Friday 30 November 2012

Assessment of sexual difficulties after surgery or pelvic radiotherapy for cervical and endometrial cancer.

We have been asked to advertise the following research study on behalf of Dr Isabel White, with approval from the London-Westminster Ethics Committee:

'Assessment of sexual difficulties after surgery or pelvic radiotherapy for cervical and endometrial cancer.

Would you like to take part?

We are interested in how the possible effects of pelvic surgery and / or radiotherapy on women’s sexual lives are assessed by the clinical staff providing your care. Whilst this is a private and sensitive topic it is important to ensure that adequate information and support about this aspect of women’s lives is provided both during and following cancer treatment.

Women and healthcare professionals who took part in stage 1 of this study have designed a questionnaire about women’s sexual recovery.

Stage 2 of the study runs from July 2012 – Feb 2013 (note: this has now been extended to 31st July 2013.) and we would like at least 200 women to complete this new questionnaire so that we can test its suitability for use in oncology follow-up clinics.

If you have completed surgery and / or radiotherapy for womb (endometrial, uterus) cancer between three months and 5 years previously, and are aged over 18 years, we would like to talk to you about the study in person or on the telephone.

If you take part in our study:• You will be sent study information and the new questionnaire by mail to your address• The questionnaire should take about 20-30 minutes to complete• We will provide a freepost envelope for you to return the questionnaire • All the information collected about you during the study will be kept strictly confidential• Your cancer care will not be affected in any way. The study will not involve any more of your time after this.

Your participation will help women and health professionals to improve the discussion and management of treatment effects on sexual recovery.

 If you are interested in taking part or have any questions about the study, please get in touch with the lead researcher at King’s College by contacting Isabel White on 020 7848 3038 or via email: isabella.white@kcl.ac.uk

 This research has been approved by London-Westminster Research Ethics Committee .

 Chief Investigator: Dr. Isabel White.'


If any of  you would like to take part in this study, please contact Dr White directly either by telephone or by email. We understand that this is a sensitive subject but the more women that come forward to take part the mote thorough the research will be. Thank you.

Tuesday 27 November 2012

Seeing through the fog!

I used to have an excellent memory! Now I struggle to remember what day it is and why I went from one room into the other to fetch something - but can't remember what!!!

I'd never heard of "chemo brain fog" - nobody mentioned anything about it before I endured my 4 rounds of chemotherapy for womb cancer back in 2010. There was nothing about it in the leaflet that the hospital gave me on the morning of my first session.

Even when,  a week or so after the second session, I noticed that I was getting a little forgetful, no one said "oh, that's chemo brain fog".

It must have been sometime during the 5 weeks of radiotherapy that followed the chemotherapy when I was sat in the waiting room talking to other patients that someone mentioned it! I had to ask what it was!! But of course, I already knew what it was! Loosing concentration; forgetting simple things like my phone number or postcode, even my date of birth that you had to tell the nurses every time you arrived at the radiotherapy unit on a daily basis!!
Then is progressed to not knowing what day of the week it was when I woke up in the morning; walking from one room to another and not remembering what you had gone for. Opening the fridge for something - but not knowing exactly what!!!!

Well, now there has been some research to prove that "chemo brain fog" is something very real!! http://www.healthline.com/health-blogs/healthline-connects/chemotherapy-linked-to-decreased-brain-function-112612

Through the use of PET/CT scans researchers have been able to show that there are changes in brain function. It is hoped that by understanding these changes, treatments could be improved.

Other studies showed that cognitive deficits could last for some years after treatment has ended.

At least we now know that its not all in our head, and these problems are real. I guess we just have to learn to accept our new limitations and not get worked up about them.

Somethings are easier said than done though.

Wednesday 21 November 2012

The new normal - by D.V

Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!

Well, life is starting to get back to some sort of normality now. It’s over six months since I finished my radiotherapy and as I sit here thinking back over the last year, I find myself thinking about the new normal.

Before cancer, I was very active. I ran as a hobby and mostly ran marathons. I love that distance. It’s a battle between my body and my mind and my body always wins. At least I think it’s my body! The pain I go through during races is unbelievable at times (mainly my fault; I tend to undertrain!). My legs are screaming out to stop but my mind tells them to carry on. So maybe it’s my mind that wins? Perhaps it’s both working together for the best outcome?

I am now gradually getting my confidence back with my hobby. I barely ran for almost a year; I couldn’t. The symptoms of the cancer made it impossible and I felt so damn rough anyway, and then the radiotherapy took its toll on me; I suffered from nausea most of the time and lived on Imodium. In fact I still carry that around with me all the time, just in case, and I have a ‘Just can’t wait’ card from the Bladder and Bowel Foundation which goes everywhere with me. Thankfully, I have only had to use that once.

My confidence took a knock with work too which surprised the hell out of me. I was off for five and a half months and found it quite hard to settle back in to my role. I think I am just about getting there with that now. I went back to work two weeks after my radiotherapy finished as I was fed up being ill and wanted to be ‘normal’ again.

There’s that word again; normal.

I don’t think life will ever be ‘normal’ again. I have no womb for a start. Not that I miss that; oh no! Not at all! So the constant fear of symptoms is gone to a certain extent. But the cancer may return at some time in the future and bleeding is one of the first signs. So it seems I still have to be ‘womb aware’ even though I don’t have one! I asked my oncologist how I would bleed if I have no womb. His answer was that any new growths could settle at the top of my vagina and bleed down into it. So I still worry a little.

Also, the surgery changed my body. As I have no cervix any more, my vagina is more like a test tube. I find myself wondering if that would make sex any different. I am in a new relationship and am almost afraid to progress to the sexual side of it. That is definitely not ‘normal’ for me! Luckily he is very patient with me. Phew!
I have also piled on two stones in weight which I am finding hard to shift and that worries me too. I think I look fat and would hate anyone else to see me naked! So it appears I have to build my confidence up with regards to my body too eh? My running should help with that. So perhaps in this, my mind and my body will work together here too?

It seems I have learnt a lot from my running. After radiotherapy I was very tired most of the time. But I thought back to when I first started running and how, to go further, I had to push myself a little more each week. The more running you do, the more you can do. I applied this to my everyday life. I started doing more and more and found that I was coping better and better all the time. Of course, my body smacks me in the face from time to time to remind me it’s in charge and I have to have a couple of early nights. But then at my age (53) perhaps that’s sort of ‘normal’ anyway? I don’t know, I’ve never been 53 without having had cancer!

I also find that people tell me how well I am looking. Sometimes I wonder if that’s because they are surprised that I look (and feel) so well after having cancer. Or maybe it’s because I looked rough before my diagnosis. One of my relatives said the other week that I am looking the best she has seen me in years so perhaps I did look ill and just didn’t know it! My symptoms had been present for over a year without me realising that was what they were. So the new normal for me could be someone who looks healthy!

So, has cancer changed my life? On the outside it appears not. I am running, I am working and I have a good social life. When you look deeper though, it has. And that’s quite hard to get to grips with.

But I’m getting there!

Thursday 15 November 2012

Listen to your body!

One thing that I have noticed since WCSUK started is just how often GP's (still mostly male, sadly) don't listen to the women who visit their surgery with "women's problems"

It also amazes me just how much some of us women will put up with before we go to the GP, so when we do go and are not listened to, or our problems are passed over as something not that important, then its not surprising that we are reluctant to go earlier.

In a newly published document by Macmillan, it was found that 52% of women waited more than a month from the onset of symptoms before going to see their GP. 12% waited more than 6 months.

WHY? If our lives are being disrupted by things like heavy bleeding; pain or unexpected bleeding then why are we not going to our GP's sooner?  Have we been conditioned to believe that its all part of being a woman and we should just put up with it? Are we scared to go in case it turns out to be something serious? Or is it that we don't think  that we will be listened to and our complaints brushed off?

We as women need to start taking control and listening to our bodies. If things start changing in our monthly periods; or we start getting breakthrough bleeding or pain, then we know that something is not as it should be. We know our bodies better than some male GP whose only knowledge of female internal anatomy is via medical textbooks!!!

I'm not knocking GP's here, honestly! I know there are some pretty good ones out there, and the fact that there are now more and more female GP's makes it a lot easier, but we know our bodies best. We have to start listening to what our body is trying to tell us. And we need to act upon that.

When you eventually get to the GP's surgery, you then need to listen to what your heart and your head is telling you. If you don't like what your GP is telling you, or the course of action they are planning for you, then say so. It can sometimes be hard to speak up and say "I don't want to do that" or "I don't feel comfortable with your decision" but we have to.

Women need to start taking control of our bodies and be prepared to have a say in the treatment of it. This means above all, educating ourselves and becoming aware of things that could go wrong.

Most of you reading this will sadly probably already have a womb cancer diagnosis, but we owe it to all our female friends to raise awareness of the signs and symptoms, some of which we probably were unware of ourselves before our diagnosis. According to the new Macmillan publication, almost 50% of women diagnosed said they were unaware that abnormal bleeding was a symptom of womb cancer.

WCSUK produced some leaflets outlining the main signs and risk factors

If you'd like some to give to your friends or to leave in your local GP surgery for other women to read, then just drop us an email at wombcancersupportuk@hotmail.co.uk  and we'll get some in the post to you.

Wednesday 14 November 2012

What I wish I'd known before!!!!

They say that ignorance is bliss but I quite actually like to know what the consequences are going to be BEFORE something is done. And there are certainly a lot of things that I wish I known about before I had my hysterectomy back in  Jan 2010.

As women, most of know enough about our internal organs to know when something is wrong or not working as it should be but when faced with something as major as the removal of all or part of our reproductive organs, not many of us will understand the immense consequences of this.
All I was told at my pre-op appointment was that the surgeon was going to move my womb, tubes and ovaries plus some lymph nodes if necessary.
I was still in total shock from the diagnosis 3 weeks ago so didn't think to ask any questions. Now I know that I should have asked, and I know what questions I should have been asking.

Questions like:
What happens to all the other "bits" left inside?
How will it affect me in the short and long term?
Will I ever "feel" right again?

Since my op I've been doing lots of research, not only for myself but also on behalf of all the other women in WCSUK and it seems to be that there is a serious lack of information available to women before they have their hysterectomies and this is wrong because if women were given the correct information beforehand I am sure that it would make life a whole lot easier afterwards.

I never took much notice during biology lessons at school, but I somehow doubt that it was ever explained that the uterus is connected 360o round the body so that if it is removed, as during a hysterectomy, everything that remains moves as it no longer has the uterus to keep it in place.

The uterus not only holds itself and the surrounding organs in place, but it also holds our pelvis together. There is some anecdotal evidence to show that the musculoskeletal changes in women who have had a hysterectomy can be quite pronounced - ever wondered by some elderly ladies have a hump at the base of the neck!!!

If you want to read more about this then check out this article I found http://wholewoman.com/blog/?p=1420

The whole website is very informative and I'd recomend bookmarking it. x

Monday 12 November 2012

One Team - One Goal

Recently, we were asked to become part of something very exciting - a worldwide coalition of gynaecologic oncology groups and support groups!

Under the banner of "One Team - One Goal" the aims of the project are to bring together all sides in the area of gynaecological treatment and support for women with gynaecological cancer.


We are very proud to have been asked to become a member of this coalition.

As part of the project there is a World Cancer Declaration https://s.zoomerang.com/s/otogeng which aims to " bring the growing cancer crisis to the attention of government leaders and health policy-makers in order to significantly reduce the global cancer burden by 2020. "

Please add your signature to the declaration and share it with as many people as possible. Please would you tick the Womb Cancer UK box down in the bottom right (that's our twitter name, bytheway!!)

We at WCSUK feel very strongly that there needs to be more collaboration between all sides so that all women with gynaecological cancers get the best treatment, advice and support possible and only by working together and listening to each other can this be achieved.

Saturday 3 November 2012

Peach Tears


On a sad note, those of us in WCSUK were reminded that not every case of womb cancer can be treated successfully. We recently lost a wonderful lady with a beautiful smile.
She had been an active member of the chat group, and even when she had moved into the hospice towards the end, she still found time to log on and chat to the other women.

She will be sadly missed by those of us that knew her; however briefly that may have been.