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 firstname.lastname@example.org to access the Someone Like Me service.