Author: A Moon
Allie also writes at: https://alliemoonjourney.wordpress.com/
Discovering the Lump and Diagnosis
Up until five months ago I was very happily getting on with a very busy life. My husband and I had recently moved to a lovely village in Hampshire and we were happily enjoying our new home and all that life had to offer.
Just before the Easter weekend, we’d spent a tiring day working on improvements to our house so I ran myself a nice hot bath to soak away the aches and muscle pains. I have to confess, I don’t check myself very regularly at all, and whilst washing myself in the bath, my soapy hand discovered something I hadn’t felt before and I knew it was unfamiliar to me. It felt kind of hard, the size of a marble. Immediately all sorts of thoughts rushed into my head, but I tried to push these out of my mind and think positively hoping that it was just a cyst (apparently 80-90% of lumps found in the breast turn out to be just cysts).
It was a relatively short period of time from the first initial appointment I had at my doctors to visiting the breast screening clinic and then finally being diagnosed with breast cancer. Twenty days all in all - but it felt like an eternity with all the waiting for results of the biopsy and scans. Time usually whooshes by so fast. I have a busy life and I work in a very fast-paced office environment where days hurtle by at a rate of knots. But in that short space of time it felt like my life had been put on pause. As if someone had pressed the button on the remote control that freezes the pane and moves the film forward ever so slowly.
It is a very surreal experience being told you have cancer. You hear all the statistics, and although it's worrying, you never think it’s actually going to be you. I went through a whole range of emotions when I learned of my diagnosis - from shock, disbelief, anger, worry, terror, sadness to being as positive as I could be about it and being determined to not let it beat me.
It can feel very overwhelming at the beginning of a cancer diagnosis. Although I knew people who had unfortunately had cancer, they weren’t close enough to know exactly what it’s like to live with, what feels like, being dealt the worst card in the whole pack. You are all of a sudden immersed in a very unfamiliar and scary world of new terminology, medical terms and phrases, a barrage of information and a myriad of decisions that need to be made.
Fertility Preservation and Hope
My husband and I had been trying for a baby for some time before I was diagnosed, so amongst all the worry and sheer fright of dealing with having cancer, we also had to think about what we wanted to do in terms of trying to preserve my fertility – and fast. After a stressful period of finding the fertility clinic that was best for us, and following my initial lumpectomy I underwent a round of IVF. I have multi-follicular ovaries (ovaries which contain many enlarged follicles at the same time) so I was carefully monitored throughout the treatment to avoid ovarian hyperstimulation syndrome (OHSS).
Over the course of my treatment I injected myself twice daily with IVF drugs and thankfully the scans showed that I had many follicles growing in my ovaries. We were advised that the average number of that most ladies have is eight to ten. When I had the operation to collect my eggs they successfully retrieved 29. We were absolutely overjoyed at how many there were and due to the large number, we agreed to the embryologist’s recommendation to fertilise half of them via the natural IVF method and half via ICSI.
In vitro fertilization (IVF) is where the eggs and sperm are mixed in a petri dish and left overnight to fertilise naturally (60-70% of eggs fertilise this way). Intra-cytoplasmic sperm injection (ICSI) is where the embryologist selects the sperm to use and, using a very tiny needle, gently injects it into the centre of the mature egg. They wait until the following day to see whether the egg fertilises (typically 70-80% of eggs fertilise via this method).
Our initial joy from having so many eggs soon turned to fear and sadness. Whilst we knew all of our eggs wouldn’t get to the embryo stage, we weren't prepared for how steep the drop off in numbers would be. The embryologist called us early the following morning and told us that eight of the eggs had fertilised. Eight? Crikey, we were disappointed but remained hopeful. She then asked if we wanted to take all our embryos onto blastocyst stage.
A blastocyst is an embryo that has been developed for five or six days after insemination, as opposed to conventional IVF where they watch the eggs develop over the next two to three days. With a blastocyst, the embryo has advanced to the five or six-day stage meaning the embryo has divided many more times into more cells. Blastocysts potentially have an increased successful chance of implantation when they are transferred. The majority of fertilised eggs will develop into a three-day old embryo, but only approximately 40% of these embryos will develop into a blastocyst. They are therefore considered to be a better quality embryo with a higher chance of pregnancy. As ours would going to be going straight into the freezer and not used straight away, they would have a better chance of surviving the freezing and thawing process.
More difficult decisions to make. Do we risk taking them all onto blastocyst stage and risk losing a higher percentage of them, or keeping the ones we have but them not being the best quality and not surviving the freezing/thawing. We decided that it would be better to have fewer that were stronger than a larger amount that may not survive. Each morning of the incubation period the embryologist would call and tell us how our little embryos were doing. That period was so stressful and emotional and the more I thought about it the more upset I got. Would we end up with enough quality embryos for us to get pregnant? That and the enormity of everything else going on just got on top of me. It wasn’t supposed to be like this, I’d hoped that by now we would have got pregnant naturally - how different everything now all looked. I felt absolutely terrible too, I was so bloated since having the eggs collected and it felt uncomfortable to do anything other than sit or lay down. Eventually three of our embryos made it to the blastocyst stage. One of them was slightly lower quality than the other two, but had still successfully made it to blastocyst.
Shortly after the egg retrieval we received the results of my lumpectomy surgery. After my initial core biopsy, I was diagnosed with a stage 1, grade 1, oestrogen receptive (ER+) cancer of approximately 1cm in size. Unfortunately that diagnosis changed to stage 2, grade 2, ER+, HER2+ and was 2.4cm in size. Human epidermal growth factor 2 (HER2), is a protein that promotes the growth of cancer cells stimulating them to divide and grow faster making it a more aggressive cancer. In approximately 15-25% of breast cancers, the cancer cells have a gene mutation that makes an excess of the HER2 protein. As well as having to take Tamoxifen (anti-hormone tablets for oestrogen receptive cancers) for between five and ten years and a course of radiotherapy, because of this HER2 positivity I would also now have to have Herceptin injections for a year and was advised to have chemotherapy to reduce the risk of recurrence - another big blow to us.
Luckily there was no sign of cancerous cells in any my lymph nodes which was a massive relief. In surgery it is the surgeon’s goal is to take out all of the breast cancer along with a rim of normal tissue around it. This is to be sure that all of the cancer has been removed. The pathologist then examines this rim of tissue, the surgical margin, to be sure it’s clear of any cancer cells. My surgeon told us that whilst three of the sides were clear, one didn’t have a clear enough margin so they would need to operate again to do a re-excision taking more tissue out.
After much lengthy consideration I finally came to the decision that having another round of IVF treatment, especially when there were still cancerous cells left in me after the lumpectomy, wasn’t the right thing to do. We must hope and pray that the embryos that we do have is enough.
As we were visiting the fertility clinic, we were surrounded by other couples who were all going through the same treatment. I felt so upset that our little embryos were going into the freezer whilst all the other ladies were having their embryos implanted back into them and they would be onto the next step of their journey. We now had to just wait and be patient. Damn cancer.
Whilst we were both pleased that three of our little embryos were safely banked in the freezer, I couldn’t help feeling gutted that there weren’t more. I know this will seem rather ungrateful as I know others are not lucky enough to have the opportunity to have IVF or to even get one embryo so I must put it into perspective. We were very fortunate to be granted NHS funding for our IVF through a private clinic (after initially being turned down by the specialist we were referred to within the NHS) and that was a huge weight lifted off of us in financial terms. I would recommend that anyone who has just been diagnosed with cancer and wants to start a family to ask to be referred to a fertility specialist immediately as time really is of the essence.
We will have to wait two years from when my treatment finishes before we can “plan” our pregnancy. That seems like such a long way away at the moment and I also wonder how I will feel about the possibility of having a child after all of this. I’ve gone from a place where all I wanted was to desperately get pregnant and to start a family with my husband. Now my head is filled more with worry when I think about it than with joy about the prospect of it possibly happening. If I were to get pregnant, and that’s a massive if, will all the hormones in my body make the cancer come back? Would it therefore be better to miss out on parenthood and live longer? What if we did have a child and the cancer came back? How could you bear the thought of leaving your daughter or son motherless and my husband a widowed, single parent? I’m sure once I’m out the other side of completing my treatment, the “cancer fog” will hopefully subside and things will become a little clearer.
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Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.
Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.
Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.
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