I’m struggling to get fertility treatment funded after breast cancer

I found a lump in my boob before Christmas 2011 and finally went to see my GP in the New Year. We had been trying for a baby, so I put the ‘swelling’ in my left boob down to hormonal changes. I was trying to rationalise the lump in my mind, but knew I needed to go to the doctor.

After seeing my GP things happened pretty quickly. On 16 February 2012, aged 36, I was given the news I had breast cancer. My first question wasn’t ‘Am I going to die?’ but ‘Can I still have children?’

I wanted to be a mum. Hearing that I potentially couldn’t have children was perhaps the hardest part about having breast cancer. I was devastated. I was going to lose my hair and my breast. Did I really have to lose my fertility? I was worried our dream of having children was slipping away. Would my partner still want me if I couldn’t be a mum? Am I a failure as a woman? How did this happen?

Everyone knows some of the side effects of chemotherapy like hair loss and sickness – but fertility is seldom talked about. And as a younger woman this is hugely important.

Starting IVF

My breast care nurse was amazing. I was diagnosed on a Thursday and on the Saturday I was at the fertility clinic having a fertility appointment. My oncologist had agreed to delay chemo until my fertility treatment was complete.

My cancer was oestrogen receptor positive (ER+). I know some ladies have been advised against IVF and embryo storage, because it’s not known whether the drugs you need to take for IVF might stimulate breast cancer cells to grow. However, my oncologist prescribed the drug letrozole to control my hormones during the IVF process and told me the risk was minimal.

At our fertility appointment we talked through the IVF process and were asked if we would like to store embryos or eggs. We agreed on embryos and opted for a treatment called ICSI.

During my IVF cycle, the goal was to have as many mature eggs as possible, as this would increase my odds of success with treatment. I was given injections to do myself for about 10 days, to stimulate the ovaries and produce eggs. I was also monitored using vaginal ultrasounds, which measured the growth of the eggs, and blood tests to monitor my oestrogen levels.

Once the developing eggs were the right size, I had to give myself the trigger injection. This helped the eggs finally mature and set ovulation in motion. Timing is crucial in this bit of the treatment as the eggs must be collected before the expected time of ovulation. About 24 hours after the trigger injection, the eggs were collected. I was sedated and don’t remember much other than having a cup of tea and a sandwich after I came round! The eggs were then sent off to the embryologist and I had to wait until the next day or so for a call to see how many embryos had fertilised.

That waiting was agonising, but the call came… we had eight!

Next was my breast cancer treatment – chemotherapy, mastectomy, Herceptin and hormone therapy.

Trying for a baby

This fertility business is expensive. I’ve had to pay £300 every year to store my embryos. And the rules aren’t the same across the country. Some people have their storage funded for 10 years. Whatever the rules are – they should be consistent. And for people like me who are in this position due to cancer treatment, shouldn’t an exception be made?

Fast forward three years since my diagnosis.

I had been on hormone therapy for over two years, and in October 2014 my oncologist gave me the go-ahead to come off tamoxifen and try for a baby. We had to wait three months for the tamoxifen to leave my system.

Unfortunately, falling pregnant naturally hasn’t happened – so I decided, as I don’t have the luxury of time, that I would use my embryos. This is when I became truly frustrated and heartbroken by the whole process.

In order to use my embryos, I can’t just request to use them. I need to get a referral back into the system. This means a GP referral to a fertility consultant. Not where I had my IVF – but a gynaecologist at a hospital who will then refer me back to use my embryos. They are MY embryos – why can’t I have access to them easily?

But that’s not all. I have had to have HIV and STI tests, hormone tests and my height and weight measured. There is no sensitivity when it comes to these appointments – you are put in a waiting room with ladies who are pregnant and discussing pregnancy and all the next steps. Can you imagine how much of a kick in the teeth that is for someone who is there for an infertility appointment?

I need to meet all the criteria of my clinical commissioning group (CCG) in order to get funding for IVF. At my appointment with the gynaecologist I was told my BMI was too high, by two points. I put on weight during my cancer treatment as a result of having to take steroids. So rather than get referred back to get my embryos transplanted, I have been told to lose weight before I will get a referral. Anyone who has been on steroids will know how hard this is. I could have cried. As if cancer isn’t enough, this part of the process has succeeded in nearly breaking me.

There is an option of exceptional funding – but I was told by the gynaecologist this could take two years to approve. I just don’t have the luxury of time. All the time I am not taking tamoxifen, I am putting myself at risk. I know it’s a personal choice, but the system isn’t helping me.

So where am I now? In limbo. I’m desperately shedding the pounds to get to that magic BMI number so I can get CCG funding.

It just doesn’t seem fair. We don’t ask for cancer. We don’t ask to be in this position and when we ask for help, it just isn’t there. I had no fertility issues before my breast cancer treatment. I didn’t cause this – the cancer and its treatment did. It makes me so sad.

I am 40 now, and I still desperately want to be a mum. All I can do is live in hope.