Breast tissue issue

When they removed my breast tissue during the bilateral mastectomy, they tested the specimen and found that it was CANCER FREE. My heart sings just reading that out loud and despite daily thanks for this incredible blessing, I sometimes find myself still processing what just transpired over the past 9 months, thinking “did that just happen?”

But then there’s the Peripheral neuropathy (numbess) in my left toes; the fatigue; the faint but constant ringing in my ears; the unwelcomed facial fur that now lines my jaw (which is at least thankfully blonde); the low white blood count and immunity; and the saline filled Ta-Ta’s, all of which quickly remind me that the past 9 months did indeed happen.

When they removed my breast tissue during the bilateral mastectomy, they also found something unexpected: blood cells. Blood cells belong in bone marrow, not breast tissue. Apparently when bone marrow cells develop outside the medulla of the bone,  its called Extramedullary Hematopoiesis or EMH.

My breast surgeon obviously wants to get to the bottom of what caused this EMH in the breast tissue before I have my exchange surgery. She needs to be able to rule this out in case that this was the actual problem that caused all post surgery complications last time, rather than it being due to my low immunity.  Just a side note, the exchange surgery is when they take out my tissue expanders and replace them with permanent implants.

Due to the fact my breast surgeon who has performed 1000’s of surgeries/mastectomies hadn’t seen this before, she referred me to a specialist hematologist. He basically explained in a long winded and confusing way, that they weren’t 100% sure what caused the cell growth in my breast tissue. He basically put it down to 2 possible causes:

  1. Malignancy in the bone marrow – metastatic cancer growth forcing other blood cells to move to other parts of body ie) breast tissue
  2. Drug induced – possibly caused from Neupogen injections aka granulocyte colony-stimulating factor (GCFS) which stimulate blood cell growth

It’s amazing how flippantly he discussed option 1. I had imagined this possibility but hadn’t expected to hear it. My heart sank as I thought about my Grandad whose breast cancer metastasized to the bones, taking his life and also of my Uncle who died at 29 from Leukemia, which is a blood related cancer. Despite the fact Leukemia isn’t genetic nor is “metastatic” cancer, when you’re sitting in a Dr office hearing these possible causes, it’s hard not to think twice.

Luckily for me, the specialist thinks option 2 is the most likely suspect hence we’re not too concerned.

He gave me a print out of a specific Case Report: Extramedullary Hematopoiesis (EHM) in Breast after Neoadjuvant Chemotherapy for Breast Carcinoma.

In this report it details 2 case studies of breast cancer patients who also had this EHM found in their mastectomy specimen post chemo, most notably after administration of granulocyte colony-stimulating factor (GCSF) which is what I’ve had dozens of times to help boost my white cell production to fight infection.

In order to be sure, they need to monitor my blood for next 12 months, ordering monthly blood tests. If there are any spikes or changes in the next 3 months, then I’ll have a bone marrow biopsy to really see what’s happening. But I don’t think this will eventuate as i’m also thinking it’s from the GCSF/Neupogen immune booster shots I had throughout chemo, and up until last week. Even two days ago my white blood cells were really low again. I finished chemo 3 months ago, but immune system is still fucked. But my oncologist has said no more Nuepogen booster shots – lets see how my body responds without the GCFS and hopefully it’ll slowly increase on it’s own.

I’m not investing any real concern as the medics team think it’s from the drugs I’ve been taking. But it would be nice to have it sorted with no more balls in the air, because despite best effort to control my mind, it can sometimes have a mind of its own.

So what now?

The exchange surgery is tentatively booked for early October, pending the next 2 monthly blood tests which my hematologist will review.

If all looks fine and my levels are A.O.K then surgery will proceed and I’ll have my permanent new tear drop implants & life can start to continue as normal with less Dr visits – only every 4 months for the next few years.

The alternative? If levels seem odd & EHM appears to still be an issue then hematologist will request a bone marrow biopsy to shed light on what’s going on. My surgery will be delayed as they need to be certain about what’s going on before they put me under the knife again.

But that won’t happen, I can feel it in my waters.


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