PET/CT Results and the Pesky Met

General 3 Minutes

Many of you are aware that I had a PET/CT last Friday and I really appreciate all the calls and texts and the lovely flowers I got in the mail — I’m so appreciative of the support that surrounds me, near and far! As many of you totally get, the lead up to scans is just overwhelming. Scanxiety, which I’ve written about before is like nothing else I’ve ever experienced and while my coping mechanisms have gotten better over time, in the week leading up to a scan, I’m not ok in any sense of the word.

The short news is that the PET/CT shows that the metastatic disease in my body is STABLE.

As several people reminded me, I’ve consistently told THEM to celebrate stability and I am rather grudgingly happy about this news. Why grudging? Well, after the radiation, which caused a whole lot of angst and difficulty and appointments, I’d really hoped for No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD), which is what those of us with bone mets can hope for since dead mets and healing bone will still show up on bone scans. In the four (4) years I’ve been dealing with cancer, I’ve never gotten to this status and I’ve really wanted to be there — when I was diagnosed, I had such a high disease load that my bones looked entirely black on the scans and I know I’ve come a long long way since then.

Well, nope, the pesky met is still active, albeit slightly less active, and now pesky met junior has become more active. As to the pesky met, it is likely that it is just too soon to see the full results of radiation, so we’re watching that for now and will continue to watch it. With regard to pesky met jr, it is outside the field of radiation from the pesky met so radiation is theoretically possible, but it’s just now waking up, so also watching that one for now.

The only thing out of left field for this PET/CT is an “opacity” in my upper right lung. It’s small (1.6 x 1.7 cm), smooth, and only has a small uptake. The uptake means that it absorbed the radiation and shows up as “bright” on the PET scan. Different things can absorb the radiation and look bright — cancer, infection, and inflammation — probably other things too, these are just the three most likely. The radiologist went on to use the term “Bibasilar atelectasis,” which is a partial collapse of the lung.

Bottom line, this just means that there’s a part of my lung that can’t fully inflate (i.e., absorb oxygen) because the opacity is blocking that space. I’m not having any symptoms and the radiologist felt that the area is most likely infection or inflammation. After consulting with a variety of doctors, the general consensus is that it’s probably inflammation, likely not related to the Covid Vaccine, likely not pneumonitis, which can be caused by the CDK4/6 inhibitors and we will just rescan in a few months.

Their sanguinity has helped me to breathe a little more easily (pun intended); at the same time, just like scanxiety, the worry that creeps into my daily life is often debilitating and once triggered, never really goes away. I start to imagine symptoms or question if a cough or hitch in my breath is related to the opacity or a lung met or is a harbinger of something horrible to come. We all have those symptoms that scare us in advance — lung and brain mets are my kryptonite right now.

And this is what living with MBC is, the scan, treat, repeat pattern that is my life now. We shall wait for the next scans in May.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

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47 thoughts on “PET/CT Results and the Pesky Met”

  2. Grudgingly happy for you, as I too was hoping for cause for a huge celebration! Praying peace and strength in the aftermath of these results. God bless you, my friend. 🙏❤️

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  8. Dear Abigail, glad to hear that you are stable and sorry life has exposed you to words like “Bibasilar atelectasis”. I hope time with your family will ease the burden of them and allow you a little carefree headspace. Nikki @lifeafterlola

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  9. This hit home for me. Celebrating your stability! The trepidation that comes with every new symptom is exhausting. Praying that you (and all of us!) find peace and calm through this.

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  10. Ah, dear Abigail—

    Through this report of your continuing and dizzying unwanted roller coaster ride peeks that endearing humor: the naming of a new foe—pesky met jr.

    Somehow, the verbiage reassured me that things are nearing control. As you say, you’ve come a long way since your diagnosis. May the bibasilar atelectasis soon resolve and pesky mets sr and jr give way to a subsequent NEAD or NED in the near future. 💕

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  11. I would think having the scan this soon after the radiotherapy stability is good. Fingers crossed the next scan shows the radiation did its work on the pesky met.
    I’m in hospital with maybe pneumonia (which didn’t respond to IV antibiotics) or pneumonitis which needs steroids, not antibiotics. The doctor sent me for a scan which is the first since radiotherapy ended mid-January. This is to try to figure out what the infection is but it will also show the tumour and tonight I doubt if I’ll sleep because of scanxiety.
    Good luck.

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    1. Oh no! I’m so sorry that you are in the hospital. 🤞🏻🤞🏻 for results that are actionable and easy to understand. Waiting for results and a plan can be excruciating. Sending love and gentle hugs. ❤️

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  12. The whole scanning thing is scary, but one doctor told my wife and I that radiation continues to work after it is done or you stop that treatment. I think this was an Oncologist. So waiting before scanning sounds right. Please be encouraged and surround yourself with positivity and positive people. Continuing to pray.

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  13. Stable I’d say I’d like to hear more often! Sending healing love and my light to you

    By the way it looks like we will be coming to south Florida in about 3 months – coming to go to my moms grave and visit friends. I hope we can get together then too! I’ll get you the details as soon as I’ve got the travel nailed down.

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    1. Ooooooohhhhhh …. happy dancing in anticipation!!! I’m so sorry that you are coming to see your Mom’s grave, condolences on that. I’m also very very very happy that you are coming my way!!!!!!! ❤️😘

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    1. Looking back, I am a little amazed. I think we tend to normalize all kinds of very strange things in the MBC community because of all the side effects and issues that come about because of the mets and the Medication. Hard to be objective though. Thank you for reading and commenting!

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  20. Oh bloody hell, I’m so sorry. I don’t know what to say. I would have been hoping for the NED or NEAD even if I didn’t think it were likely; we often hope for better subconsciously, then get disappointed by something like this happening. So it sounds like better news with pesky met being a little less active, not so great with junior becoming more active, and pesky met junior being outside the field of radiation. And of course then the partial lung collapse. That’s a heck of a lot to take in. Not that I want to worry or panic you, because you’re in good hands and it’s all being kept a close eye on, which is good. I just hope you don’t ever beat yourself up for scanxiety or other anxiety and worry over your health. It’s a lot to deal with and I think you take it all in and discuss it here with grace and strength (sorry for the cliche but it’s true).

    I’ve only known one person to have a lung collapse, and thankfully he went on to have this be repaired, reversed and improved back to ‘normal’ with no lingering problems. But he didn’t have what you have to deal with, though I’m glad you don’t have symptoms with the lung not being able to fully inflate. I have bronchiectasis, scarring and inflammation, so I know a little more about lungs than I used to since all of my infections. I really hope whatever’s caused the issues in your case can resolve themselves, as stranger things happen. Fingers crossed by the rescan in a few months there will be some improvement here, or some better idea of what’s going on.

    Sending gentle hugs and my very, very best wishes  ♥ ♥ ♥

    Caz xx

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    1. Thank you so much!! Hearing from those who get the ambivalence and ability to have both the happiness of a stable scan and the fear of something new rearing it’s ugly head is so helpful. Much appreciated!! ❤️

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    1. Thank you!! That is my hope as well. I did learn that an advocate who died recently, having lived with MBC for over 20 years, never reached NED. She always had active cancer during those decades living with MBC. It was a good reminder that this “goal” I’ve been striving towards might not actually be the best focus. Appreciate you, my friend.

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    1. I’m so glad you are finding peace through praying the rosary. We all have to find those things that help us cope, not just with the big issues like having terminal cancer, but also the day to day quality of life issues. I appreciate you reading and commenting!

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