The Nuffield Victoria Wing

At our first consultation appointment we met with a nurse who went through some questions regarding my breast surgery and planned cancer treatment.  She explained that the fertility treatment would commence at the start of my period and that I would be put on a “short protocol” to get me through as quickly as possible.

I had an AMH blood test taken – a hormone test that gives an indication of how many eggs I have left in my ovaries.  The result wouldn’t give a number of how many eggs are actually left, it would be a measure of how strong the hormone is (if the level was not very high it could indicate approaching the menopause). The result of this test would help them get the correct dosing for the medication used for the IVF.

She asked if we were self funding the treatment which we said we were because I wasn’t due to be having chemotherapy and because we were over the age of 34. She said how much of a post code lottery IVF funding is and that had we lived in Surrey we would have been able to have treatment up to the age of 39 and would have been funded for two cycles.  Damn it – we just moved from Surrey!!

We both completed a medical questionnaire each and a whole host of other paperwork and then she scheduled in our next appointment which she said would be approx. 2 hours long. This session would cover how to do injections, how they monitor the cycle with ultrasound scans, how they collect the eggs and then create embryos for us as well as storage of the embryos and the hormone supplements to be taken.

The nurse also explained the two types of fertility treatment . IVF (In vitro fertilisation) where the egg and sperm are put together in a dish and they find each other and fertilise naturally. ICSI (Intra-cytoplasmic sperm injection) where they manually inject a single sperm into an egg which increases fertilisation rates. She said they would rather prepare us for the fact that we may need the latter as it would cost an extra £1,300 rather than shock us on the day. Jesus, this is all so expensive!

She said that the average number of eggs collected is between 8-10, although not all of those would be high enough quality to freeze – they would only freeze the good quality ones as they’re the ones that will survive the freezing and thawing process. As this would be our only shot at having the treatment they would likely freeze as many as possible.  The storage of the embryos would be done in a batch and would cost approximately £400.

We were then introduced to the Doctor for our initial consultation.  He immediately brought up the topic of funding, and said he couldn’t understand why our case hadn’t been look into in terms of funding on the NHS. We explained what the consultant at QA had said to us about my planned radiotherapy treatment and the upper age limit making us not eligible. He said they would apply for funding for us and see what they would say, it was worth the chance and he said in my situation they may be slightly more flexible.

He agreed that the right decision had been made in terms of having the surgery first, and that in the window between having the op and starting treatment they would take me through a cycle. He said that the recommendation after you have been on Tamoxifen for two or three years is that it’s possible to place the embryos back. Current teaching is that Tamoxifen is taken for five years, however he said that conventionally it’s two to three years (this would depend on the staging and type of cancer from the analysis).

The doctor reassured us that they will do their very best to obtain the best quality embryos to maintain my fertility and whilst it may not be my priority in terms of getting through the cancer, once I am through with my treatment that my ability to carry a baby would in no way be compromised.

He said his goal would be to get around 10 eggs, to then have seven to eight embryos, with four to five blastocysts. We would have an approx 30% chance per transfer of each of those embryos.

He offered us their counselling services and also suggested we take Omega 3, Vitamins B, C and D and a supplement called Proxeed. We were already both rattling with about 12 different vitamin supplements we’d been taking so think we were safely covered there!

We walked away feeling positive about the potential results of the treatment and definitely felt like we were in very safe, caring hands.

Back at home later on that day I received an unexpected delivery of flowers from a colleague at work. They were beautiful and I was touched by her kindness and thoughtfulness.

Someone like me

Before we went to meet the consultant on our first trip to the Nuffield, Caroline urged me that it would be crucial to harvest my eggs before my surgery to ensure the best possible chance of saving them. This put me into a huge quandary as the consultant we had seen previously said that my surgery was the most important thing and that the egg harvesting would happen post-op. Pats re-iterated to me what the consultant had said in that having the surgery was paramount – he was adamant that there would be no point in having any of my eggs to preserve if that meant adding risk for me.

Having not spoken to my breast surgeon at all as yet, I then went into a frenzy of trying to speak to someone at the hospital to find out what I should do. I’d left two voicemail messages with his secretary but hadn’t heard anything. The breast care nurses I had been in contact had all been fantastic, however they weren’t able to actually advise me what to do. I felt like I was having to liaise with people separately about what was best for me and wasn’t able to quickly get the answers I needed.  My period was due in the next day or two and I felt like I could be missing the only window of opportunity. This was all so stressful, it was such an important decision to make and to be made so urgently but I couldn’t decide by myself.. what on earth did I know about breast surgery and fertility treatment?!

I looked on forums, websites and did all sort of searches to try and find out more information. I had received literature from the Breast Cancer Care charity which included details of a helpline to call. I had a chat with a really lovely lady who had asked a specialist there for me and they had said there was no clinical reason to have my eggs collected before my op and that surgery and radiotherapy wouldn’t affect my eggs. I also talked over a few other concerns I had with her which was extremely helpful and put my mind at rest.  She recommended the ‘Someone Like Me‘ service where they try to connect you with someone who has had a similar diagnosis and treatment to you.

After my initial phone call to the Someone Like Me number, they put me in touch with a lady called Eileen who very kindly called me for a chat. She had been diagnosed with hormone receptive breast cancer when she was 36, some 10 years ago. She had a lumpectomy, followed by a course of radiotherapy and had also taken tamoxifen. I asked her questions about her surgery and what radiotherapy was like. After surgery she had felt numb and she still feels slightly numbness now and she was less mobile in the affected arm after surgery. Eileen said she felt tired having her radiotherapy and that her skin became itchy/flaky and irritated (a bit like sunburn) and that she regularly put E45/Aqueous cream on to moisturise the area. Whilst taking Tamoxifen she experienced more tiredness, night sweats, hot flushes and she felt bloated – the tablets mimic menopausal symptoms.

I explained my situation around trying to conceive and she said that no one had talked to her about being able to harvest or freeze her embryos back then but that she’d successfully gone on to have a little girl at the age of 41. I felt encouraged by speaking to someone who had been through a similar experience and who had successfully gone on to have a child after her treatment too.

I then finally managed to speak to my breast care nurse, who having spoken to the doctor, recommended not doing anything regarding egg harvesting this side of the surgery – getting the cancer out was the priority and then I could have the fertility treatment afterwards. They said they couldn’t be 100% sure, but that I may not need chemotherapy and that the Tamoxifen tablets would not make me infertile. I felt great relief from this and that someone who knew the history of my diagnosis and treatment was giving me an answer – one which I think deep down inside I knew anyway.

Claire had said that as it seemed I had so many outstanding questions that she’d book me an appointment to meet the doctor on the Monday so we could discuss them together. She also said they recommended I have an MRI scan as due to my age and breast density they couldn’t see clearly see from the mammogram I’d had and that in the unlikely event that the lump was bigger the MRI would be able to give better detail.

Call 0845 077 1893 or email someonelikeme@breastcancercare.org.uk to access the Someone Like Me service.

Finding a fertility clinic …tick tock tick tock

In the short space of leaving the hospital and driving home, we’d both come to the agreement that we would go ahead with the fertility treatment. Finding the money worried us, but we’d spent money on far less important things in the past – I’m sure we could find the money.

Something was troubling me about the letter that the consultant’s secretary had handed us. It looked like the Gynaecologist was affiliated with the Complete Fertility clinic in Southampton. Some close friends of ours had previously received IVF treatment at this clinic and, very sadly, were unsuccessful in their attempts. Amongst this tragedy my friend had told me at the time (and also very recently) what an awful after care experience they’d received there and said that she wouldn’t recommend the clinic at all – this kept playing on my mind. Whilst he seemed like a nice enough chap and very knowledgeable specialist, I felt I didn’t want to put myself in the hands of people who may not treat me in the manner in which I’d expect, especially with everything else going on and also having to pay thousands of the pounds for such care too. I voiced my concerns to Pats and we both agreed that given that we were paying for the treatment ourselves it would be best to find an alternative clinic.

When we got home we called my Mum and Dad to let them know what they’d said at the hospital and to asked if they’d be able to lend us the money for the treatment. They seemed as pleased as we were that there was some hope for a baby at some point in the future and very kindly agreed to lend us the money. That was a huge relief and now knowing that we were going to go ahead with the treatment and with the backing of my parents to help us fund it, all I now had to find a suitable fertility clinic.

Whilst we had experienced difficulties falling pregnant naturally, we hadn’t got to the point of looking into IVF options so I had no experience or knowledge of where to start the search.  I found the Human Fertilisation & Embryology Authority  (HFEA) website – the regulating body that licenses and regulates UK fertility clinics. I put in a search with our postcode and up came a list of clinics. The HFEA website was very good and detailed and had data for a whole host of options but I felt overwhelmed by all the information. I looked at the success rates and thought I’d start a spreadsheet to list them all to determine which would be the best option.

A friend of mine had not so long ago successfully given birth to a beautiful baby girl via IVF treatment and had called up that day to see how I was doing. She works in the pharmaceutical industry and offered to use her contacts to gain some advice for me. I said I didn’t have a clue of how to choose the most suitable clinic and she recommended  asking for success rates for frozen cycles and said that the clinic in Surrey that they had used was very good and she also very kindly offered to help do some research for me. It was good to speak to someone who had been through the same experience and I was grateful for the help.

Not wanting to rely on my friend’s ability to research an option for me, I then started to look at forums to try and find out people’s experiences of clinics –  after all that was the reason why we weren’t going with Complete. I started to feel so stressed with it all, not knowing what to do for the best and knowing we had to make a decision within the next day or two it just all got on top of me. It wasn’t like choosing an energy provider or a plumber, this was such an important choice to make.

Another friend of mine had already had a few rounds of IVF in the UK but unfortunately had been unsuccessful each time, she felt despondent at the treatment she’d received here and was about to embark on a trip to Athens to a clinic called Serum IVF. She’d told me how brilliant they had been with her and that their success rates were really high. The lady, called Penny, there seemed to be quite well known, as when I mentioned this to my dear friend, Kate, previously that week she seemed to know all about her from seeing her on TV. I felt compelled to get in contact with the clinic and after reading all the amazing testimonials on their facebook page I felt like it could be a good opportunity for us. I’d mentioned it to Pats that evening but he laughed and said ‘You are joking aren’t you? You’re not going to be travelling to Athens after you’ve just had surgery Allie!’ It did seem like a crazy idea but one that looked like had been so successful for many others.

The following morning I’d already completed the initial enquiry form for the Serum IVF clinic and they came back to me instantly. I told Pats that they’d replied and that’s when he flipped slightly. He said it was ridiculous for me to be thinking about travelling to Athens after I’d had surgery and to a country that is in such a dire state economically. I felt so upset I burst into tears in the bathroom – I knew deep down inside that he was right but it somehow felt like a better option. He came to kiss me goodbye as he set off for work and saw I was crying. I felt so mean as I know he was just looking out for what was best for me, and he could see I was clinging onto the best chance of us having a baby. He hugged me so tight and the tears eventually stopped – this was all starting to take its toll emotionally on us.

I’d called work that morning in quite a distressed state and said I wasn’t going to be at work – they’d been so supportive of me ever since my diagnosis – they said to take the time so that I could do my research and figure out our options.

Amongst the clinics I rang, I decided to call the Nuffield in Surrey as that’s where our friends had been as well as another friend. I spoke to someone there called Caroline and asked whether it would be possible to transport embryos from there to Athens. She questioned why I wanted to do that and I explained the whole situation to her. She said it would be very costly to transport and that I’d need to arrange the transfer myself via an international courier and the process would be quite complex. She told me that the best place for me was here in the UK, that their clinic had just been audited by the HFEA who were thoroughly impressed by all their working practices and had received an outstanding assessment. She went on to explain similar information that the consultant at QA had and said that acting quickly really was crucial in all of this. Caroline had such a way about her that she made me feel completely at ease and that I could totally entrust our treatment with them.

In the meantime my friend had come back to me and said her contact had recommended the Royal Marsden Hospital in London (I did not know this at the time but this is a leading cancer hospital). I wanted to consider this an option, however the time it would take to drive there and back made it an unsuitable choice for us. After speaking with Pats about the pros and cons of each, we agreed that we would use the Nuffield for our treatment. Caroline went on to book us an appointment with the consultant that Friday. Apparently there is normally is a 6-8 week waiting list, but because of my circumstances we were able to jump the queue – the one and only benefit of having cancer!

She sent me a list of all the tests we’d need to have in place before the appointment.  I then spent the next day or so running from our new doctor’s surgery to have tests and to my old surgery collecting copies of previous smear tests, and Pats and I both had our bloods taken at a separate local hospital .

At last, I could see a way ahead and felt confident we’d chosen a good clinic with people who would take good care of us.

A glimmer of hope

The very next day we were back at the hospital again, this time to meet with the fertility specialist that Claire had arranged. I felt really nervous going back to the hospital that day. What were they going to say to us? Would they burst the bubble on the dream of our little family? Pats and I sat in the waiting room together clutching each other’s hand.

We were greeted by a chap who was a Consultant Gynaecologist. He started off asking us lots of questions about our history, health and my cancer diagnosis and treatment plan. After this he went on to explain that there was a possibility of trying to preserve some embryos before I undergo treatment.

He said if I wasn’t undergoing chemotherapy then my ovaries wouldn’t be affected in a major way by the anti-oestrogen tablets but it would obviously delay matters if I wanted to get pregnant.  ‘And at the age of 39, time is much more of the essence than if you were 32/33 because whilst you’re on the anti-oestrogens you can’t get pregnant – so there will be a delay of a number of years. If you were to get the all clear in 2-3 years’ time you’ll be 41/42 and your chances of getting pregnant then are less than they are now.’ He went on to say that most ladies they see  are having chemotherapy which destroys some of the eggs meaning their chances of getting pregnant are much less than those having the treatment that was planned for me.

‘So it is possible that you’re able to conceive after the treatment, but there will be an effective delay.’ His words brought a sense of relief and I was now starting to feel much better and more confident that there was still a chance for us further down the line – albeit when we are a bit older!

He said if we wanted to go ahead and preserve and store the embryos that would mean the chances of getting pregnant would be from the age of a 39-year old as opposed to someone aged 41-42.  I would need to undergo an IVF cycle which he said was complicated and expensive, because in my circumstances it was unlikely that funding would be available. He said the costs were substantial and would be approximately £4,000 for an attempt at IVF and storing embryos. He stressed that if we wanted to go down that road it would need to be done as soon as possible and that they would try to fit it in between surgery and the medical treatment and that I would need to liaise with my oncologist as it will mean the tamoxifen treatment will be delayed by a number of weeks.

He said the first decision we would need to make is whether we wanted to go down that road and also whether we were prepared to pay for it. I asked him if the funding wasn’t available because of our age or where we lived and he said that IVF funding on the NHS is very limited and is available for some couples, but that we’d need to tick a number of boxes and that unfortunately one of the boxes is that I should not be older than 34. I had heard there was an age limit from friends who had tried for NHS funding but thought that 34 seemed a really low age to cap it and that the tick box criteria seemed a little unfair given our circumstances. He explained that they try to obtain individual funding for special cases but that those are for women having chemotherapy because they have less of a chance of conceiving afterwards.

If we wanted to go down that road, he said they would need to make quite a few arrangements to fit it all in. The treatment wouldn’t be available in Portsmouth, with the nearest clinic being at the unit in the Princess Anne hospital in Southampton. We would both need blood tests for screening, I would need an ultrasound scan plus there would be a lot of paperwork to be completed.  I asked whether that was an NHS unit in Southampton and he said it was but that they also see people who are paying for treatment themselves. He said it wasn’t essential that we go there, if we were paying for the treatment we could go anywhere we wanted.

They would start the treatment on the first day of the period I have following the surgery. I asked if there was any risk of taking the fertility medication. He said that the drugs used will stimulate the ovaries to produce a good amount of eggs meaning they’ll be working on overtime and therefore the oestrogen levels in my blood will be pretty high. With breast cancer there is always a concern that the high oestrogen levels may have a detrimental effect on the cancer itself. He said it wasn’t proven, but it certainly was there and to try and counteract this they would give me an additional drug that they don’t normally use to try to keep oestrogen to a lower level. He said the risk is more theoretical than real but the theoretical risk is certainly there

Pats asked how long we had to decide, what with not being eligible for funding, we’d need to organise how we pay for it if we were to go down this route. He said we’d need to decide before the surgery, and preferably sooner, because we would need the blood tests done and to have results and paperwork in place.

I asked if whether being pregnant in the future would have an effect on whether the cancer would come back. He said I would need to speak to my oncologist about that but in general the risk would be small. ‘They wouldn’t advise you to get pregnant unless they’re happy anyway – they’re not going to tell you to get pregnant 6 months after surgery – it’s going to be a number of years.’ Pats commented that I’d need to take the anti hormone tablets for five years, to which he said that it may not necessarily be as long as that ‘Medicine is not black and white, it depends on individual circumstances and they may be willing to reduce that time period.’  Well that was another positive, perhaps I wouldn’t be as old or have to wait as long as we initially thought.

He went on to say that as part of the treatment I’d need to go onto drugs that would take control of my ovaries allowing them to create more than one egg. During the treatment I would undergo regular scans – 2-3 times a week. The treatment would take 2-3 weeks and involve a small operation to take the eggs out of the ovaries and that on the day Pats’s ‘services would be required’. They would inseminate the eggs with his sample in the lab on the same day. The next day they would know how many have fertilised and they would let them grow into embryos for approx five days and then freeze them. Only embryos of good quality would be frozen – average quality embryos wouldn’t survive the freezing and thawing process. The embryos could then be stored for up to ten years.

Pats asked about what happens when the time comes to put the embryo back in. He said that this would be a much simpler process, where they would give me some drugs – but nowhere near the same amount – and it would then just be a matter of preparing the lining of the womb and then putting them back. He said the chances of it working putting one embryo back with a good quality egg is on average one in three (about 35%). In my case it would be less because of my age, and for a 39-year old it would be around 25% per embryo put back. But he said we may have more than one egg to put back and that each one put back will have the same chance each time (assuming the embryos survive freezing). The charge each time to put an embryo back would be approx £1,000.

He then gave us some more detailed information to take away and think about. He reiterated that there would be financial implications for us and that we’d be expected to pay the cost when we start the treatment itself. He said he only works at the hospital on Tuesday’s and Thursday’s so would try and fit us in the following week and recommended we went in on that Friday to get the blood tests underway.

As we both left the hospital I could tell Pats was still thinking about whether we should do it or not – and at £5,000 it’s certainly not a cheap option. But to me it was our only option and this was the only window in which we could ever do it as there would be no other options further down the line given how old I’d be.

Someone had offered us a chance and to me it was one we should grab with both hands.  The 25% success rate is not amazing but hey, it’s 25 times better than 0.