2nd PET Scan Results and Next Steps - 12/19/24

Sharing the results of my PET scan on Monday and next steps.  Unfortunately, it is not the news we wanted or were expecting, especially just finishing chemo.

So there is good news and bad news.  The good news is that my liver and some of my bones look stable.  The bad news is that there is progression on some of my bones, new areas in my right breast, and the big lump on my breast is growing.  The results from the scan indicate progression, which means I am not responding fully to the treatment I am on.

To be honest, it is taking a lot for me to write this right now, as I’ve had a really tough couple days of trying to wrap my head around this news that I’m still processing.  This hits hard, especially right before Christmas, during a time I was hoping I could take a deep breath and relax for a little bit.  But progression is not good, and to hear those words is painful.  Especially when I just got diagnosed months ago, let alone felt like I was coming out of the other side of this rollercoaster.  But that’s exactly what this is, a rollercoaster with no end in sight.  I was hoping that I could at least be on my first line of treatment for a couple years, which adds time to my life.  I’ve heard many, many women who are NED while on Herceptin and Perjeta for many years, but the cards fall where they may, and here we are in my situation. 

I ended up getting the results through “MyChart” on Monday evening and then met with Dr. Lassi on Wed.  The waiting period to meet with Dr. Lassi is just as bad if not worse than the news itself.  Dr. Lassi did not seem too concerned about the results, even with the progression, but recommended that we switch treatments to my second line, called Enhertu.  Enhertu is a combination of monoclonal anti-body called fam-trastuzumab and a chemotherapy called Dxd (short for T-Dxd).  Apparently, this is a newly approved FDA targeted therapy drug that goes directly to the cancer cells and releases chemotherapy right on the cells to kill it.  The results from the DESTINY trial indicated strong success rates of progression free and overall survival.  That being said, since the drug is so new, there are not many reports of how women are doing longer term on it.  Dr. Lassi said she is very optimistic this drug will work for me, so that is some good news there. I am concerned about the side effects though, as I heard those can be pretty bad.

As much as Dr. Lassi was reassuring me, I just was having a hard time coming to terms with switching treatments.  I told myself that if I receive bad news on my scan, that I want a second opinion from the Mayo Clinic.  So that is what I intend to do.  Thankfully, my good friend’s cousin is a breast cancer oncologist at Mayo, and she helped get me an appointment set up in Jan.  It sounds like the Mayo Clinic wants to do additional testing to make sure that I actually have progression AND that my new lumps in my breast are HER2+.  That and it is recommended I wait to start Enhertu until after my second opinion.  I completely agree.  It’s interesting because last night I was at a dinner with other fellow Thrivers and one of them said that she had lumps return in her breast that ended up being the Triple Negative sub-type.  So I definitely want to double check and make sure all tumors are still HER2+ so that I know I am getting the right treatment. 

 Currently I am scheduled for my next treatment, first treatment of Enhertu as of now on Jan. 2nd.  I am working to see if I can get another round of Taxol, Herceptin and Perjeta that day instead, to at least just get me by until after my second opinion.  As of right now, that confirmation from Dr. Lassi and the day of my appointment at Mayo is still to be determined. 

I am not going to lie, it’s been a rough few days for me.  But this is the nature of stage 4 diagnosis.  It’s not linear and there will be lows.  What has been hard for me the most, is I feel like I did everything right, yet still progression.  I’m wrestling with hope, belief and expectation.  I was in part, believing and expecting good results.  With my meditations, I put so much trust into my body, that I am finding myself in this complicated relationship with it now.  It’s quite a disappointed feeling, but also realizing that my expectations were maybe too high.  It’s been difficult to be kind to my body that is working to heal, but that has disappointed me if that makes sense.  Also caught between hope and expectation and how to have hope and belief without expectation.  And as I write this, I feel my chest tighten, which means I still need time to process this news.  Ultimately, I am terrified, terrified I am losing years of my life by switching treatments, and terrified for how I will respond to this next treatment if I move onto it.  I don’t want to run out of options. 

That all being said, I am remaining hopeful.  Miracles can happen every day.  I am still planning to continue doing what I’m doing and fight the hell out of this.  Because giving up is not an option.  And so with this heavy heart of mine, all I can do now is pray, and continue to live for today. 

I will keep everyone updated once I know more on next steps. 

Love, Stacy