Vita: Angelina’s Genes Deciphered

Angelina Jolie sparked a lot of controversy earlier this month when she revealed her decision to have both her breasts removed following a BRCA+ diagnosis.

“Why did she have to tell the world?” people asked.
“Did she just do it for publicity?”
“Why didn’t she get her ovaries removed as well?”

Unfortunately, many people judged and criticised Jolie without really understanding what her diagnosis meant and what her options were.

The aim of this blog is not to add to the discussion about whether or not she made the right choice (I fully support her decision and also believe she was right to tell the world, before a journalist did). Instead, I want to explain a little about my experience of BRCA genetic testing here in the UK, and what a BRCA+ diagnosis means.

To continue reading this blog in Breast Cancer Care UK’s Vita magazine, follow the link below:
http://www.breastcancercare.org.uk/news/blog/angelina-s-genes-what-are-brca1-brca2

Chemotherapy: Round Six

Yes, I really did wear my birthday bunny onesie to the hospital yesterday. It had to be done, given Monday’s good news re: the BRCA gene result and then the fact that it was my final chemo session. And guess what? Not a single person commented! A few people looked me up and down with amused faces, but not even the oncologist batted an eyelid when I turned around to leave his office, revealing my white bunny tail! (Pippa Middleton, eat your heart out). Well, these people have clearly seen it all.

(That’s mother in the background beavering away relentlessly at her work – she never ceases.)

The day in hospital took a little longer than usual, but the chemo itself flew by. Nurse Alison was one of the best I’ve had yet and she managed to get the needle and cannula into my hand with the minimum of fuss, effort and pain, much to my relief. The ice torture wasn’t even as bad this time – I swear the gloves were warmer, or maybe I’m just getting used to it. There was a period of about 15 minutes with the second pair of fresh ice gloves when my hand was completely numb and I thought it was going to drop off, but the fact that I knew it was my final chemo made it all easier to bear.

The good news is the oncologist agreed with the geneticist that I don’t need to have the mastectomy operation. The combination of surgery, chemotherapy, radiotherapy and five years of Tamoxifen on my left breast is the equivalent of having a mastectomy, he said. Of course, there is much more of a risk of getting breast cancer on my right-hand side at some point, but if this happened, I could have the same treatment of surgery, chemo and radio again (God forbid this never, ever happens). And if I get a recurrence on my left side, I’d have to have a mastectomy then. He said the double mastectomy and reconstruction at this stage would be such a huge and fairly risky operation that my situation doesn’t merit taking the risk, so I shall now cast all doubts from my mind and concentrate on getting back to my life – a very, very happy day!

My blood count yesterday, even after two days of steroids to boost it, was still almost too low to have chemo, and the oncologist had decided that my infection and high temperature a couple of weeks ago were the effects of the chemo, so he has given me more steroids to take for the next few days, plus some other drugs to offset the side effects of the steroids, so this is the grand total of what I’m on at the moment:

– The Taxotere chemo itself

– Dexamethasone steroids (I’m in hot-flush heaven right now…)

– Once-a-day injection of Filgrastim for 10 days to boost my bone marrow/immune system

– Lansoprazole to offset steroid side effects

– Senokot to ward off the constipation

– A healthy cocktail of Co-Enzyme Q-10 and multivitamins

– Aspirins in a few days’ time when the pain sets in

– Tamoxifen starting in three weeks for five years!

Uff! That’s definitely the most drugs I’ve ever taken, I’d say!

So, the next steps… well, it’s not over yet. I have to go back to see the oncologist in 3 weeks for a check up. No doubt my blood count will be very low by then as it’s never recovered properly and I won’t be taking the steroids any more, but fingers crossed there’ll be no infections this time. Then I start taking Tamoxifen, the drug to reduce my oestrogen levels for five years, and in 3 weeks I also go to Dublin to meet the radiotherapy team.

Then, fingers crossed, radiotherapy in January and February, then back to see the surgeon in March, back to see the oncologist in June and so on and so forth returning to the hospital for the rest of my life!

I confess I had a bit of a sugar binge last night because I really felt the need for sugar and thought, if you can’t have some Haagen Dazs ice cream, ginger ale and prawn cocktail crisps on your final day of chemo, when can you have some Haagen Dazs ice cream, ginger ale and prawn cocktail crisps?! Plus, the oncologist is absolutely adamant that what I eat has nothing to do with my cancer so if it were left to him, I could just continue as normal. But I’ll give all those nutritionists the benefit of the doubt and continue with my healthy eating from now on…

Finally, thanks to Kimm and Howard, who sent me these gorgeous flowers about 20 minutes after I got my gene test result on Monday. Beautiful!

Now it’s off to rest for a few days… This bunny is DONE with chemo!

The Geneticist

Yesterday I met the geneticist and took a blood test for the BRCA1 and BRCA2 genes. (BRCA stands for BReast CAncer). Unfortunately, I won’t find out the result for at least another 6-8 weeks, because the test involves extracting my DNA and going through it with a fine-tooth comb in search of a genetic ‘error’ – a process the geneticist likened to “Going through War and Peace and looking for a spelling mistake.”

The geneticist was one of the nicest doctors I’ve met so far during my cancer journey. He started by drawing a family tree with coloured circles for the instances of breast cancer and any other cancers in our family. Based on this, he said there is probably only a 20% chance that I carry one of the breast cancer genes, because my father’s side of the tree is clear of cancer and my mother and aunty have never had cancer. What makes it seem much more probable, however, is that my maternal grandma had breast cancer in her thirties, at a time in the 1960s when breast cancer in young women was even rarer than it is now. I feel instinctively that I have the gene, but I have been known to be wrong on occasion.

There was good news and bad news in what the geneticist told me. It is more likely that I have the BRCA2 gene than the BRCA1 gene, based on the type of breast cancer I had. (Grade III, oestrogen-receptor positive, HER2 negative). There are various differences between the two genes, but the positive takeaway for me was that BRCA2 means that it is less likely I will develop ovarian cancer at some point in my life than if I had BRCA1. Interestingly, he also said that BRCA2 gene carriers are much more responsive to chemotherapy.

The bad news is that, if I do test positive for BRCA2, I have a 60-80% chance of developing breast cancer again at some point in my life, compared with the 5% chance that most people have. I would also have an increased chance of developing ovarian cancer, but not until I’m over 40, so I could opt to have my ovaries removed in my 40s.

Double Mastectomy

The chemotherapy and radiotherapy I am having for my breast cancer will reduce the risk of developing another tumour in my left breast to about 30%, but unfortunately my right one would still have the 60-80% risk. Thus, the implication is that if I test positive for the BRCA2 gene, I will have to have a bilateral (i.e. both sides) mastectomy. I have already been thinking about this for a month or so and, although I never imagined I’d have to part with either of my boobs, I am fully prepared to have that operation and get some lovely new ones. It is, however, a huge operation that can involve a 6-month recovery period, but I’ll cross that bridge if and when I come to it.

The fertility specialist I spoke to a couple of months ago said that deciding to be tested for this gene was something many people wouldn’t want to do, but I made the decision pretty quickly that I absolutely want to know, so that I can take the appropriate risk-reduction measures and then get on with my life without the fear that I will develop a second breast cancer. (Note that this has nothing whatsoever to do with the likelihood of my current cancer recurring in a different part of my body at some point down the line – that is a separate matter, but I have been told that my programme of treatment gives me a 90% chance of being clear of recurrence for the next 10 years, which is a start).

As some of you may know, it is breast cancer awareness month in the UK (more of this in a later blog post) so I feel like breast cancer is absolutely everywhere I go at the moment – in every magazine and on lots of daytime TV talk shows, particularly! So I do at least feel that I am not alone. All I can do now is wait, but at least once I know whether I have the gene or not, I will then have the knowledge and power to act accordingly! Let’s just hope those lab doctors crack on with War and Peace and get me an answer ASAP.

In other news, I am feeling much better today. Returning to hospital yesterday for the appointment and test made me feel physically sick, but now, touch wood, I won’t have to go back for another two weeks and can concentrate on getting back to strength again. Time for some cooking therapy!