn't go away I'll need to have the 2 right lobes that I have left taken out. I forgot to mention that after a nuclear lung scan, the blood supply to my right lung has been cut off since I had a blood clot 3 weeks after my right upper lobectomy. The left lung has been doing all the work for 2 1/2 years. Taking the anti fungal for 9 more weeks then having another CT. Fingers crossed!

Denzie profile image
DenzieModeratorVolunteer in reply to iamjdf2

That quite an experience. Very sorry that you need to go through this surgery again. Relieved for you that it’s not progression of the cancer.

anrean profile image
anrean

Grateful that it is not cancer. You certainly have been through a lot. Wondering why they want to remove the lobes if it is an infection and not cancer?

iamjdf2 profile image
iamjdf2 in reply to anrean

Because I have no blood flow to those lines the medication can't get to the target area is what I understand. I'm taking the antifungal in hopes that is somehow does get there. I'm coughing up blood and have a lot of pain. A fungal infection can spread just like a cancer.

iamjdf2 profile image
iamjdf2 in reply to iamjdf2

No blood flow to the lung not lines

anrean profile image
anrean in reply to iamjdf2

Hope all goes well. It is so difficult to have our breath taken away from us. My doc suggested telling those who have trouble understanding to breathe through a straw for 1/2 hour - it sure changes their perspective!!

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