Jo’s Story

16 Sep 2014 by Krystal Barter
Jo’s Story

My name is Jo, I’m 52 and a mother of two beautiful crazy boys (seven and nine years old).

I’m also a nurse with over 30 years experience. I don’t know if I have a BRCA gene mutation but I have a strong family history of breast, ovarian and bowel cancer on both maternal and paternal sides. For as long as I can remember cancer has been a part of my life. One of my first memories is going to visit my aunty (fathers sister) in hospital following her bilateral mastectomy when I was three or four years old.

My mother was first diagnosed with breast cancer when she was 41 when I was in my final year of nursing training. Fortunately she found the lump in her right breast early and a small discreet cancer was removed by lumpectomy. Family members continued to be diagnosed with cancer in both sides in the family, two of dads sisters, mums sister (early cellular changes) and a number of both mum and dad’s cousins were diagnosed with breast cancer. My grandmother’s sister and cousin were diagnosed with ovarian and breast cancer, a scattering of prostate cancer and generations of bowel cancer.

Mum was vigilant with breast checks, mammograms and ultrasounds. All accompanied with the usual dread that went with callbacks and biopsies was followed by the deep sigh of relief when the all clear came through. In 2000 mum (age 58) was again diagnosed with breast cancer on routine screening. This time the breast cancer was in the left breast. Again she was very lucky as she had contemplated delaying the annual check up for few months as she was busy and going on a holidays. Surgery, radiotherapy and tamoxifen followed. The outcome was good though if she had not rung to see if Breast Screen could squeeze her in for an appointment, the outcome would have been very different. We were blessed to have her with us for another 9 years.

I develop breast symptoms at the age of 43, and had an intraductal papilloma detected on mammogram, ultrasound and biopsy. I had the lump removed and fortunately it was benign. I had another two similar breast lumps removed from both breasts over six yrs. The first breast surgeon I saw discussed genetic testing but I decided against it mainly due to the impact a potentially positive result would have on my mother. Mum had a number of health issues and would worry that she would pass them on to her children. Having a test that confirmed this would have been difficult for her to deal with, especially as she was not in the best of health at that time. I was also concerned that if the results were negative that I may not be as vigilant with screening. I spent the next seven years living with the “high risk” label and informed by a growing number of medical staff that with my family history and previous breast symptoms it was a matter “of when not if” I would get breast cancer.

In 2011 I saw a different breast surgeon for the the removal of my last breast lump. At the post op follow up, she in the nicest and most professional way indicated that I was an idiot for still having my breasts. She was surprised that with my family history, seeing what my mother went through, three operations for breast lumps, my nursing background (including Oncology and Women’s Health), that I had two young children and I was not getting any younger. I didn’t think that having preventative surgery was an option for me but by the time I left her surgery I had decided what I needed to do this for for my children, my partner, family and for myself.

When I went home and told Tracy, my partner of 17 years, she sat very quietly, taking it all in. Her first words were “I know what I’d like you to do, but the choice is yours. I’ll support you through what ever you decide”. The decision to have preventative surgery was an easy one for me, finding information on the what, when and where was the difficult part. I googled, read research articles, watched videos and discussed options with Tracy. The information was often technical and while I had a great support team in Tracy, work colleagues and medical team, I often felt isolated. By chance during this time we happened to see Krystal on TV talking about her experience and Pink Hope. I found all the information I had been looking for and it came with a human touch, voices of experience with all the emotions I was feeling.

I chose to delay the surgery until my youngest had started Kindy when both boys were at the same school and old enough to have a better understanding of what was happening (read control freak between the lines). Just over a year later I returned to my breast surgeon (who was pregnant and as I declined the offer of another surgeon added a few months on to the surgery date) to discuss the next step. Referral and appointments to the plastic surgeon lead to referral to the neurologist for review as I’d had a stroke in 1999, blood tests etc. more googling and research and eventually a date set for six months later for surgery.

Jo O 1

Six month became three and time was flying. Pink Hope support groups became a haven for a control freak who had so many questions. I was put in touch with the amazing, warm and wonderful Nadene, saviour of my sanity and willing victim of my email stalking. Nadene had her operation six months before me, same type of surgery, same surgeons and same hospital. It was a blessing to ask all those silly little things that come up during the last months and weeks.

On the 1st of March 2013 I had my preventative bilateral mastectomy with TRAM flap reconstruction. I am glad that I did as pathology on my breast tissue showed diffuse lobular carcinoma insitu, (not cancer per say but a strong indicator of future breast cancer) and early cellular changes that my surgeon said would have developed into cancer with in the next three years. I had a mostly uneventful recovery, home in 11 days with one drain in tow. Back to work by week seven.

It is an honour to be a volunteer for Pink Hope and I feel very privileged to be able to provide information, advice and any support I can to such a wonderful group of women.

Knowledge and support are the keys that get us through the challenges life throws at us.



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