PET shows spot on brain - is it always cancer?

dorimak
dorimak Member Posts: 147
edited January 2019 in Stage IV/Metastatic Breast Cancer ONLY

I’m already stage IV with limited mets on sternum nodes and lung. Had a PET yesterday and doc called today with results. She said there’s a spot on my brain that requires further evaluation. They’re now closed for the holiday and I have to wait until Jan 3rd t have an MRI. I was distressed to hear that when she called me so didn’t ask her if it could be just something others than brain mets. Has anyone had a spot show in a PET on the brain that turned out to be nothing of concern?

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  • illimae
    illimae Member Posts: 5,710
    edited December 2018

    dorimak, sorry you’re dealing with this. I had 5 spots and am HER2+, so no question for me really. The MRI will tell the story more clearly, best to stay hopeful until then, if you can. Good luck to you 🙂


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  • dorimak
    dorimak Member Posts: 147
    edited December 2018

    Thank you illimae. HER2+ used to be a bad thing way back when I was diagnosed in 2001 but Herceptin appears to have changed that. Just difficult to get this news and then have to wait until after holidays to learn what’s going on. I wish you well.

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  • illimae
    illimae Member Posts: 5,710
    edited December 2018

    HER2 likes the brain but small lesions are usually highly treatable, it’s not necessarily “the end”. Gamma knife rads had a 95% success rate for mine. I had a 2nd batch of 5 more lesions in April but now everything looks good. Even Lepto mets (in the Brain/spinal fluid) can be treated with an Ommaya port in some cases. There are many medical treatments for the brain and hope should not be lost. Enjoy the holidays!

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  • dorimak
    dorimak Member Posts: 147
    edited December 2018

    Bumping. Really anxious as MRI not until Jan 3rd. Reason I had PET was to get a better look at lung met. Was not expecting any surprises as I had just had CT although they only look at chest and abdomen. Earlier bone scan also clear. Couldn’t believe when I got the call about the spot on my brain and I was so distressed that I dont recall the conversation :(

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  • AllyBee
    AllyBee Member Posts: 128
    edited December 2018

    Hi Dorimak,

    I don't really have much advice but I can just feel the panic in your post. Don't lose hope, if it is a brain tumor there are a lot of options. On my MRI there was no question that it was a brain tumor, this was also very obvious on my PET scan. I have had things show on an MRI that we monitored because they were unsure what they may be. They haven't turn into anything of concern yet. I've also had various things pop up on my PET scan that were caused by local infections mainly lymph nodes. Unfortunately there is not going to be any way to know until you do some more scans. Are you able to call your Dr's after the holidays just to get some more information now that your in a calmer state of mind? Whatever happens there is so much support here and so many ladies with a lot experience and knowledge. They were a real rock to me when I first found out.

    Hugs

    Ally

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  • JFL
    JFL Member Posts: 1,947
    edited December 2018

    Dorimak, do you know whether your PET scans go up through the top of your head and where the suspicious area is located? Most PET scans only go to the base of the skull. Mine only go up to the base of the skull. I have had flared up areas show up in my head area but not in the brain. My tonsil has lit up several different times when I was sick as well as my throat. My sinuses are always noted as having issues. If there is an area of damage that is receiving more blood flow to heal, then it could show up as a false positive. Fingers crossed for you. Seems harsh to make you wait until January. Awful.

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  • dorimak
    dorimak Member Posts: 147
    edited December 2018

    AllyBee and JFL, thank you for responding. I'm scheduled for an MRI on Jan 3rd. Unfortunately my doc is out this whole week. It's just unfortunate timing. I've been oligometastasic (limited to two areas....nodes under sternum and area of my lung) and decision was made to talk to radiation oncologist to discuss possibly radiating the areas. He wanted a PET to get a better look at the lung lesion. JFL it did include my head. It didn't even occur to me that they'd find a surprise. I got the call to say that they found a spot on my brain that they wanted to investigate further. It has occurred to me in the last couple of days that I'd had a PET two years ago and nothing was mentioned at that point, but maybe they didn't do my head that last time. Anyway, appreciate the support and thanks for taking the time to respond.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited December 2018

    Hi Dorimak,
    I'm sorry you find yourself in this situation. I had a spot on my brain that was initially dx as a cavernoma, but after it bled and required surgery, my neurosurgeon discovered it was a brain met. I had GammaKnife to the tumor bed a few weeks after surgery and have been NED since then (March 2015). So please don't panic if it is a met, as there are many treatments available to help treat it. The waiting til the 3rd sucks. Hang in there!

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  • dorimak
    dorimak Member Posts: 147
    edited December 2018

    Hi Goodie16, that is encouraging. I used to fear liver mets but they appear to be quite treatable also. Never even considered the brain but sounds like they can be quite treatable. Blessings to you and may you continue with NED.

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  • dorimak
    dorimak Member Posts: 147
    edited January 2019

    Sorry to use this forum to whine but feeling very anxious and frustrated tonight. So on Dec 17th. I did a PET scan and got a call to say that it showed a suspicious brain lesion. Purpose of PET was to get a better look at the lung mets so I was stunned and not anticipating any surprises. Next step was MRI but because of holidays I didn't get scheduled until today. I have really good veins and have quarterly CTs with contrast without difficulty at another facility, but today at the hospital for whatever reason they had to stick me multiple times to get the contrast in, the last stick being extremely painful. I was also starting to feel claustrophobic as it was taking so long while my head was trapped in the cage like thing. I left feeling really distressed then this evening I get a call to say that they have to redo the MRI because they failed to get adequate contrast. It's two weeks since I had my PET scan and I have yet to learn what might be going on with my brain. Perhaps my next post will be to report that there's nothing serious going on and it's just some benign lesion but feeling incredibly anxious and desperate :(

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  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    Just an awful sequence of events with your MRI. Sorry you had to go through that and continue to feel anxiety over what is going on. I hope to hear you telling us it is nothing in your next post! I have good veins up and down my arms as my veins are large and protrude throughout my forearms and hands and the cancer center never has issues taking my blood or giving me chemo (over 1.5 years of IV chemo with mets and no port). However, anytime I go to the hospital for a procedure, the techs/nurses there have the worst time, usually sticking me several times and it being extremely painful and blood leaking everywhere. They don't seem to be as skilled at getting a good line into the bloodstream.

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  • illimae
    illimae Member Posts: 5,710
    edited January 2019

    dorimak, I’m sorry about the IV, I hate them too and find it very painful. I do want to share something that might help the claustrophobia though. When I’m in the tube, I close my eyes and try to imagine what is making all those noises. Lately, it’s been those little wooden peg people from the 1970’s doing construction and I find children banging on pots and pans chime in as well. I truly hope the next one is a breeze.

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  • dorimak
    dorimak Member Posts: 147
    edited January 2019

    Hi JFL, that's interesting about the hospital. You would almost expect the opposite. illimae, thank you for the tip on the claustrophobia. I was doing fine until I was trapped for what seemed like forever trying to get a vein. Today in the repeat I got a different tech and he did a good job.

    I wanted to update in case someone found this thread. I had hoped that it would put minds at ease when I could report that it was some benign lesion. Sadly that was not the case. The suspicious lesion 2cm that showed in the PET scan turned out to be a met and there are six other smaller mets. I'm am devastated. My situation prior to today was pretty good. I just had one area under my sternum and what's still regarded as a suspicious area in my lung It's too small to biopsy. I'm on my third hormonal and am three years since diagnosis and was feeling pretty optimistic and had good quality of life. My MO was out today so I just got to speak with the nurse practitioner but she said she had spoke to RO and he told her the treatment is whole brain radiation. In reading through the brain mets thread, I wasn't able to determine how they decide on WBR vs gamma knife. Again, thank you ladies for your support.

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  • illimae
    illimae Member Posts: 5,710
    edited January 2019

    dorinak, I think you might be in a grey area for gamma knife, it’s been done to more mets but you might have to fight for it. You’re neuro rads onc should discuss the pros and cons of both. I’ve only had gamma but even though it looks like a torture device, it’s totally doable with almost no SE’s.

    So sorry that’s the case though, hugs to you.

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  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    Dorimak, I am sorry to hear the news. It is hard to understand how things can change so quickly with this disease. It is certainly scary but there are more and more treatment advancements for brain mets every day. I have a friend who lived 18 years with brain mets.

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