I recently wrote a post about how I plan to tackle my ovarian cancer risk. I intended to have yearly blood tests and ultrasound scans, however my plans have now changed.

I had a tumour marker blood test and the pelvic ultrasound and these investigations were absolutely fine, very quick and not at all invasive. However a recent meeting with the geneticist at Newcastle Centre for Life has resulted in me declining these investigations. 
The Geneticist spoke with me about the effectiveness of these investigations; confirming what I already knew about the number of false positives and missed true positives. He also confirmed that my ovarian cancer risk is currently very low due to my young age. 

He ensured that I was very welcome to go ahead with the testing, and that it would be readily offered to me every four months on the NHS. Despite this, I chose not to accept.

This was a very personal decision and I'm sure most women would accept any screening offered, and rightly so. 
But I'm tired of the tests and the medical appointments, the constant screening and subsequent worry. For weeks after the blood test I thought that every letter hitting the porch floor was the dreaded results. 

And more than that, I feel like such a drain, I have had more medical appointments in the past 9 months that I had in the first 20 years of my life! I am not a cheap member of society at the moment and I am very aware of the money I am draining from my future employer...the NHS. I know that is ridiculous but it is how I feel.

I am a clinician, I base my decisions on the facts obtained from the research, this is how my future medical practice will work and it is also how I make decisions regarding my own healthcare. 
The research into ovarian screening isn't looking good...in fact there are questions as to whether it even works in young women. Regular screening causes emotional distress, not to mention the psychological impact of a false positive and subsequent unnecessary investigations.

So the research is telling me it will be of very little benefit and I really don't want to undergo unnecessary tests every four months! My ovarian cancer risk doesn't become significant until my late 30's and at that point I hope to have completed my family and be considering the surgical removal of my ovaries. 

So thank you but no, I will take 10 screening free years please, 10 years where I no longer have to worry about breast cancer and I don't yet have to worry about ovarian cancer. After the long and involved mastectomy process I think I deserve them. 

This morning I had my MRI scan; this is done within the 6 months prior to prophylactic mastectomy to ensure there are no cancerous cell changes in the breast. If there were changes detected these would need to be investigated before the surgery went ahead (if cancerous cells were found lymph nodes might have to be removed along with the breast tissue to ensure that the cells don't spread). 

I was quite excited about the scan; I have never had one before and it would make a bit of a change from my current schedule of cancer lectures, killing myself over assignment deadlines and seemingly constant medical appointments.
So off Sean and I went on our little day trip. 

I'm sure you all know this already but...an MRI scanner is a very big, powerful magnet that looks like a doughnut and makes an awful lot of noise.

You get wheeled into the hole of the doughnut and the magnet aligns the hydrogen atoms in the body...by some work of magic that I can only marvel at, this makes them detectable by the scanner and an image is produced. 
Quite amazing and I'm not going to even pretend that I understand how this happens (Wikipedia is a medics best friend).

I was asked to turn up for my appointment half an hour early as quite a lot of prep is required. 
I had been sent a questionnaire to fill in; this asked me various questions but was basically establishing that I had no metal in my body that might result in me being stuck to the magnet, which obviously wouldn't be good.

I then went into a changing room to undress from the waist up. You will be asked to turn up wearing trousers that contain no metal zips/buttons etc. I wore leggings (also make sure that your knickers don't have little metal buttons/bows/faffy bits!) but if you didn't have anything suitable you could just take your trousers off as well...You have to put a hospital gown on and this covers you down to your knees anyway.

Once I was dressed up in my hospital gown I had a cannula put in my arm (a needle with a port that the contrast can be injected into). It was placed in the crook of my elbow...where blood is normally taken from. This wasn't any more painful than having blood taken, the needle is secured and remains in the arm throughout the scan.

I then went into the scanning room; two nurses were present, one was setting up the contrast liquid that would be injected into the cannula half way through the scan and the other was sticking cod liver oil capsules on my nipples...no really.
Apparently this is a neat trick they have developed...it allows them to locate my nipples on the MRI images. 
Sean thinks they were winding me up...send your answers on a postcard!

Once the nurse had finished with her cod liver oil I had to get on the bed, I kept the hospital gown on and just let it fall open at the front. For most MRI scans the patient will be lying on their back but for the breast MRI you have to lye on your front.
The table has a hole for your face...much like a massage table...but it also has two holes for your boobs!
Once I had manoeuvred into position the contrast fluid was connected to the cannula in my arm (ready to be injected by remote control later during the scan), an emergency squeeze ball was placed in my hand (I was told it squeeze it if I felt unwell and someone would come rescue me) and some headphones were put over my ears (the machine is very loud so music is played into these as a distraction, the operator of the MRI also talks to you over these). 

Everyone then cleared out and the scan began. It wasn't as loud as I though and didn't last very long...I only got through the first five songs on the Now 80 album!
About ten minutes from the end the contrast was injected though the cannula by a remote control...this was really weird...the liquid felt cold and I could feel it spreading up my arm through my veins. This wasn't unpleasant...it was just a bit novel and quite a good lesson in vascular anatomy (I know I'm a sad medic).

The two nurses then came back into the room, helped me off the table and removed my new cod liver oil nipples. 
Apart from being a bit stiff from laying still I felt fine and as soon as the cannula had been removed I was free to go.

The results will be logged by this evening and will be with my surgeon within the week, if nothing is wrong the surgeon will discuss the results at our scheduled appointment in April. I presume if they find anything abnormal I will be notified much sooner.

I'm not going to worry about what the scan might reveal...it would be a waste of emotion and quite pointless. 
It will more than likely be clear but, as I'm only 20, my breast tissue will be quite dense so it might be that something looks suspicious but is actually nothing to worry about. There is also the chance that I have cancerous cells present...this is unlikely at such a young age but not un

I will just have to wait and see...and remember that no news is good news.

BRCA1 doesn't only increase my breast cancer risk; I also have a lifetime ovarian cancer risk of about 60%. 
This is the statistic that scares me, ovarian cancer is a silent killer; it is notoriously hard to detect and patients with ovarian cancer are far less likely to survive than those diagnosed with breast cancer.
But there are things I can do to tackle this risk.

Today I had an appointment with the gynaecologist. I really didn't know what to expect from this; would we be talking about my options? or going straight in for the internal exam?
Turns out it was a bit of both, the clinic was running 45 minutes late so the gynaecology registrar seemed to take advantage of my medical knowledge and kept explanations brief. I was fine with this; I know my risk, all the options available to me, the risks and benefits of each and I know exactly what I want to do. 

It was reassuring to have the registrar agree with and support my plan for tackling my ovarian cancer risk. 
I will have yearly blood tests and internal ultrasound examinations. The blood test is a tumour marker and the ultrasound will allow the doctor to view my ovaries and detect any anatomical changes. 

I will have my ovaries removed aged 35-40, at this time I will have completed my family and won't be inducing menopause too long before its natural onset. 


After our little chat the gynaecologist asked if she could conduct an internal exam.
This involved me undressing from the waist down and laying on a medical couch with a blanket over my lower half.
The registrar then looked inside my vagina with the aid of a speculum (a plastic tool that looks like a duck bill and opens up the vagina, making it possible to see inside). After this she used gloved hands to feel my ovaries by placing one hand inside and the other on my lower abdomen, this allows her to press my ovaries again my tummy and fell their shape and size.

This wasn't something I would like to do every day but it wasn't all that unpleasant. It was never painful, the speculum was slightly uncomfortable but over very quickly.

I had my blood test straight after my appointment with the gynaecologist and now I just have to wait for an appointment to have the internal ultrasound scan.
I don't really know how I go about getting the results...I presume, because of the sensitivity of the information, an appointment will be made to discuss them? I guess I will just wait and see!

On Wednesday I was due to meet with my surgeon to be measured for implants and ask any outstanding questions.
When I got to the hospital it turned out he wasn't working and I would be meeting his registrar instead. After Sean and I had walked all of 5 minutes from our house to the hospital we were very disappointed!

I didn't really like the registrar; she was nice enough but a bit more abrupt than my surgeon. As I said, I had loads of questions, I asked a few of the more pressing ones but her answers were curt and it seemed she was rushing me so I didn't ask the others.
The lovely breast nurse was there again though and her presence was reassuring as ever. She tried to fill out the registrars answers and this made me feel a bit happier with the whole consultation.

After I had asked a few of my questions the registrar took me behind a curtain where I took off my top and bra and put on a very flattering hospital gown. She then measured various parts of my breast...from my collar bone to my nipple, the width of each breast etc. 
Then I got dressed again. I thought she would be measuring me like they do when you have a bra fitted...back size and cup size, but the surgeon will pick size of implant based on my current bra size. She said they take these measurements to help the surgeon deicide what type of implant to use, rather than what size.

After all this the registrar said that my surgeon would probably like to repeat these measurements when he next saw me anyway, so the whole thing seemed a bit pointless, but hey ho!

She also mentioned that he might want to consider using expanders before inserting permanent implants, when I last saw him he seemed certain that this wouldn't be necessary. I was really hoping to get the whole thing done with just one surgery so I hope that the registrar was wrong! I have another appointment to see the surgeon on the 25th April, so I will clarify that point with him then. The nurse has told me to ring ahead and ensure that my surgeon is actually in the building! 

After the appointment I wandered down to town to do a bit of shopping. I decided I would pop into John Lewis and see if they had any post-surgery lingerie. After wandering round a bit aimlessly, not really knowing what the hell I was looking for, I decided I needed some help.

Thankfully the wonderful John Lewis lady knew exactly what I needed and found me a nice soft sports bra. She was so nice to me that I left feeling a bit tearful, that is the first surgery related item I have bought and it made it all seem real. 
I'm actually going to do this, in five months this will all be over and I will never have to worry about breast cancer again. I'm excited and scared and sad and happy all at the same time, its quite exhausting!

Last week myself and my partner Sean went to the RVI to meet my breast surgeon for the first time.
I chose my surgeon after seeing pictures of the results he has achieved. It is important to choose the right surgeon, you need to be on the same page and want the same things but most of all you need to like them!

I was a bit nervous about the consultation, even as a medical student I find surgeons scary! But I also had a stereotype of 'cosmetic surgeon' in my head. I really didn't want him to waltz in all botoxed and beautiful and to insist I go bigger!

The whole thing was a bit bizzare, a receptionist showed me and Sean into an empty consultation room (a very snazzy one mind!) and we sat there for about 20mins before the surgeon turned up. I expected him to waltz in surrounded by 20 medical students House style... fashionably late!
When he did turn up he shook us both by the hand and sat down...very unremarkable. 

I was glad to see the nurse was with him, she is just lovely and her presence was very reassuring.
He spent time explaining the procedure, the risks involved and the results I could expect. He also gave us plenty of time to ask questions. We didn't feel rushed or pressured into making a final decision and both surgeon and nurse were happy for us to ask all the questions we had prepared. 

Thankfully he didn't fit my 'cosmetic surgeon' stereotype, he was a wonderful, intelligent and empathetic man. He did however talk to my boobs for a good portion of the consultation...something that made Sean and I quite uncomfortable but I guess it come with the territory!
I have become quite aware of my boobs since embarking on this journey and I actually considered changing my top before we went to the consultation because I thought it made my boobs look bigger than they are!


A second appointment was made for January when I would be measured for implants, as I want to remain as close to the same size as possible it was decided that we would leave it until this date to order implants, assuring a closer match.

He appreciated that I had a very short time frame for the operation and recovery, to put me at ease he set up a date for surgery of the 12th June 2012. He did however explain that this would be subject to change (he hadn't yet booked his summer holiday!!) but jokes aside I understood that this wasn't something he usually did and I appreciated the understanding he showed.

Before seeing the surgeon I would suggest writing down all the questions that pop into your head, you will find you have a lot to ask and no question is silly. Don't fell like you are wasting his time, he will have set aside about an hour to talk with you so make sure you get your monies worth!

A couple of weeks ago myself and my partner Sean went to meet the specialist reconstructive surgery nurse at the Newcastle RVI. 

We spent about an hour talking about the various surgery options and which she would recommend for me. After looking at my upper body shape the nurse recommended implant only reconstruction, potentially with strattice. 

This is the option that I was looking into as it is the simplest, with the shortest time on the surgeons table and normally has the shortest recovery. It doesn't, however, give the most natural results in both look and feel. The nurse showed us some implants and explained that, since changing to the more solid silicone, they are completely safe and the silicone cannot leak out as previously believed. She also explained that implants will deteriorate over time, meaning I would need an operation to replace them in 10 - 20 years.

I now have to decide whether to keep my nipples or have them removed and reconstructed a few months after surgery. If the nipples are kept there is a small risk of cancer developing in this area. I will write a post about this decision at a later date. I will also write a more informative and in-depth post about the surgery option I choose once I have seen the surgeon.  
 
I came away from the consultation feeling very positive. The nurse never once patronised me, told me I was too young to make a decision like this or told me it was all just a silly idea. These are all things that my previous genetic counsellor made me feel whilst going through genetic testing for the BRCA1 mutation. The vast majority of genetic counsellors are lovely, professional, knowledgeable people, I just got a bad egg.