The Beginning

My mum was diagnosed with Stage III ovarian cancer at the age of 50, 3 months before we were due to go on a family holiday to Florida. My mother said to the doctor “cut me open and take out what you can so I can get on with my life, I’m going on holiday in 3 months”, and that’s exactly what the surgeon done, removing tumours from both ovaries and leaving a tiny nodule on her liver. Unfortunately my mum didn’t make the holiday due to having to have urgent treatment and when we returned she was waiting for us with my dad wearing a huge hat- her hair had started to fall out.

On the way back to my parents that day I stopped off and purchased some hair clippers and as we sat in the kitchen shaving her head my younger brothers friend walked in, said hello to my mum and me and carried on like it was the most normal thing to be doing. My sister and I later went with my mum to try on wigs, arranged through Macmillan at our local hospital.  My mum picked out 2 different styles, although I only remember her wearing them once, she opted for headscarfs which she found more comfortable.

It was this holiday that got my mum the diagnosis when she did. She had been dieting ready for the holiday and although she had lost weight her stomach was still bloated. After much nagging she went to our family GP and was seen by a relief nurse who asked my mum if they had ever tested her CA125 levels by way of a blood test. My mum had been to the doctors on a number of occasions over the previous couple of years and her complaints/symptoms were put down to the menopause.

CA stands for Cancer Antigen.  CA125 is a protein that is a so-called tumour marker or bio marker, which is a substance that is found in greater concentration in tumour cells of the body, in particular in ovarian cancer cells.  The normal value of CA125 is between 0 and 35 units/ml.  When my mum was diagnosed with ovarian cancer her levels were in the thousands.

Ovarian Cancer is known as the “silent killer” as the symptoms are often mistaken for the menopause, as with my mum for some time.  If Ovarian Cancer is detected at an early stage (when the cancer remains confined to the ovary) the 5 year survival is up to 90%. However, only 15% of cases are diagnosed before it has spread.

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My mum was truely the strongest woman I have ever known and kicked Cancers butt that first time. She endured numerous rounds of chemo along with a new trial drug to help reduce the risk of the cancer returning. I had not long moved 150 miles away to start my chosen career in the Police but would make the journey down every few weeks and we would all take it in turns to sit with my mum during her 5/6 hours of treatment – not once did my mum sit there and feel sorry for herself, she was always wearing the biggest smile and one of her much preferred headscarfs.

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At one appointment a consultant mentioned that my mum was still fairly young to have ovarian cancer. My mum explained that a number of relatives on her side of the family had died of ovarian cancer and some breast cancer. My mum would trace her family history as a hobby – I spent many days in my childhood walking round graveyards all over the south of England looking for family relative names on gravestones (I did say relatively normal family!).

The nurse mentioned, which was then, a relatively new genetic test for BRCA1 and BRCA2 – human genes that produce tumour suppressor proteins which help repair damaged DNA and therefore play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that it’s protein product either is not made or does not function correctly, DNA damage may not be repaired properly and as a result more likely to develop additional alterations that can lead to cancer.

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A Previvor’s Story

Previvor’s – Individuals who are survivors of a predisposition to cancer but who haven’t had the disease.

I was born on 11th September 1981 and named Stephanie Tuppence Rolfe by my parents (yes they named me Tuppence).

I am one of 5, 3 brothers and 1 sister and grew up in a relatively normal household with my parents (my mum had her moments).

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In 2010 I found out that I had the BRCA1 Gene Mutation, increasing my risk of developing breast cancer in my lifetime by around 80%, about 7 times greater than that of a woman who does not have the mutation.  It also means that my risk of ovarian cancer is significantly elevated, around 44%  (although mine has been put at around 60% due to my family history), versus just under 2% for the general population.

My sister also tested positive although being 7 years younger she has a bit more time on her side.

My sister is the reason I started this blog. She has watched and listened to me go through all the tests, appointments and more recently surgery. My sister, like me and many others search the internet looking for information and pictures of people who have been through the same and/or similar procedures and some of it is pretty daunting and scary.

So far I’ve been lucky and cannot thank my amazing Surgeons, nurses and the Breast Care Team at both Good Hope Hospital, Birmingham and Solihull Hospital enough. They have not only done a fantastic job but have given me incredible support and reassurance throughout.  Having read many stories on the internet I know now this isn’t the same for everyone.  By sharing my story I wanted to give some reassurance and comfort to my sister and others.

This blog isn’t just about my journey and the decisions I made and continue to make but also that of my mum, the most incredible woman I ever met and the person that saved my life.

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Nothing Lasts Forever

My mum shared the news with us that she had the BRCA I gene and explained to my sister and I the increased risks associated. We both decided to get tested straight away, going to our respective GPs to get referred to see a specialist.

In the meantime my mum finished her treatment and went into remission and my dad surprised the whole family including partners and grandchildren that we were all going on another dream holiday to Florida. It was nearly 3 years since my mums diagnoses when all 17 of us flew off on holiday.  Unfortunately, it wasn’t to be the magical holiday we had all dreamed of as 5 days in my second eldest brother, Luke collapsed in the middle of Magic Kingdom and passed away from a heart condition, Cardiomegaly (enlarged heart) that he wasn’t aware of. My brother was just 30 years olds, fit and well, married with 2 young boys aged 2 and 4 years and was a serving Police Officer in the same Force as me.

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Devastated is an understatement, however being the close family that we are we got through those first few days till we were able to get home.

We had been home no more than 10 days, I was on my way to say my final goodbye to my brother before the funeral when my cancer Genetics Consultant, Doctor Kai ren Ong rang as I had cancelled our appointment.  She told me she had my test results and asked whether I wanted to rebook or take the results there and then over the phone – being the impatient person that I am I opted for the latter.

After getting the news I was positive I rang my mum and said to her “I’m sorry to tell you this but you are my mother, I’m not adopted, I have the BRCA gene”. My mum began to cry. I began to laugh and said “what are you crying for mum. You’ve just saved my life, because of you I’m not going to die of breast or ovarian cancer”.  My mum laughed and told me she would see me soon and that a vodka was needed (we shared many great times together and vodka often joined us too).

I had already researched the BRCA gene and options available to me to reduce my risks and had already made my mind up that should I test positive I would opt for risk reducing surgery.

Three months later my mums cancer returned, I truly believe that the devastating shock at the loss of my brother brought that cancer back.

I’m Going To Be A Millionaire

imageMy first visit to see my Cancer Genetics Consultant Dr Kai ren Ong was very positive and she explained everything to me. I told her I had made my decision to have a double mastectomy and eventually remove my ovaries. I was 29 years old and hadn’t yet even thought about having children, I was enjoying my life and concentrating on my career having just passed my Sergeants exam (I’m pretty sure my brother was up there helping me).

I was very quickly referred to see a breast consultant and was soon having yearly breast screening by way of an MRI scan (not great for someone who is claustrophobic) and blood tests to check my CA125 testing (although this test alone cannot diagnose ovarian cancer and should be followed up with other tests such as an ultrasound).  The test results could also be effected by other conditions such as endometriosis along with other such cancers of the gynaecological system,bowel and lung.  There is currently no effective ovarian cancer screening methods and it has ben recommended that I have my ovaries removed at around 40 years of age (I have quite a few more years left before I do this) and so for now I will continue with the yearly blood tests.

I saw a number of breast consultants over the next few years as well as a psychologist and plastic surgeon. It was during a visit with a female breast consultant when she looked at me like I was completely mad and said “you do understand you only have about 85% of getting breast cancer at some point in your life and not now so I don’t see the big rush”. My reply “well if you told me I had an 85% chance of winning the lottery at some point in my life I’d say I was going to be a millionaire at some point and I’d rather that happened sooner rather than later but I don’t wish breast cancer anytime soon so I’d rather get rid of that risk”. She very quickly finished our appointment and I never saw her again – thankfully.

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I was given information about all the different options available and decided that I would opt for a risk reducing bilateral nipple sparing double mastectomy with immediate reconstruction using implants and strattice reconstructive tissue matrix. The strattice (pigs skin- very apt with my job) works like an internal bra, cradling the implant and allowing some of the natural droop of a normal breast.

It was first developed for use in general surgery such as hernia repairs and breast reconstruction in the U.S. and was granted approval for use in Europe in 2008. Later that year the first pigskin breast reconstruction was carried out in the UK.

 

 

My Journey Begins Without My Best Friend

My mum sadly lost her battle with cancer on May 7th 2013 at the age of 58 and less than 3 years since we lost our brother. My mum showed amazing courage to the end and I was lucky to have spent a fantastic weekend back home with a ‘famous Rolfe family BBQ’ where I cooked my mum her favourite red snapper fish which she devoured. That same weekend my mum sat me down and said “Steph I need to talk to you”. I knew what was coming as she had sat down with my 2 brothers and sister individually already. She told me that she wasn’t scared, at this point I couldn’t hold the tears back and cried telling her that I was, that I couldn’t imagine my life without her in it, I had already lost my brother I couldn’t lose her too. My mum held me trying to reassure me that everything would be ok, telling me how she had shown my dad how to cook a roast (Mum always done a big roast for the whole family every Sunday) and that she had picked a song she wanted at her funeral and the CD was upstairs at the side of her bed, the rest she said was up to us kids what we wanted. I never thought that when I left that Monday that I would never see my mum again. It was the following day my dad rang me to say that she had passed away.

I miss my mum and brother dearly and there isn’t a day that goes by that I don’t think of them.

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Nearly 6 years since I found I had the BRCA gene I had a phone call to inform me that they had a date for my operation – in 9 days time!!

I’m not sure of the average wait time for this operation but I had a few problems along the way, my first consultant left the hospital and then later my notes went AWOL. After this I made sure I contacted my consultant to chase up appointments.

So with just over a week till my op I had so much to organise, first was to tell my boyfriend hat we wouldn’t be going to Portugal in 12 days time and second was to inform work, who have always and continue to be really supportive. Then I rang my dad, nan, brothers and sister.

 

 

If It’s Good Enough For Jolie

It is always best to be prepared and have some home comforts with you during your stay in hospital. This will help lessen the stress and take away some of the worry and anxiety prior to surgery.

I immediately began taking Arnica 30c Pillules (2 small tablets 4xday. I also used the Arnica cream over my breasts and surrounding area. I had very minimal bruising and swelling and believe both the above really helped.

I also started taking ABC Plus Mulivitamins and Minerals.

I purchased all the above from Holland and Barretts and continued taking/using them for 2 weeks post surgery (although I now take the multivitamins daily)

Having read Angelina Jolie’s Blog; A Patient’s Journey: Angelina Jolie @ pinklotusbreastcentre.com, I made some more lavish purchases – Cutagenix Professional Skin Care Emulsion which allows oxygen to reach the skin – this was expensive at £80.00 for a 30ml tube but if it’s good enough for Angelina Jolie it’s good enough for me. (Effortless Skin online)

And the best buys – V- shaped pillow from Argos at £7.99 and 2 x Drain Dollies – surgical drain bags created by Charley Wood – these items were my life savers! These can be purchased at http://www.draindollies.co.uk for £6 with 10% of all sales going to Genesis.  Charley emailed me personally after I purchased the drain dollies and we have kept in touch since. It was nice to speak with someone who had been through the same thing.

I done a big shop and stocked up on food and essentials such as washing powder, toilet roll etc.

I then prepped some of my favourite meals and froze them – this also made it easier for my boyfriend (although he is turning out to be quite the chef).

My place was scrubbed till I could smell the bleach walking up the pathway and I stacked bedding in sets to make it quick and easy, again for my boyfriend to change the bed (he is quickly becoming perfect husband material).

At my pre-op I was given Hibiscus Medical Scrub which I used for 48 hours prior to surgery and continued to use after. This helps kills off any bacteria.

What I Packed;
Most importantly a comfortable zip front support bra – I purchased 2 from M and S. One a size bigger due to swelling and one my normal cup size.
2 x PJs with button front fastening (I was actually home less than 24 hours later but best to be prepared);
Dressing gown and slippers;
Something comfortable to go home in (I actually left in my pjs and dressing gown);
Throat sweets – I had a sore throat for 3 days following the operation;
Lip balm – my lips were quite dry from the oxygen mask;
Drinks in beakers – I bought 2 toddler cups with straws and pre filled with juice;
Squash – hospital water isn’t the best;
Snacks – I woke up at 4am starving – lucky my brother had brought in some chocolates that were within arms reach;
Wet wipes, roll on deodrant, shower gel, toothbrush, toothpaste, dry-shampoo, hair brush and bobbles and moisturiser;
Hand sanitiser;
Magazines, books, change for tv card – you may be in a few days;
Any medications you are on – I was given a medication bag at my pre op.
Laxative medication or prunes – after long surgery and heavy pain meds you become a little constipated.

Good luck xx

After The Op

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I was home less than 24 hours after surgery. You will be sent home with drains, to prevent swelling caused by fluid collection, exercises, pain relief and antibiotics.

I had 1 drain each side but I do know some people that had 2.

I was shown the drains at my pre op and given leaflets on how they work and what to do if they stopped working – mine were redivac drains so done the job for you but again I know some people that have self drains. I had to record my output once a day at the same time each day – they will be removed once the output is 30ml a day over 2/3 consecutive days.

I went down to theatre at 9am (in my very fetching green bed socks) I felt really calm and relaxed about it all, the last thing I remember was the anaesthesist telling me to thing of something nice and me telling him that I was meant to be going to Portugal on Sunday (I had cancelled my holiday prior to my operation).

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My Plastic Surgeon Doctor Khalil had noted down my boyfriend’s number that morning and rang him at 3pm to tell him that I was out of surgery. My boyfriend tells me now that he sounded ‘well happy’ with his work.

It took another 2 hours for me to go back to the ward, I felt pretty dizzy and sick and kept apologising to the nurse sat with me in recovery for being “totally unsociable”.

Back on the ward my boyfriend and dad, who had travelled up and stayed for a few nights came to see me and as soon as they walked through the door I was sick. My dad said he got me another sick bowel which I then put on my head!

My older brother and his partner popped in as well and left the much needed chocolates, although they had already opened them. They also left a load of magazines that came in handy when I eventually came round properly in the early hours of the morning.

At some point one of my consultants came to see me, I was still pretty high from the morphine, although I do remember asking him if I had the ‘real implants’ to which he confirmed that I did and my reply – “sweet doc”. My Plastic Surgeon had explained to me at my pre-op that I may have to have expanders as opposed to implants and this would require having the expanders filled every few weeks till my preferred size when they would remove the valve and the implant would then be left in. This all depended on how good my skin was once the breast tissue was removed as by inserting an implant that pressed against the skin too much could cause the skin to die.

My consultant did visit again the following morning to check how I was doing and I got my first look at my new beasts, which didn’t look too bad. I was pleased to see that the incisions were underneath the breasts and there wasn’t too much bruising. I must have been too busy looking at my new beasts as I forgot to ask what size implants I had – these definitely looked bigger than before.

I didn’t get a lot of sleep that night, the nurses were checking my vitals every half hour till the early hours and I was extremely thirsty. Although it’s good to keep hydrated it has its drawbacks I needed the loo a lot, which is not easy when you are unsteady on your feet and weak from the anaesthetic, morphine and having not eaten for 24 hours.

Thankfully, as I said I was allowed home that day and all I was craving was fish and chips and a can of coke – I am easily pleased !