Medical Update, third of 2021

You can read the first and second updates if you need to catch up on the dilemmas I faced with regard to treating/killing/freezing/nuking/blasting the pesky met. The cliff’s notes version is that there is one metastasis that just won’t die and it’s located in my right pubic synthesis; the options I was considering were cryoablation and radiation; additionally, consulting with the Bone Mets Clinic at Duke in North Carolina as well as local doctors at my cancer center in Miami. What made making the decision even harder is that I received differing advice from different doctors and had to evaluate the reliability of each recommendation on my own and with my medical oncologist, which wasn’t an easy task.

After talking and talking and talking some more to various doctors, my family, other advocates, etc., reading lots and lots and lots of literature/studies/articles, and going back and forth and back and forth and back and forth again …. I completed three (3) rounds of Stereotactic Body Radiotherapy (SBRT) to the pesky met at the Miami Cancer Institute (MCI). You might recall the shrink wrapping pictures from the planning sessions, which was done to ensure that I stayed very very very very still during the procedure. The pressure I felt was equivalent to 55 pounds per square inch (psi) and I had to endure that pressure for about 15-20 minutes for each session while the physicist and the doctor checked to make sure I was properly in place.

My new radiation oncologist had a front row seat to my dithering and attempting to compare apples to apples and was patient enough to read and respond to the articles I sent him as well as talking repeatedly to my medical oncologist as I pressed her to give me her recommendations and direction. Additionally, he sat down with me and reviewed the entire plan, showing me how each physical structure near the pesky met could be affected and how he adjusted each of the metrics to be even safer due to the potential issues that could be caused by ATM, the germline mutation I have. He was flexible enough to bend on the original boundary that we had to have a biopsy that showed cancer before starting radiation due to the totality of the circumstances since I wasn’t excited about undergoing another biopsy when the first wasn’t successful.

The value of SBRT was that I received the equivalent of five (5) weeks of radiation to the pesky met in just three sessions and the treatment is precise enough to spare the sensitive structures around the met from damage. The adjustments my radiation oncologist made meant, for example, that even my skin only received about a third of the radiation it could absorb without being damaged.

Radiation is a weird treatment to undergo because while the lights and movements indicate that the machine is on and doing something, you don’t feel anything and, for me, there are no immediate side effects or physical ramifications. The HUGE thickness of the doors and walls around the machine are a little intimidating because everyone else is clearly shielded from what you are directly exposed to and yet you just lie there and wait and wait to feel something. The bed I was on could move in four (4) dimensions, which made it even easier for my team to ensure that I was exactly properly placed for the beams to do the best job.

At the end of the three (3) sessions, I received a medal and a certificate and I was invited to ring a large bell. I’ve written before about the bell and how ringing the bell affects those of us who will never be truly done with treatment but this was the first time I was invited to ring it. I’ve had chemo and radiation previously at a different cancer center and I suppose it just wasn’t as big of an issue or option there. I declined to ring the bell as I’m still very ambivalent about it overall. I am happy to be done with radiation, but it just didn’t feel right to me.

While my radiation oncologist usually completes a CT scan at the 8 week mark, since I’m already scheduled for a PET/CT in March, we agreed to see what that shows and then decide if I need another CT after that. If radiation was successful in nuking the pesky met, I may actually finally achieve No Evidence of Active Disease (NEAD). Not counting on anything right now, but mildly hopeful that perhaps the next PET will be time to celebrate.

Here’s some of the pictures I took on my final day of Radiation:

The 305PinkPack is a local organization supporting women through treatment, the robes are a new option in the radiation department and the medal is what I received for completing radiation.

And so, another part of my treatment ends and I continue on with the targeted therapies I’m on. I’d adjusted my cycles of Kisquali due to getting the 2nd COVID vaccine shot the same week as radiation, so I’m now back on the regularly cycle of 3 weeks of Kisquali and one week off. Keeping fingers and toes, and whatever else I can cross, crossed for good news next month!

29 thoughts on “Medical Update, third of 2021

  1. Wow, just wow…I am continually blown away by all the facets of your ongoing treatment and all you have to absorb and process mentally and emotionally. Praying for that NEAD diagnosis!!!
    🙏🙏🙏❤️❤️❤️

    Liked by 2 people

  2. Thank you for this valuable update.
    It’s amazing to me that you can remember and then provide such detail about this complex treatment. And it’s such welcome news that radiation can be more targeted so that it does less damage to the surrounding areas. I’ve been reading about even additional advances.

    So your cheering squad eagerly hopes to celebrate a NEAD report with you quite soon.

    All good wishes,
    Annie💕

    All good

    Liked by 1 person

  3. I hope you get your NEAD! But, can I ask, is the Pesky Met in your bones your only met? IS this radiation treatment common knowledge? I only have a met in the lumbar region of my back – no where else. It would be amazing to think it could get blasted out. Thanks for these enlightening posts

    Liked by 1 person

    1. When I was diagnosed in 2017, they stopped counting at 1000s of mets, so I began with a super high disease load. Over the last nearly 4 years, the various meds have worked on wrestling the mets into submission. As of my last PET scan, just the pesky met in my pelvis is lighting up, meaning metabolic activity. The other mets are all dead or dying. I discovered when interfacing with the bone mets clinic at Duke, that they are aggressively treating single or limited bone mets, often called ogliometastatic. It is a different way of thinking about a lower disease load and might be worth a consult. I really loved how they work as a team in the bone mets clinic and were able to compare different ways of dealing with specific mets as a team.

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  4. Wow. I’ve been so gob-smacked reading your medical updates I’ve not managed to reply to any of them! In the last one, I was fascinated by the ‘shrink wrapping’ to keep you in place. I had to wear a plastic mesh mask, screwed onto the table but your shrink wrapping is something else. I’m also amazed at how much communication you have with all the different medical personnel – here, the oncologist decides what treatment should be used based on scans and biopsies. Yes, the final decision is mine but I have no one else to discuss it with.
    And your tattoos are gorgeous but I’m such a wimp I’ll never have any done and I’m also wondering how much time they took.
    I hope you achieve NEAD.

    Liked by 1 person

    1. I’m so sorry that you don’t have the access to your team to discuss your questions. I’m pretty stubborn about getting what I need and I’ve often refused to consent to a procedure or test without having all of the information I need to make a decision. The whole idea of INFORMED consent means that you know what you are consenting to. Not every doctor responds well to that sort of personal advocacy and you have to figure out what makes sense for you and your team. I do get frustrated sometimes and have to push to get what I need, so it’s not perfect by any means.

      Liked by 1 person

      1. I’ve often felt that from various doctors as an initial reaction and it can take them some time to get to know me. From representing doctors in my former life as a litigator, I found that most doctors are so paranoid about malpractice that they automatically assume questions are someone looking for a loophole or where they did something wrong. I try to preface hard questions with … since I didn’t go to medical school … that helps sometimes. Or just saying, hey, you seem defensive about my question. I’m only asking to understand. I think outing the issue can be helpful. All my docs know that I’m a lawyer, so I try to poke fun at myself and say things like … I know lawyers make you nervous but I’m here as a patient only. 😎

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  5. So exciting that you might be NEAD! I am praying that you will be. We need you around for a long long time to continue the advocacy, your blog, surviving breast cancer podcasts and other work you do for our MBC community. You seem tiredness! I am in a clinical trial at Duke and feel the doctors there, at least mine, are stellar and I feel I am in very good hands!

    Liked by 1 person

  6. I hated radiation still having negative effucks on my body. I’m glad you got to ring a bell – we all deserve a little bit of recognition for the continued treatments metastatic breast cancer and all mets endurers must remain on for the rest of our lives. Resilience certainly is one trait we had going into this or we gained once we got our diagnosis. There’s a connection between our minds and bodies presenting a
    continuum of strength. If only we couldn’t say there’s nights of crying tears that are as big as bees. And they sting. They do.

    Liked by 1 person

    1. I was offered the opportunity to ring the bell but I didn’t. For those of us who are stage iv, it just doesn’t feel right to me. I’m not done. I’ll never be done. And yes the tears sting a lot.

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