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We have friend who is female, 70, had breast cancer stage 0 caught early--no lump nodes involved--
Excised all tumor -- edges clear but she elected to have double mastectomy...her mom and her aunt both died from breast cancer though her DNA test was negative for that gene....
Now after about 13 yrs, she has been dealing with some lung problems--
Caught flu early November and developed pneumonia
Her GP Doctor (we feel) was not aggressive in treating it--it lingered--had several X-rays which showed she had residual pneumonia until after Christmas--
Never sent her to pulmonologist
She had X-rays that followed the pneumonia--
One of them showed it was clear but she had a "suspicious" node on her pancreas
That required CT scan and then maybe biopsy or an internal visual w/camera which ruled out cancer--but said to watch it---
But she had another CT scan to see if that node was larger--it was gone but the radiologist reading the scan said she had a suspicious mark on lung that was larger
Now as far as I remember no one had mentioned this "suspicious" mark on her lung before--just the pancreas issue
Her GP sent her to oncologist
He said the radiologist's written report was so poorly done he didn't know if the reason radiologist was concerned was the pancreas problem or something on the lung
Her daughter had to go to the radiology clinic and retrieve all the past films/scans and bring to doctor's office because the radiology clinic had not sent those/or the GP's office had not requested them to be sent
The oncologist had radiologist w/his practice read the CT scan to see what the issue was--
Why the oncologist didn't contact the radiologist directly I have no idea--except maybe he thought he would be a worthless expert
The radiologist said it was on lung and should have biopsy
Radiologist did biopsy and got sample after 3 tries--spot not that large and in middle lobe--guess hard to get to
Sample went to pathology and came back negative for cancer--
Sounds like should be good news, right...
Her oncologist said he "didn't trust" the biopsy info because the spot was "growing" and he didn't understand why it would show "hot" on the PET scan if it wasn't cancer...
Now I Googled PET scan and "false positives" when she told us she had a hot read on the PET scan
And there are reasons why someone would have a "hot" read or "activity" that aren't tied to cancer
The oncologist is pushing her to have this removed--
Without suggesting a second biopsy sampling or waiting to see if it grows in say 2 or 4 weeks...
We are concerned because
1--there has already been a false report of pancreatic issue
That spot or node that was so suspicious the first time they caught it was gone in this most recent CT scan--
Gone...
2--Now they are telling her something might be wrong with her lung even though a biopsy came back negative for cancer...but they want to take it out anyway--because basically it SHOULD have read as cancerous
If this sounds confusing that is likely because our friend is confused
The questions we ask her aren't necessarily the ones she asked her doctor
The location of this "spot" is in middle part of her lung--not easy to get to
If they remove it surgically it sounds like it is not a simple procedure but could involved taking out half her lung
Admittedly she is older, not athletic, so losing that much of one lung might not affect her lifestyle that much but it is still a serious procedure and because it would be permanent could compromise some aspect of her life going forward--like if she got pneumonia again--
My husband and I are concerned because her only child/daughter is hyper sensitive to illness
Her dad died about 2 yrs before her mom developed cancer and died suddenly from massive heart attack--
He had already had valve replacement before and was due to have another round since there is a shelf life with that type of surgery...
She has never gotten over that and has major fear of her mom dying...
So she wants the "spot" to come out---period
She knows intellectually the dangers of major surgery but she is more afraid that unknown threat
We are more like--get second opinion--see why the PET scan might have shown "hot" and yet biopsy was neg
Those two things don't add up to us--
As my husband said 'when a doctor says "I don't know' about something under discussion regarding test result" maybe you need a second opinion...
Anyone have experience with false positive PET scan results?
What were your choices - decisions - results???
Would a pulmonologist be someone to review all her past history since developing pneumonia and those chest X-rays and CT/PET scans?
Going to oncologist seems like asking for same POV as the one she has now...
I'd go to another oncologist. I don't think they always agree.
If that one is also concerned I wonder if another biopsy is warranted. If so, I'd be sure and ask that they send samples to 2 different labs to analyze the results. I did that when they biopsied a spot on my breast (thankfully negative).
I had a friend (nonsmoker) die of lung cancer, so if it were me, I'd err on the side of caution.
I'd go to another oncologist. I don't think they always agree.
If that one is also concerned I wonder if another biopsy is warranted. If so, I'd be sure and ask that they send samples to 2 different labs to analyze the results. I did that when they biopsied a spot on my breast (thankfully negative).
I had a friend (nonsmoker) die of lung cancer, so if it were me, I'd err on the side of caution.
I agree. A second opinion from a different oncologist may help clarify the information they already have. Sometimes "novel" eyes catch or interpret things differently or help develop a different perspective of the same information.
I'd go to another oncologist. I don't think they always agree.
If that one is also concerned I wonder if another biopsy is warranted. If so, I'd be sure and ask that they send samples to 2 different labs to analyze the results. I did that when they biopsied a spot on my breast (thankfully negative).
I had a friend (nonsmoker) die of lung cancer, so if it were me, I'd err on the side of caution.
She said she is willing to talk to the surgeon about the lung proceedure but I think it is better to get second biopsy
Sending results to two different labs is also good idea
I don't know that Medicare or her secondary insurance would cover doing that
Does anyone know what Medicare allows as far as getting a second opinion in situations like this
Where the oncologist is recommending excising that tissue when there is NO cancer reported on the biopsy?
My brother had a false positive PET scan after finishing his first Hodgkin's lymphoma treatment. His doctor's initial interpretation was likely false positive but still ordered a biopsy to be sure, and it turned out to be false alarm.
My son developed Hodgkin's Lymphoma in elementary school--very unusual for a child but his symptoms were classic to the disease--the doctors treating him--pediatrician and then an ENT when he developed problem with saliva glands--ignored all symptoms and refused to do a simple chest X-Ray...because of how dangerous that was for children
But the ENT was willing to do a fairly dangerous biopsy proceedure on his jaw where there is an important nerve nexus (could have risked facial paralysis on a 10 yr old)..
The biopsy came back showing Hodgkin's ---the doctor called us Christmas Eve---
He was a douche
I am always suspicious of any doctor's methods of diagnosis to this day
We just feel this oncologist is pushing the cancer diagnosis without the evidence--
That another biopsy should be done since this was negative
In your brother's case, I assume his doctor was an oncologist--
Do you remember who did the biopsy itself---a surgeon or a radiologist?
Our son was in very aggressive trial program for his treatment which was successful
He celebrated his 43rd bday this week.
Hope your brother had equal success
I agree. A second opinion from a different oncologist may help clarify the information they already have. Sometimes "novel" eyes catch or interpret things differently or help develop a different perspective of the same information.
Tough situation. Hope it works out OK!
I feel like the rest, get another opinion. Doctors, like the rest of all see things differently.. I know hubby's oncologist is very relaxed and pretty much has the attitude. wait and see. For us this is a good match, for others the overly concerned doctors are better. When it comes to surgery, if there is any doubt it is always best to get a second opinion.
My son developed Hodgkin's Lymphoma in elementary school--very unusual for a child but his symptoms were classic to the disease--the doctors treating him--pediatrician and then an ENT when he developed problem with saliva glands--ignored all symptoms and refused to do a simple chest X-Ray...because of how dangerous that was for children
But the ENT was willing to do a fairly dangerous biopsy proceedure on his jaw where there is an important nerve nexus (could have risked facial paralysis on a 10 yr old)..
The biopsy came back showing Hodgkin's ---the doctor called us Christmas Eve---
He was a douche
I am always suspicious of any doctor's methods of diagnosis to this day
We just feel this oncologist is pushing the cancer diagnosis without the evidence--
That another biopsy should be done since this was negative
In your brother's case, I assume his doctor was an oncologist--
Do you remember who did the biopsy itself---a surgeon or a radiologist?
Our son was in very aggressive trial program for his treatment which was successful
He celebrated his 43rd bday this week.
Hope your brother had equal success
Thank you.
If I remember correct my brother's primary physician is a hematologist and the biopsy was done by a surgeon.
My brother also received a clinical trial for his firs treatment (a slight variation of standard ABVD). He achieved remission after the treatment but the cancer came back almost three months later (I suspect it was triggered by the flu). Now he just finished a clinical trial stem cell transplant and I am hoping this time it will work.
Just a follow up
My friend would not go to a different oncologist for 2nd opinion nor to a pulmonologist
Primarily because her daughter was panicked her mom had cancer...
She had surgery to have the spot removed..taking out the entire spot for biopsy proved the FIRST biopsy was correct--it was not cancerous...it was a granularoma--
what kind wasn't specified but it likely could and should have been treated with non invasive means--and done so at an earlier date-like 3 months ago when they fist noticed it on scan
Friend had 5 days in hospital's critical care cardio/pulmonary unit--
Nice nurses but felt horrible--her surgeon came in 1 time in 5 days--had his PAs come by once or twice a day---
Very painful procedure for her...
The incision was more than laparotomy because spot was not in easy location--
Didn't have to break a rib but did have to use larger incision and had some brusing in area
She was on oxygen--had to have it or her O2 levels would drop below 90--
She didn't want to breath deeply because it hurt pretty badly
She is home but still has little appetite and is very tired...
Needs oxygen for this recuperation period and her daugher--who was pushing for the surgery- doesn't understand why her mom is better off with the oxygen assist than w/o it
During the surgery wait there were mayby a dozen of her friends waiting to know outcome
When the surgeon stuck his head in the door--nothing closer--he said no cancer
Just granularoma--
Everyone but me was like "yeah", "great", "thank God" and I was like --we already had that diagnosis in first biopsy...
Her daughter was telling someone once her mom was back in room that "well we didn't know what it was" and I said--"Yes, we did--the first biopsy was right"
and then she said "well we had to take it out because it was growing" and I said "Well, they weren't doing anything to treat it or stop it"
And she didn't like that response at all...
So who knows how much money spent to remove something that was no threat to her life but the aftermath has certainly impacted her current quality of life...
I am worried she might get pneumonia again this winter
They gave her the vaccine before she left hospital--but didn't have any flu vaccine in stock yet...
Just a follow up
My friend would not go to a different oncologist for 2nd opinion nor to a pulmonologist
Primarily because her daughter was panicked her mom had cancer...
She had surgery to have the spot removed..taking out the entire spot for biopsy proved the FIRST biopsy was correct--it was not cancerous...it was a granularoma--
what kind wasn't specified but it likely could and should have been treated with non invasive means--and done so at an earlier date-like 3 months ago when they fist noticed it on scan
Friend had 5 days in hospital's critical care cardio/pulmonary unit--
Nice nurses but felt horrible--her surgeon came in 1 time in 5 days--had his PAs come by once or twice a day---
Very painful procedure for her...
The incision was more than laparotomy because spot was not in easy location--
Didn't have to break a rib but did have to use larger incision and had some brusing in area
She was on oxygen--had to have it or her O2 levels would drop below 90--
She didn't want to breath deeply because it hurt pretty badly
She is home but still has little appetite and is very tired...
Needs oxygen for this recuperation period and her daugher--who was pushing for the surgery- doesn't understand why her mom is better off with the oxygen assist than w/o it
During the surgery wait there were mayby a dozen of her friends waiting to know outcome
When the surgeon stuck his head in the door--nothing closer--he said no cancer
Just granularoma--
Everyone but me was like "yeah", "great", "thank God" and I was like --we already had that diagnosis in first biopsy...
Her daughter was telling someone once her mom was back in room that "well we didn't know what it was" and I said--"Yes, we did--the first biopsy was right"
and then she said "well we had to take it out because it was growing" and I said "Well, they weren't doing anything to treat it or stop it"
And she didn't like that response at all...
So who knows how much money spent to remove something that was no threat to her life but the aftermath has certainly impacted her current quality of life...
I am worried she might get pneumonia again this winter
They gave her the vaccine before she left hospital--but didn't have any flu vaccine in stock yet...
It’s amazing how people only hear what they want to hear.
Just today, a friend who had heard “it’s lung cancer, probably stage 4, no problem, we’ll just cut it out” finally came to reality after a second opinion at a prominent cancer center.
Thankfully, she will get the appropriate care. Until genetic testing is concluded, we don’t know exactly what that will be. But it won’t involve “just cutting it out”.
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