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Introducing Peaches Womb Cancer Trust

30/9/2020

It is a pleasure to have been asked by Kaz, to write a blog post for the WCSUK website. Please allow us to introduce ourselves, we are Peaches Womb Cancer Trust, the first UK charity dedicated to research, awareness and improving the lives of those affected by womb cancer.

Earlier this year a group of researchers within the womb cancer team at St Mary’s Hospital, Manchester had an idea to start up a charity dedicated to womb (endometrial) cancer following some incredibly generous donations offered to Professor Emma Crosbie to further her research. Unfortunately, these donations could not be accepted directly, but instead were kindly offered to the University of Manchester with whom Professor Crosbie has her chair. The donors were disappointed that the funds could not be protected specifically for womb cancer research. We realised that there was a significant gap in the charitable sector for a charity dedicated to womb cancer…and so Peaches Womb Cancer Trust was created.

The team at Peaches Womb Cancer Trust consists of Dr Chloe Barr, Dr Helen Clarke, Professor Crosbie, Dr Eleanor Jones, Dr Helena O’Flynn and Anne Lowry. We are a dedicated team of Gynaecologists, a General Practitioner and a Gynaecological Oncology Clinical Nurse Specialist. In addition, we also have a non-medical trustee, Rosemary Pike, who is a retired solicitor. On the whole, we are active translational researchers and healthcare professionals – this means our clinical research directly impacts patient care.

Why have we set up Peaches Womb Cancer Trust?

For such a common disease, there is a distinct lack of public awareness of womb cancer and many people have never heard of it. There is also comparatively little research dedicated to womb cancer. One of our main aims is to raise funds to further research into womb cancer, principally for the research undertaken within the womb cancer team at the University of Manchester. This research group, led by Professor Crosbie focuses its efforts on the prevention, early detection and treatment of womb cancer. In doing so, it also supports the careers of budding gynaecological oncologists and researchers.

The research team has several ongoing studies looking into the use of non-invasive tests for the early diagnosis of womb cancer, with the aim that one day these might be able to be used within GP surgeries. They are also developing womb cancer risk prediction tools that will identify those at higher risk of womb cancer who might benefit from prevention strategies. Over the last few years, there have been an increasing number of younger women diagnosed with womb cancer, and the womb cancer research team are looking into more conservative treatments so that these women might keep their womb and have children in the future. Last year, as a direct result of their extensive research into the inherited condition Lynch syndrome, which increases the risk of womb and bowel cancer, changes have been made in national guidelines regarding screening for Lynch syndrome in women diagnosed with womb cancer, having a huge impact on their future health and the health of their families.

Then Covid-19 happened…

When the Covid-19 pandemic hit, many of our research team were called back into full-time clinical work. Because of this, both our research and our progress with setting up Peaches Womb Cancer Trust temporarily stalled. Dr Clarke had previously volunteered to run the Manchester 10K in May for Peaches Womb Cancer Trust, but this was cancelled owing to the pandemic. However, in an attempt to protect both mental and physical health during lockdown, Dr Clarke still ran her own version of the Manchester 10K, albeit around the canal tow paths and roads of Cheshire instead. A JustGiving page for the run attracted huge support and she raised a staggering £1155! This gave Peaches Womb Cancer Trust the vital initial funds required to set up a website and email address and to get ready for our official launch in September 2020.

The team are all now back into our clinical research roles and are busily working to build the profile of Peaches Womb Cancer Trust. We have decided to continue with our planned launch during September 2020, which is gynaecological cancer awareness month. Due to Covid-19 the launch will have to be virtual, but this has not dampened our enthusiasm

We were absolutely delighted when Womb Cancer Support UK reached out to us, kindly offering to donate funds raised to our charity. This will be used in awareness and patient support projects and will enable us to begin our work in earnest. We were already aware of the amazing work that WCSUK does to provide a vital support service to patients and we hope to have a long and prosperous relationship with WCSUK. We are a new charity with visions to expand our role and purpose as we grow over the coming years and your support at this early stage of our journey is so greatly appreciated.

We thank you so much for your interest in and support of Peaches Womb Cancer Trust. We look forward to meeting many of you over the coming years at one of our many anticipated events.

With very best wishes and thanks from all of us at Team Peaches!

Peaches Womb Cancer Trust are on social media at these links
Facebook
Twitter
Instagram
Email : admin@peachestrust.org.uk
Website - peachestrust.org

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My womb cancer story by R.K

26/9/2020

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I wrote my first guest blog post for WCSUK just over a year ago. At the time I was coming to the end of my chemo treatments and about to start radiotherapy. Now, a year later, my treatments have all finished and there have been no signs of the disease since October 2019.
I first went to my GP in November 2018 following changes to my periods. To be honest, there had been gradual changes for a long time before I went to see her. But I had dismissed them, as they were such minor changes, and put them down to getting older. Had I known that I should get any changes to my periods checked out, I would have known to see my doctor before the cancer had had the chance to progress to stage 3c (spread to nearby lymph nodes). This is why it is important to spread awareness so women will know to seek help sooner.

I got my cancer diagnosis in March 2019 and because of its advanced stage; I needed a radical hysterectomy, six rounds of chemotherapy, 25 radiotherapy sessions, and to finish it all of, 2 internal radiotherapy treatments (brachytherapy).

How people react to their treatments varies from person to person. It scared me to start chemo but chemo was kind to me. Knowing all the potential side effects, I got off lightly. The first 4-5 days after each session were always the worst, but then I could have a couple of weeks feeling almost normal - my treatments were three weeks apart. In those two weeks, I often felt so well that had it not been for the hair loss, I would have wondered whether the drugs were doing anything at all.

But they worked as a CT scan taken half way during the six courses of chemo showed. As did the scan taken before the start of radiotherapy. Getting these positive scan results was a definite psychological boost. It was easier to enter five weeks of daily radiotherapy knowing my body was beating the cancer.
Especially as radiotherapy hit me a lot harder than chemo. Before my own diagnosis, I hadn’t even know that oncologists use radiotherapy to treat cancer. Now I found out that the list of potential side effects was as long as those for chemo. Talk about a steep learning curve!

The side effect that hit me the worst was fatigue. That, combined with chemo brain, meant I spent most days in a haze, sleeping and resting. And it took a long while to recover from that after the treatments finished. But it is possible to recover and now, I am almost back to normal energy levels.

Radiotherapy to the pelvic area can also cause many other complications. For example, problems with bowels, urinating and it can make the vaginal passage shorter and narrower, making sex more painful. In fact, my doctor instructed me to either have regular intercourse or use a plastic tube and lubricants the hospital supplied me with, to combat the effect on the vaginal passage.
They also gave me pills in case of diarrhoea. Before they begin radiotherapy treatments, the nurses do a planning scan to minimise effects on the bowels and kidneys. In my case they did an amazing job as apart from a few near misses, my bowels were mostly fine. For example, there was a time when I had to get off the bus mid-journey and rush into the nearest pub to avoid an embarrassing accident. Let’s just say I made it there just in time.

The trouble with the side effects is that some can appear a long time after the treatments have finished. Some can even appear a few years later. But I am keeping my fingers crossed that they stay away.
I know I have been extremely lucky with both short- and long-term side effects. I am left with joint pain in my knees, elbows and fingers and a very stiff pelvic area. But I have found that exercise helps with the joint pain, and stretching is slowly helping with the stiffness. But it is nothing that affects my day-to-day life. I am also lucky to be alive as the odds were not on my side.

The odds for successful treatment of womb cancer when diagnosed at stage 1 are 90-95% depending on the source. Therefore the work of organisations such as WCSUK is so crucial, and why I want to do my bit through sharing my story on sites such as WCSUK. I am also doing a charity bike ride across Europe with my partner. It is vital that more women know when to see their doctor as early diagnosis saves lives.

You can find out more about the bike ride on my blog Cycling for Cancer .

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My story by L.D

23/9/2020

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My journey started in 2016 when I had a very heavy bleed the day after we moved house. I was stubborn and left it till two days later due to it being the weekend. I saw a nurse practitioner who arranged an ultrasound scan and bloods. I was anaemic but no problems with the scan. She suggested that I use black cohosh or another alternative to HRT which I tried which didn't help.

Skip to the next year when I had a very watery discharge and seen as I was post menopausal I went to my GP who sent me for another scan and did bloods. A scan appointment, a painful hystroscopy and then a few appointments later I ended up with a diagnosis of both uterine and ovarian cancer which wasn't a surprise as mum had ovarian cancer before she died.
I ended up in James Cook University hospital having a hysterectomy in July 2017, key hole thank goodness. I was waiting for a nurse to help me out of bed and it took so long I did it myself with help from my husband. I slept in that chair overnight as it was more comfortable than the bed. Luckily I was discharged thr next day.
Then came chemo, hair loss, feeling sick and meeting some lovely people in the unit. I had radiotherapy and brachytherapy afterwards. This made me so tired.

I went back to work in June 2018 with 3 monthly oncology appointments with a consultant who is, once you get to know him, a helpful but can be quick asking his questions and doesn't tell you a lot unless you have a list of questions which is his quirkiness. A short while after I went back to work I went for a post nearer to home which I got and it's a great place to be. I told them at the start that I had had treatment for cancer and they were great with me. So I started on the 1st November 2018.

Roll into 2019 where I mentioned to the oncologist I was having issues with my abdomen with more pain than usual. A scan later showed spread to my abdomen so more chemo but a different kind. The spots as he called them reduced slightly but not enough to be in the running for chemo tablets. During this bout of chemo I was anaemic and had 3 units of blood.
So now what? Hormone tablets which, when I returned to work caused me breathlessness and when I was admitted to hospital a pulmonary embolism which they treated with injections for a couple of days. I had a scan the day after I went in which showed no PE but my logic was that the 2 heparin injections they had given me the evening before had got rid of it. I gradually became less breathless and was less tired at work.

Now 2020 and my adventure with the NHS during a pandemic. I had a feeling of pressure in my pelvic area. My appointment was cancelled in early April but it was getting worse so I pushed for an appointment and was quickly scanned afterwards. My cancer was now in my pelvis and abdomen. I am currently having chemo and have got hair loss but hardly any nausea thank goodness. I get tired very easily and get dizzy spells at the moment which scares me at times. I scare my lovely husband at times when I have dizzy spells and he worries about me which is only natural. I had to go to the hospital during the nightime before I started chemo and was catheterised during to me not being able to pee properly after an infection. Thank goodness that it was only in for 3 weeks. I went to see my manager at work who was great with me as she knew what had happened the year before. I was so emotional talking to her and her deputy but I couldn't have a more understanding workplace. I go in now and again to see them which is good for keeping me in the loop.

I now have less pressure in my pelvis and feel that I did the right thing pushing for an appointment as an appointment came through about a month ago which could have been that the cancer had spread more.
I am feeling positive about the outcome of the treatment atm but am anxious about my scan results which will be discussed at an appointment at James Cook on the 4th of September. We'll see what my oncologist says and go from there. Will it be worth all of the side effects I don't know but I try to stay as positive as I can do.
Thanks for reading the rambling of a 55 year old who does rabbit on a bit.

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Dr Patricia Ellis & her womb cancer research project

20/9/2020

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As some of you may be aware, since the very early days of WCSUK, several womb cancer survivors have been raising funds via justgiving for a womb cancer research project beng conducted by Dr Patricia Ellis.

For those of you that don’t know, Dr Patricia Ellis is doing research on women under 40 who have been diagnosed with womb cancer. The money raised has been donated to GRACE & has been ringfenced specifically for Dr Ellis.

She recently sent me an email updating me on her work and I would like to share some of the details with you.

“ I continue to work with young women (15 so far) with endometrial cancer and those with complex atypical hyperplasia (CAH- this condition can develop in to endometrial cancer ) who wish to have a baby despite their diagnosis of having womb cancer/ CAH . I offer them fertility preservation treatment in the form of high dose progesterone and once the cancer or CAH have regressed , they can try for a baby. One lady has been successful in having a baby, and in 9 others, the endometrial cancer/CAH have regressed. Once they have had a baby, the recommendation would always be to have a hysterectomy because the cancer /CAH can come back. ”

It appears that she is now also hoping to start a new research project in October & has a research student to help out.

“ Essentially, Adipocytokines are hormones and biological factors released from the adipose (fat) tissue. From my initial research, there may be differences in these hormones /biological factors in women with endometrial cancer with different BMI. I wish to continue this research with the help of the research student… so I would like to now use the funds that …..have so kindly (been )raised to help pay for the materials and equipment that we will be required to conduct the research in the laboratory. “

According to GRACE there is approx. £12,500 being held by them for Dr Ellis and hopefully this will help with her research.
This research update from Dr Ellis, along with the news of the new dedicated womb cancer charity called Peaches Womb Cancer Trust (website is still under construction but they are on social media as "peaches trust" ) that is being set up by Prof. Emma Crosbie means that womb cancer is getting some attention which is great news.

Hopefully we be able to update you again in the not too distant futurenas we all work to #GiveWombCancerAVoice

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Everything you’ve ever wanted is on the other side of brave by Casey-Lee Jonathan

19/9/2020

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‘’Casey did you come alone?’’ The shock of me sitting opposite her by myself was written all over the doctors face.
I was 27 and had had a biopsy the previous week due to an abnormally thick uterine lining detected during two internal scans. Part of me knew what was coming but when she explained the results had come back and she was sorry but I had womb cancer and PCOS I had an overwhelming feeling of suffocation.

As her receptionist had failed to tell me I was to bring a close friend or family member I had to take in the worst news of my life alone in the doctors office and all I could think was ‘’how the hell am I supposed to tell my loved ones??’’

My journey started almost 2 years prior when after years of hit and miss periods and a year of crippling pains I finally braved it and ventured to the doctors for a check up. This was one of many failures from the doctors that I was to endure up until my eventual diagnosis!
I explained my symptoms to the male doctor who rolled his eyes and told me to lay on the table whilst he felt my stomach. A matter of seconds later he returned to his seat informing me it was just IBS and to buy something from the chemist. Despite my confusion & my explanations regarding my periods I was ushered out of the door & left to request the IBS medication he had suggested.

Of course this didn’t work and after another couple of months of issues I returned to see another doctor. Luckily she took my complaints a lot more seriously and requested a smear test as I’d stupidly missed my initial offering.

My second problem came when calling the doctors surgery to enquire about the results and the receptionist telling me they had come back abnormal and to speak to a doctor urgently. Panic & tears set in (the first of many along my journey) and I awaited the doctors call back whilst trying to keep myself busy to fight the nausea that had set in. Fortunately the doctor explained the receptionist had been mistaken and my smear test results had come back clear so the next step was to have an abdominal scan & an internal scan to check for PCOS or endometriosis.

Two scans later and I was sent for a biopsy months later in October 2019. The following week when I received my results my mum and best friend had been texting me telling me to let them know what my results were and wishing me well. Sitting in my car in floods of tears, hyperventilating & shaking like a leaf I responded to my mums text explaining I didn’t even know what to say to her & quickly replied to my best friend saying ‘it’s cancer I’m so sorry.’

Along this whole journey I’ve apologised to those I love be it when I was initially given my diagnosis, when I’m in agony and aren’t as happy go lucky as I once was, or even when they ask how I am and I have to tell them I don’t feel well, I still apologise. The worst feeling in all of this has been seeing the hurt it has caused my closest people, on the day of my diagnosis myself and my best friend spent half an hour crying to each other on the phone, she’s never been a cryer and again I apologised because I was the cause of her hurt.

So far I’m one of the lucky ones, I have a fantastic pair of Macmillan nurses and an amazing gynaecologist who I’m dealing with who explained the main treatment is a hysterectomy, however due to my age and the fact that I’ve always dreamt of having a child of my own I went for the option of having the Merina coil fitted & taking medication called Megestrol once daily whilst having biopsies every three months to ensure the cancer is responding well & isn’t spreading.

It’s now September 2020 and after a year of excruciating pains & debilitating depression & anxiety I’ve finally found a pain relief that works for me and has given me a new sense of freedom & allows me to feel like my old self again.

I don’t know what the future holds for me, if I’ll ever be able to have children naturally, a surrogate, or through adoption. All I know is I’m taking life one step at a time and determined to live for the moment and refusing to be beaten by womb cancer.

Regardless of how it happens I’ll do whatever it takes to make myself a family of my own and I’m beyond grateful for the support from my family and my best friend because without them I wouldn’t be here right now aged 28 & braver than I could ever imagine I could be.

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My womb cancer story by S.R.

16/9/2020

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My name is Sam and I'm 35 years old. I found out in November 2017, at the age 33 years old that I had cancer cells in the lining of my womb.
I found out after 4 years of trying for a baby and being seen by consultants regularly. I pushed for a scan as I wasn’t happy with the pain and bleeding I was getting, and after many trips to the doctors and even A&E for the bleeding I was still told it was normal and nothing was wrong with me.

Obviously they fobbed me off for so long but I kept on at them and then after 3 biopsy’s & a pelvis MRI, it then showed I had grade 2 tumour, it went from cells to a tumour and my world shattered to pieces.
It went from trying for a baby to suddenly thinking I was dying and sobbing hysterically in the hospital saying i don’t want to die.

There was talk of chemotherapy which again just terrified me I couldn’t believe what I was hearing and I just wanted the cancer out of me straight away.
I needed a hysterectomy, which I had on December 19th 2017 and thankfully the cancer was contained in the womb. I had a full hysterectomy and 21 lymph nodes taken, luckily it hadn’t spread and I then had 4 lots of brachytherapy.
No further treatment but check ups needed every 3 months. I have just gone on to six monthly check ups and yes I am still a nervous wreck & heartbroken I’ll never have my own baby but one thing this has taught me is live life to the full.

I will never give up on my baby dreams and have the most amazing sister who has offered to be a surrogate for me and my husband. At the moment we cannot financially afford it but one day i will keep praying it will happen.

If ever in doubt see your GP and don’t be fobbed off.

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Waiting & waiting - by J.M

12/9/2020

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I’ve not been diagnosed with cancer ! But here’s my journey so far.

After 10+ years of no menstrual cycle I suddenly started bleeding. At first I thought piles, or I’d caught myself somehow with a scratch. Then the stomach cramps came too. I felt like a teenager not knowing if I had started my periods ( again, obviously). The blood got heavier, some days bright red, pinkish or brown. Then some rather large blood clots or lots of splinter size clots appeared. That’s when I decided to go to the doctors. I was immediately sent to A&E. My husband called a friend to take us, as he didn’t want me driving that far. ( It’s about 45-50 mins drive if traffic is good or can be an hour plus) Once there I knew it would be a long day!

Due to Covid-19 restrictions I had to register at A&E then go in by myself, while hubby & friend waited in the family room. I was soon called into Triage & assessed. I started to feel a bit silly at this point, thinking they’d see me as a Drama Queen! In all honesty I wasn’t waiting long before being called to see the doctor. Living in Spain & not speaking much Spanish is definitely frowned upon by medical staff ! I have to start every conversation with “ Lo siento, hablo muy poco español “ ( Sorry , I speak very little Spanish) Which always gets the same reply “ But you live here, no ?”

So I apologised and the doctor talks in broken English, which is still better than my Spanish attempts. After answering questions on my symptoms she’s examines me. I’m then sent for blood tests & given two drips ( to stop the bleeding). A further wait then called back to hear my bloods are ok, take these tablets for 5 days & wait for a call for a further appointment with Gynaecologist.
Bleeding stopped for 2 days but then returned. Four weeks later I went to see gynaecologist. Again due to covid I had to see consultant on my own, while husband & friends waited outside hospital. I had written down & translated into Spanish all my symptoms & recent events. I also mentioned that my Dad had had Cancer of Colon, liver, pancreas, stomach.
I was told to sit on “The Examination Chair” ( legs in stirrups) while she examined me. She called a nurse in with some urgency. I wasn’t prepared for the rest .... a hysteroscopy scan, two cytologies & a biopsy.
Think whole hospital heard me yell as she did biopsy, it took me by surprise & she hadn’t warned me! I was left to compose myself for about 5 minutes then rejoined them in the office. She said to sign the form, presumably for doing biopsy. I was told she would see me in 6 weeks. With the language barrier, it’s harder to speak out as you normally would & feeling fragile, I said OK & left.
I came out & cried while telling hubby what they had done. We google translated the notes she had given me to see exactly what she had just done ! Once home I was on google looking up all the words on the doctors sheet. Translating & evaluating it all. Thicker womb lining, so googled what it should be etc ... Everything pointed to Womb Cancer.
My husband told me not to google or to worry ! Easier said than done! I was back at work but working in tourism in Spain was getting worse with the pandemic & our flights from UK were suspended again, so back on ERTE ( Spanish equivalent of furlough) Giving me more time to sit & ponder !

The bleeding got worse & so did the panicking. I tried not to think about it. I hadn’t told anyone about my biopsy etc except the friends who took us to hospital. I have 2 grown up girls & a granddaughter living in UK & didn’t want them worrying. My husband mentioned my heavy bleeds & clots to our friends who said to go back to doctors as I might be getting anaemic. So off I went, only to be told to go back to A&E. Which I did. Same thing as last time, bloods taken, put on drip, tablets given to take for 3 days. I was told the results from biopsy weren’t back & would have to wait to be called back & would be in next 4 weeks ( 6 in total as originally advised!)

So here I am, bleeding had stopped for 6 days after last hospital visit but then resumed! I’m no nearer knowing what’s going on, what my diagnosis is or what journey I have ahead. All I know is the fear of having Cancer is the worse thing ever.
Every symptom I have points to C and not sure it could be anything else. Deep down I have that “ gut feeling” it is Cancer, but until I hear from the gynaecologist I won’t be totally sure. I’m hoping I’m wrong & this will all go away but not sure how, without a hysterectomy.
My journey hasn’t started yet, this is just a pre-journey , an insight, with the fear factor looming!

My biggest fear is having to tell my girls, who have already lost their father.

I sit & await my results , which are yet to come....

UPDATE : On my 3rd week after biopsy I was called for my results appointment in two days. Now the panicking really set in! At the appointment we went into a different part of the hospital, very quiet & serine. Sat waiting seemed like forever. The waiting room was further down the corridor from the consultant too, so you never saw anyone going in or out.
I was told that the results were inconclusive but she hadn’t seen anything “sinister”. She examined me & did another biopsy. She said the biopsy were “blind biopsies“ & they needed to see inside the womb more which would be another hysteroscopy but under general anaesthetic so they can look deeper & get a better biopsy sample. She indicated that if found, it would be early stages & treatable. The end results would probably be a hysterectomy.
Due to Covid 19 the clinics aren’t running as normal so I may be waiting up to 2 months for my hysteroscopy appointment. So I’m still waiting for a final diagnosis but feel better that they didn’t find anything big to begin with. It gives me hope.
I’ve now told my girls in UK & received a large bouquet of flowers followed by my youngest on a surprise visit to Spain ( & yes I cried when I saw her!) I now have their support too, which I’m so grateful for.

MORAL HERE TO ALL LADIES - know the symptoms of Cancer & please get checked out at the first signs of anything you know not to be right! Better to spend time at doctors & be wrong than leave it to grow!

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My Cancer Journey – Karen Crump

9/9/2020

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Aged 50 I had pretty much stopped having periods but was having intermittent spotting. Following a pelvic ultrasound scan I was diagnosed with fibroids, told that it was quite possible that I would get a bit of spotting due to the size of them as I moved around and that the fibroids would as reduce in size as I went through the menopause and not to worry.

Roll forward 3 years, I felt very well but was having hot flashes and so I went to see my GP to see if I could get some help. The locum Doctor prescribed a combined HRT treatment. I started taking HRT and felt marvellous in terms of my skin/ hair/ energy/ hot flashes but noticed my vaginal secretions were slightly different. I put this down to the additional oestrogen in my body and wasn’t worried.

The next year was very difficult for me in terms of work and family life. The spotting was increasing in severity and I was getting a bit of bloating, which I put down to stress. A year after starting HRT, I went back to my GP to ask if I should stop it. Luckily for me the Practice Nurse was concerned and arranged some blood tests Ca125 and Ca19-9. I stopped the HRT and the bleeding stopped almost immediately. However, the blood tests went on to show something abnormal so I was sent to the Gynaecology Rapid Action Clinic for a pelvic ultrasound scan. This time the scan showed some abnormal cells as well as a very thick womb lining and fibroids so further investigation was required. I was somewhat duped into having a hysteroscopy without anaesthetic so that I could get the appointment quicker (sooo painful, tragic that the NHS staff suggested that a couple of painkillers would suffice!). The biopsy conducted during the hysteroscopy confirmed that I had endometrial adenocarcinoma (a type of womb cancer) and I received this news on New Year’s Eve 2018. It wasn’t a very Happy New Year!

Initially I had been booked into my local hospital for a small operation in the New Year to remove the abnormal cells (a “polyp”) but this was cancelled when my cancer was diagnosed. I was then booked in for a laparoscopic (key-hole) hysterectomy in my local hospital.

Further tests were conducted (CT scan/ MRI scan/ X rays) which showed that the cancer had actually spread to my pelvic and para-aortic lymph nodes which staged my cancer at Stage 3C2. This meant that I couldn’t have surgery at my local hospital after all and I was referred to the Queen Elizabeth Hospital in Gateshead which is the Northern Gynae Centre of Excellence. It also meant that I would need to be treated with surgery, chemotherapy and radiotherapy.

Whilst waiting for surgery I went into googling overdrive to find out more about my cancer type and treatment options. I came across Womb Cancer Support UK and started following the posts. One post mentioned the “Canceractive” website and forum which I started following too. I purchased a book called “Everything you need to know to beat cancer” by Chris Woollams and started changing my lifestyle to maximise my chances of becoming cancer free. I also got a “Personal Prescription” from Chris Woollams to fine tune what I needed to do. I changed to the “Rainbow Diet”, ditched sugar; ate organic food wherever possible, took supplements including probiotics, walked every day, got more sleep, and eliminated stress wherever possible. There was also guidance on how to manage chemotherapy and radiotherapy effectively which proved to be very important (not necessarily what the NHS would advocate though!)

In February 2019 I was booked in for a radical hysterectomy at Gateshead which included removal of womb, fallopian tubes, ovaries, head of cervix, and the omentum (fatty layer under the diaphragm as well as pelvic and para-aortic lymph nodes. The operation was planned as keyhole surgery but with the possibility of a larger incision as necessary. On the actual morning of my surgery, I was informed by the Clinical Lead that there was a possibility that I might have two primary tumours and that ovarian cancer may be present too so I was being prepped for possible bowel involvement and had to give consent for a stoma should it be necessary. As I was wheeled into the theatre waiting area five hours later, I was informed that I was having a different Consultant, a different Anaesthetist, a different operating theatre and a different operation! So I had to give my consent all over again…. This time I was definitely having a major operation with a vertical incision. This was a real low point and I felt so vulnerable in that moment as my cancer journey was ever changing and getting progressively worse. However, I was confident that I was in the right place for the surgery, I was fit as I could be for the surgery having prepared well, and that I would have a positive outcome. The surgery took five and half hours which scared my husband and son witless as they thought it would only take 3 hours, but I am glad to say that the surgery went very well and there was no Ovarian cancer to worry about too. I woke up able to wiggle my toes (no paralysis from the epidural) and no stoma bag!! I recovered from the surgery really quickly and was allowed home after 4 days with a very neat scar!

After recovering from surgery for two months, I went through 4 three-week cycles of chemotherapy (Paclitaxel and Carboplatin). I seemed to cope with my chemotherapy very well which I put down to eating well, taking my probiotics and supplements, taking regular exercise and having hyperbaric oxygen therapy which I arranged for myself although my Oncologist didn’t support this.

In September 2019, I started 25 sessions of radiotherapy to my whole torso at my local hospital although my treatment was supervised by my consultant based in Newcastle. I felt sick on my very first treatment and was informed that I couldn’t possibly be feeling sick as that side effect doesn’t start for a few weeks and they suggested maybe I was just worried? Over the next few weeks, my side effects became increasingly severe and the local staff continued to ignore what I was saying and refused to examine me. I self-diagnosed “severe radiation proctitis” and was so concerned that I went to see my GP. He agreed with my diagnosis and said that I was very close to needing a colostomy bag as the damage was so great to my lower colon/ rectum from the radiotherapy treatment. We researched the best practice treatment regime to repair the damage and he wrote a letter to the hospital staff to advise pausing my treatment and explaining what medication was required. The next day it took me hours to finally arrange to get the prescription from my local hospital that I needed to heal the damage. I chose to stop radiotherapy treatment at this point. I completed 19 of the planned 25 sessions which didn’t make my Radiotherapy Consultant very happy but I didn’t want to risk further surgery arising from the treatment itself.

A month later in October 2019, I was fully recovered from my severe radiation proctitis and I was very fortunate to be told that there was “no evidence of disease.” I am now on three monthly check ups alternating between my Gynaecologist and Oncologist and remain cancer free after 10 months. The check-ups comprise blood tests, a chat about whether I have any symptoms, and a physical examination when I see my Gynaecologist.

Key learnings from my cancer journey – be gynae cancer aware, act early (time really does matter!), be flexible, the cancer journey is different for everyone and it isn’t always straight forward, get the best hospital possible for treatment if you can, stay positive, investigate lifestyle changes and alternative treatments to support you, be empowered – do what is right for you and your body as it is your cancer journey! (and change your consultant if necessary…)

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My story by K.C

5/9/2020

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I was 52 years old and going through what I believed was the menopause, then in March 2019 I started to have a slight show, not all the time just once every now and then. I didn’t give it a second thought. By mid April I was constantly bleeding - a permanent period but not as heavy as I used to get them so still thought it was just the menopause.

We went away for the early May Bank Holiday weekend with friends, a journey which took us 2 hours in the car. In the time it took us to get there I’d bled so much it had soaked through to the car seat. Alarm bells rang and I was on the phone to the Dr first thing on the Tuesday morning.

Blood tests showed nothing and still no let up in the bleeding. Within weeks I’d been for X-rays and scans - it showed the lining of my womb was a “little” thicker than it should be. It was in fact, as I was later to discover, 23mm.

I can’t fault my GP, she kept pushing for more tests and only when I had the biopsy, then the results, did I find out I had cancer of the womb.

I had a complete hysterectomy the day before my 53rd Birthday. Two weeks later I went for the pathology results to find out the grading/stage. Stage 1A, Grade 1. The best result I could have wished for. I feel incredibly lucky that my GP kept pushing those tests. I know how fortunate I am to have caught it early but it doesn’t stop the feelings of guilt. Guilt that others are not as fortunate as me and my biggest fear is that it will return somewhere else.

It has highlighted other health issues which are still ongoing and will be for some time to come. My family and a few close friends have been my absolute rocks through this journey and continue to be through everything else that’s in front of me.

Ladies, keep fighting that fight and never give up. You are stronger than you know❤️

If you would be willing to share your story to help raise awareness then please get in touch using the contact form.

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My story by Clare Watkins

2/9/2020

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I am writing this from my bed; I am currently 2 and a half weeks post-op. I had a full hysterectomy including ovaries and cervix (completed through keyhole surgery) after a diagnosis of endometrial (womb) cancer.
When I had my diagnosis, it didn’t come as a shock to me – it was more of a shock to others around me. Having to tell my loved ones that I had The C Word diagnosis was the worst part. However, hopefully my story will help others to know and understand the signs and to get checked out what doesn’t seem right.

I was diagnosed with Polycystic Ovaries (PCOS) in my early 20s. My GP told me on diagnosis that I had a 30% chance of ever conceiving and that this percentage would go down with time. At this time I wasn’t with anyone, was quite fresh out of university and certainly didn’t have plans to start a family.
I had been experiencing very heavy and irregular periods for a long time and went to get it checked out. During this time I was put on the pill, had a coil fitted and swiftly removed because my body began to reject it and contract it out. Nothing worked. There is a lot of irony surrounding how birth control can be used to help with gynaecological issues when you have been told you have a low chance of ever having a baby…I have thought about that a lot over the years.
…
Time moved on and symptoms remained the same. My periods were still the same, but then the irregular periods started. I would have a period then not have another for 2 to 3 months. Where most women would be buying a pregnancy test, I just had to sit there and wait.
I still never found anyone I wanted to settle down with and try for kids. During my whole life since my teens I struggled with my weight – up and down. I know this isn’t helped by PCOS, but I have also always been a comfort eater. It seemed like a never ending cycle (excuse the pun) – nothing seemed to be helping anything else. It was just the way I was.
I’m going to fast forward a few years…in 2014 I met my fiancé. I was 32 then. He’s amazing. We are getting married in April 2021. When we met, we hit it off straight away. I knew he was the one I would spend the rest of my life with. He is 10 years older than me, and had 2 children from a previous marriage. He had also had a vasectomy around 7 years prior to our meeting. On knowing this, I was faced with a decision to stay and forfeit the chance of even trying for children, or leaving and trying to find someone else. I stayed. His children were a gift to me. They are also amazing.

It’s easy to say on hindsight, but I do believe in some way that someone somewhere was shielding me from the heartache of trying and failing to conceive and carry a baby. I have shed many tears over never being pregnant, never being able to know what it feels like to carry a baby and then nurture a child of my own. I have always been maternal and always felt that I would have had at least 2 or even more children. Life and maybe fate just takes over sometimes.
I still had issues with my menstrual cycle and thought I should go and get some investigations done. I was eventually referred to a brilliant consultant who didn’t palm me off or put it down to ‘women’s issues’. She ordered an external and internal ultrasound scan. The results came back and it was decided that I was to have a hysteroscopy for more investigation and biopsies. I had this operation awake with a very non-descript local anaesthetic. They decided it would be better for me to not have general anaesthetic due to my weight. This, at the time, was probably the most painful procedure I have had, awake! I will save you the gruesome details but if you want to know more about what this is like, I will be happy to share. It was at this point that I thought I needed to do something about my weight – for my health and for my upcoming wedding.

The results came back – I was diagnosed with endometrial hyperplasia – a pre-cancerous condition which showed an unusual thickening of the lining of the womb. It is possible to reverse this condition through losing weight and I was also prescribed progesterone tablets. A repeat biopsy was planned for 4 months’ time to keep an eye on the thickness of the lining of the womb.
I started the tablets and continued with my weight loss. Then the Coronavirus hit. The whole country went into lockdown. My repeated biopsies were meant to happen in April, but I had them in June 2020. I was commended for my weight loss and it was hoped that this would have improved my condition, but within 2 weeks I was called to the hospital to see my consultant. I knew that something was wrong, particularly as hospital visits were still few and far between because of COVID-19.

After a restless night, I made my way to the hospital. I had to go alone due to restrictions at the hospital. Masked up, I sat waiting for my consultant and eventually made our way to a consultation room. I was given the news that I did indeed have womb cancer. My consultant apologised to me – she was sure that the condition would have reversed, but it didn’t.
At this point I just want to say one important thing. There are many people who everyday will get a cancer diagnosis. I have close friends living with cancer, my brother’s girlfriend died of a gynaecological cancer in her 20s. My fiancé has lost many family members to cancer. Many families are devastated by cancer every day. This is not a tale of woe for me; I want to make this clear. I am not writing as an outlet to feel sorry for myself, but rather to spread awareness. This has become more important to me since my diagnosis than anything.

It was thought that my cancer had been found early. An MRI scan was booked to confirm this and to be discussed with the MDT panel. I met the Macmillan Oncology nurses who talked to me and gave me a lot of information to read. They also gave me a telephone number so I always knew I had someone to talk to.
I felt quite apprehensive about the MRI scan; having been in generally good health to this point, I didn’t know what to expect apart from a feeling of claustrophobia. Again I had to go to this appointment alone, but this time my sister came with me and sat in the car. I’m not going to say that having an MRI is my favourite thing to do, but it wasn’t as bad as I had thought. It was noisy, and it took longer than I thought but I kept my eyes closed the whole time so I never saw how close I was to the scanning machine.

My results came in and it was confirmed that I had stage 1A cancer. A complete hysterectomy was planned including cervix and ovaries. Despite the restrictions of COVID-19, I had my diagnosis and my operation within 6 weeks.
I am now waiting for the results from the path lab where everything that was taken out was sent to be checked. This will then confirm whether I need further treatment such as radiotherapy. I hope to have a follow up appointment with my surgeon in 6 weeks. I am now in menopause. I don’t know if I can have HRT due to the hormonal issues that caused my cancer.

I will write a follow up blog about my recovery once I have had the results confirmed.
So here I am writing to ask you – if you or someone you know has symptoms that are worrying you, if something doesn’t seem right please get it checked out and don’t be fobbed off. If it’s caught early then it can be treated.

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Well Hello September.

1/9/2020

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Well, here we are again. Today is the 1st September which means the start of womb cancer awareness month. This year is our 10th campaign and although we raise awareness every day of the year, during September we try to really step it up and make as much noise as we can to #GiveWombCancerAVoice.

As a very small organisation it has been hard work to be seen & heard over the past 10 years but we have tried very hard not only to raise awareness but to give a voice to the many women who have been diagnosed with womb cancer.

Back in 2018 I wrote a blog post here about why September matters for womb cancer. I still find it shocking that the most common gynaecological cancer & the 4th most common cancer to affect women does not have an official dedicated national awareness campaign.

The amount of awareness around for womb cancer was low 10 years ago when WCSUK started and sadly it is not much better now, despite us doing what we can. We have distributed almost 20,000 of our awareness leaflets up and down the UK. They have been placed in GP surgery & hospital waiting rooms, libraries, cafes, pharmacies, and countless other places.

The lack of a dedicated womb cancer charity has not helped; although we are a small dedicated organisation we don’t have the clout that a charity does. Happy to say that things are about to change on that front pretty soon.

This month sees the launch of Peaches Womb Cancer Trust, a charity that will be focussing on awareness & research. You can read more about them in a future blog post later this month.

So the future for womb cancer awareness is looking “peachy” and once September is over we can take a step back and have a bit of a rest. 10 years of talking about womb cancer has certainly taken its toll on my mental health. I have been lucky to have a small band of fellow survivors who have been with me along the way and have helped to #GiveWombCancerAVoice but it's now time for us to focus on what we were created to do and that is support those who have been diagnosed.

We will always be there for our #PeachSisters because #NoOneFightsAlone.

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Introducing Peaches Womb Cancer Trust

My womb cancer story by R.K

My story by L.D

Dr Patricia Ellis & her womb cancer research project

Everything you’ve ever wanted is on the other side of brave by Casey-Lee Jonathan

My womb cancer story by S.R.

Waiting & waiting - by J.M

My Cancer Journey – Karen Crump

My story by K.C

My story by Clare Watkins

Well Hello September.

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