Hot spots on follow up PET scan

Carly62
Carly62 Member Posts: 1
in Head and Neck Cancer #1
My husband has been fighting cancer since January. Tumor on base of tongue and cancer spread to lymph nodes on both sides. After concurrent chemo/radiation treatments ending this past March, he had the follow up PET scan last Thursday. We were called into office for Friday and told that the cancer in his tongue and lymph nodes was gone...however there were now 5 spots in his lungs.
They said the cancer had spread and were not going to do a biopsy - that the spots could only mean one thing - cancer. We are going for a second opinion to Dana Farber next week.
A coworker told my husband that a friend of hers had the same thing happen - but that a biopsy showed the spots were not cancer, just 'hot spots' left over from treatment. Has anyone else ever heard of this? Hoping this is the case, as my husband is still recovering from the treatment, and I am not sure he is strong enough to go through another treatment this soon.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    I have four lung spots, 1 thyroid spot, and a lung granuloma
    Something is not right with your description or they are leaving out information or you are leaving out information. There are a dozen different reasons for lung spots. Living in the Midwest is a common one from water bacteria. My spots have remained unchanged for the last two years. My oncologist says he is not concerned, My ENT says she is not concerned. I fail to understand how they can conclusively tell you the spots are cancer. It doesn't grow that fast. How big are the spots???? Ask for a copy of the CT/PET report and read the radiologist summary portion. At the very least a CT/PET should be done in 4 months and those results compared to your first result. If you took a bus load of people and gave them a CT scan you will find lung spots, they are common. The point is that no one has ever looked for them before. Yes it can be cancer, but it can be caused by a kind of bird dropping bacteria also. I know you are scared as I have been but it isn't that clear cut. Any honest oncologist will tell you they know very little when it comes to cancer predictions. A second opinion is a great and prudent idea. Biopsy can be done through a procedure known as VATS. Video assisted thoracic surgery. Something isn't clicking for me????? For comparison I was BOT, stage 4, rads,chemo, neck disection. Mine had spread to the right cervical node.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #3
    Welcome Carly
    Hi Carly and welcome to the site. Sorry you have to be here.

    A 2nd opinion is a great idea. I had a PET/CT scan 6 months after chemo/rads treatment for base of tongue cancer. The PET/CT showed 'hot spots', though this was in the same place as the original tumor. 1st diagnosis was residual cancer. 2nd opinion disagreed. A follow up MRI was clean. A subsequent PET/CT several months later still showed the hot spots, though they are getting smaller, which is always a good thing.

    They should do a biopsy, an MRI or something to confirm the diagnosis. Good luck with this. Cheers.

    Jimbo
  • mwellsg
    mwellsg Member Posts: 66
    #4
    Me 2
    I am in the same exact spot. Had my 90 day post treatment PET CT yesterday and got the same report. All head and neck cancer gone - I was also BOT with metastasis to both side neck lymph nodes. But, they found " warm" spots in my lungs.

    Docs say it's is either inflammation, infection or metastatic cancer. They are leaning toward inflammation right now because I have a lot of swelling and puffiness still in my neck from treatment. They say this can promote food and saliva getting into your lungs causing inflammation. Occasional coughing is a good sign this is happening and I definitely have that, especially when I eat.

    I have a follow up CT in 60 days to see if my lungs have changed. If not, then they will see if a biopsy is in order.

    You either don't know something about your husband's condition or the doc you deal with is uninformed.

    Keep going.
  • rozaroo
    rozaroo Member Posts: 665
    #5
    mwellsg said:

    Me 2
    I am in the same exact spot. Had my 90 day post treatment PET CT yesterday and got the same report. All head and neck cancer gone - I was also BOT with metastasis to both side neck lymph nodes. But, they found " warm" spots in my lungs.

    Docs say it's is either inflammation, infection or metastatic cancer. They are leaning toward inflammation right now because I have a lot of swelling and puffiness still in my neck from treatment. They say this can promote food and saliva getting into your lungs causing inflammation. Occasional coughing is a good sign this is happening and I definitely have that, especially when I eat.

    I have a follow up CT in 60 days to see if my lungs have changed. If not, then they will see if a biopsy is in order.

    You either don't know something about your husband's condition or the doc you deal with is uninformed.

    Keep going.

    Same
    I went through the same thing! Went for a Pet/Ct scan at 11 month's post treatment & showed three hot spot's.Scared the crap out of me. The spot's on my lung's were so small & oncologist had me wait three month's to see if they grew & then did a follow up ct scan. Watch & wait was the toughest thing I ever went through in my life. The ct scan showed nothing. I am sorry you have to go through this.I know you have to follow a strict diet before your scan & I followed the instruction's to the letter. However,I did have quite a bit of congestion after a virus a few week's prior to the scan. Sorry you are experiencing this & I wish you my best. Please keep us posted as to how you are doing.
    God Bless
    Roz
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    I AGREE WITH THE GROUP
    The group said it best. i too had a spot on my right upper lobe at my 90 day scan. The radiologist at the time said it most resembled scar tissue most likely from my IMRT to my neck. i returned 6 months later for a follow up scan and the spot was gone. it was then determined that it was inflamation from an unknown source.

    scans at 90 days are not very reliable as you will most likely still be hot from treatment.

    A second opinion and a biopsy should be done.

    I know it is hard not to worry, but follow this thread for another week and you will see many more simillar stories such as ours.

    I am betting it will all be good.

    You cannot do anyhting about it today, so go out and have a great weekend, and try to put this in your "monday box" and have an awesome Saturday and Sunday.

    Best!!

    Mike
  • Jill999
    Jill999 Member Posts: 20 Member
    #7

    I just had my first infusion for metastatic in lungs 🫁 having chemo prembro and cdk148 faze 2 study will let you all know how it goes have two pdl test of 0 one of 10 my doc says the tow he has in study now are doing remarkable thinks it will help low or no pdl a lot it helps immunotherapy enter the cancer cells and faze 1 it worker good

  • Jill999
    Jill999 Member Posts: 20 Member
    #8

    I hav matistas in lungs with pdl0 just had first treatment with chemo prembro and clk148 it seems to help immunotherapy work by letting immunotherapy enter the cancer

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