Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

I am a little confused and really concerned. Had my PET/CT scan and MUgga last week. Was supposed to see my oncologist tomorrow (aug 9) but they rescheduled until aug 26, said doctor is out of office. A nurse from his office called me Friday and told me the results. she said there was a small spot "glowing" in my left lung that was not there the last PET scan. She told me she could not speak for doctor but that it was a small spot and since I had radiation on that side, and that was the side I had my surgery on, it was nothing to "lose any sleep" over. I am so worried. anyone else have such an experience?
I am experienxceing a little delayed reaction to test results becaues of another tragedy...I have twin grandsons born may 12, 2011. identical little boys. One passed away last weekend, found him in crib and blue. looks like SIDS but autopsy is not complete. we had his veiwing friday and funeral saturday. My call on test results came friday afternoon. sort of put iin back of my miind but today... i am really scared. i have a cough that seems to be stuck in my throat, so is it my throat or my lung?

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Hi Candlegranny,
No experience with your question but...I don't know your onc nurse. I know mine would not say something like that (i.e. nothing to worry, unless she had seen in her experience that this was the case).
I am so sorry to hear about your grandson. Such a tragedy. My thoughts and prayers are with you.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Thank you for your comforting words. It is just really scary. I am calling my oncologist office today to see if i can see my doctor any sooner than august 26.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Hi Candlegranny
I so understand how worried you feel. I had several spots on CT scan in November last year. My onc rescanned in January this year and they had gone away . The verdict was that they were inflammatory changes and my recent CT scan also confirmed the same.
Spots and nodes on the lungs are very difficult to biopsy but can often be due to things other than cancer so try not to panic yet.

So sorry to hear about your sad loss.

Hope this helps
Ellie

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Candlegranny,
So sorry to hear of the loss of your little darling grandson. Hopefully it will be as the nurse said regarding your scan and 'nothing to worry about', but its easier said than done. Be good to yourself, you will get thru this and things will work out. Best wishes.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

So sorry to hear about your grandson, so tragic.
I don't think your oncologist would wait so long if it was something serious. I have a fibroid on my lung apparently due to radiation and no one seems concerned about even though it has affected my breathing - get out of breath going up hills. Hopefully it's something that will go away - I'm told mine won't.
hugs and love
Sarah

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Candlegranny, please accept my sincere condolences on the loss of your precious baby grandson.

Is there another oncologist in the practice you could see - I really hate it when the nurses or secretaries call with information like this, only to tell you that your onc. is unavailable to see you for a few weeks.

all the best
caya

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

I am so sorry to hear about your sweet little grandson. It is so sad when a child passes away. Hugs to you and your family.
If I were in your situation I would try to see another doctor in the same office as soon as possible if my doctor is not available or get a second opinion somewhere else. We have to be as proactive as we possibly can be to stay healthy.
It is a doctor's responsibility to explain test results to a patient as soon as possible and discuss options to resolve any potential problems after tests.
The nurse should not have made the comment she made. Maybe she would not loose any sleep over the results, because it is not her body that is involved, but she has no business making that kind of comment to a patient. it is highly unprofessional.
Take good care of yourself.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Sarah, she did mention something about radiation causing a little inflammation and i do have shortness of breath but thought maybe i was gaining weight. But she said this spot was showing metabolic activity. Is that the PET more than CT scan? I thought if it glows.... it is cancerous activitie. This scan was scary to me because my last herceptin treatment was in May, sort of comforted when I was getting it every 3 weeks. I was focused on my little Layten Joshua all weekend and now he is laid to rest...I have time to ponder about this. I think I need to jsut try to let go of worry.. worry will not change the results just dont want cancer to grow. it did that to me at the beginning.... i.e. clean mammogram and 3 months later stage 3C breast cancer. I am going to find someting positive to focus on for the next month. I took up a new part time business.. Selling Scentsy products so I will try to get that off the ground ....still scary but it i keep busy maybe no time to think so hard. I feel fine, not sick etc... but most of us were not feeling bad at our time of diagnosis. keep my family.. especailly my daughter in your prayers. ThankYou all for the wonderful support we know we can find on this board.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Candlegranny, I'm so very sorry for the loss of your little Grandson, its heartbreaking and lost a baby girl after one week so know how this feels. (((hugs)))

Regarding this spot my friend had a similar experience and they simply watched it for eighteen months with regular scans, there was no change and the onc is certain it's a benign spot which he said many people have, or a result of past scarring, hope yours will be the same and I'm sorry you're stressed about this at this sad time.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Adding my condolences. And hopefully adding some peace of mind..... It is a long story which I have recounted here before so I will not go into the details. Except to say that I had scans that lit up and the bottom line was that it was inflammation from some old pneumonia which I had no symptoms of. (I had to endure a surgical biopsy, misdiagnosis of lung cancer and removal of a lobe before the truth was discovered!) Later a pulmonologist told me they should have first given me antibiotics to see if it cleared. Start with the most likely thing. In my case, everyone rushed to judgement too soon.
Nevertheless, the nurse should not be passing out platitudes. And it would be good if you can see someone sooner. Even have a pulmonologist look at the results.
Keep the faith
ETA: the reason for my scans was chronic cough.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

Prayers for your family on the loss of your grandson. What a tragedy! Peace and hugs, we are with you!

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

thank you all for comments. Bonnie.. I think you are awesome!!~

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

I'm so sorry to hear of the loss of your little Leyton Joshua and you, your daughter and your family are very much in my thoughts.
I have not had a PET scan but fibrotic changes are consistently reported on my CT and they have not progressed. I don't know how they would look on PET but I understand that the metabolic activity that shows up is not always a cause for alarm. It would be good if you could get an earlier doctors appointment so you could at least feel you were addressing the problem. But if that isn't possible it seems you have some good things to focus on to help you through this very difficult time. Good on you,
Trish

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

I am so sorry for your loss. I will keep you and your family in prayer.

I had a spot on my lung in April, on a chest x-ray and ct scan. It was either walking pneumonia or radiation pneumonitis, but it went away after a few weeks. I also had a consistent cough which is why I had the initial chest x-ray.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

PET scans light up in areas where there is increased glucose uptake--that can be infection or inflammation or cancer. Radiation induced damage to normal cells as well as cancerous cells causes inflammation.

Perhaps your doctor will order a dedicated CT (resolution much better than the CT they do in conjunction with the PET from what I understand) to better determine the size of the lesion. Small lesions in the lung are common and are rarely cancer from what I have read and been told.

Hope some of this helped!

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

First of all, so sorry to hear about your little grandson....you and your family are in my thoughts and prayers....I cannot imagine a loss such as this....

As far as the spot goes, I agree that inflammation, infection etc will cause it to light up on a pet....and especially since you have a cough....I would hope you can get a CT to calm your fears....very insensitive for a nurse to call then tell you that the Dr is away for a couple weeks.....they do not know what it is like to be in our shoes, do they? Her lack of urgency leads me to believe that it is nothing to worry about....and after your recent loss, this seems so unfair for the wait to see the Dr. Is there anyone else you could see to calm your fears?Keeping you in my thoughts and prayers.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

So sorry about your grandson.

Hubby has just got a new prescription of a mild antidepressant from our family doctor to treat his anxiety. It's been too hot for him to 'walk 30 minutes a day' as is prescribed by his cardiologist. Walking has always helped him to relax. (Exercise increases the release of endorphine - the so-called 'happy hormone'.)

He's also learned to take deep breaths whenever he feels the 'attack'. It's not easy to live with a wife who's chronically ill... I often wondered how he's going to cope had he been diagnosed with cancer. Evidently it's a personality thing - some people worry a lot, others don't.

Sending you good vibes...

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

I am speechless. I am so sorry for the loss of your grandson and I am sorry for what you are going through. My heart just breaks for your family. Sending you lots of positive vibes and big hugs.

Re: Spot on lungs found on PET - nurse says dont lose any sleep!!!
 

My heart goes out to you for the loss of your grandson. It must be very hard to take good care of yourself at a time like this. I hope you get the help and support you need.

I also think the nurse spoke out of turn. However, I will tell you my story about PET scans since it may be relevant. I have had erratic blood tests, so I have had two PET scans this year. One was 11 months ago and showed a "hot spot" in the lobal area where I had had radiation, with no corresponding mass. Last month, again due to blood test results, I had another PET scan. This one was entirely clear. It supports the idea that the metabolic activity on the PET scan last year was a result of radiation tx.
I am hoping for good test result for you too. Let us know.