Husband had his first Pet Scan?

Frances_S
Frances_S Member Posts: 54
edited March 2018 in Head and Neck Cancer #1

Hi Everyone,

Although his results were good for the tumor which there is only a small remnant with no FDG uptake. We were told about two small growths on the lower right and left poles of his thyroid by the medical oncologist. When I questioned if they did a comparison to his previous scans, I was told no. Finding this to be odd I asked for a copy of the scan and read it while my husband waited to see the radiation oncologist. It clearly noted the changes from the “previous scans” where the uptake of the radioactive material was at 5.6 and 7.0 prior to the new scan which shows 7.9 and 9.0.

When we went in to talk to the radiation oncologist, she had an explanation for why this wasn’t addressed until now. She said, they had to focus on the cancer which was the real problem. Both doctors want him to go for an ultrasound and possible biopsy depending on the ultrasound results. Well in my book they would be looking for cancer!

This is totally unacceptable to me. This thyroid problem was there from the beginning and not one doctor out of the 4 medical opinions addressed it. Then to top it off they scheduled the appointment 3 ½ weeks out for just the ultra sound.

I stayed as upbeat as possible during the appointments because I did not want to upset my husband because I could already see the look of concerned on his face….I decided to handle this the next morning when he went to his brothers house. I called MSK and made it clear that 3 ½ weeks to wait for an ultrasound was just unacceptable, knowing we may have to schedule a biopsy. I stressed that this should have been biopsied when they did an ultrasound and biopsy on the opposite side of his neck 3 days before the radiation began for 2 lymph nodes that showed 2.0 and 2.9 FDG uptake.

I did get an appointment for next week March 28th for the ulta sound, followed by a biopsy if nessary.

Am I over reacting?

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    We want acceptable.

    Frances_S,

    Good Saturday to you.

    I can understand your being upset.  Let me see if I can follow you.  The previously noted uptake was at the Thyroid, if that is so I wonder why it was not in the field of radiation treatment.  Worse yet, 4 doctors missed the importance of the possibility Thyroid was compromised (possible cancer)?

    At this time it is easier for me to take  the high road than you (you have skin in the game) and say “maybe they were correct and the cancer is gone (or going gone).  You are very wise to stay proactive, oncologists treat many and may not dig in to the treatment every time, as they should.

    Best of luck moving forward.

    Matt

     

  • Frances_S
    Frances_S Member Posts: 54
    #3
    CivilMatt said:

    We want acceptable.

    Frances_S,

    Good Saturday to you.

    I can understand your being upset.  Let me see if I can follow you.  The previously noted uptake was at the Thyroid, if that is so I wonder why it was not in the field of radiation treatment.  Worse yet, 4 doctors missed the importance of the possibility Thyroid was compromised (possible cancer)?

    At this time it is easier for me to take  the high road than you (you have skin in the game) and say “maybe they were correct and the cancer is gone (or going gone).  You are very wise to stay proactive, oncologists treat many and may not dig in to the treatment every time, as they should.

    Best of luck moving forward.

    Matt

     

    Thank you, Matt

    Thank you, Matt

    Yes, I would have thought that both sides of the thyroid would be in the field of radiation. I don’t know much about the Thyroid, but what I do know is that this problem was called out on each of the three CT/ PET scans and the MRI and was somehow overlooked. It was noted under impressions which is the conclusion of the Scan. I would have thought the thyroid would have been in the radiation field too.

    Honestly, I don’t know what to think. I will just have to get my list of questions together.

  • pmsakom
    pmsakom Member Posts: 25
    #4
    Very similar situation

    Hi Frances,

    We had a very similar situation.  After the first PET (pretreatment), I saw on the report mention of uptake in the thyroid but nothing was mentioned when the doctor called to go over the results.  At the next appointment I asked what it was and got a very similar response.  They need to focus on the throat cancer (my husband's tumor was the size of a golf ball and they couldn't operate) and that there is a possibility that the radiation for the base of tongue cancer will address the issue  with the thyroid.  Although I was alarmed that we would need to deal with a second cancer after treatment for the BOT cancer, I trusted their judgement.

     

    Fast forward to post treatment.  Went in to see the ENT doctor at about 2 1/2 months post and he brought up the thyroid.  Ordered an ultrasound and biopsy.  Results came back benign.  I am a bit curious as to why they don't just remove the thyroid since it is calcified but that is something to look into another day. 

     

    I think they just have to prioritize what they are treating.  Maybe treatment for the thyroid would be counter productive to the throat cancer treatment?  Maybe, as our doctor had mentioned, the radiation sometimes takes care of it?  I imagine that if I had not read that first PET (pretreatment) we would have been in your exact same shoes.  Not knowing there was another issue to worry about after the BOT cancer.  Honestly, it might have been better - for me anyway.  I worried the whole time that we would be going through another round of cancer treatment after his recovery from the HPV SCC treatment.  I cried many times just over that thought alone. 

     

    I see your husband has his US today.  Best of luck!  Positive thoughts being sent your way.

     

    Melissa

     

  • Frances_S
    Frances_S Member Posts: 54
    #5
    pmsakom said:

    Very similar situation

    Hi Frances,

    We had a very similar situation.  After the first PET (pretreatment), I saw on the report mention of uptake in the thyroid but nothing was mentioned when the doctor called to go over the results.  At the next appointment I asked what it was and got a very similar response.  They need to focus on the throat cancer (my husband's tumor was the size of a golf ball and they couldn't operate) and that there is a possibility that the radiation for the base of tongue cancer will address the issue  with the thyroid.  Although I was alarmed that we would need to deal with a second cancer after treatment for the BOT cancer, I trusted their judgement.

     

    Fast forward to post treatment.  Went in to see the ENT doctor at about 2 1/2 months post and he brought up the thyroid.  Ordered an ultrasound and biopsy.  Results came back benign.  I am a bit curious as to why they don't just remove the thyroid since it is calcified but that is something to look into another day. 

     

    I think they just have to prioritize what they are treating.  Maybe treatment for the thyroid would be counter productive to the throat cancer treatment?  Maybe, as our doctor had mentioned, the radiation sometimes takes care of it?  I imagine that if I had not read that first PET (pretreatment) we would have been in your exact same shoes.  Not knowing there was another issue to worry about after the BOT cancer.  Honestly, it might have been better - for me anyway.  I worried the whole time that we would be going through another round of cancer treatment after his recovery from the HPV SCC treatment.  I cried many times just over that thought alone. 

     

    I see your husband has his US today.  Best of luck!  Positive thoughts being sent your way.

     

    Melissa

     

    Hi Melissa,

    Thank you for your response. My husbands situation was very similar to your husband. His tumor was inoperable, because of it’s size and location in his neck. He had no known primary so they were very aggressive with the radiation treatment field.

    I don’t know how I missed this when I read his reports. It’s just so upsetting that this was there all along and not one doctor ever brought this to our attention.

    My husband had his ultrasound on March 28th, they did two biopsies. Now all we can do is wait, hopefully by Monday we will have the results. I keep trying to reassure myself these thyroid nodules had to be in the field of the radiation treatment which was so broad. His tumor had to be treated from every angle. I just don’t understand why they didn’t bring this to our attention sooner.

    I hope, and I pray this will turn out to be nothing. I don’t know how much more we can take. I will keep you posted. Thanks again.

  • donfoo
    donfoo Member Posts: 1,773 Member
    edited April 2018 #6
    All so scary

    It is perfectly normal to be wigged out the whole experience of facing cancer. Everyone has a right to act and feel as they do. If he is being treated at MSKCC, as in Memorial Sloan Kettering, you should know he is being cared for by the best doctors on planet earth. And also remind yourself you are likely not as experienced as them so try to trust that they are the experts. That said, when things do make sense, be the first one to speak out about it as many times the lesser and more practical things do get less oversight. Your nurses and other technicians often have more daily knowledge to help out.

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