Plastic fantastic

I have a date for surgery! I went to see the plastic surgeon today and also had my pre-op. I have to say that the highlight of my day today (and yes I am joking) was standing topless in the middle of a room having photos taken of my boobs. I think the last of my dignity got up and walked out the room, waving as it went!

I lose my boob (and more importantly the tumour) on the 5th of February. As the results of my genetic testing for BRCA mutations were negative, they won't be removing the other one at the same time. However, because I still have a 25% risk of another breast cancer (as calculated by the genetic counsellor) I am opting to have the other one removed as soon as possible to reduce that risk. It won't be done at the same time as the bad one, as the priority is treating the cancer and the more surgery I have, the greater the risk of infection, which would delay my radiotherapy.

I will be having what is called a skin sparing mastectomy with immediate reconstruction with an expander implant. An expander is essentially an empty implant which gets pumped up gradually to stretch what skin is left after the mastectomy, until there is enough skin to put in an implant equal to the other side. So instead of a titty squash, I'll now be having a titty stretch!

As my sentinel node biopsy showed one out of five nodes as having cancer in, I'll also be having what is called a level two node clearance - all the lymph nodes removed from my armpit and chest. To be honest, I'm more worried about this than having my tit cut off. The node clearance will leave me with a number of possible side effects, including nerve damage, cording and permanent lymphoedema or the risk of developing it.

Because the inside of my breast will be essentially scooped out (like a jacket potato  - eew) the expander will need to go behind my pectoral muscle and be held in by what is called a 'strattice mesh'. It's basically a sling made of pig skin, but with the 'pig' taken out.

It's very likely that the radiotherapy will muck up the reconstruction and that things are going to need tweaking and fixing. Worst case scenario I could lose the expander and /or the strattice. But it's a risk I'm willing to take. The surgeon told me to look at the expander as a temporary fix until treatment is done, something that will slightly less traumatic for me than seeing a flat scar in the mirror every day where my breast used to be.

I'll probably be in hospital for three to four nights. I'm hoping I'll get a side room where my hairless cancer face and head won't be on show to the whole ward and their families! I'll also be doing my best impression of a boiler, what with the three drains that will be hanging out of my boob and armpit. Two these will come out before I leave hospital, but unfortunately one will be staying in and I'll have to carry it round with me for two weeks like an additional body part - "we've taken your boob but here's a bottle of bodily fluid instead!".

The surgeon will start filling the expander once I have completely healed, gradually filling it with saline at weekly or two weekly intervals. Once this is complete (and it shouldn't take that long - I'm not exactly Katie Price) then radiotherapy will begin.

This is very basic account of the next stage in my treatment. As you will hopefully see, it is not quite as simple as 'getting a new boob'. It's major surgery and a long drawn out process with it's own risks. But onwards and upwards as they say - bring on that scalpel (and the morphine!)

Gene-ius

*This post is a little out of date as I wrote it straight after my last chemotherapy I've just been delayed in posting it. I met with plastic surgeons today so I kind of know what surgery I'll be having now. I'll write about that in a separate post....

So on Tuesday the 25th of November I had my fifth chemotherapy session - one more to go hurrah! Now I want to update you all about my genes. You may remember in my recent post about visiting my surgeon , I mentioned asking to be referred for genetic testing. I had assumed previously that if I did have a gene fault that may have caused my breast cancer, that there would have been other incidences within the family. Not the case however. I've discovered after talking to some of the lovely ladies online that is possible for a gene fault to travel silently through a family and to potentially only show its ugly face to one person. Ugh. So it became very important for me to know whether my genes have anything to do with my cancer and what steps I can take to reduce the chance of another one - like having my boobs and possibly ovaries removed. Simple measures obviously!

My surgeon asked them to see me urgently as the results of the testing will affect what surgery I opt for in the new year. My control freak side is also starting to raise it's head again at the moment and I feel like I desperately need to scrape together as much knowledge and information about my situation as possible. Dealing with uncertainty is definitely not my strong point I am discovering! And there is a whole lot of uncertainty here at the moment unfortunately. 

Slight panic (well, considerable panic) when I was told that they couldn't book me in until the second half of January - well after my proposed surgery date. However, they very kindly happened to find me a cancellation for the day after my last chemo this week. Its all go here at the moment!

After driving round for 40 minutes trying to find a parking apace at the hospital and ending up in floods of frustrated tears, I was over half an hour late for my appointment, However, the consultant was extremely nice and saw me anyway - who wouldn't take pity on an obviously stressed out, upset, scared young cancer patient eh?

The two main gene faults they normally test for are the BRCA1 and BRCA2 gene faults, which can be linked to breast, prostate and colon cancer amongst others. I'd spent the night before hurriedly collecting any family history of cancer (of which there is not much at all really - one breast cancer and two prostate cancers), which the consultant entered in to his magic computer, along with the details of my cancer. Nice Guidelines state that the chance of an individual having a faulty gene has to be over 10% once the calculations have been done for them to qualify for gene testing. Once my details and family history were entered, the chance of my having a gene fault came back at almost 38%, weighing heavily on it being a BRCA2 mutation. Yikes. However, this is probably an overestimation as we erred on the side of caution with a couple of areas that weren't clear - possibly three prostrate cancer instead of two and possibly two breast cancers in one relative during her life time.

Anyway, it was more than enough to qualify for testing, so for the second time that week I had yet more blood taken. Two blood tests and one cannula and it was only Wednesday. I am so over needles right now!

The results will determine what surgery I opt for in the new year, as I mentioned in my previous post about my visit to the surgeon. If there is a BRCA mutation, the decision is simple. Double risk reducing mastectomy. If there isn't a mutation, then the genetics consultant can calculate the approximate risk of another primary breast cancer raising its ugly head based on other factors including my age, and I can go from there. Decisions, decisions. I'd rather be pondering where to go on holiday next if I'm honest, but this is my lot right now.

There is also the possibility that the test will show an unknown gene variant - not too helpful really as as the name suggests it would be something that they don't yet know too much about. My DNA will be kept on file so that when new gene testing arises in the next year or so they can retest for other mutations.

Results from these tests normally take about 8 weeks to come back but as mine will be informing surgery they will try and get them back within 4 weeks. Exactly 4 weeks will mean results on Christmas Eve. Merry Christmas to me! Or not as the case may be....

Younger women with breast cancer - Sarah P's story

The first personal story I am featuring on my blog as part of breast cancer awareness month is from my good friend, fellow feminist and tumour twin Sarah Perry, aged 33:


More of Sarah's wonderful scribblings can be found on her blog.


'There were two things that brought me to the Breast Care Clinic at Glenfield Hospital for an ultrasound scan on 18^th July 2014. A wonky nipple, and stubbornness.

 

I’d spent the last 18 months obsessing over cancer – and with good reason. On my mother’s side of my family, just looking at the women across 4 generations, this is what my family tree looked like:

·         My great grandmother – died of ovarian cancer in her 50s. Had one daughter...

·         My grandmother – diagnosed with breast cancer at 59, died at 66. Had one daughter...

·         My mother – diagnosed with inflammatory breast cancer at 47, died at 53. Had one daughter...

·         Me.

It actually wasn’t until my mom died at the end of 2012 that I started to panic about this pattern of cancer. I only have a small family, so the numbers aren’t huge – three cases of breast/ovarian cancer across three generations. When you start reading information online about hereditary breast and ovarian cancer you’re told everywhere you look that most breast and ovarian cancers aren’t hereditary, breast cancer is so common in the UK (1 in 8 women) that many families will have multiple cases of breast cancer within a family and that doesn’t mean anything, and you need at least two close relatives to have been diagnosed with breast cancer (mother, daughter, sister) to be considered for genetic testing.

But when I sat and thought about it, I wasn’t reassured. It might only be three women in my family across three generations, but they were the only three women in those generations! And my mom was young at diagnosis. Plus the combination of breast and ovarian cancer was a red flag. So at the start of 2013 I went to my GP and made my case to be referred to the Family History Service.

 

To try and cut a long story short this is what happened: The Family History Service referred me to the Genetics Clinic who thought the pattern of cancer in my family was suggestive of a fault in either the BRCA1 or BRCA2 genes. I had a genetic test and got my result in April 2014. It was an “uninformative” negative. This means that no fault was found, but as no living relatives with cancer were available for testing, they didn’t know if this was because there was a BRCA fault in my family which I was lucky and did not inherit, or if the cancers in my family were caused by an as yet unknown genetic problem which I could have inherited.

 

However, I was told that while I would still be considered high risk, having no faults in my BRCA1 or BRCA2 genes was very, very good news – they were the most likely offenders in my family and the most dangerous genes when it came to risk of breast and ovarian cancer. I was told I should be happy! I should relax now!

Yeah well, I wasn’t happy and I didn’t relax. I’d done my research, and while both breast and ovarian cancer in a family suggests a possible problem with the BRCA1 or BRCA2 genes, the specifics of the cancers in my family (detail I won’t go in to here) didn’t fit the profile. I was convinced that the cancers in my family were hereditary, but caused by another genetic problem.

 

At this point I think the people around me started considering my cancer worry as a mental health problem rather than a physical health problem. Oh if I had a pound for every time someone (who didn’t really know what they were talking about) told me not to worry, that the test result was good news, and that I should just put it out of my mind I’d be a millionaire! (Ok maybe a slight exaggeration but I’d certainly have enough for a bloody good night out.)

 

But remember, I’m stubborn. I have a mind of my own, and when it’s set on something, I’m not easily swayed or fobbed off. And in this situation, this might just have saved my life.

In July 2014, just three months after my good news genetic test result, I noticed my left nipple looked kind of wonky. It was really subtle. I wasn’t even sure myself if it had just always been that way or not. But being the cancer-obsessed-panicker that I had become, two days later I was showing it to my GP. She wasn’t worried, if there was a change it was probably hormonal and she said she’d look again in a few weeks. I went away. I wasn’t happy. I am stubborn. I called back and insisted on an urgent referral for an ultrasound scan to check it.

 

And that’s how I ended up at the Breast Care Clinic on 18^th July for an ultrasound scan. A wonky nipple, and my own stubbornness. I had so many supposed reassurances – I definitely didn’t have a BRCA fault, I was only 33, the nipple change was subtle and no one could even feel a lump – but none of this mattered to me. I knew I was next on cancer’s hit list and I wasn’t going to ignore even the tiniest thing. The ultrasound scan which I was having for my own “peace of mind” (to shut me up) clearly showed a gnarly cancerous tumour. There was no mistaking it.

 

This was the one time in my life where I would have liked to have been wrong. I’d have liked nothing more than to have looked like a silly idiot that day, to have been over the top, to have to apologise for wasting people’s time. But (as always!) I was right. It’s a good job I was stubborn, it’s a good job I insisted on getting it checked right away. Time is everything when it comes to cancer. The earlier you catch it, the better.

 

If there were three things that I would want anyone who has read this far to take away from my experience they would be:

·         When it comes to your health, don’t ever, ever be fobbed off by anyone, including the doctors and experts. If there is something you are not happy with, or not sure about, get it checked. And if necessary, get it checked again, and again, and again, until you are satisfied. If you have a gut feeling about something, even if it doesn’t make sense or you can’t quite put your finger on it, you should listen to it and trust it.

·         Not all breast cancers are identified by a lump. Be aware of all the signs. Mine was a wonky nipple. My mom’s cancer was inflammatory breast cancer – signalled by changes to the skin. Know your own body well, know the signs well, be vigilant. Then if there are any changes caused by breast cancer, you’ll spot them early and probably save your own life.

·         Be aware of your family history of cancer. Don’t panic about it – most breast cancers really aren’t hereditary. I’m in an unlucky minority. But it’s sensible to be aware of any cancers in your family, so that if a pattern does emerge, you can let your GP know and take it from there.

Anyway, if you’re interested in any more of my own story, I’m blogging over at hbocuninformed.blogspot.com. I’m writing about hereditary breast and ovarian cancer, and my own experiences since a cancer diagnosis. If you have any questions about hereditary breast and ovarian cancer please contact me via my blog, I’ll be happy to try and help if I can.'