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diagnosed stage 4 - 12 months later no evidence of cancer. Whats going on?

merob
Posts: 4
Joined: Oct 2012

My 86 y/o mother was referred to a pulmonary lesion clinic after a CT scan showed a "quarter size" mass in her right apical lung. 6 months later CT showed mass had doubled in size and was referered to oncologist who ordered a pet scan and diagnosed her with stage 4 lung cancer with mets to the adrenals and mediastinal and hylar. Non operable and told she would probably not live to her next birthday. He said he took the case to tumor board and was 99.9% sure of the diagnosis. We did not have a biopsy because this would require a big surgery for her age. She began hospice care with no radiation or chemo. Now one year later she fell and broke her hip. While in the hospital after surgery her blood pressure was sky high so they did a CT with contrast to see if maybe the adrenals were involved with new tumor growth or something and the CT showed NO EVIDENCE of lung or adrenal or any other sites of masses or mets! The doctors at the hospital could not offer us any explanations so we went back to the oncologist yesterday. He said based on what he saw from the CT scan there was now just calcification noted in the apical lung and no evidence of cancer. We are very happy that she does not have cancer, but are wondering about accuracy of her diagnosis for which she could have gone through chemo and radiation which as we all know is very difficult at any age. What is going on here? Is she in the clear now? This is very confusing.

PBJ Austin
Posts: 346
Joined: Mar 2009

I was misdiagnosed with lung cancer before they did a biopsy and I have a feeling the same happened to your mom.

About 3 years ago I went to the ER with severe pain while breathing. They ruled out a heart attack then did a CT with contrast. They found a huge mass in my right lung measuring about 7.3cm at the widest point, which is even larger than what your mother had. The ER doc told me with 90% certainty that I had lung cancer. He said it would be very unusual for something so large not to be cancer. I felt like I had just been gutted, and I'm sure most people on this board can relate.

To make a long story short, over the next couple of months I had a needle biopsy, a bronchoscopy, an EBUS and a PET scan. Every biopsy came back inconclusive. They did not find cancer but they would not rule it out because they didn't know what the heck was going on.

At some point I became very ill and developed pneumonia. The doc told me I needed an upper right lobectomy ASAP and I agreed as I knew that thing in my lung was poisoning me. I had the surgery and once the mass was properly tested they determined it was just a really bad lung infection that got out of control and destroyed my upper right lobe.

Regarding the PET scan, those have been known to give false positives. In my PET scan the lung did light up but but that's because I had abnormal growth in the lung. My growth was not cancer but the PET scan reflected that it was.

Once again I can only speculate on what happened to your mom, but I think there is a distinct possiblity she had an infection which went away on it's own. While I do believe in miracles, I do not believe that cancer would have gone away on it's own, especially if it's already stage 4.

I thank God Almighty that she did not go through chemo and radiation for nothing.

All the best to you and your mom.

merob
Posts: 4
Joined: Oct 2012

PBJAustin-I suspect the same happened in my moms case. Scary stuff considering the faith we put in the diagnostic tools that are available. Thanks for sharing your story

dennycee
Posts: 667
Joined: Mar 2011

Hi merob, so glad for you both that things turned out the way they did. What I don't understand is why they didn't do a PET scan, bone scan and MRI of the brain instead of basing the diagnosis on CT alone. How horrible to make her think she had this based on the CTs alone.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

And a story I needed to hear. I am a refugee from Head & Neck Cancer. A PET showed stuff in my lungs. But I am delaying a biopsy because it would not lead to any immediate treatments. (My doctors are not recommending a biopsy at this time; they left the decision up to me.) So I'm glad to hear cases where the stuff in the lungs disappeared. Actually, if the stuff in my lungs disappears, I really won't care about the reason. Rick.

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