Medical Update, 4th of 2021

Those of us who are forever patients are scanned all the time. We lovingly/sarcastically/mournfully call this process “scan, treat, repeat.” Because of these regular scans, things that would never have been known about the interior workings of our bodies are known and become a potential issue, at least inside my head. I can’t say that I’ve gotten better at dealing with these extra weird things in the last 4 years but at least I don’t always immediately jump to “it’s a met” and dwell there too much; actually, for the record, I still do that.

Enter a lung opacity in my right lung, 1.6 cm x 1.6 cm.

This lung opacity, which is likely filled with fluid and has bubbles in it (a/k/a cavitations), showed up on my March, 2021 PET scan and caused some consternation. The consensus between my medical oncologist and the radiation oncologist who was then treating the pesky pelvic met was that it was no big deal and a chest CT was ordered for mid-May to watch it.

This whole watch and wait thing sucks.

The Chest CT in mid-May showed the same opacity had gotten smaller and was measuring 1.5 cm x 1.5 cm. Knowing that it was still there freaked me out a bit and so I asked for a referral to a pulmonologist to make sure we didn’t need to biopsy the opacity or do something else like antibiotics since one of the options suggested by the radiologist was that it could be an infection.

And yet, I have no symptoms — I suppose it is always possible that a symptom is masked by all of the other things I deal with every day, but all of the expected symptoms when there is an infection are simply not present. I now have yet another doctor, one who has been leading the charge with regard to treating COVID patients in South Florida. It is ironic to think about all those years when I only had my gynecologist that I saw once a year. Now I have a doctor for nearly every part of my body it seems.

So the new pulmonologist is super experienced and has been a colleague of my medical oncologist for a long time, in fact she gave me flowers to take to him during my first appointment, which was a great way to start out a relationship with a new doctor. He looked at my scans, did a physical exam, and talked through the options with me. He treated me as if I had a brain, was involved in my care, and is the boss, which is my preference. One good thing is that he was able to answer definitively (as definitively as is possible) that the opacity isn’t COVID or COVID vaccine related.

The consensus is still to wait, to watch, and to potentially biopsy the small area if I show some symptoms. Again, I say boo to this watch and wait thing. I do understand the risks of any procedure on my body now that I’ve been immunocompromised for 4 years and filling my body with all kind of toxic medications for that same amount of time. From what I understand, if it is an infection and my body isn’t able to handle it, then the antibiotics that I’d need to take to overcome the fact that the opacity is now “walled off” from the rest of my lungs are pretty heavy duty and would have to be prescribed for a long time period.

But at the same time as we were investigating this lung opacity, I now have a surgery scheduled on my jaw. I’d written previously about the affects of taking the bisphosphonate, Zometa, for years and the diagnosis of Bisphosphonate Induced Osteonecrosis of the Jaw (BIONJ) and you can read about that here. The hole in my mouth from losing tooth #18, a molar, has been causing ongoing issues. The gum inside the hole is super delicate and bleeds a lot; I get lots of things, usually food, stuck down in the hole; and caring for my mouth has become increasingly painful. So, my oral surgeon is going to clean out and repair the hole; actually fill it in with fat in my mouth and then stitch it closed.

Thinking about having the pain and irritation of this hole addressed is a pretty big deal.

I am reminded of how often a medical decision isn’t just about the medicine. My new doc, the pulmonologist, said he doesn’t treat the scans, he treats the person. It’s good to hear that from a doctor, that they aren’t just looking at how I present on paper, but also looking at me, at my life, at my activity level, and my quality of life.

My quality of life has taken a pretty big hit with the jaw issues. It’s been just about a year since I was diagnosed and each element of the experience with BIONJ has been pretty negative. I’ve adjusted each time and done my best, but the trajectory of those adjustments have been more and more negative. Knowing that there is a potential fix (with it’s own risks, of course) is huge.

And so, that’s the update. There are always so many moving parts in this living with cancer thing and every time I think I’ve gotten things under control, something else is added to the mix.

31 thoughts on “Medical Update, 4th of 2021

  1. I am so sorry to hear about ongoing issues with both jaw and lung. Surgery in any part of the body is painful, especially the mouth. And then you will probably have to postpone zometa as you heal. Another scary thought with fragile bones. I pray for quick healing of tooth area and wisdom and discernment as you decide on lung. Love ♥️ and hugs 🤗

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    1. Thank you!! Yes, we will put off Zometa at least one quarter while the jaw heals and while I’ve a lot of it swimming around in my body (it’s half life is 11 years), I’m always worried about falling and fracturing something. Appreciate the love and hugs. ❤️

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  2. My scan is on Thursday this week and meeting with the oncologist next Monday so I understand scanxiety. I was wincing while reading about your jaw as, although, I don’t have anything that serious, my teeth seem to be crumbling. Waiting for the dentist to reply to my call. Good luck with your surgery – hope it brings relief.

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  3. I don’t care for the watch and wait approach either. It has made suspected problems worse for me. I skip over it whenever possible and go straight to a referral. Sending energy and hugs for your surgery on your jaw.

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    1. Thank you!! That’s part of why I insisted on seeing the pulmonologist when my med onc might have waited a bit longer for the referral. I was a little surprised when he wanted to do the same thing. I am glad that my next PET is 6/16, so not too long to wait. And part of the reason they are comfortable waiting is that I have no symptoms yet. If I do develop symptoms then they will intervene.

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  4. I hope all goes well with your jaw surgery. My first oncologist told me that there was a limited time to take Zometa which I did immediately after initial cancer treatment. Now I’m on Xgevia which I think is bone med #3. No idea how long I’ll be on that one. As for the scans, yes I totally get that anxiety. Mine are coming up on June 4. My attitude is “get it over with”, but I do worry what it will find in my traitorous body.

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  5. Abigail- I stopped zometa after the first three months – my body rejected it and the side effects were intolerable. Your feelings about wait and see and your oncologists and specialists are not the same as mine. It also sounds like you’re the captain or at least the quarterback of your team. You directed your oncologist to get you to a pulmonary specialist. Oddly I’ve had roughly a 1 cm spot of some kind in my left lung since day one but it’s scar tissue from an old infection at some point in my life. Nothing to do with cancer or covid. There’s times like when I had to have radiation on my lumbar vertebrae that I wish we’d have waited to see if any new medication I would be taking might take care if it. Instead of just taking care of it it also pummeled three lymph nodes in my abdomen, causing leg lymphedema and Ascites build up in my abdomen. Now it’s a slow fill, Im just noticing the problem starting to recur but at least it’s not constant answering the question: how would a cancer drug take care of a non-cancer problem. The fluid is of course lymph. It has problems going where it needs to go. So while we all live scan to scan, drug to drug, treatment to treatment – I agree that the cure causes as many problems as the cancer. I couldn’t see the points of view of those who rejected our paths going for the naturopathic paths. But it’s also expensive and not covered by insurance and yet I see people living as long as we do using say Ricks oil, nutrition, and traditional Chinese medicine (which I think deserves more study by the oncology researchers in the west.) I definitely feel everything you’re talking about and providing medical updates I hope helps others – it’s not pity we want but to provide experience over years of treatments to others who have MBC for less time or longer – we all have similar experiences and challenges and it sometimes helps to know we are not alone nor are we crazy.
    I love you!
    Ilene

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    1. Thank you for your insight, Ilene, and the reminder that intervention is not always the best given the fact that it can cause other issues. Thank you. That really helps. I have no symptoms right now and that’s why they don’t want to do anything. I suppose I’m not wedded to the idea of intervention, more that I’m worried that something will be worse if we don’t. I don’t always remember that the results of intervention can be an issue too. So many things!! As we all walk this path with MBC, similar issues or decisions seem to reoccur giving us another chance to sift through all of the options and pros/cons. Love that we are doing this MBC thing together (or as together as possible given the physical distance). Love you too!! ❤️

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      1. Physical distance hasn’t kept us from walking together, metaphysically anyway, along the mbc path. I’m about to write my blog post and a poem inspired by your wonderful phrase. As I borrowed endurer from Rudy Fischman, I’ll borrow path to replace journey, which I cannot seem to use in my MBC life. It makes no sense to me. Like “you got this!” It irritates me when people ask about my journey. But I smile and wave, smile and wave. Not to be rude.

        I suppose to because of what and where it is, the pulmonologist gave you the best option they know. And who better? We’re lucky to be strong self advocates. We advocate for those who’ve entered the forest on the path and hold their hand for as long as they need or as long as we’re capable.

        If that’s not good interventional therapy I don’t know what is.

        Much love. We will hold hands one day and walk together, Florida or San Antonio, or Philadelphia next year. May we hold hands until then in the ways we have become accustomed to using.
        ❤️

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  6. Hi Abigail,

    Yes, that whole watch and wait thing is so hard. I’m really glad to hear you like your new pulmonologist, although, of course, it sucks that you need one. It’s crazy how many specialists a cancer patient, especially someone with stage 4, can accumulate.

    Hoping the jaw surgery goes well and brings you some much deserved relief. I know you’ll keep us posted. Thanks for the update. Keep writing. x

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  7. Hey Abigail sending you energy and good wishes for the surgery. I’m sure it will go well. And I hope you get some relief, quiet and peace after that. Keep us posted!

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