My Story - by M.S

Here is another guest blog as part of Womb Cancer Awareness month. It has been reproduced from an existing article.

September is Uterine Awareness Month...if you are able to read this, then you know somebody who is currently fighting Stage 4 of this disease. This disease is very curable if found early, but there are no real tests to find the disease unless you speak honestly to your OB/GYN about any female problems you are having.
In my case, I had a pap smear and full pelvic exam done last October and passed it with flying colors. I was having problems with strong bleeding and was given a pill to control the hormones. By January, I was so anemic I needed weekly iron infusions, and when I went to a follow up visit with my OB/GYN in February, I was bleeding so strongly in the office that they had no choice but to do an ultrasound and schedule me for a D&C. Even after the D&C, the doctor said all is well since I am cleaned out now..it was a week later that the tests came back...Uterine Cancer.

The head of the OB/GYN office, who gave me the test results, asked me why his doctor even did an ultrasound and D&C on me because at my age, abnormal bleeding is treated with hormones, but also said that thinking outside the box in this case was the perfect thing to do. He also told me that uterine cancer is the cancer to have if you have cancer (two weeks later I learned that my kind is definitely not the kind you want to have)
Five days after my diagnosis, I met Dr. DePasquale, whose first question was "Why do you have this cancer? You don't have the age or the body for it" Both of which are usually a compliment (He meant I was too young and not big enough lol)..but once he checked my uterine, he asked if somebody was with me..to get my mother and to talk. The talk was one of the hardest things I went thru because Dr. D did not give me a good long-term outlook based on the size of my Uterine (which six months earlier during a pelvic exam was called being a normal size).

I had surgery the week later and during the surgery, Dr. D came out to see my mother to tell her the cancer was all over the pelvis and he had to cut me open to make sure nothing spread to the abdomen. I will be forever grateful to the women and men who had come to the hospital to be with Mum during my surgery. Not sure she would have made it without your support. When he came out after the surgery, the news was better...he was able to remove all cancer cells he saw (and based on reports he took his time checking out my pelvis and abdomen to make sure nothing is overlooked)
A week later we received the pathology reports..and the news was mixed. Nothing was in the bladder and bowels, but two "small" lymph nodes were affected. And the cancer was puzzling to the doctors because it is a very rare and aggressive form for which no real clinical research exits. We went with the "normal" treatment plan of chemo and radiation..and started with Chemo four weeks after my total hysterectomy. Time is of essence and Dr. D. said I was young enough to stand it.

Today, I am two weeks away from my last Chemo session...and the outlook seems to be better than we dared to hope in March. Due to an infection six weeks after the surgery, Dr. D ordered a full abdomen and GI track ct scan which came back clear (I told him he took the opportunity to do a full scan which is not normal for uterine cancer..and the doctor who barely smiles...just smiled at me). My CA 125 levels are as low as they probably will ever be (it's one of the blood tests to determine how successful treatment is)..and Dr. D who told me in March my outlook is bleak, told me in August that he thinks there is not much cancer if any cancer left in my blood.

I have decided to tell my story because uterine cancer does kill..but is detectable..if you as the patient make sure your doctor takes your concerns seriously and does some tests..even if he/she has to think outside the box. It occurs to "young" women pre-menopause as well...not just post-menopause. It's scary to be told you don't have much hope...but that's when it is so comforting when the first thing you "hear" during your prayer is "I am the ultimate healer...don't looks at statistics".

The last six months have been a rollercoaster and this journey is not over because we are still fighting..and recurrence is a very distinct possibility...but in all of this I am very thankful for gaining this closer walk with the Lord (the ultimate healer), my friends, people telling me their own cancer stories and showing me cancer is not a death sentence, my family (be it thru our blood or the blood of Christ) and doctors, who have a picture of Christ leading the surgeon's hand during surgery, hanging in their office. BTW..the above is no particular order (after giving my first thanks to Christ)..I am equally thankful for all of you.

Again, September is uterine cancer awareness month...why not schedule a pelvic exam for this month to make sure you will not be part of that statistic? And if you are...feel free to reach out to me...I will pray, cry, talk or do whatever you need me to do with you :)

This is me!

Today is Saturday 1st September 2012 - the first day of Womb Cancer Awareness Month.
Over the next month, we shall be featuring articles by various guest bloggers to help raise awareness of womb cancer.
Today, I want to share with you my story. This is my journey with womb cancer and how Womb Cancer Support UK came about.

I was diagnosed with womb cancer on 23rd Dec 2009. I had a hysterectomy, then chemo, then radiotherapy. My treatment ended in July 2010 - one week before my 47th Birthday!

To say I've been on a rollercoaster is an understatement and I`m still coming to terms with it all now, over two years later and truth is, my diagnosis came as a complete shock!
I was told that I had fibroids after an ultrasound scan picked them up however, a later MRI scan confirmed that it was cancer and my journey with womb cancer began!


To be honest, I`d had problems for years but never went to see a doctor! I was always scared that they`d find something serious – like cancer!! So I`d put up with things like very heavy bleeding, pain etc for over 30 years!!

Receiving the news was a complete blow and the fact that I received it over the phone (when I was in the house on my own) didn’t help!
Because my Consultant said he was 99.9% sure they could remove it all, I`d figured there was no need to worry my family about something that might not happen, so I decided not to tell anyone about ‘the cancer’ until after my hysterectomy (only my husband knew)

When the pathology results came back they showed there was a high probability cancer cells were still present, so I had to come clean and tell people! I live on a small island off the west coast of Scotland and rumours start quicker than the drop of a hat! So I decided to be completely open about having cancer so they didn’t have me dead and buried before I’d even started the treatment!

Telling my parents was very difficult. It was hard for them to come to terms with their eldest daughter having cancer – as they`d come from a generation where “cancer” meant death and explaining things was pretty difficult, especially as I was having problems finding accurate information about womb cancer!

I resorted to scouring the internet for information and devoured so much stuff that I felt like a walking library!

Time has passed and I still deal with various health issues: some as a result of severe anaemia that I`d had before the hysterectomy and some as a result of the treatment. I have been diagnosed with lymphoedema in both legs, and also an underactive thyroid; both as a result of the treatment. I also have bowels problems as a result of the radiotherapy.
However, life goes on!

I don’t dwell on what`s happened but now use my experience, to help other women, especially those with womb cancer!
I didn't want other people in a similar situation to experience the same loneliness I`d had when first diagnosed and in my seemingly never ending search for information and support, I came across an American Facebook group: My Fight against Uterine Cancer. This is where I met Debra!
We were bemoaning the fact that there didn’t appear to be any UK based womb cancer support groups around and Debra suggested I start one!
So I did!
20 minutes later, on the 11th April 2011, Womb Cancer Support UK made its first post on Facebook!
Debra helps me run the group, and we not only support each other, but raise awareness of womb cancer and support everyone in our group.

What started off as an online support page on Facebook for other women going through womb cancer, has now grown to not only include a private chat group, but a website, a blog, a twitter account, a petition calling for a dedicated womb cancer charity AND fundraising for a womb cancer research project!

I feel humbled by all the remarkable women in the group! They tell us they wouldn’t have been able to get through their own cancer ordeal, without WCSUK!

Doing something positive helps me… and if it helps others in even a small way then I'm happy!
Personally, it`s been a long 2 years and I’m still far from 100% but its good to see how WCSUK has grown and now encompasses awareness as well as support as its main aim.

Womb Cancer Support UK - No One Fights Alone!

September Song!

Well, September has come around again. Doesn't seem like 12 months since we held our first Womb Cancer Awareness Campaign and yet here we are again!
This year's campaign has had a slow build up as last years was a little bit of a rush job, but nevertheless it was a success and raised our profile - which is good because more women found out about us and are now getting mutual help and support from the women in the group.

We now have 465 people, both male and female, in the main Facebook page. According to FB statistics, we have followers in places like India, Canada, Gibralter, France aswell as US and Ireland.
Its nice to know that we are reaching out to women beyond these shores.

We have 2 events running on FB during September - a month long event to raise awareness https://www.facebook.com/events/488044444558974/  and a one day event to mark International Womb Cancer Awareness Day on 20th https://www.facebook.com/events/185190028280889/  where we are asking people to change their profile pic to something peach to raise global awareness of this cancer.

We have also produced a series of short video's that are available on our youtube channel - the latest of which features some of the women from WCSUK. Check it out here http://www.youtube.com/watch?v=5z0GZNV5Mys

During the month there will be a series of guest blogs from various women who have been affected by womb cancer. I want to thank them for being so brave and open about their experiences.

If you, or anyone you know needs help and support then you can find us on Facebook here https://www.facebook.com/WombCancerSupportUK  or via our website here http://wombcancersupportuk.wix.com/home

Stay peachy this September!

It's all about September!

Well, its nearly that time of year again - September! Womb Cancer Awareness month!
After our first campaign in 2011 we are aiming again this year to turn Facebook peach by asking people to post a peach themed profile pic, either for the whole month or just for one day, namely 20th September which has been designated International Womb Cancer Awareness Day.
https://www.facebook.com/events/185190028280889/permalink/185660818233810/?notif_t=like#!/events/185190028280889/
Over in the US, our peach sisters at
https://www.facebook.com/uterinecancerawareness have their own event https://www.facebook.com/events/485720588122842/ so you can be sure that we will make the day of 20th September last a lot longer than 24 hours!!!

Throughout the whole month there will be various events taking place both online and in the real world so keep an eye out for any "peachiness" happening near you!!

We are looking for some guest bloggers to write about how womb cancer has affected them so if you fancy having a go then please contact us, either by leaving a comment under this blog or via the Facebook page https://www.facebook.com/WombCancerSupportUK

Don't forget to check out the video's that we have uploaded onto our youtube channel http://www.youtube.com/user/WombCancerSupportUK/videos

See you in September!!

It's over to you..............................

In the run up to September's womb cancer awareness month, I have asked some of the ladies in WCSUK to have a go at writing a piece for the blog. The first one is by joint admin at WCSUK, Debra Parry.

"On Thursday afternoon I sat with my daughter while she made quill pens. She has always insisted on ‘mother-daughter bonding time’, so what better way to achieve that than by being involved with her work and researching and learning new things - or, in this case, old things - together.

I am just over two years post-op for endometrial adenocarcinoma, otherwise known as womb cancer. I had never heard of womb cancer/endometrial cancer/uterine cancer when given my diagnosis in June 2010. Now I know more about womb cancer than I would normally ever have wanted to know and, sadly, am no longer shocked at how commonplace the story of never having heard of womb cancer before diagnosis is among women.

Cervical cancer. I’d had one or two ‘abnormal’ smear test results many years ago – anomalies that cleared up on their own – and nothing from then on. But smear tests were never intended to detect changes to the cells inside the womb cavity itself. There was no evidence of cancer found in my cervix after it was removed in July 2010.

Skin cancer. I’d developed a growth on my leg but the biopsy had shown it wasn’t cancer.

Breast cancer. I’d found a lump but the mammogram and ultrasound etc had shown it wasn’t cancer.

Oral cancer. I’d developed a lump inside my lower lip but, after removal of the lump , it was found to not be cancer.

So far so good...

In late 2006 I passed out on the stairs at home, fell and broke my foot. I’d never passed out before. In 2008 I developed a persistent cough and breathing problems that were diagnosed as asthma. I’d never had asthma before. In 2009, only days after my 50^th birthday, I came down with ‘flu’. Several bouts complete with temperature spikes and rashes followed over several months – swine ‘flu’ was doing the rounds, I was ‘unlucky’. And then the bleeding set in. Only minor at first. I noticed I’d begun spotting some months leading into my period. Then I noticed more spotting some months at the end of my period until it happened at the beginning and the end of my periods and they became slightly longer but remained quite regular. Then came some spotting mid-period and the age-old excuses were going through my head: I’m 50, here we go! It must be hormone changes. It must be my age. It must be the start of the menopause.

In April 2010 - following four months or so of abnormal bleeding that, by then, was almost constant and at times worryingly heavy - a lightbulb finally went on in my head. “This isn’t normal, this isn’t the menopause!”and I booked myself in to see my GP. From the moment that month when I told Dr B, “I think we’re looking at something potentially very serious here,” through to the day he telephoned me after my womb cancer diagnosis to say, “We knew there was something there, didn’t we, because of the ultrasound, but I was hoping it wouldn’t be this,” he had never doubted me. Not once. And I shall forever be grateful to him.

So, how did the quill pens go? My daughter made twelve in total and I got to try them all. It was fun , but I can safely say I understand why ballpoint pens were invented!"

(c) Debra Parry

Ninja Womb Warriors!

As well as the main WCSUK Facebook page we have a private chat group, and this is somewhere where the women can chat in complete privacy about things.
Its a close knit group, as you would expect from women who share their most intimate problems with each other.
It is a group that pulls close together when one of its members is having a bad time, but it's also a group that can laugh and joke and smile together.
Some time ago, one of the ladies christened the group "The ninja womb warriors" and that name has stuck!
We are warriors, and we're fighting an evil foe!
I had some tiny polymer clay figures made that I turned into keyrings for the women and after my recent attempt at making an awareness video http://www.youtube.com/watch?v=r-ZO9FxHyO0  I used these figures in a second video!
Check it out here http://www.youtube.com/watch?v=5em9wf8rVDc&feature=bf_next&list=ULr-ZO9FxHyO0
Ok, so I'm never likely to win an Oscar but these little video's are doing what they are intended to do - to spread the word about Womb Cancer Support UK and to reach out to all the other women out there going through womb cancer.
If we can reach them and let then know that they are not alone - then these short video's will have worked.

Ninja Womb Warriors Rule!

Hollywood here we come!!!

We have made the move into the world of youtube and have uploaded our first video!
Its nothing fancy, infact its very basic but it is intended to be the first of many awareness raising videos made by us here at WCSUK.
We are also hoping that other women will make some short films for us and we look forward to collaborating in future months.
So here it is - http://www.youtube.com/watch?v=r-ZO9FxHyO0

Please watch and rate - and then share! We need to reach out to as many women as possible so we are relying on you to help us!

Thank you!