Vita: MRI or Mammogram?

Anyone who has ever survived primary breast cancer will know the feeling of fear that lives with you every single day. That is, the fear that the disease will at some point return or metastasise, leading to incurable secondary breast cancer.

Apologies for the recycled MRI selfie, but you can never have too many selfies

For survivors like me, there is no ‘screening’ for metastasis. But what doctors can do is regularly check the breasts themselves for recurrence, with manual examinations, mammograms and MRI scans.

I, however, have been somewhat confused over the last six months about whether I’m supposed to be having MRIs or mammograms from now on.

So, in my latest post for Breast Cancer Care UK’s Vita Magazine, I talk about the national guidelines and recommendations for MRIs.

Disclaimer: This should by no means be taken as ‘advice,’ because I am not your doctor. But hopefully it’ll give people a better idea about the National Institute for Health and Care Excellence’s guidelines, and from there you can ask the experts.

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 Gene Test Result

After an agonising 8-week wait, I finally got the results of the gene test when I was half-asleep this morning. Amazingly, I tested negative and got the all-clear for the BRCA1 and BRCA2 gene faults. This is great news not only for me but also for my family, as we can just about assume none of us inherited the gene mutation (and perhaps Granny Hetty never had it after all). PHEW! This means several things (I feel a list coming on…):

1) I can keep my original boobies!

2) I won’t have to have a double mastectomy and try to make new boobs out of my back muscle/stomach flab (so I’ll stop eating all the pies now).

3) I will be able to proceed with radiotherapy in Dublin in January, dates pending – watch out Dublin & FB, here I come!

4) I should be able to have baby Priceys some day without having to worry about passing on nasty harmful genes to them.

Hooray! Now that really is a weight off my mind.

There is still a decent chance I could get breast cancer in my untreated breast at some point in my lifetime (30% over the next 60 years, compared to about 5% for a woman who has never had breast cancer), but apparently this is not enough to merit a preventative mastectomy. I may be able to have further tests in 5-6 years to see if I inherited a different condition that caused my breast cancer, and there’s a chance I could look at having a mastectomy then, but for now the decision is that the boobies are staying put! My ovarian cancer risk is also about as low as that of any person, as far as I understand. So, happy news all round.

Fortunately, I had some fabulous girlfriends to stay for the weekend, which took my mind off waiting for the phone to ring with my results. As you can see, we had a great time frolicking in the Yorkshire countryside in our wellies, and later trying on all my wigs. My legs are now sore from all the up-hill walking in wellies, and I’m feeling drugged up from the steroids and ready for a good sleep.

(Here we are pictured hanging from a tree that must’ve fallen in the past few days’ incredibly strong wind and rain!)

Wig Party!

(Both photos courtesy of Miss Sophie Austin!)

The No-Sugar Diet

In other news, I just wanted to clarify to you all that I am staying off sugar for good, as I don’t think I made it clear in my previous blogs. The reason for giving up sugar in the first place was that there are very strong links between sugar and cancer, and drastically reducing my refined sugar intake is one of the ways I can try and prevent my cancer from recurring. I am looking forward to meeting the nutritionist in two weeks to find out more, but it seems eating refined sugar in things like chocolate and baked goods can cause my cancer cells to grow and thrive, so the best thing I can do is cut it out as much as possible.

As my weekend visitors know, I may have lapsed slightly with a certain sticky toffee and ginger pudding and some delicious chocolates, brownie and cookies, but I am now back on the no-sugar diet. As with all temptations in life, it’s pretty tough to cut it out 100%, so the plan is just to have tiny amounts of sweet goodies occasionally, but cut them out on the whole. So if you’re stopping through the Shepley area and fancy popping in to help me through my backlog of sweeties, please do stop by!

It’s the final chemo tomorrow! I think I will be practically dancing around with joy in a 10 days’ time when I’m through the worst of it!

HOORAY FOR BOOBIES AROUND THE WORLD! GO CHECK YOURS!

The Five-Month Check-Up

Barely a day goes by without a trip to the hospital. The occasion yesterday was my five-month check up after my surgery.

“Five months?!” I hear you ask. Yes, really, it’s been five months since diagnosis, five months I’ve been sitting on my bum getting fat and being frequently stabbed by needles while the seasons have changed and you’ve gone from wearing your summer frocks to winter woolies (or vice versa, for those in the Southern Hemisphere.)

To offset the unpleasantness of a trip to the Christie Clinic (lovely though it is), we decided to treat ourselves to a three-course lunch at Jamie’s Italian in Manchester, which opened in February. I thought I’d take some of you (namely Fe, Linz and one or two others) up on the suggestion of food-blogging, since writing about my life online has now become second nature and replaced my 20-year habit of writing a private diary, so you can read the first post of my fledgling food blog here.

For those of you who can’t be bothered to click the above link, or simply don’t have enough time in your day, I hope you will instead enjoy these pictures of a burger and – the pièce de résistance – the Thomas Crapper loo.

I digress…

I thought the check-up was just to see if my boob scar was in order, but in fact it was also a breast cancer check – to see if any new lumps had emerged. They haven’t, thank God, but it turns out I have to have these appointments every four months for the first couple of years and then have checks (probably mammograms) at least once a year for the next 17 years until I actually hit the age where they start screening women routinely – 47. (And after that, presumably more of the same…)

This really made it hit home just how much cancer is going to be with me for the rest of my life. Talking to the surgeon and hearing about how important it is to keep checking whether the cancer has come back just reinforced how rare it is to have breast cancer at my age and how it could return at any time. I’ve gone from never going to hospital up to the age of 29, to making it practically a second home. Hey ho…

My gene test result is due any day now and will determine whether or not I have a bilateral mastectomy, so Mum and I saw the consultation as an opportunity to grill the surgeon, who I will most likely choose to perform my operation in the event that I need one.

He explained that muscle would be taken from my back in order to reconstruct my breasts after they are lopped off.

“But do I even have enough muscle in my back for that?” I asked, imagining two great chunks missing from my shoulder area…

“It’s the biggest muscle in your body,” he said. “But we would use implants as well.”

Ahh, I thought, thank God for that! They would also normally take fat from my stomach, he said, but (un?)fortunately, even after putting on 3kg, I’m pretty sure I’m not fat enough to produce a pair of 32Ds from my tummy flab.

“Are you managing to eat ok?” asked the surgeon.

“Oh yes,” I said, “In fact, I’ve put on weight.”

(I didn’t feel the need to tell him I’d just wolfed down an enormous cheese-and-red-meat-based lunch at Jamie’s.)

Meanwhile, I’m fast becoming a local celebrity, with the Huddersfield Examiner contacting me yesterday for an interview. I’m not sure exactly how they found my blog with just one obscure mention of a nightmare taxi ride from Huddersfield to Manchester, but nevertheless I shall endeavour to give them some kind of exclusive. I am as yet undecided as to whether to wear hot pants for the photo shoot, like I did last time I appeared in the Examiner, in 2004 (see link).

Happy weekend!

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!