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Endometrial cancer

Hillary shares her courageous story

Can you share a bit about your story and how you discovered the endo cancer?

When I was first diagnosed with endometrial cancer, my sister and I just looked at each other and said, ‘ don’t know quite what to do with this.’  We had just come out of the Gynaecologist’s rooms and were sitting in the care after receiving the news.  Our family had been lucky as no one since our great grandparents had been diagnosed with any type of cancer, so we didn’t know what to do with the information or how to react.  I guess we were numb.

I had been referred to the Gynae specialist by my GP where I had gone to discuss some bleeding that had started.  As I had already gone through menopause, without any problems, this was a surprise.  Like most unpleasant things, I tried to ignore this but after a few weeks I thought I had better get it investigated.  Of course, my first action was to check ‘Dr Google.’  What I found was that the bleeding wasn’t normal and it should be checked out but in most cases wasn’t anything to worry about.  So off I went to the GP who then referred me to the Gynae specialist and for an ultrasound.

Luckily, the specialist had a cancellation and I was able to make an appointment within a week.  The specialist reiterated that the bleeding wasn’t normal but probably wasn’t anything to be concerned about.  The ‘C’ word was mentioned but only as one of a number of conditions, most of which weren’t serious.  The specialist was very reassuring and referred me for a D&C, which he thought would, in all likelihood, fix the problem.  Some tissue would also be sent off for pathology tests just to make sure there was nothing more serious.

Once again I was fortunate and was able to book the D&C at the local Hospital shortly after I had seen the specialist.  Breezed through the D&C and thought nothing more about it as I didn’t have an appointment with the specialist for a few weeks.  However, a week later I received a call from the specialist’s secretary to tell me that they had found some cells of concern from the D&C.  the specialist wanted me to have a CT scan and come in to see him in the next couple of weeks.  Even then I wasn’t really alarmed, which was a bit surprising as I had worked for 40 years as a radiographer and knew all about the nasty things people could have.  Equally though, I also knew that a lot of the time, there was nothing to worry about.

My sister and I went back to see the specialist who gave me the news that the pathology tests had shown that I had Grade 1 endometrial cancer that did not appear to have spread outside the uterus.  The specialist said we had caught it early and the prognosis for cure was good or as he put it, “on the cancer spectrum you’re not at the end where you need to dash home and put your affairs in order; you’re at the end where it’s early and we can do something about it.”

As the type of surgery I needed couldn’t be done at the local Hospital, I would be referred to the Cancer Centre at Liverpool Hospital.  The specialist’s secretary contacted me a couple of days later to tell me Liverpool didn’t have the capacity to take me so I was being referred to the Gynaecology Oncology unit at the Royal Hospital for Women (RHW).  I had received the diagnosis on 15th November and had an appointment with the Gynae Oncology unit by 23rd November, so things were moving relatively quickly.  This was good as it didn’t give me time to dwell on things.

Meeting the staff of the Gynae Oncology unit was one of the bright spots of this journey.  Everyone was extremely kind and helpful.  I was rather surprised that my surgery was booked for 13th December as I thought it might be delayed a little due to the effect Covid was having on the health system.  After that visit things happened in somewhat of a rush as I had to have various tests done and attend a pre-admission clinic.  Once again, this was probably good as it didn’t give me or my sister time to dwell on things.

My operation went well and the staff on Macquarie Ward  were excellent – so friendly and helpful, nothing was too much trouble.  I went home two days later just in time to be one of the stops on my work’s Christmas Car Rally.

Everything progressed smoothly until early January when I started to become unwell and seemed to have some sort of bug.  Thoughts immediately went to Covid, so we went to get tested but fortunately it wasn’t that.  What it was, was a pelvic abscess at the site one of the lymph nodes had been removed.  So, I ended up back in Macquarie Ward again, this time for eight days while the infection was brought under control.  The ward staff were again wonderful, as were all the staff in RHW and Prince of Wales Hospital, where I went for various tests and procedures.

I went home feeling much better although the following few weeks meant many visits to the local GP, the Gynae Oncology unit and even a few days in the local hospital to sort out some other ramifications of the pelvic abscess.

However, eventually all the infections cleared up but it was a difficult few months.  Every now and again I have to remind myself that I am a ‘cancer survivor’ as the cancer got lost among the other health issues.  My sister and I didn’t even celebrate the news that they had got all the cancer as I received this information while in Hospital having the abscess treated.  In fact, I feel a bit of a fraud referring to myself as having survived cancer as it was so quick between diagnosis and surgery.  Without the issues that resulted from the infection, I would think that having cancer had been a dream.  Also, I am lucky in that the cancer was found early and endometrial cancer is slow-growing type and it didn’t get time to spread anywhere else.  So now I don’t have to have any chemotherapy or radiotherapy and my next follow-up is November 2022, which is a big plus!

How has my life changed since my diagnosis?

I have to say that life hasn’t really changed much, although all the doctors’ and Hospital visits that I had to go to made life very busy.  When I think about it though, the biggest thing was realising how much I meant to my sister.  We moved into a caravan when I retried with the plan that when my sister retires in a year or two we would go travelling, as well as having somewhere to live.  My sister insisted on coming to every doctor’s visit and spent as much time as possible with me while I was in Hospital.

I guess this has made me appreciate her more and consider the effect any illness has on the people around you.  I sometimes think the whole process was easier for me than it was for her as all she could do was sit and wait, or bring me clean pyjamas!

What is the one piece of advice you would offer to someone who is going through their own cancer journey? 

I think the best piece of advice I can give is to let someone share the journey with you.  I had my sister who was great throughout.  She came to every doctor’s appointment. experienced many different waiting rooms while I had various tests done and heard every word that was said in relation to the cancer.  This was important as sometimes I was so focussed on one thing and missed the rest.  It also meant that I didn’t have to repeat everything and risk forgetting to tell her something important.

What have you found to be the best support?

The support from my sister was really important when I was so sick with the infection.  Having someone else share the journey with you means you’re not alone and there’s someone there to see the funny side of doctor’s visits and stays in Hospital!

What do you wish more people knew about gynae cancer?

I wish more people knew that ovarian cancer is not the only gynaecological cancer.  That’s the one you hear about most often and other types, while they aren’t ignored, don’t get the same amount of publicity.  Even with my health background, I hadn’t read or seen anything about endometrial cancer.  Perhaps equal time could be given to educating people about all forms of gynaecological cancer.

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We are the Australian Gynaecological Cancer Foundation.  The only organisation that focuses on funding laboratory research into all eight gynae cancers.

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