Update on Next Steps - 8/27/25

Thought I would give an update of where things are at for me since I got my scan results.  There has been a lot of appointments and waiting to understand what’s next for me.

I had a biopsy of my breast and the supraclavicular lymph node that lit up on the scan.  We wanted to see if the subtype has changed and if the lymph node is positive for cancer. 

Unfortunately, the lymph node came back as cancerous, which means the cancer has spread to a brand-new area.  This was quite surprising to me as I thought it would be just inflammation.  That and a brand-new area of progression in my body is very concerning.  The subtypes for each of the biopsies came back as still HER2+, so essentially the tumors are just progressing as HER2 and not due to a subtype mutation.  We are still waiting to understand any genetic mutations of the tumors, but that could take a few more weeks.

In addition to the biopsies, I went to the Mayo clinic for a 2^nd opinion, this was before I got the results back of the biopsies.  Apparently, there is a clinical trial right now that is taking oligoprogressive (meaning progression in a few areas) MBC patients that progress on prior treatments and treating them with stereotactic body radiation therapy to obviate the need to change systemic therapy (called BOSS).  This would mean radiating the areas that progressed so that I could continue to be on my 2^nd line of treatment.  Prior to getting the biopsy results back I was considering this trial but couldn’t get in for a consultation appointment until Sept. 8^th.  Dr. Lassi’s next step for me prior to the biopsies was to do the same thing, to radiate those areas. So I had a choice between the clinical trial and getting radiation locally.  The benefit of the trial is that I am benefiting future patients to help them understand if radiation is effective at all since it is not standard of care.  At the time, I ultimately decided to get radiation locally because I was able to get in for an earlier appointment at M. Health Fairview.  I would rather not wait since these tumors could continue progressing. 

Then I got the results back of the lymph nodes and just another wave of devastation washed over me.  At this point I wasn’t sure what my next steps would be and if I could still get radiation.  However, I met back with Dr. Lassi yesterday and she said she would still like to try and get the radiation for me if I can, but if not I would need to switch to my third line of treatment which would be Xeloda, Herceptin and Tucatinib.  The problem now is that I have three areas of progression.  The lymph node area also has a cluster of nodes so not sure if this would actually count as 1 whole area or multiple areas.  If I did radiation locally, insurance may not cover it as it usually needs to be 2 or less spots to get radiated.  She mentioned I should see a certain doctor for the radiation consultation and that appointment I couldn’t get scheduled until Sept. 5^th.  Then there is the Mayo clinical trial.  I originally told them I wasn’t going to pursue that trial since I would do radiation locally, but now I have to pursue it as an option in case the local radiation doesn’t get approved.  So I am in the works of getting screened for that and see if I even qualify anymore considering the area in my lymph node.  I still have that appointment on my calendar for the 8^th so I will wait to see if I can get in with M. Health Fairview first and do that or see if I can get on the trial. 

I hope that I can do the radiation because I want to be on Enhertu for longer.  I don’t already want to switch to my third line and get new drugs that might change side effects for me.  Dr. Lassi had to be real with me yesterday and she mentioned she was discouraged by the progression.  She said if I end up progressing within 6 months on my third line, then I would have about 1 to 2 years left to live.  This was incredibly hard to hear.  But this is the reality.  She is hopeful I can maybe live for 7 to 8 years at most but given my prior progression it seems more unlikely.  I am just devasted with this kind of news and having a hard time just living right now. 

So things are up in the air as far as next steps but we have somewhat of a plan.  I try for radiation or move onto my third line.  I am still going in for my next Enhertu infusion this Friday.  I am trying to stay hopeful but it’s been really hard for me to do so.  I am angry, sad, frustrated, all the emotions.  I don’t want to die. I want to live, and I don’t deserve this. 

I would appreciate all the prayers as I wait for these appointments to come and start the next journey of treatment for me.  I will keep everyone posted after these appointments over the next couple weeks.  Hold your loved ones close.  I love you all so much!

Love, Stacy