My journey through diagnosis and treatment & the emotional roller coaster.
My symptoms:
I'd travelled to a dog competition and my back flared up. I have osteoarthritis and a bulging disk, despite having a great management plan involving yoga, massage, natural supplements and chiropractic treatments, sometimes it "acts up". Usually if my normal treatment plan doesn't work then I will resort to a short course of anti-inflammatories.
This time the pain persisted for several weeks, and started to wrap around into my pelvis. It wasn't severe but enough that sometimes I felt like I couldn't take a deep breath. I was actually at work when the thought struck me that this was a symptom of ovarian cancer, so I immediately made an appointment to see my GP.
I asked for the blood test for ovarian cancer. My GP was reluctant at first given I don't have a family history, but to her credit (she could have stood on her "I'm the doctor" high horse) she agree to run a number of tests as well as a pelvic and kidney ultrasound. My urine test came back with blood in it, so the doctor suggested to not worry about the pelvic ultrasound and just do the kidney one, also my bloods had come back normal. I'm actually very healthy.
This whole time I'm getting all my jobs done and preparing to leave for my overseas trip which included hiking Mont Blanc.
The Diagnosis:
One week before my departure date I had the ultrasound and the scan revealed a large cyst on my right ovary. Google indicated that large is between 5-7cm, mine was actually classified as "giant" at over 10cm. The GP order a CT scan and MRI, when trying to book these I was told they couldn't be done till then next week! I played my "I'm flying to Italy in a few days" card and they managed to get me in on the Wednesday, the day before I'm to fly to Sydney to depart on the Friday.
I got the phone call from the GP on Thursday (never a good sign) and she said she was referring me to a gynaecologist. When I asked if I could still travel, she indicated that there were risks but didn't definitively say no.
My daughter (who was the only one I'd confided in at this point, as I didn't want anyone to worry about me while I was traveling) suggested I had better contact my Travel Insurance company. Which I did, and they said I'd be covered because it wasn't pre-existing but that I needed and "Fitness to travel certificate" from the GP.
At this point I was extremely upset and confused and remember saying to myself "I just want someone to tell me what to do!" I know in hindsight that answer seems blatantly obvious but we don't always see clearing in the moment.
Whilst waiting for a return call from the GP as to the fitness to travel certificate I rang a friend who is a very knowledgeable sonographer and also a very matter of fact person. Her answer was "cancel the trip, Italy isn't going anywhere and get this sorted", I will be eternally grateful to her for clarifying the situation and giving me a clear and honest direction.
Of course when the GP rang back she stated she wouldn't provide the certificate anyway, so the decision had been well and truly made.
As you can imagine I am equal parts disappointed, angry and scared.
By the next week I've seen the gynaecologist and I'm booked for a "complex laparoscopic surgery" and had agreed to the removal of both ovaries and my remaining fallopian tube. I'd previously had an ectopic pregnancy and a hysterectomy.
I return to work for a couple of weeks whiling waiting for the surgery. The pain had subsided, and apart from the bloating and frequency of urination etc (I had all the symptoms of ovarian cancer except weight loss), I felt quite well.
The Treatment:
I arrived at the private hospital early in the morning, after fasting from midnight. I was first up, and the surgeon had expressed some concerns for the risk of adhesions on my bowel from my previous surgeries.
The surgery went well, and several hours later I was in my room feeling very tired and nauseas (I always do from anaesthetic) and discomfort in the shoulders from the gas they pump into your abdomen. The 5 incisions were not very painful at all.
I was released the next day. This and the next day were probably the worst days as far as discomfort go and again it was more the shoulder pain and on and off nausea. I've had 3 previous open abdominal surgeries, so was well aware of what to expect. For that week I stayed in my PJ's and focused on developing my meditation practise. I also went for short walks around the paddocks. This was within my capabilities and as I was relatively fit before the surgery.
One week later I phoned to pay the balance of the account & made the follow up appointment for about 5 weeks, at this stage the pathology hadn't come back. I was a little surprised and if I'm being honest upset when I received a call the next day to see the Gynaecologist on the Monday.
I fluctuated between thinking that she just wanted to clear her books, so to speak, and freaking out that the pathology had shown something adverse. Baring in mind that the whole time the bloods were normal and I'd been assured that the cyst didn't look sinister and the operation had gone very well.
My mum and I went to the early morning appointment on the Monday and the Gynea advised that the pathology showed "Serious Borderline Ovarian Tumour" or SBOT in both ovaries, and she was referring me to a Gynea Oncologist at John Hunter Hospital in Newcastle. She also tried to convince me not to worry or stress too much.....easier said than done ehhh. But I understood what she was saying & ironically googling it was reassuring.
In my layman's terms, SBOT, haven't made their mind up whether to be benign or malignant and although they certainly can turn nasty they are easily treated with surgery.
In hindsight it was very lucky that she'd removed both ovaries and the remaining fallopian tube otherwise I would have been back in surgery!
That Monday was a rough day, I cried on and off all day and felt mentally and physically exhausted, but I knew I'd regroup the next day.... and I did. In my second week of recovery I started a short and gentle yoga practise and continued my meditation. I firmly believe this and the support of a few close confidants and family were instrumental in me staying strong.
I spoke to the Gynea Oncologist on the Thursday ( 2 weeks post surgery) and she reaffirmed that although not the best news it was not the worst by far. As I like to say there are so many levels of worst news. She & her team were to review all the pathology themselves as a precaution, and if it is SBOT then there would be no further treatment except for follow up six monthly ultrasounds for two years and yearly for five years.
Whilst this has been a very emotional, stressful and challenging 6 or so weeks. I also have a belief that things happen for a reason. If they hadn't found the cyst and I'd travelled, I could have been in serious trouble overseas, removing the cyst lead to the discovery of the SBOT before it could turn nasty.
The main reason for me writing this, is to encourage people, especially women to be aware of the symptoms of ovarian cancer, to be active in their health and advocate for themselves. It is not always the GP's fault, they have some 20,000 diseases to consider, with most people not being affected by the majority of them. Also they don't know your body like you do, I think we intuitively know when something isn't right, and it is our responsibility to advocate for our own wellbeing.
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