Vita: Let’s Talk About Periods

Last month, I got my period. This wouldn’t normally be headline news, but considering it was the first one in the eight months since my penultimate chemotherapy session, it was rather a big deal to me.

I’m writing about this because it’s a seldom talked about part of the breast cancer experience, yet for many pre-menopausal women it’s one of the single greatest concerns during treatment. Will my periods come back after chemo? Will I still be able to have children in the future?

So, despite the fact that we don’t talk about periods, I decided to write about mine. Here goes…

To read the rest of this post in Breast Cancer Care UK’s Vita Magazine, click here.

(And if you don’t want to read the post, have a look at this picture of me and my survivor girlfriends in Daymer Bay, Cornwall last week!)

A Beginners’ Guide to Breast Cancer Diagnosis for Young Women

‘Oh, but you’re so young!’ – It’s a phrase I’ve heard repeatedly throughout my breast cancer journey. Nobody expects a woman in her 20s to have breast cancer – after all, eight out of 10 cases are in women over 50, and only a tiny fraction are women under 35, or men. But every year, about 200 women under 30 are diagnosed with the disease.

Having breast cancer is an isolating experience, regardless of age, nationality or background. It’s no less easy for a 70-year-old than for a 25-year-old. Nevertheless, over the past seven months since my diagnosis at age 29, I have found that a lot of the support and guidance available is (understandably) catered towards older women, and doctors don’t necessarily take into account the needs of the pre-menopausal.

With that in mind, I’ve put together a few bits of advice from personal experience. Most of it is relevant to women of all ages, but I hope some of it will be particularly helpful to those few fellow women in their 20s and 30s who receive a diagnosis this year.

(Please click on the link below to see my latest blog for Breast Cancer Care UK):

http://breastcancercare.org.uk/news/blog/beginners-guide-breast-cancer-diagnosis-younger-women

Chemo Day Two / Big Sugar Challenge – Day Five

Well, firstly I’ll start by saying congrats to Obama – I’m pretty sure my over-sized ice-foam baseball hands and feet helped him win. No need to thank me, Mr President.

So, day two of chemo and I’m not feeling too bad so far. I went for a walk to get some fresh air while I still have the use of my limbs (i.e. before the crippling joint pain sets in).

Daily Ailments:

1) My little pinkie feels like it’s been slammed in a doorframe. Unfortunately, I can’t tell whether it’s going black and about to drop off because I already have dark black sparkly nail varnish on it, so I’ll have to wait a week or so to find out whether I lose a finger or not. But what are pinkies good for, anyway? All I can think of is proper tea-drinking etiquette…

2) My face went all red and blotchy before bedtime last night. And I am having hot flushes. I am hoping it’s just an after-effect of the steroids and not – god forbid – the onset of an early menopause.

3) I am back on the daily self-injections… with no sweet treats to self-congratulate… yuck.

Great things about today:

1) My Mad Men Season Five DVD arrived in the post. Thanks, Amazon.co.uk – your timing literally couldn’t be better.

2) The Daily Mail reckons a glass of wine a day can help cure breast cancer. Don’t mind if I do…

3) After ignoring me for a few days, Nurse Molly is back to do her nursing duties and is preventing me from reading magazines by sitting across the pages. Her heart’s in the right place.

The Big Sugar Challenge

DAY FIVE (Tuesday)

(Note that I got a bit ahead of myself yesterday and called it day five when it was in fact day four – needless to say, I’ve gone back and corrected it. Apols).

6am pre-breakfast: A banana and four steroids.

8:30am actual breakfast: Bacon sandwich on grain bread with grilled tomatoes and a cup of tea. (Yum, thanks Dad, the most creative sandwich maker I know. Who needs ketchup anyway?)

Hospital lunch: Tuna sandwich on brown bread with salad, a fruit salad and a cup of tea. Four more steroids and a large dose of chemo… Bleurrgh!

Snacks: A few handfuls of pistachios, assorted nuts and raisins. Two more cups of tea (or was it three?)

Dinner: Spinach and ricotta tortellini with pine nuts, tomato and basil, broccoli and a dollop of Philadelphia for good measure. A glass of sugar-free cloudy apple juice (which I had said was not allowed but Mum reeeeally wanted me to drink it before it goes off…) Another cup of tea.

Snacks: Two savoury biscuits with cheddar cheese and butter.

Notes: Woke up at 6am today wanting a Cadbury’s Creme Egg like never before. Good job it’s November.

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!

To Freeze or Not to Freeze

I have steered clear of all fertility talk thus far because initially it was simply too upsetting. But it is the hardest part of having cancer for me, so if I continued this blog without mentioning it, it would be rather like lying, presenting a big rosy picture and missing out the most important part. And now I’ve had some time to become at peace with it, and it might not be so bad, so here goes.

I was offered a last-minute appointment with a fertility specialist in Manchester today, so off I went, to discuss the possible effects of chemotherapy on my fertility and the preservation methods available. If I have understood correctly, chemotherapy targets cells that are multiplying, and thus it can confuse cancer cells with eggs, damaging some women’s fertility. However, since I will be only 30 years old when I have the chemo, I stand a very good chance of coming out of the treatment fully fertile with all my eggs in tact.

In addition to the chemo, my type of cancer is oestrogen-receptor positive, which means I have to take drugs for 5 years to lower my oestrogen levels to reduce the chances of the cancer coming back. This doesn’t make me in any way infertile, and the advantage is that if I wanted to have a baby after 2 years, I could stop the treatment, have a baby, and then continue the treatment for another 3 years. So the main concern is the chemo.

My only option to protect myself against the unlikely event of becoming infertile after the chemo is to freeze my eggs. However, freezing my eggs would mean stimulating my oestrogen production for 3 weeks, which is exactly the opposite of what we want to do and could increase the likelihood of my cancer coming back at a later stage. Egg freezing is also expensive at £5,000 (uninsurable) and also has an extremely low success rate of about 10%. Having the treatment would also mean going to Manchester most days for 2-3 weeks and having a couple of injections per day, followed by a general anaesthetic and a short procedure (but not surgery).

So, to freeze or not to freeze?

There is every chance I will come out of the chemotherapy still very fertile, and never need to use the frozen eggs. However, if there is a small chance the chemo will make me infertile, is it worth creating a low risk to my own health in order to gain a 10% chance at having my own biological children in future? Oh how I wish I knew.

On the upside, when I got back in the car after visiting the hospital, the first thing I heard on the radio was a woman talking about how she had accidentally fallen pregnant at 47, so there is plenty of hope.

Please don’t feel any need to comment on this one – I have published it in the interests of sharing and being honest about my whole experience, but I’m not looking for any words of sympathy. I won’t be having babies for a good few years yet either way, so I have plenty of time to keep enjoying life and working on the Things to do before I’m 40 list. Oh, and thanks to those of you who’ve so far offered me your surrogate children, your sperm and even hair transplants – hopefully I won’t be needing them! 😉

To read the original version of this post with images and comments, see Facebook Notes: https://www.facebook.com/notes/361121431831009/