Snazzy title I know! Accurate none the less.
I have had a swack of appointments in the last couple of weeks along with a very exciting – yet nerve wracking – surprise phone call.
As we know the last post-surgical update I did at 4 weeks and we were THRILLED to be officially “cancer free” (or clear margins and negative lymph nodes).
I am now 12 weeks post double mastectomy and it has been a bit of a whirl wind. Healing wise everything is going really well. I have developed hypertrophied scars (they are thick, ropy and red) and some slight end of range tightness is persisting but overall things are going really well.
Early in August my radiation oncologist called me with great news – I wouldn’t be needing radiation! My initial joy quickly flipped my stomach into unease. Chemo – Surgery – Radiation. This was the plan. There seemed to be no question that I would be doing radiation FOR SURE after surgery. “How does that feel Haylie?!” I can hear the excitement in his voice. He called on a break specifically to tell me the good news.
Honestly? It makes me a little (a lot) uneasy.
We scheduled an appointment via phone to discuss on August 31. This ended up also being the day that my daughter had her tonsils out. Super exciting life we lead in 2020 it seems!
He was phenomenal. We talked about all the indicating factors, the discussion had regarding my case with the entire team and other specialists that work in this area. Ultimately it boils down to three main things:
- I had clear margins on my tumors: I see often people discussing the size of the margin. According to my rad onco the amount of margin doesn’t particularly matter as long as they are clear. Additionally the “close” margins were noted on the posterior side (closest to the chest wall) and are thus more likely to cause side effects of radiation to the lungs
- Tumor size is less than 5cm: my original tumor shrunk and responded really well to chemo (yay!)
- Negative Lymph nodes: there is actually some studies being completed now regarding possible over treatment for those that had positive lymphnodes pre-chemo and negative lymph nodes post chemo and the effects of radiation. Apparently the thought is that in that instance radiation is “over treatment” or that the effect of radiation is greater than the benefit. Since I had negative nodes to start and negative nodes to end this didn’t make sense as a factor for me
Taking the time to go through the main deciding factors (of course I believe there is additional nuances that vary from case to case), was super helpful in easing my mind. I asked about my risk of recurrence. When I first met with my rad onco my risk of recurrence was over 30%. My understanding is that radiation reduces the risk of recurrence by approximately 50%. So a big difference at the beginning. My new risk of recurrence based on my pathology and response to treatment including surgery is under 10% – FANTASTIC! With a change of 5% or less with radiation the side effects that are possible far out weigh the potential benefit.
I still find I am worried about recurrence. This shadow in the back of my mind. In doing some digging it appears that there is a not uncommon issue for women to have recurrence to metastatic breast cancer (like my grandmother) in those that were Stage 1-3 at initial diagnosis. Scary. Freakin’. Stuff.
Breathe. I know I can’t live in fear. We will do everything we can to reduce the risk of recurrence while also balancing negative side effects. Radiation side effects can include: permanent heart/lung damage, lyphedema (chest, arm), soft tissue sarcoma, to name a few… I’d be happy to avoid those!
Next I started zoladex injections. It’s a hormone blocker meant to put me into menopause. This is a time-release capsule administered subcutaneously (below the skin in the fat, not into the muscle) in the belly. When the nurse was explaining it, it goes right into the same spot I did my self-injections of grastofil. The needle is massive. Do NOT be surprised at the size of it. The nurse mentioned that “many people get numbing cream for it”. Um yeah. Would have been nice to have before this appointment. The injection didn’t hurt as much as I thought it would but definitely wasn’t pleasant. I had a second injection 1.5 weeks ago and you better believe I picked up the numbing cream. Much more pleasant.
I had the pleasure of meeting my plastic surgeon to discuss reconstruction. There are MANY options available for women but after doing a lot of research, having a good cry feeling overwhelmed at first, I have my mind set on a DIEP FLAP procedure. This is where they take the abdominal fat tissue and harvest it to make foobs (fake boobs) if you will. I am excited that I am a candidate but I need to have my oophorectomy first to remove my ovaries so I can stop the *sUpEr FuN aNd AwEsOmE* zoladex injections.
I am fortunate to be feeling a “light at the end of the tunnel” for the poop shoot that 2020 has been.