How do you live with Stage 4 cancer?
26 with 3x recurrent endometrial stromal sarcoma. The last flare-up happened in June and I am one month post-op (total abdominal hysterectomy and bilateral oophorectomy). My surgeons are happy with the work they did, and they managed to take out all the little nodules invading my peritoneal cavity.
However the histopathology came back and after speaking with my onc, I am terrified. He calls it Stage 4 (!!!) and is certain the cancer will come back if I go off my hormone blockers. He does think I can have a good and normal life and I’ll be fine as long as I am good with the medications. But what happens when the cancer becomes resistant to the meds?
“We‘ll cross that bridge when we come to it.”
That’s not terribly reassuring. I’m free of visible cancer but there’s always a chance that the microscopic cells could pop up and wreak havoc, and it’s preventing me from thinking about my future. I am scared to daydream about having a family in the future. Scared to make travel plans. Scared to look forward to getting a promotion at my job.
I don’t know how to get my head past this. Even my surgeons said that I should go on to live normally (“Live like you don’t have cancer anymore!” but I don’t know how. They don’t want to say I’m cured or in remission but my onc thinks I have a great prognosis if I just stay on my adjuvant treatment for at least ten years but that seems like a really long time? I’m a mess.
You are asking exactly the right questions! Has your doctor ordered a test called Next Gen Sequencing? It is usually covered by insurance for high risk situations and can uncover the gene mutations that are driving the cancer to grow. The results can identify treatments that follow "standard" therapy if it fails and to know that there is something next. The results also might be useful to identify clinical trials. The test takes 3 weeks to come back so if your doctor says they'll order it later, tell them that you want it now.
As an oncologist, I had a patient who was on hormonal blockade for 20 years, and only after she stopped it, the cancer came back (she quickly resumed it of course). That said, there are new innovative treatments, that over time will be proven to help. For example, combinations of CDK4/6 inhibitors (like palbociclib, ribociclib, or abemaciclib) are now combined with hormone blockade in breast cancer patients and work better together. Although doctors don't yet know if this combination will also work for ER+ endometrial stromal sarcoma, it is likely to work, and in the next years, doctors are likely to prove it. Get yourself an opinion from an oncologist and a radiation therapist, in addition to the surgeon, preferably from an NCI accredited cancer center (if in the US - https://www.cancer.gov/research/infrastructure/cancer-centers/find) in order to get your best treatment strategy (and back-up plan) in place.
Jason Sager, MD
