I knew yesterday was going to be hard just wasn’t prepared for how hard. I haven’t walked into the cancer agency since my follow up a year after treatments from breast cancer three years ago. What started the chain reaction though was signing in. Instantly I was handed the blue cancer duo tang (aka the cancer bible) and I’m pretty sure my heart stopped for a moment and I started panicking. From past experience every cancer patient gets a ‘cancer bible’ with important information and with strict instruction that EVERY time there is an appointment the book comes too so any important information doctors, etc. may have for you can be put in it. Basically a go to for emergencies, questions and services at your fingertips 24/7 while you’re being cared for. Being handed that duo tang basically rang every warning bell in my brain that just maybe things weren’t going to be as straight forward as I thought and I mentally started falling apart (don’t worry I didn’t have a big dramatic melt down in front of everyone, just inside my head). Plus, while sitting and filling out paperwork the amount of doctors, nurses and administration staff we recognized made it become a surreal moment. How grateful I am for a husband who holds onto me, loves me and encourages me.
Finally the appointment and finally a professional telling us what the pathology report findings were. Basically as we already knew Endometrial Carcinoma (uterine cancer), Stage 1A, Grade 1, not metastases breast cancer (a whole new cancer), and had not spread to any other parts of the reproductive organs. Bottom line best case scenario. However, there is a grey area. Normally (why can’t I ever be normal) when a women starts having the issues I was having a biopsy would have been done, cancer found, surgery would have taken place with everything removed. Due to the emergency I skipped the biopsy, had the surgery but didn’t remove the ovaries and then cancer was found. So the grey area is the ovaries no right or wrong decision but the decision needs to be made do I keep them or do I remove them. Here are the facts: as a woman under the age of 40 I had a 25% chance of the cancer showing signs on the ovaries but I didn’t, my doctor looked at my ovaries during surgery and they were in perfect condition. If there isn’t an immediate sign of ovarian cancer this now means that I have a 2% chance of getting ovarian cancer in the future. What does this 2% mean to me? Do I feel it’s enough to warrant removal? If I choose to have the ovaries removed I face the following; another invasive surgery, instant menopause, unable to use hormone therapy (due to breast cancer). Then due to early menopause (approximately 10 years too early) I then start the process of bone loss, the importance the ovaries play for other organs, etc. So is 2% worse it in the end? At first I thought yes. If normally they remove everything then shouldn’t I do that? However, maybe there is a reason why I’m not normal! The trigger to my decision - as soon as she mentioned bone loss I knew the answer was keep them (trust me the other stuff was a concern to – instant menopause I’ve done that once already short term mind you but it was kind of scary). Why that you wonder? I already have a weakened bone structure due to the high dosages of chemo and radiation. What does my future look like? First we need to start with a base line so I need to have an ultrasound of my ovaries so we know what they look like now and then regular follow up ultrasounds to make sure there is no change. Any hint of a change and they are out. I get to see my gynecologist for an examination every 3 months I believe for 3 years but that’ll be confirmed at my next appointment. Also, because endometrial cancer is linked to colon cancer I now have a much higher chance of getting colon cancer in the future which means I instantly qualify for screening at the age of 50 (I believe that’s the age when they start screening). Having said all this my decision not to have my ovaries removed isn’t written in stone, at any time I feel different then how I do at this moment I can have them removed. That’s it. A terrifying few months to learn I’m now just fine and thankfully the new ‘cancer bible’ isn’t needed!
Unfortunately though this experience isn’t quite finished. As the day/evening progressed I became more and more drained, it was like I had been holding my breath for the last 2 months and finally the air was slowly escaping to the point that I felt like a crumpled heap on the floor - pure mental/emotional exhaustion. I may have been told I’m just fine but I’m not. I’m mentally/emotionally messed up more then I think I ever have been, I don’t recall feeling this way with breast cancer but I think being diagnosed with a second cancer only 4 years after the first one and at the age of 38 has done something to me. It’s made me realize my health and my family are the two most important things right now and need my number one attention right now. Running around after other people isn’t as important, it’s not my priority and unfortunately there for a while it was. A big issue is that I don’t trust my body. In fact I’m mad at my body and I think it’s going to take a little while to regain confidence in that area. To help me make sense of all of this I’ll be working closely with the hereditary department for the next few months as I collect more signatures for medical information to be released from family members to build a stronger background for myself, current and future generations.
It’ll get better and one day, like breast cancer it’ll just become a memory with stories to tell. The following words from a song keep coming to mind, ‘count your many blessings name them one by one’. I can tell you every day I count my blessing, I have been blessed with much and I know that! I know I’m loved by many and that really does help make each day that much easier.
