The outpouring of love and concern has been overwhelming in the past few weeks since my diagnosis’. I am grateful for my dear family and friends. I’m feeling so loved and cared about which is for sure the upside.
The downside is that the whole thing is very disruptive to all the current Day to Day plans you had in place. With this being my 50th year, it is also not the way I wanted to plan my celebratory year. However, it is what it is.
Four years ago I began a journey to be tested for the BRCA1 / BRCA2 gene. My maternal family tree is pretty riddled with breast cancer; my Grandma passed away in her 60’s from it, my Grandma’s sister as well, my Mom fought and lost a courageous battle in her 40’s and died at 50 and her twin sister – my dear Auntie Helen is currently fighting that same painful fight in her 70’s. So, to put it lightly, I wanted to be proactive.
After full gene panel screening, I was classified in high risk and a double mastectomy was recommended even without testing positive for the BRCA genes. When I told the oncologist, Dr Noelle Davis that I don’t have the gene, she said “Well, you don’t have that gene, but you definitely have a gene!” Hopefully one day we will know what “that” gene is.
In February of 2017, I began the journey to get an elective double mastectomy. At my first appointment, Dr Davis found a lump. She also let me know that this surgery would not be elective but it was a necessary medical surgery for me and that she would be performing it.
It was a long 7 weeks of tests and results until that lump was confirmed benign. . I felt a new lease on life as I awaited an appointment with a plastic surgeon from Dr Davis’ team in Jan of 2018.
On a random day in late September I got a call to come in for a breast MRI… tomorrow! Which was quite unsettling. Who gets a next day MRI? I learned weeks later that this test had been missed in February in my screening and so was being completed now.
On October 20th as Paul and I were packing for a trip to France we were headed on that afternoon, I got a call from my GP Dr Erin Hasinoff who needed to see me that morning, before we left. Sigh. Once again, I learned I had a small abnormal mass in my right breast and would need a biopsy.
An ultrasound guided biopsy was scheduled in November with Dr Kidney. During the exam she was unable to get to the mass found on the MRI as it is located close to my rib cage and was too posterior to be seen by this method. However, lucky me, she found a different abnormality and biopsied it. Two weeks later I learned it too was benign. I was then referred back to MRI at BC Cancer Care to have the biopsy performed there. If you are not familiar with this screening method, YouTube it. It is unbelievable how they can do this.
I remember that morning, Dec 15th as I wasn’t feeling well. Two nights before I got a sudden pain on the left side of my abdomen. I honestly thought I needed to poop, or fart! You see my daughter Kenzie had been diagnosed with Ulcerative Colitis in early July and I had really had red meat since the diagnosis. Early that week we had gobbled up a beef tenderloin and I remember saying to Kenzie when the pain suddenly set in, “See, I just cannot digest red meat.”
Once I finished the 2 hour MRI biopsy, which came with a full blown anxiety attack this time, I said to my oldest daughter Alyx that I needed to get back to the North Shore and go to the emergency in our neighbourhood.
Around 11pm that evening a kind doctor came to let Danika and I know that there was a 7cm mass that was showing either attached to or behind my left ovary. He mentioned that it may be malignant but that an ultrasound was needed.
I am learning there are many great things about BC health care. One of those things is how they like to make you comfortable and go home with your pain meds to rest if there is a long wait for a diagnostic test. This was particularly helpful as I headed home with firm instructions that I could attend our skating club’s annual ice in the morning if I stayed fairly still and kept the hydromorph going. Danika assured him that I would not put my skates on. He seemed sceptical.
My ultrasound was early in the afternoon and again by later that evening we had promising news that the mass appeared benign but would need to be surgically removed. Dr Carolyn Donnelly suggested we schedule the surgery with Dr Michele Lipp for Wednesday rather than wait for an emergency surgery time to open in the next two days. The pain meds were holding me so Paul and I opted for Wednesday Dec 20th for surgery to remove my ovary and my Fallopian tubes. This was recommended as I no longer need them for childbearing and Fallopian tubes are where most ovarian cancers begin growing. Who knew?
The next couple of days were sleepy and restful and kind of amazing. I have three daughters and three step daughters and they picked up every loose end I had and completed all of my shopping and organizing for me. My oldest stepdaughter Lindsay and I have at times had a strained relationship and the warmth, care and concern that she provided over these days filled my soul.
My surgery went exactly as planned with just one hiccup. By the time they went to remove the tumor, it had ruptured. I felt immediate relief when I woke as the pain I had been experiencing was completely gone. Now home to rest, recover and enjoy Christmas.
On Dec 22nd I received a call to go in that afternoon to see my breast oncologist for the results of my MRI biopsy. I went there expecting the worst as all the other times they told me it was benign over the phone. What we learned is that I have a ductal carcinoma in SITU. It’s a breast cancer cell that is sitting in a milk duct but has not began to divide or grow. It is considered Stage Zero. Due to my family history, Dr Davis plans to do a double mastectomy in the next few months. I will see the reconstruction surgeon in the next couple of weeks.
All good, say farewell to 2017. I felt like a fucking warrior!!! Breast Cancer I got you before you got me! Na Na Na Na Na!
Christmas was full of love and hope and joy in a special way in my heart that I had never felt before. I was so glad the apts and the screenings and the waiting to hear results would finally be over.
On January 5th I had to go into the gynaecologist’s office who had performed my abdominal surgery. She needed to have a discussion with me. (Insert breath holding, again). Paul came with me and that morning we learned that What had ruptured and was removed from my abdomin was a 9cm tumor confirmed in pathology to be Adult type granulosa cell tumor – a very rare ovarian cancer. Dr Lipp said that the prognosis was good for this type of ovarian cancer 70-80% survive and that more surgery would be needed however all of my care would now be with the BC Cancer team under a Gyn Oncologist.
For the next few weeks and up to today, I have read, called, researched and reached out to anyone anywhere who knows anything about granulosa cell tumor also referred to as GCT. The first line of attack on the disease is very clear – surgically remove the uterus, cervix, Fallopian tubes, ovaries and the omentum along with taking washings of my abdomen and biopsies of my nodes. The will do this surgery in March. Why March and not today you ask, me too, well it is because GCT is a very slow growing cancer so apparently there is no rush as well as a lot of people far worse off than me ahead in the line.
The mystery of treatment lies in what we do after this surgery. 1 in 3 women have a reoccurrence and of those women 50% of them do not survive. Reoccurrences usually happen 3-5 years out for most however some reoccurrences have know to be 25+ years later. Reoccurrences appear as small tumors on the abdomen, bladder, colon, liver, spleen… it doesn’t seem picky where it might land.
Many women like myself who is currently staged at 1C have chemotherapy after their surgery, many do not. There are mixed reviews about the effectiveness of chemo to prevent a reoccurrence. I will continue to research this in depth.
My mastectomies and reconstruction will be pushed ahead to later in the spring now.
So many people have reached out and so many do not know this troubling information. I wanted there to be one place I can update as it is a bit daunting to keep the communication loop going.
I also recognize that you may want all the details or little to no details. You will always get all the details from me. I think it helps make it all real for me. Or at least I think it will feel real eventually.
I am a really strong person who comes from a trail of strong women. I will continue to live from a grateful, joyful and inquiring place in my heart.
Thank you for coming on this journey with me.#igotthis