Treatment Next Steps After 2nd PET Scan - 12/30/24

Giving an update since finding out I had progression after my last scans.  I mentioned I was going to get a second opinion from the Mayo Clinic before I move forward with the recommendation to start my second line of treatment called Enhertu.  Thankfully I was able to get an appointment at Mayo the day after Christmas with Dr. Goetz.  It worked out because both my parents are here and were able to go with me.  I was scheduled to start Enhertu infusions on Jan. 2nd, so glad I was able to get in before this.  

The appointment ended up going well overall.  Mayo is a beautiful campus and Dr. Goetz seemed like a really good oncologist to meet with.   Dr. Goetz reviewed all my scans and results, asked questions and walked through everything in detail.  Long story short, there is a 20% chance that the progression could be due to a different subtype of breast cancer.  The subtypes are HER2+ (which I have), Estrogren/Hormone + (ER/HR) and triple negative, which is none of the subtypes.  Basically, a cancer tumor is made up of a million types of cells, and there is chance that some of those cells could be ER/HR+.  The reason he was questioning this, is because my progression seemed to occur on the bones (which he said the ER/HR types love the bones and because I am young, I may have more estrogen in my body, which can cause this type of breast cancer).  I did however get a biopsy back in August of both my breast and liver to confirm it was only grade 3 HER2+, ER/HR-.  The biopsies would indicate I am strictly HER2+.  According to Dr. Goetz, I have only limited resistance to the previous treatment of Phesgo, since all the other areas of my body looked stable, and he did say I had a remarkable response to the treatment back in Oct for my first scan.  Additionally, however, the radiologist at Mayo looked over my latest scan and may have seen slight progression in my liver.  Moving forward, I think it may be best for me to send over the results of my PET Scans to Mayo for a second review.

To confirm if any of the cells are ER/HR+, Mayo Clinic has a scan called a FES PET which uses a tracer to go to the cells and highlight those that are ER/HR+.  There were a couple options on how to proceed, based on these test results.  IF the cells are ER/HR+ and showing up in breast and bones where there is progression, then I would stay on Phesgo, plus add additional treatments for that subtype.  IF the cells are not ER/HR+, I would start the recommendation of Enhertu as the second line treatment.  IF the cells are only ER/HR+ in the bones, I would still do Enhertu, plus add on additional treatment.  

So basically a 20% chance I stay on Phesgo + additional treatment, OR 80% chance I go on Enhertu.  I had the FES PET scheduled for Jan. 13th and Dr. Goetz was trying to move it up because I can’t wait any longer to find out the results, but unfortunately the tracer could not be shipped earlier.  These last few days have been a whirlwind and very difficult in going back and forth with Dr. Lassi and Dr. Goetz.  I was trying to see if I can get another Phesgo shot in the meantime to hold me over until the results of the FES PET.  I want to make sure I am doing the correct sequence of treatments.  Dr. Lassi recommended that we do not go back to Phesgo because it isn’t working for me, and mentioned I will continue to have progression if I go on that again.  Dr. Goetz initially recommended I get some treatment ASAP because I haven’t had a Phesgo shot since 11/18, taxol since 12/9 and every day I notice the big tumor and two new smaller tumors on my right breast getting bigger.  So all this to say, I need to be on treatment, yet Phesgo is not the right treatment. However, is there a different sub type we are dealing with that would make that true?

Given all this and going back and forth with both doctors, both of them came to agreement that I just need to start Enhertu on Jan. 2nd and revisit the FES PET at a later date.  Ultimately this is not ideal, and the timing just didn’t work out.  I need to be on treatment, but it has to be Enhertu in order to take control of the cancer.  They just didn’t want me to wait, because the cancer is aggressive and every day it’s growing.  While I agree I need to be on treatment to control the cancer, there is still a part of me that feels unsettled with this decision, especially since there is a 20% chance my treatment could be different, and/or an opportunity to be on my first line of treatment longer.  I am concerned that by switching to the second line so early, that I am losing out of years of my life that I could be alive.  And if we revisit FES PET in the future, is that the best strategy, to wait and see if I need that later on?  I just have to have faith in both of these doctors opinions and recommendations.  They have the experience, but this is also my life.  Even though nothing is changing for my treatment plan, I am still glad I went to get a second opinion.  I am keeping that door open for the future and I plan to get every scan reviewed by Mayo clinics radiologists moving forward.  In the meantime, I am working with Dr. Lassi to see if I can get a biopsy at least of the two new tumors in my right breast.  It sounds like the treatment would still not change at least for now, no matter the results, but this may be a peace of mind thing for me to just make sure.  

After the back and forth with the oncologists, I was feeling mentally and physically drained.  This stuff sucks, and it’s exhausting.  The unknowns are exhausting, and I’ve been having a rough few days.  I know it’s the holidays and my dad is here with me, but for a few days there, I was in my head so much, and was having a hard time enjoying anything.

But every day, I’ve been getting up, doing my best to continue my routine, eat healthy, go to the gym, meditate, breathe and try to enjoy life.  Everything happening to me is out of my control, and it’s such a frustrating place to be in.  But everything outside of cancer is in my control, and there is still a life to be lived.  I will not give up, and I have faith that this is the right path for me.  Enhertu will work on me, and I will be that 5% that goes into a deep remission.  

So my long story short, actually ended up being just a long story.  I start Enhertu infusions in IV on Jan. 2nd and will get them every 3 weeks.  I pray that my side effects will be minimal.  I have no choice but to take this drug to keep me alive.  

Outside of all this, Christmas Eve and Christmas day ended up being a really nice time with the whole family.  My sister and her boyfriend flew in Sunday night to surprise us in Santa suits and left early on Christmas morning. I was so happy to see my sister and spend quality time together.  It’s also been nice having my dad here and we’ve been playing games, eating out and enjoying each other’s company.  Posting some pictures from the holidays.  

Also, CCX media did another follow up video as I finished chemo.  They did such a wonderful job! Grateful to be able to continue to share my story.  You can view it at this link: https://ccxmedia.org/news/theres-still-hope-woman-recounts-breast-cancer-battle/

Moving onto my second line of treatment is not what I wanted, but moving to the next line of treatment is to be expected. Stage 4 cancer is a beast, and each line of treatment is keeping me alive.  I am grateful I have options, and I am still here today.  But moving onto my second line so quickly is changing my perspective immensely.  Not that it wasn’t changed before, my life just feels sped up so quickly, and currently doing some soul searching on what I want in the next steps of my life.  Prioritizing what’s important, making a list of things I want to do, travel to, people to see, bucket list items.  Understanding what I want to do about work, among other things.  We really don’t know how much longer we have left to live, and for me, that time is starting to feel much more condensed and approaching sooner than expected.  The blessings in all of this are, noticing that, being able to spend more quality time with loved ones, and actually living every day like it’s my last.  Maybe If this didn’t happen, I wouldn’t get to experience everything I am or everything I will get to, and maybe then, I will just have lived more than not having cancer at all.

Hope everyone had a wonderful Christmas with family and friends and has a safe and Happy New Years.  This year will be one for the books. I believe it, and I will live it.  

Love, Stacy