PET Scan results

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Yesterday we got the results from my husband's PET scan (10 weeks post treatment).  It was positive in that they said the cancer (larynx and lymph nodes) had responded well to treatment. However there were two new areas lit up in his shoulder and side. He said the radiologist thought the shoulder might be due to the radiotherapy and the side may be due to trauma (my husband bashed his side a few weeks ago when he slipped in the kitchen). We were told he will need another scan in 3 months. 

I feel really unsatisfied with our consolation. It was a different doctor than we have seen before and his communication was poor and the whole thing felt really rushed, When I quizzed him further about the lit up areas he started going on about how my husband had one of the worst and most aggressive forms of cancer (we have never been told this before!) so it was important to look out for any changes in his condition. He then wished us a merry Christmas! 

I want to ask to speak to another doctor.  I feel that if the cancer has spread, 3 months is a long time to wait to find this out. I don't want to upset my husband though by showing him how worried I am. 

Any thoughts appreciated. I feel as stressed now as I did when he was first diagnosed. 

  • Hi Jane 10 weeks post treatment seems to be a little soon, the earliest is usually 3 months. So, it is possible that the lit up areas are from the RT, which is often the case, that's why some trusts are leaving the post treatment scans later. This has happened to quite a few on here, hopefully someone will come back with their experience of it. I know this happened to Beesuit, I'm sure she will answer also.

  • Hi Jane so sorry to hear your treatment by a new dr yesterday. Like Ray says 10 weeks is way too early in my opinion I had mine at 18 weeks. There’s quite a few who have had hot spots. Can you speak to your hubbys  Cancer  nurse for reassurance? 
    Our cancers are aggressive but treatment is brutal snd cure rate is high. 

    any cancer if speaking with original consultant medical secretary ti get an appointment to ease 

    try not to worry easy to say hard to do  

    hugs 

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Jane....take a deep breath.

    The others are right. A ten week scan is far too early and I am surprised it was offered so soon. As I explained earlier it might well be that a slot opened up early and the radiology department just slotted it in.

    Now, I had a scan at sixteen weeks. At that time I was being seen every six weeks. My oncologist ordered the scan saying it would fit in nicely just before my next appointment if it was done in five weeks (that would have made it 21 weeks) I got a slot five days later which showed a hotspot. Instead of contacting me straight away they left the results till my next appointment five weeks later. It was a wise decision because five weeks later the hotspot had disappeared on biopsy. They took eight FNAs, no cancer

    Some trusts biopsy and some re scan in three months. It's just the way it goes. It does add weeks of uncertainty but all you can do is put your heads down and try to get on

    Hotspots are common I'm afraid but most of them are just that. Residual effects of RT. A PET can't differentiate between acute inflammation and cancer. Many other things form part of any diagnosis.

    I know the bedside manner you have been exposed to is lacking and I know some clinicians just don't have the experience to deal with traumatised patients. They don't teach it much in med school and it only evolves from sympathetic teaching.

    It is an aggressive cancer which is why the treatment is agressive but it works in over 95% of patients.

    I hope this helps explain what's happening

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Thanks Dani, that does help. 

  • Hello Jane, sorry to hear this is causing you so much stress. Sorry I am unable to help you with this. My partner is currently nearly half way through 6 weeks of chemoradiation for similar (T3N0M0 larynx cancer) I find the not knowing what to expect very stressful. I have been following this forum very closely for advice and it seems to relieve me of lots of panic and worry, everyone is so helpful. This is one of the questions I was going to ask if how long after treatment finished will we have a scan. So it looks like 12 weeks? 

  • . So it looks like 12 weeks? 

    That’s about standard. It’s usually a PET but sometimes an MRI

    A lot of oncologists would like to do it much later to avoid the stress of false positives which are not uncommon. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Sunshine

    6 weeks of chemoradio finished in June 2023

    PET/CT scan 12 weeks later , clear, PEG feeding tube taken out soon after...recovery gained pace afterwards

    Peter 

  • Yes, 12 weeks seems to be the norm. I don't know why my husband had his a bit early. I don't hear of many people with cancer of the larynx. The chemoradiation does seem to have got rid of the cancer on his larynx and lymph node which is a positive. 

  • Yes it is quite a brutal treatment! My partner is nearly half way through and was never offered a peg of a rig however was told if he lost too much weight he would be admitted to hospital with an NG tube! He seems to be ok with swallowing at the moment however has mentioned some soreness this week! 
    would you mind me asking what stage your husbands was? You are right you don’t hear of many people with larynx cancer .

    A big positive that the treatment has got rid of the cancer on the larynx for your husband.