Re-excision operation

I didn’t feel anywhere as near as nervous going into hospital for this operation, as the third operation in as many weeks this was starting to get old hat!

I had been called the afternoon before by a lady to say I was third on the list and so I could go in at 07:30 instead of 07:00. Half an hour extra is a long time in the morning 😉

Pats took me to the hospital and we waited in the waiting room. After only about 10 minutes I was called through to see the nurse. Blimey that was quick! I felt bad for the people who obviously had been sat waiting for much longer than I had!

The nurse went through the paperwork with me – it was much quicker than last time as I’d definitely be out later that day. I then saw my surgeon and she explained what she was going to do – go back into the same scar again to remove the additional tissue. I asked her why there was a lump that felt hard there and she said it was because that’s where they’d taken the lump out and that there was a seroma there – a collection of fluid where they had operated. She said this was good because it also indicated to them exactly where they needed to go in.

I saw the anaesthetist who was a lovely Italian lady with a cheeky sense of humour. She said they’ve give me some paracetamol, I’d then go down to theatre where she would ask me the same stupid questions again – not because she’d forgotten the answers but to double check again who I am. She’d then give me some ‘champagne’ and off I’d go to sleep!

I sat back in the waiting room holding on to the extremely fetching embolism stockings they gave me. Pats and I sat together for a bit longer and then I was called back through. I kissed Pats goodbye and off I trotted.

I went through and got changed into my gown and slippers and thought I must not have too long to wait as after I’d got to this stage last time I’d gone through relatively quickly. I joined three other ladies who were already waiting. One of them would be called to go through, then another two new ladies would come and sit. This went on all morning and those of us who had been sat waiting the longest were getting really fidgety and tired. It was 10:50 and I was absolutely gasping for a cuppa!

A nurse came and got me and finally we went downstairs…to go and sit in another waiting room! Luckily I had a book with me (The Secret History of a Woman Patient) and had managed to get halfway through it and then at 11:30 I was taken through to the theatre.

I felt positively calm this time knowing exactly what was going to happen. As I lay on the bed the anaesthetist injected with my first glass of ‘champagne’, I felt it go in but it didn’t make me close my eyes. ‘Are you feeling sleepy?’ the nurse asked. No I was wide awake! They put an oxygen mask on me and then came some more ‘champagne’. I wasn’t getting tipsy on this today until she delivered the final shot and off I drifted.

I awoke in the recovery room feeling woozy, but ok. Not in as much pain as I had after the egg collection the previous Friday! The nice nurses kept constant checks on me and after a while I was bought tea and marmite on toast.. my favourite. The nurse must have loved marmite herself as it was slathered on thickly – just how I like it!

Darren came to get me a short while afterwards and I went home and slept right through until the evening.

Harvest festival

After two weeks of twice daily injections the day had come to harvest my eggs. We’d both awoken really early that day and I wished I hadn’t had the glass of wine the previous evening (although it was very much needed after the news of impending chemo) as my mouth felt really dry. Just what you want when you’re not allowed to drink any fluids! We arrived at the hospital early – 06:30. Pats ate some brekkie in the car and we waited in the reception area. As we sat and waited, teams of people started to trickle through the door, all in pairs. We only waited for about 10 minutes before a lady called my name and showed us to my room.

Well this was a completely different experience – a bed to lay on, a TV and an en-suite bathroom! A lovely lady called Kate introduced herself and asked some medical questions. She had funny sense of humour and had us both laughing! Then another lady came with a menu with a list of lunch options for us to choose from – Pats too!

They’d said I’d be going to theatre at approx 09:20. As the hours passed I felt more and more bloated and really quite uncomfortable. Perhaps it was because I hadn’t had any water that was making it worse (I’d had to drink at least two litres of water a day for the last two weeks). I was relieved when they came to get me and, after kissing Pats goodbye, I waddled down to the theatre with two nurses. The nurse said they would call Pats shortly to perform his half of the procedure!

As I laid on the bed ready to go into theatre I said that I felt really quite swollen. The anaesthetist fitted the cannula to my arm and as the nurse chatted away to me to distract me I gradually felt myself floating off.

I came round to the sound of nurses talking around me and I felt pain in my abdomen. ‘Do you want something for the pain?’ they asked. ‘Yes please’, I said in a daze. She gave me some pethodene which relieved it slightly. A little bit later she asked me again how the pain was and I asked for more, this time it relieved the pain much better.

They wheeled me back up to the room where I was reunited with Pats and they told us that they’d collected 29 eggs. Wow! How amazing we thought. A bumper crop and super harvest festival it seemed! They were surprised that there were an extra six eggs that they hadn’t seen on the scan earlier on in the week. The embryologist asked us what we’d like to do in terms of IVF and 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% 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).

All along they had said that they would use the ICSI method, however the embryologist said that as there were so many eggs we could do half and half. We asked her what her opinion was and she suggested doing this as IVF is a more natural fertilisation method.

They then bought us a delicious lunch and after a short while I had recovered enough, so got dressed and we made our way home. They said they would call us in the morning to let us know how many of the eggs had fertilised.

The embryologist called us early the following morning and told us that eight of the eggs had fertilised. Eight? Crikey. A friend had already warned me that the numbers would drop off but I really hadn’t anticipated it being that much, especially as there were so many eggs to start with. She asked if we wanted to take all the embryos onto to 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 over this period. This time-lapse video shows an embryo from the time of fertilisation developing through to the blastocyst stage.

Blastocysts potentially have an increased 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, and as ours were going to be stored in the freezer, they would have a better chance of surviving the freezing and thawing process.

It was a tough call to take as we could have potentially frozen all the embryos we had, but known that they might not be the best quality. Or we could take them all on and risk losing a high percentage of them. At the outset we thought the best option was the blastocyst stage so we agreed for them to take all the remaining ones on.

By Sunday we were down to five embryos – three that were doing well, doing what they should have. The rest were dividing but not as well as they’d like. We’d have to wait and be patient for the remaining ones.

The more I thought about this during the day 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 it all looked now. I felt absolutely terrible too, I was so bloated, (I’d put on at least 4-5 pounds since having the eggs collected) and it felt uncomfortable to do anything other than sit or lay down. They certainly didn’t pre-warn me that I’d feel like this!

As the days passed and the numbers kept decreasing, I also I also started to wonder if I’d be able to fit in another cycle to harvest more eggs before the chemo starts. I spoke to the nurse at the Nuffield and she said I’d have to go back for a scan to check that my ovaries have gone back to normal levels and that if I was alright they could potentially take me through another short cycle.

Pats was really concerned about pumping me with more oestrogen and said there was no point in having more embryos in the freezer if it was going to put me at risk. I knew he was right but I felt so annoyed that we hadn’t chosen to have all the eggs fertilised via the ICSI method. Fancy asking us, or especially me, when I’ve just literally come out of theatre and am probably not having the clearest of heads to make such a big decision. But of course it was too late, so tormenting myself with the what if’s was just more torture.

By the Wednesday the embryologist called to say that three of our little embryos had reached blastocyst stage – go Moonmins! One of them was slightly lower quality than the other two, but had still made it to blasto stage. She didn’t think the remaining two would make it but they would keep them on until Thursday/Friday as she could be proved wrong.

Whilst we were both pleased that three of our little Moonmins were safely banked in the freezer, I couldn’t help feeling gutted that there weren’t more. This will seem really ungrateful to others as I know some are not lucky enough to have the opportunity to have IVF or to even get three so I must put it into perspective. I’d finally taken 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. This is what we have and we have to pray that will be enough.

I was also gutted that those little Moonmins were going into the freezer. All those other ladies at the clinic would have been having their embryos implanted back into them and they would be onto the next step of their journey. We now had to wait.

Chemotherapy and scalp cooling – to cap or not to cap: that is the question

My first chemotherapy cycle is due to start in a few weeks’ time and I still can’t decide whether to try the cold cap to try and prevent losing my hair.  The prospect of any woman losing her hair is certainly very frightening – another giant signpost of this dastardly disease.

I have been in touch with some lovely ladies who have tried the cap and it has been successful for them and with those who decided not to.

I had reservations before I met my oncologist as to the safety of using a cold cap as I’d heard that by using it the scalp wouldn’t be protected if the cancer cells were to spread to this area (metastasis). Metastatic breast cancer is cancer that has spread from the breast to another part of the body or has come back in another distant location.

I raised my concerns with my oncologist and he said they simply wouldn’t recommend using the cold cap if it would cause the patient any harm.  He handed me some printed information from Macmillan on scalp cooling to read. In it there is a section titled “Concerns about scalp cooling” where it says:

“Some doctors worry about using scalp cooling with treatment that aims to cure the cancer. They are concerned that cancer cells that may have spread to the scalp may be more likely to survive chemotherapy if scalp cooling is used. However, cancer spreading to the scalp is very uncommon. Clinical trials have shown that the risk of this occurring as a result of scalp cooling is very small, except in haematological cancers. Some people may prefer not to have scalp cooling because of this, but others are happy to try it.”

He put me down to try it. Whilst chatting to my breast care nurse I also voiced my concerns again, and she echoed the same sentiment of my oncologist, they wouldn’t recommend or use it if it were to put the patient at risk.

I’d also been in touch with another lady who is currently undergoing chemotherapy and who has successfully used the cold cap. Now on her fourth cycle of treatment she has kept her hair and is pleased with the result.

I really don’t want to lose my hair. I think that’s a given for any women diagnosed with cancer. I have shoulder length hair and if I have more than an inch cut off at the hairdressers I feel like I’ve been scalped. I hate to wear my hair up, I feel exposed, and it’s nice to “hide” behind if that makes sense. However for the sake of keeping my hair, that will ultimately grow back, do I take this very minuscule risk?! Of course, the cold cap doesn’t work for everyone, so I may end up losing my hair anyway.

I decided to call the breast cancer care helpline (0808 800 6000) to ask what their thoughts were. The lady explained that evidence suggests that it is safe for people with breast cancer to use and that the risk is only for people who have a haematological cancer such as leukaemia. She also pointed me to an article that ASCO (the American Society of Clinical Oncology) had recently published in which she said that this risk was understood to be the case 30 years ago, however they understand the biology of cancer far better today.

The article reads: “We understand a lot more about the biology of cancer and metastatic disease now; it turns out that the risk of metastases to the scalp is extremely low, and as a first event for advanced disease, it is even lower. Mostly, scalp metatases are seen after people have already had metastases to other places in the body, and in total, only about 1.2% of all metastases are found in the scalp.

Scalp metastasis would have to be the first site of metastatic disease to postulate that is has anything to do with scalp cooling, and that is very uncommon in the studies that are available. I’ve reviewed over 4,000 patients reported in clinical trials, and it is just exceedingly rare and doesn’t seem to be any higher in risk, from what we can tell, in patients who are using the cold cap.”

The lady on the helpline said it really was down to personal choice. I need to do what is best for me, what sits most comfortably in my mind and will give me the least amount of worry.

More choices, and more difficult decisions. I’m a natural born worrier and not the most of decisive of people let’s say! I have a few more weeks yet to decide. I’m just wondering if anyone else has been in this quandary and what helped you to decide?

Surgery results

The appointment to find out the results of the lumpectomy was scheduled for two weeks after the surgery. I’d psyched myself up massively for the appointment, but rather frustratingly on the morning of the day of the appointment, I received a call from the breast care nurse to say there had been a delay with my results. I’d need to go back the following week instead – ahhh more waiting! I know it wasn’t the nurses fault, but there really is nothing worse than waiting for results, as you feel stuck in complete limbo.

When the Thursday of the following week came round, strangely enough I felt completely different to how I had the previous week. I had been reading a book called Get Some Headspace by Andi Puddicombe, and I don’t know if it was as a result of trying to observe my worrying thoughts as opposed to getting caught up in them and getting swept away by them, but I seemed to feel much calmer.

After a long wait we were called in to see the doctor. He carried out a quick inspection of the scar and said I was healing nicely. As we sat down together he then started off by telling us that “the results were mixed.” Ok here we go I thought to myself, thinking back to the last time I’d been sat opposite him when he told me about the ‘incidental findings’ they’d found.

He reiterated the fact that the lymph nodes they’d tested were all clear and how positive that was. He then said that rather than being the predicted 1cm in size, the tumour was actually 2.4cm and a stage 2 cancer. Shit I thought to myself and grabbed Pats’ hand tightly.

He then explained about the clear margins that they look to achieve around each side of the tumour. Basically 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. The doctor said that whilst three of the sides were clear, one didn’t have a clear enough margin so they would need to do a re-excision and take a bit more out.

He also then went on to say that the cancer I have is HER2 positive. About 20-25% of breast cancers have an increase in the number of copies of a gene called the human epidermal growth factor receptor 2 (HER2), called a HER2-positive cancer. The gene makes a protein that is found on the cancer cell which stimulates them to grow; these types of cancers usually grow more quickly. Because of this I would need to have chemotherapy along with a drug called Herceptin.

Chemotherapy? Did he really just say that? The word reverberated around my head. Freakily enough, I’d actually had a dream the very night before in which a doctor had told me that I’d need chemo. In my dream I had broken down into tears wailing “What about my hair?” Maybe subconsciously I knew they were going to tell me this, I don’t know, but I wasn’t the same soggy mess I had been when I’d sat in front of him a month ago.

I asked a couple of questions in quite a matter of fact way – I guess it felt like it wasn’t happening to me. All along they’d been positive about it but hadn’t been able to completely rule out chemo. I was due to go in to have my eggs harvested the following day and had been cutting out drinking alcohol but after leaving the hospital I really needed just one glass of wine to try and make this news a little more palatable!

I called my dear Mum and told her the results. She was clearly devastated. ‘My poor poppet’, she said. ‘I’ll be fine Mum,’ I said trying to reassure her. ‘It is what it is, I’ve just got to get on with it..I might need to get myself a nice wig though,’ I said jokingly. After chatting about it all for a bit she finally said ‘Think of the money you’ll save from not getting your hair done,’ putting a humorous slant on it. This made me feel better, I needed to look for positives and to try and laugh about it to take the edge off it all I guess.

I then called my sister and had a similar conversation with her. “Don’t worry, I’ll be ok – it’s just going to take a bit longer than we thought”, I said. Having never been on the receiving end of someone I love telling me such news, I really don’t know how I would respond, but I felt like I needed to hold other people up and make them feel better about it.

I felt surprisingly okay about it all on that day, perhaps it just hadn’t sunk in yet. I just kept telling myself that I’m a strong and positive person and I’ll get through this.

I then spoke to friends when I got home, all of whom asked me various questions that hadn’t even registered when I was with the doctor. I hadn’t followed up by asking him directly what my prognosis was, it simply didn’t occur to me at the time. I hadn’t even asked when the chemo would start.

IVF treatment

About a week after having the lumpectomy I started the IVF treatment. My hubby had a meeting in the city on the day of the appointment and as I wasn’t yet able to drive, he dropped me off at the clinic and would come and pick me up later.

I met with the nurse who showed me all the kit, the needles and how to mix the drugs together and told me how and when to do the injections. I’d tried my hardest to concentrate on every little detail she was saying so I didn’t get anything wrong. I went on my way with my kit bag containing all the equipment I’d need – needles, plastic tops to open the glass water vials, a sharps box to dispose of the needles and I went down to the pharmacy area to pick up the prescription for the medication. The nurse had prescribed me enough drugs to last for seven days. I would need to go back for a scan the following week and collect the next lot of medication.

As I sat downstairs in the main reception area waiting for Pats, I somehow managed to get myself in a bit of a state and started worrying that I wouldn’t remember what the nurse had told me when we got home. Since my diagnosis I don’t seem to be able to take in or remember information as well as I have previously – slightly frustrating!

Pats arrived at the hospital and saw I was in a bit of a pickle so we went back up to the fertility clinic and the nurse kindly went through the whole procedure again. I felt so silly, but better to be safe in the knowledge of what we were doing – it wasn’t like I was just going to be popping a couple of paracetamols twice a day!

The Menopur injection needed to be taken at the same time each evening, with a 30-minute grace period either side of when you first injected it. There are two vials of drugs that need to have water injected into them, mixed together, and then finally sucked back up into the needle ready for injecting.

We started at 7.30pm that evening and Pats asked me if I wanted him to inject the needle or if I preferred to do it myself. Having already inserted an empty needle into my tummy on a previous visit to the clinic, I felt confident I could do this again. It was the strangest feeling the first time I did this. Not in that it really hurt, more that after our months and months of trying to conceive naturally, here we were mixing up drugs together and injecting me with a needle to be able to create our child. This certainly wasn’t going to be the romantic conception we had hoped for, but bingo the first one was complete.

We did the same the following night and then I had to inject a second drug (Cetrotide) first thing the following morning (there was only 10 minutes grace for this one). I decided 7.30am would be a reasonable hour to do this one and as there was no fiddly mixing between two vials I did this one by myself. Within a matter of days we had both got used to this routine, and whilst I won’t say it was “normal”, it certainly didn’t seem quite so strange.

I continued with the injections, and I must say that having heard other people’s experiences, I expected to be much more hormonal than I was. I’d warned Pats about potential outbursts that might come out. To be honest at that time of the month I’m not usually throwing abuse and saucepans anyway so the prospect of doing so was a little disturbing!

We returned to the clinic the following Monday and the scan showed I was responding well to the treatment and that 17 follicles in total were growing. The nurse said that to put it into perspective, the average number of follicles that ladies have is 8-10. Wow great news! The biggest was 19mm in size and the smallest 9mm. The nurse explained that those that were 14mm or above in size were large enough to contain a mature egg (5 were already at that stage).

Because I have “multi-follicular” ovaries (ovaries which contain many enlarged follicles at the same time) they decided at this point to lower the dose of my medication so that they would continue to grow, but avoid overstimulation, or ovarian hyperstimulation syndrome (OHSS).

We returned to the clinic again on the Wednesday and again the scan showed I was continuing to do well with 23 follicles in total growing nicely. They confirmed that I would go in for the operation on the Friday morning for the egg collection.  I was also prescribed Pregnyl (an injection to be stored in the fridge) and said I would receive a call from the nurse later on that day with a specific time at which I needed to do the injection. The Pregnyl injection basically stimulates the follicles to mature, mimicking the action of luteinising hormone (LH), causing the release of the eggs from the ovary.

As I had responded so well in terms of a large number of follicles, they also prescribed me Cabergoline to reduce my risk of OHSS.