Thursday, 22 September 2016

My Health Scare - Female Cancer Awareness

I've not written many personal posts recently. It's because I've had such an unbelievably tough year and am dealing with everything in my own way, only sharing details with my nearest and dearest. However, I had my own medical drama recently, details of which I have decided to share. This is because, whilst going through it, I found very little information about what to expect. I'd either find horror stories in support groups set up by aggrieved patients or official articles from the medical profession full of clinical facts. Not much in between. I wanted real life human stories of procedures and appointments that went to plan to give me confidence and an understanding of what I was going through. If this post puts one woman's mind at ease, then I'm glad I shared it. Apologies for any graphic, too-much-information, female anatomy driven content - if you are of a squeamish disposition leave now. And remember that this is my own experience and I am not a medical expert, I'm just a woman sharing her story.


I hadn't been feeling well for a while. I had a range of symptoms that I attributed to other things: the extreme tiredness I put down to the stress of  this year including my son's cancer and my daughter's meningitis; the frequent bouts of diarrhoea were put down to a flare up of the IBS I had as a teenager; the heavy bleeding and pelvic pain was put down to the perimenopause. I ignored what my body was telling me, putting on a brave face and muddling through.  It wasn't until after a rather hectic weekend celebrating my son's 7th birthday that I felt that my condition was so bad that I needed help. I rang the doctor and was immediately brought in for a blood test after explaining my symptoms over the phone. I was prescribed some super strength iron tablets (1500% of my RDA daily), tranexamic acid to stop bleeding and some tablets for my stomach.

I had made an appointment for two weeks ahead to discuss the results, but the doctor rang me up as soon as the results were back within a couple of days, informing me that my iron levels were dangerously low putting me at risk of heart failure. She was surprised I was still upright. In addition to this, a marker: CA125, was detected at high levels in my blood and I was being referred to hospital for an urgent ultrasound and to a gynaecologist.

Unsure what CA125 was, I Googled it, discovering that it was a cancer antigen, a marker to the presence of tumours. Just a suggestion of cancer throws your mind into the possibilities of a diagnosis and your mind races. However, one very valuable lesson I learned from my son's Sarcoma diagnosis was that worrying about things prematurely is a waste of energy. Conserve that energy to use when you know what you are up against. So I did my best to keep a level head.

The hospital phoned me and organised my scan within two days of speaking to my doctor, raising the severity of my issue. I also received an appointment through the post to see a gynaecological oncologist. Seeing the word oncologist on the letter made it pretty clear to me that they strongly suspected that I had cancer. Everything was moving so quickly and efficiently, which I was grateful for.

The scan appointment was made more nerve wracking because I went on my own. Ian was away with work and I needed my girls to babysit Freddy, and I didn't want to involve anyone else at this point. However, I had a lovely lady who explained everything in detail. I needed an internal scan, which wasn't at all uncomfortable. I was reassured that my ovaries looked fine which was a relief. But she did find multiple fibroids, some as big as 35mm diameter,  and observed some thickening of the epithelium. Testing wouldn't stop until all gynaecological cancers were ruled out. She explained it as putting together all the pieces of a jigsaw puzzle to see the whole picture, rather than stopping because they found the fibroids.

The oncologist appointment the following week was quite a shock. I didn't know what to expect, so when I was told that he was going to take biopsies from inside my uterus, I was bit taken aback. I was physically examined (he hasn't very gentle and I have a tilted uterus making it quite uncomfortable) and then had an instrument put through my cervix to get a sample of my uterus lining. I also had a smear test, which was due. The consultant wasn't very chatty and I struggled to understand what he was saying. I ended up signing a consent form for a hystereoscopy - with no idea what it was or why I needed it. Reading what I had signed afterwards was quite shocking - seeing possible (albeit very rare) complications of the procedure listed, including emergency hysterectomy, perforated bowel and chance of death.

At home I then Googled the hysteroscopy procedure and found forums of horror stories about pain worse than childbirth and resulting PTSD. There are groups campaigning for it to be banned unless done under general anaesthetic. I was proper worked up and terrified. A combination of this stress and the rough internal resulted in some nasty cramping that radiated into my back, but Ibuprofen and a few hours lying in bed helped.

After chatting to my GP and to a wonderful friend who is a midwife, I realised I needed the procedure  to see what was going on in my womb and to ascertain the position of the fibroids. The internet never tells you about the millions of women who sail through these procedures without bleeding to death! I was reassured and told to stay off the internet.

Once I got my head around the hysteroscopy and why it was necessary, I was ready to have it done. We have a wonderful new women's centre at our local hospital, which is where I was sent for it. The consultant was lovely and joked with me about my fears saying he hadn't killed anyone yet! My biopsy results from my previous appointment had come back normal which was a massive relief. My cancer fears were pretty much eliminated at this point as he told me that the fibroids had caused the elevated CA125 levels. He put me at ease and explained everything.

During the hystereoscopy, a thin camera was inserted into my uterus, which was filled with saline, and I was able to see my insides on a TV screen. It looked like a pink moonscape! Seeing how interested I was, the consultant gave me a guided tour pointing out things of interest along the way. There were two big fibroids that he could see within my uterus, but said the surrounding tissue looked healthy. The other fibroids were located in the muscle wall and so didn't pose a problem. I was told that the ones growing within the uterus needed to come out as they were responsible for the severe bleeding and clotting that had lead to my anaemia. The hysteroscopy was nowhere near as bad as I had feared. It was fine apart from a slightly embarrassing moment when my uterus full of saline gushed out when on the way to the car park - brought back memories of my waters breaking in labour seven years earlier.  Thank goodness for the hospital issue sanitary pads that are very absorbent and generous. I felt fine the next day with very slight bleeding but I overdid it and ended up with nasty cramping and kidney ache for a couple of days, but again pain killers and rest put me right.

Up until recently, fibroid removal meant an operation under general anaesthetic, but some new technology is now available allowing them to do a polypectomy with the patient fully awake. The Myosure Polypectomy procedure involves the insertion of a special instrument into the uterus through a metal tube that pulverises the fibroids and sucks out the mulch. The consultant told me to watch a video of it on YouTube. He was very enthusiastic about this new approach, likening it to Pac-Man chomping through fruit. Having it whilst awake means you stay in control, you can eat and drink as normal beforehand and the recovery time is quicker as you don't have to deal with the effects of general anaethesia. This did appeal to me, as I like to know what is going on!

The day came for this procedure and I was a bit disappointed that it wasn't the same guy who did my hysterescopy. We had a good rapport. Instead I had the lead consultant who was a bit more serious. I was booked in, had my blood pressure and heart rate taken and given painkillers. I then ended up waiting for over three hours in the waiting room, which was psychologically tough I was glad I had arranged childcare for the kids just in case. When I was called in, I got changed into a gown and then sat in the special chair with adjustable stirrups (surprisingly comfortable). I was given local anaesthetic injections in my cervix, which was a weird sensation. The tube that feeds the camera and instruments into the womb is slightly thicker than the one used in the hystereoscopy, but apart from slight discomfort it was fine. The actual fibroid removal was painless. You see them obliterated on the TV screen but there is no sensation. After the two were removed, another three could be seen hiding behind them, so they destroyed them too and shaved away my uterus lining. I had a Mirena coil fitted straight afterwards to prevent any further thickening of the womb lining. The removed tissue is being sent off for testing, the final hurdle to knowing for sure that there are no sinister cells lurking.

The entire procedure only took around 15 minutes, much quicker than opting to have it done under general anaethestic. I felt a bit more delicate afterwards and wanted to get home and lie down. I was allowed to leave once they were sure I wouldn't pass out or throw up. Similarly to the first procedure, I suffered very light bleeding for a day or two with no complications. I rested for a few days afterwards, being sure to drink plenty and take painkillers when needed. My family were great nurses and looked after me.  Now, one week on and I am fine. I have to make an appointment to check the coil position and have a follow up blood test, but then hopefully that will be it.

As a result of this health scare, I have re-evaluated my diet and lifestyle. A cancer scare is a great motivator for doing your best to stay healthy. I am so thankful to my GP and the NHS for being so efficient and thorough with my treatment. However intimate or embarrassing symptoms are, we shouldn't ignore them or self-diagnose or go into denial. I'm so relieved that my problems turned out to be relatively easy to fix, and I'm so glad I phoned the GP when I did.

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