My Story - by HC

Another in our occasional series of blog posts by ladies who are part of  Womb Cancer Support UK.


The first time I heard the word "cancer" was when I was diagnosed with a recurrence! I know that sounds bizarre, but it's been a long story - let me explain:

In 2001, when I was 43, I started to get some "missing" periods and also some bleeding between periods. My periods had always been very regular - I'd never had children so had never missed even one, so it was unusual for me and having first ruled out pregnancy, I thought I may be entering the peri-menopause. My GP thought the same, but he was vigilant and ran all the usual blood tests etc, which showed nothing abnormal. My mother had been diagnosed with womb cancer a couple of years before, so the GP and I agreed that it would be sensible to get some expert advice. He referred me to a gynaecologist who said that he, too, thought it was probably nothing, as I was on the young side for womb cancer. However, he recognised that I was pretty determined to get some answers, so he suggested "cutting to the chase" and performing a D&C (dilation and curettage) to take a look. He didn't expect to find anything wrong and after the surgery he said that everything looked normal to his eye. So he was very surprised when the pathology results showed atypical hyperplasia, which can be a precursor to cancer. As I was not intending to have children, he suggested a hysterectomy.
So in October 2001, I had a hysterectomy and my ovaries removed. It all went according to plan - my recovery was textbook and the pathology results showed no cancer, so it was assumed that any atypical or potentially cancerous cells had been removed by the D&C. I was sent on my way with the words "you're cured, go and enjoy your life".

It was 7 years later, in November, when I experienced further episodes of pinky discharge and bleeding. So I went back to my GP. I was living in a different town by then, but requested a referral to my original surgeon as I had been very impressed with him during the previous treatment and he was a top notch gynaecological oncologist. After various tests, scans, trans-vaginal biopsy etc I was told that there was a mass present at the vaginal vault - but that the pathology was negative for cancer. Big sigh of relief. My surgeon even said "go and open the champagne", as I am sure that he had thought that this was cancer and he was as relieved as me that it wasn't. We decided that he would operate to take a look and remove it, but as it was benign there was no urgency and it could wait until the New Year.

However, 10 days after that phone call and a few days before Christmas, I got another phone call from him. He was incandescent with rage - he had the unenviable task of telling me that the pathology results had been issued to the MDT (multi-disciplinary team) before they were "final" and that when the final results were issued, they showed that I did, indeed, have a Grade 1 cancer.
I had a recurrence, even though no cancer was ever found at the original hysterectomy!

He spent an hour on the phone talking me through the options and said that the MDT recommended external radiotherapy and that he would set up an appointment with the clinical oncologist to plan and deliver the treatment. In all, he spent about an hour on the phone with me, carefully answering all my questions and helping me to understand what was going to happen. He then asked me to pass the phone to my husband. He then went through everything again with him, to make sure that we had both heard and understood what was happening. Next step was a fast track appointment with the clinical oncologist, who was equally caring and answered all my questions. I was told that external radiotherapy was being performed with curative intent and that they reckoned that there was probably a slightly greater than 50% chance that we could zap the tumour for good with this treatment.

Then followed a raft of appointments, preparation, tattoos - all the fun of the fair to ensure I was ready for external radiotherapy as soon as possible. Imagine - a week before Christmas when you are in full swing shopping, cooking, cleaning etc, with family coming to stay, to have the bombshell of cancer dropped on you after thinking you were clear. Then having to drop everything and make numerous three hour round trips across the county in order to get everything in place to start radiotherapy in the New Year!

Well, Christmas came and went and I was determined to behave as normally as possible in public. Of course, I was pretty frightened, but I tried not to show it when there were others around and I tried to
host Christmas in the usual way. After all, it is my favourite time of year and, quite frankly, I didn't know how many more Christmas's I might have left, so I wanted to try to enjoy this one.
The six and a half weeks of radiotherapy started in early January. I suffered the usual symptoms of loose bowels, tiredness, burnt skin etc made all the more difficult by the long three hour daily journey to and from the cancer centre. I had asked my oncologist to "ramp up" the dose of rays as high as she dared and from my own research, I know that she did. I was relatively young and otherwise fit and strong and I knew enough about this type of cancer to understand that we really only had one shot to get rid of it - if it came back somewhere else in the pelvis, or spread, then the prognosis would most likely be very different.


I had a MRI scan three months after the treatment ended, which showed that the tumour was shrinking but was still there. I was disappointed but my oncologist assured me that it was normal to see this and that we would scan again in another few weeks. At that point, the tumour had disappeared. We were joyous. It stayed like that for two and a half years and my oncologist started smiling at our regular appointments and saying "it's more than 2 years now - this is looking promising". But it was not to be.

I started to get some pelvic aching and discomfort and then I started spotting again. Another round of scans and the terrible news that it was back again. But I always look for the silver lining and this time it was found in the fact that it had not invaded any vital organs and was confined to the pelvis. However, it was wrapped around my colon. I went back to my surgeon. By now we were old friends and he greeted me with the most enormous hug. He said that it was operable but that it would be difficult because of the previous surgery and radiotherapy. He also broke the news that a large part of my sigmoid colon would have to come out and I would need a colostomy. It was news that I had been dreading, as I always knew that if it came back after the radiotherapy, then a colostomy was a probability. However, at least I had had some forewarning that it could happen, so I had researched it and knew what to expect if the worst happened. I asked him in the nicest way whether he was the best man for the job or whether somewhere like the Royal Marsden would be a better option. But he is a wonderful man and wasn't at all offended by my directness. He explained carefully about his experience and I was sure that he was the best person for the job. As well as knowing my "insides" better than anyone else, he had also had a career as a general surgeon before specialising in gynaecological oncology, so I knew that I was in good hands. He is also the neatest surgeon I have ever come across - whenever anyone looks at my scars, it is not unusual for them to comment on the neatness of the needlework!

Surgery went ahead and when I woke up in the recovery room, he was standing there holding my hand. I remember his words "You probably won't remember this conversation later, but I just wanted to tell you that everything went OK - but it was challenging and difficult". A few hours later, when I was back on the ward, completely wired and wide awake due to the drugs they give you to bring you round, he came to see me again. He asked me what I remembered and I told him "you said I was challenging and difficult". He smiled as he was surprised that I remembered. Then he took me through the whole thing and explained that there was a lot of radiotherapy damage and scarring which made the surgery difficult and that he had done the best he could, but he was a bit concerned about whether he'd been able to get a clear margin on the left side. As always, he was managing my expectations as skillfully as it is possible to do.

I went home and started to learn to deal with my colostomy. We gave her a name - Edna - it made it easier to refer to if I ever needed to be excused to go and deal with her. "I just need to check Edna's OK" is much easier to say in public than "I need to go and check on my colostomy". It was a challenge, but not half as bad as I had imagined. I was worried about it showing through my clothes, but the specialist nurse had helped me mark the best spot on my abdomen before surgery and my surgeon had placed it right on target, so it is quite low and I can wear most of the things that I did before the surgery. My husband was very supportive. He encouraged me to do a little more every day and not to shut myself away from the world.
I bought a larger handbag so I always had an emergency "Edna kit" with me. He helped me go into town, stop for a coffee, pop into the supermarket. All the things that were normal but that I was afraid to do now. He always made sure the car was close by and he knew where all the public conveniences were in case I needed them. I gradually learnt that no one was staring at me and no one needed to know about Edna unless I wanted to tell them.
I was the same person I had always been, albeit with a slightly different kind of plumbing. But I was quite weak in those first few weeks and a post op wound infection knocked me back. Every time I moved it felt like a chinese burn across my midriff. But antibiotics sorted it and I gradually got stronger.

When the pathology results came through, a couple of weeks after the surgery, it was exactly as the surgeon said it would be. The margin on the left side wasn't clear but he could have taken no further tissue, due to the structures lining the pelvic side wall. So a course of 6 cycles of carboplatin/taxol chemotherapy was the next phase. Back to my oncologist for pre-chemo assessments, bloods etc. and then the chemo started 5 weeks after the surgery.

Well, what can I say about chemo? It varies for us all. One thing is sure - the hair goes, and quickly! Every hair on my body - eyebrows, lashes, underarms etc was all gone as well as my poor head. I got through the bald phase with a combination of wigs, scarves hats etc. It was winter and bitterly cold, so some days I wore a wig and a hat when I went out. The worst was at night, when my poor little bald head got so cold. I bought a stretchy cotton sleep cap. I chose red, because I thought it was a cheerful colour. What a mistake - when I put it on I laughed until I cried - I looked like a Swan Vesta match!

I fell into a sort of pattern with each chemo cycle. I would have the infusions on Wednesday and go home feeling fine. I was OK for 36-48 hours and then by Friday afternoon/evening I would feel like I had a bad dose of flu with aching limbs and crushing tiredness. I would rest up until it eased, usually on Monday and then I would gradually feel OK again and live a semi-normal life until the next infusion. It was tough, but do-able and if I had to go through it again, then I could do it.

The chemo finished in January 2010 and I started to get back on with my life. There were no guarantees that it would work and my oncologist, when asked whether it would cure it said "well, it is possible, but then again I wouldn't be surprised if it resurfaced again within a couple of years". I decided to retire and take my pension early. I didn't want to get to the end of my life and think "I wish I'd retired earlier".

My oncologist was right. By December 2011 I was starting to get some pelvic aches and pains. A PET scan showed no uptake but there was a mass on the left hand side which was assumed to be scar tissue. The discomfort continued and gradually got worse until I was on ibuprofen or paracetamol all the time. It kept the pain under control but by April 2012 I had a nagging doubt that there was something wrong.
My oncologist agreed. "You know your body - pain has nearly always been an indicator for you of something wrong" she said and ordered another scan. This time it showed uptake by the mass on the left and another, new, tumour with uptake on the right. One of tumours was also constricting the urine flow out of one of my kidneys - not life threatening but something that needed watching and might require the insertion of a stent before it damaged the kidney.

This time, surgery was not an option. The scans showed the tumour too close to the pelvic sidewall so they could not get at it without damaging the major arteries and nerves serving my legs. I sought a second opinion. Not because I doubted my clinical team, but because we were running out of options and I needed to know that I had done everything I could to try to find a cure.
The Royal Marsden came to the same conclusion - too close to the pelvic sidewall and also some evidence from the scan that there could be other seed tumours, which, in turn, could mean that there was other spread in the body. So surgery wouldn't be any good unless they could get everything with clear margins. Less than that would just put me through a major procedure (probably removing the bladder this time) for no real gain.
It was a huge disappointment but, in some ways a comfort to know that the Royal Marsden were no more able to do anything than my own clinical team. I knew my team were good, but now I had proof that no one could do better than they had done.

 
The treatment proposed was hormone therapy. My tumours are highly oestrogen and progesterone receptive (meaning they "feed" on these hormones) The treatment is aimed at suppressing my body's production of oestrogen and therefore "starving" the tumour. I started it in June 2012. It is not an arduous treatment - one tiny yellow Letrozole pill per day. The side effects can include hot flushes (what's new), joint aches and, over a longer period, deterioration of bone density.
So far, I have the flushes (but I did before) and my joints are a bit stiffer than they were. But who knows if this is the drug or general ageing? I was scanned three months after starting it and it showed that the tumours were shrinking. The right one was no longer visible on the scan and the left one had shrunk down in size - still there but under control. The kidney was now draining freely. It has been like that for more than a year.
I know that this is not a cure. But I also know that there are patients who have kept their disease under control for years on this type of treatment. I also know that the body has a tendency to become immune to hormone therapy after a while. However if one type of hormone has worked, there is a good chance that a different one will, too. So I hope that if this one stops working, then I will have success with another one.

I walk through the valley of the shadow every day. This evil disease sits on my shoulder like some demanding devil-child seeking attention. But I will not give in to it. Occasionally, it's presence is heavy and I long to put it down. But it is not to be and I will not let it spoil the rest of my life.

Considering what I have gone through, I am generally fit and well and enjoy most things as I always did. But is it me, or is the sun brighter, the birds' singing more glorious and the changing seasons more beautiful - or do I just value them more now I know how precious time can be?

I remember my late father in his latter years, when burdened with a number of chronic debilitating illnesses. Someone once said to him "how do you feel today". He replied ""I woke up this morning - it is a good day". God Bless you, Dad. That's how I feel, too.