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.

September is Womb Cancer Awareness Month.

Well, its now September 1st and that means we are at the start of  our Womb Cancer Awareness campaign 2013.

We have been running an awareness month since 2011 so this will be our 3rd campaign.

We have lots planned and we hope that you will join us in raising awareness of womb cancer.

It's regarded as a rarer cancer, but still almost 9,000 women each year in the UK are being diagnosed, with around 1,900 dying as a result. And the numbers are rising!

That is why campaigns like this are vital in raising awareness of a cancer that not many women have heard of.

Most women know all about checking their boobs and going for a mammogram to detect breast cancer and going for your smear tests to detect cervical cancer, and again most women have heard about ovarian cancer, but time again we hear from women who had never heard of womb cancer until they were diagnosed with it.

There are no national womb cancer campaigns, so its left to women like us - survivors and women who are living with womb cancer - to shout from the rooftops and help raise awareness and stop the numbers of new diagnoses from rising.

If you are on Facebook then you can join us here https://www.facebook.com/events/407060296081957/ and be part of our campaign to turn FB peach.
From there you can access our FB page and print off some posters to display at you local health centre or surgery. You can also request some leaflets which we will gladly send you that you can ask your surgery to display; or indeed anywhere that women will see them!

Throughout September we will sharing with you here some stories from women who have gone through womb cancer. These women have agreed to share their story to help raise awareness.

We have lots planned so please join us on our FB page or follow us on twitter https://twitter.com/WombCancerUK and keep up to date with what we are doing.

Together we are stronger.

Fight like a girl? You bet I do!!!

Trying to raise awareness of womb cancer can sometimes be a hard task, especially as WCSUK has no resources other than the wonderful women who are part of it.

So any opportunity to "walk the talk" that comes along, is usually taken and this week I shared my story with the Fight Like a Girl Club on their website http://www.fightlikeagirlclub.com/

You can read my story here http://www.fightlikeagirlclub.com/2013/07/kazs-fight-like-a-girl-story-womb-cancer/#.UfvXy3ZwbIX

If you'd like to share your story and help raise awareness then fill in the form here http://www.fightlikeagirlclub.com/power-stories/share-your-story/#.UfvYIHZwbIU

You can also share your story with us here - email us at wombcancersupportuk@hotmail.co.uk for more details.

Kaz

When September Calls!!

Well, it's getting around to that time of year again.......... no, I don't mean Christmas!!!

September will soon be here and that means Womb Cancer Awareness month is nearly upon us again.

This September will be our third awareness month and we've already started planning things!

As usual we will be turning Facebook peach again. This is where we get as many people as possible to join us and change their profile pic, preferably on a daily basis to something peach coloured. Its just a bit of fun but it often gets people asking "WHY" and then we can tell them!

It's all about raising awareness of womb cancer!

I am also holding another online auction of handmade goodies to raise funds for the research project that we are involved with https://www.facebook.com/notes/womb-cancer-support-uk/about-dr-elliss-research/202283526516431

The auction will be on Facebook and can be found here https://www.facebook.com/WombCancerResearch 

What else have we got planned? Well, you might have to wait until a bit nearer the time to find out as there are still a few things to sort out.

But if you've got any idea's on how to raise awareness or want to get involved and do something in your own area then please get in touch with us at wombcancersupportuk@hotmail.co.uk

 The more awareness we can raise about womb cancer the better. We need to reach out to women of all ages, as we know only to well that womb cancer is not just something that post menopausal women get.

Please get involved; help spread the word and lets go peach for womb cancer awareness.

Let down by Race for Life! - by D.V

One of our peach sisters did the CRUK Race for Life today - here is her story of the day!

I was diagnosed with womb cancer in January 2012 having had a terrible few months with symptoms. At the time of my diagnosis, I was told that I was in the minority in that I was under the age of 60 and fit; my hobby is running and I ran 5 marathons in 2011, the last one being just before my symptoms started.
I have since found out that I am not really in the minority. I have, through WCSUK, been in contact with women much younger than I.

Last year, shortly after my radiotherapy finished, I took part in a Race for Life where a cancer survivor stood up on the stage and spoke about her experience of breast cancer. I said to my friends that I would want to do that this year. So a few months ago I contacted Cancer Research UK Race for Life and asked about speaking at their Hyde Park event. They agreed and it was arranged for me to speak before both the 10k and 5k races.

So this morning, I arrived nice and early (8am) and found I was due to speak at 8.08am but they seemed to be a bit disorganised; the sound checks hadn't been run at that point. One of the organisers came to me a while later and explained that they were running behind time and would like to concentrate my efforts before the 5k race after I had run the 10k. Hmmmmmmmm!
There was a lot of nothing going on at the time but I suppose these things happen eh? I did point out that, because of the heat, I would probably take longer than I thought originally and asked to be scheduled as late as possible; I can't run in the heat at all and really suffer. I was told that would be ok.

Off I went and I struggled round the race; it felt like I was melting at times! As soon as I finished, I headed back to the stage where I was told, again, that they were running behind schedule. I was told they would like me to speak at the start of the race and that I would be taken down there just beforehand. I was starting to feel a bit like the poor relative by this time.

A little while later, one of the organisers came and got me and I went behind the barrier and then she instantly disappeared! I waited for a good 15 minutes and she didn't return. I was getting slightly hacked off by this time so I decided to just walk away.

I am quite hurt that this happened to me. I have been looking forward to today and getting the message out about womb cancer. This was a chance to reach around 15,000 women at the same time across the two races and I feel very let down.

There were a couple of key messages I wanted to get across.
There are several conditions that make a woman pre-disposed to womb cancer (being overweight, being childless, being diabetic, being unfit and being over 60). I was none of these. So I wanted to get the message across that this is a cancer that can strike ANYONE at ANY time of their lives.

From experience, some women are under the impression that their cervical smear would detect womb cancer but this is not the case. The only time it would detect it would be if it had already spread to the cervix.

I also wanted to point out that womb cancer is on the rise and that obesity could be a factor going forward as the extra fat in our bodies causes oestrogen-like hormones to be produced and womb cancer is mainly hormone receptive.

Now, I consider those messages are vital for the women in this country. There is no awareness campaign going on and there are no plans for any in the near future so ANYTHING that can be done to bring this disease to the forefront should be done.

Womb cancer is considered one of the rarer cancers so I am wondering if the Race for Life organisers just didn't think it was worth the airtime. How does that make me feel? It makes me feel that possibly my cancer has been discounted. If you think about it, the main colour of anything Race for Life is pink. That is the colour associated with breast cancer. Do they see that as a more worthy cancer to promote? I certainly hope not.

All in all, I have been left with a nasty taste in my mouth. My cancer was just as important as any other cancer. At the end of the day, cancer is cancer and to get that diagnosis is devastating. It denotes the end of life as you know it and a new life going forward. One that has you wondering if 'it' is going to return. One where you possibly have to life with side effects of treatment, as I and many other of my peach sisters have.

And I now find myself wondering if I will bother with Race for Life again. After all, they couldn't be bothered about me could they?

It's a long and weary road we travel!!

12th July 2010 was the day I finished my cancer treatment. So I am now 3 years cancer free - or am I?
How do I know I'm cancer free?

Having cancer isn't like having a headache - you know when a headache has gone! But cancer??
I've not actually had any routine follow ups since my treatment ended so I guess that kind of adds to the apprehension a little.

My Oncologist was that convinced that he'd done his job that he obviously felt there was no need to keep an eye on me with regular check ups.

At first, the fact that I'd been left without the safety net of check ups was very disconcerting, but I've gradually got over that feeling and no longer think about it.
Until recently, that is!

You see, its my 50th Birthday next week! And I guess, like everyone else that has reached that milestone, you start to reflect on your life.
There were times, especially when I first got the diagnosis, and when I was going through chemo that I thought I'd never make the next birthday, let alone my 50th!!

I can't actually think of myself as being 3 years cancer free - I am a 3 year survivor!

I guess that's something worth celebrating!!!!

Who do you tell........and when?

Getting a cancer diagnosis comes as a shock to anyone and it can sometime take some time to fully come to grips with the news.

Most people have close family and friends and once you yourself have adjusted to the news then comes the decision of who to tell and often more importantly, when!

I told no one, other than my husband about my cancer diagnosis until after my hysterectomy. My Consultant told me he was 99.9% sure he could remove it all during surgery so I figured there was no need to tell anyone about the cancer if it could be removed. However, when the pathology results came back and it showed that there were cancer cells still present, then I had to decide who to tell.

My parents and siblings came top of the list. It was hard to tell my parents as they are both elderly and come from an era when a cancer diagnosis often meant death so it was hard trying to convince them that I would be ok. No parent wants to think that their child is going to die before they do.

I decided to be totally open about my diagnosis with friends. I live on a small island and felt it was better to be open about my cancer rather than have the rumours spreading. As it turned out I was the only one on the island with womb cancer at the time - sadly I don't think that's the case anymore.

Some cancer patients find it hard to decide when or even if, to tell their loved ones about their diagnosis. Our lives become thrown into chaos by the news and we feel as though we've lost control. Sometimes hanging onto something we can control, like who we tell, saves us from going under.

People have different reasons for not telling; maybe they don't want people to worry about them; maybe they fear loosing their job; maybe they have a son or daughter just starting Uni; or a grandchild on the way. There are so many reasons.

Sometimes patients don't want to tell anyone because they simply don't believe it themselves; they are often struggling with getting their head around the news of the diagnosis. A good Consultant should be aware of the possibility of this and ask their patients how they will explain their cancer to others, to make sure they understand the situation fully.

Keeping such a diagnosis quiet, a secret from those who love and care for us, is something that need not happen because its precisely at that time of diagnosis that we need the support of those we love.