Friday, 17 October 2014

My Sister's Story....


I've contemplated for a few days whether I should write this blog for a number of reasons. My cousin yesterday suggested I blog this, therefore I wanted to share this story with the permission of my sister. If in the future one of you experience the same thing then maybe this post can help you, i apologise for the long blog post.....

This post concerns my sister and here is a little background regarding her – she’s 32, the second eldest of my siblings, married for 14 years, most loved by the whole family especially my 7 nephews and nieces. They probably love her more than their own parents because she does so much for them. She was even was present for 5 of their births and became the birthing partner to my sister and sister in law. Unfortunately she does not have her own children yet, when she does she will be the most amazing mother ever.

About a month ago my sister received some devastating news that she was being tested for ovarian cancer....

In May we went to Pakistan where she went for a private consultation with a gynaecologist. Upon the tests that were carried out, one was a pelvic ultrasound which showed a small cyst on her left ovary measuring 3cm. Her gynaecologist in Pakistan suggested she goes back to the UK and to request re-scan to monitor if the cyst has gone away or reduced/increased in size. Upon returning from Pakistan in May, she went to her doctor and showed her all the medical reports and asked for a re-scan.

This ultrasound appointment did not come through till the end of August and it was not done at a main hospital but a scan facility within our town. During the scan the sonographer became quite alarmed and had to do 2 types of scans, one was a pelvic ultrasound the other was a vaginal ultrasound. The sonographer first wanted to check if the ultrasound was showing an actual cyst or if it was her bladder. The reason being in 3 months the cyst had grown from 3cm to 11cm in size. The cyst also showed a dark mass within it.

The sonographer referred her back in emergency to her GP and the GP broke the news that the scan is showing possible signs that this could be ovarian cancer.
The GP then fast tracked her to the hospital as an emergency referral to the ovarian cancer specialists at the hospital.

When she broke the news to us that she is being tested for ovarian cancer it hit the family hard but my sister is the most courageous person I know she took the news in her stride and told us all to stop worrying she will be fine. In her own words she said if its bad there’s nothing I can do about it but, in the meantime I am not going to worry about it till further investigation is done.

Fast track on the NHS means she had to wait another 2 weeks for the appointment to come through this has taken us to the middle of September. During this 2 week wait, my sister started to experience severe stomach pains, fatigue, and loss of energy and a general feeling of being unwell.

My sister also works at a doctor’s surgery as a receptionist. This proved really lucky for her because there was a whole team of doctors that were able to give her a second opinion on what her doctor has suggested and to ensure all the necessary tests were carried out. This was important as her own doctor forgot to carry out the main blood test for cancer CA125 which she was able to request during her hospital consultation.

Her experience at the hospital with the consultant

The consultant that she was sent to at the hospital was not the main specialist. The consultant took one look at her details and became quite annoyed that my sister was referred on a 2 week emergency referral. This was because, she was 32 years old and did not fit the NHS text book category of someone that could have ovarian cancer namely being 50 plus in age and we do not have a history of ovarian or breast cancer in our family.

When the consultant reviewed her doctor’s note she was not convinced with the initial scan results and decided to perform her own ultrasound. Up until this point my sister said she made her feel like she was wasting her time and was acting like a hypochondriac.

Only once she performed the 2 scans again, the consultant toned down her rudeness a notch but still she remained very abrupt and generally not very professional in the way she handled that consultation. i wish I was present at this appointment I would have bought the consultant down a few more notches. If she is abrupt I can be the Queen of Abrupt.

She referred my sister for a CT scan which took another 2 weeks for the appointment to come through.

In the meantime my sister’s pain was getting worse and she was 3 weeks into her sick leave prescribed by her own doctor. The doctor surgery she works at also has a doctor who is a trained gynaecologist. This doctor was extremely frustrated with the whole process and called the main consultant at the hospital and asked him to take on my sister’s case. The consultant said he was not able to at this stage as his other colleague was dealing with it only if my sister wanted a second opinion after her consultations then he can take over the case.

At this point my sister my family and most of all I was extremely frustrated. We all made the decision to see the main consultant privately through BUPA. I remember my brother coming to my sister saying enough is enough; I will take you myself and pay privately to have you treated. That was the first time my sister broke down in sheer frustration my brother broke down too and I had to console both of them.

Following the CT scan results we were told the dark mass in the ovary is benign Alhamdulillah,. The cancer blood test also came back normal as well as a cervical smear test.

BUT the first consultant was still not willing to operate and sent a letter stating I have requested a re-scan of the cyst in 4 months. This was the icing on the cake for all of us.

My sister made the decision to go privately to get the cyst removed
The doctor at the surgery she worked at became very persistent with the main consultant at her hospital explaining to her the frustration at this whole situation and the way her case being handled. The main consultant then asked for a referral to him where he would take over the case on the NHS. He stated himself he can do the operation on the NHS paying privately she would get the same treatment he can give on the NHS.

In all this experience our saving grace was this doctor who pushed for the right tests to be carried out and who tried her best to help my sister. The first consultant was not willing to operate but there are major risks with this most importantly if the cyst bursts this could prove fatal.

My sisters symptoms were the following everyone is different and there are a lot of resources available on line which can shed more light on symptoms:

Bloating in stomach
Severe cramps during your periods
Irregular/heavy bleeding
Back pain

My advice to everyone is if you feel there is something not right please go to your doctor and ensure the necessary tests are carried out these are as follows:

Pelvic & Vaginal Ultrasound
CA125 Blood Test

These 2 are the main tests that can rule out ovarian cancer. If you are still not convinced then request a CT scan. Unfortunately we have become numbers to the NHS so unless you are persistent nothing will be done.

I personally was shocked at the waiting times from the NHS I have never heard 2 weeks to be the standard emergency wait time for something as serious as cancer.
My sister is very lucky as she had a lot of professional help available to her and she is even luckier that the mass in the cyst is benign.

I also came across this charity that is raising awareness for ovarian cancer research and reading the stories of those that did not survive it is heart-breaking. I will definitely be contributing towards their cause to carry out research.

Apologies again for the long post…..


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