POSTED
BY SK
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…..
SK
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