Another in our series of personal stories by women with womb cancer.
"I’m only 50. It felt such an age when I celebrated my birthday in January 2014 but six weeks later as the diagnosis of cancer of the womb sank in, it suddenly felt much too young.
I’d been experiencing long periods for four months when I went to see my GP back in January. I’d been using the Mirena coil for nearly ten years and it had stopped all monthly bleeding for that whole time so a three-week period in October was a bit of a surprise.
I did call the GP at the time and had had a telephone consultation. “I’ve had a period that has lasted three weeks,” I told him. “Come and see me when it’s finished,” he said.
The bleeding would stop for a day or two, I’d get ready to lift the phone and then it would start again. Christmas with all its busy-ness loomed then came and went. The prospect of an internal examination with the GP put me off and I reasoned that this was probably the start of the menopause. Nothing to worry about. I didn’t make that call back until January.
My GP acted quickly with an immediate referral to a gynaecologist as well as sending me off for blood tests and an ultrasound. He asked me what I thought it might be. Menopause, I ventured. He had no firm ideas – or none that he shared with me – but said my womb felt normal.
The bloods came back normal, I wasn’t even menopausal, and the ultrasonographer found a large fibroid. Aha, I thought, that would be it. The symptoms fitted.
When I saw the gynaecologist, a couple of weeks later I went armed with my symptoms and family history written down. She scanned down my account of the last few months of bleeding, my contraceptive history, pregnancy history, and my mother’s history of a hysterectomy in her late 40s, breast cancer in her late 50s and eventual death from ovarian cancer at 70. “Did they not remove your mother’s ovaries,” she asked, peering over her half moon spectacles. Evidently not, I thought.
She found what she called a “very large fibroid”, told me my womb was the same size as if I was 16 weeks pregnant, then organised a biopsy and removal of the Mirena coil. The normal waiting time was 13 weeks, she said, but she’d like to do it in two.
That made me start. I know that cancer referrals are made quickly – but that usually it is the GP who instigates the so-called two-week cancer pathway. I gave myself a stern talking to – thousands of women have fibroids, they are benign and while recovering from a hysterectomy might not be my chosen way to spend spring, if that is what I needed, let’s get it done. Cancer is much rarer. The websites with hysterectomy information told me so.
So another round of waiting before the biopsy was performed as day surgery with an appointment set two weeks hence for the results.
A week later I had a call from my gynaecologist’s secretary; she had a course during the week of my appointment but could see me tomorrow, not in the private hospital where I had undergone the biopsy (on the NHS) but at the main NHS hospital, she said.
I gave myself another stern talking to as the word “cancer” flited across my mind and asked a friend to come with me. I was ready to talk about treatment options for hysterectomy: key hole surgery, the advantages and disadvantages of removing my ovaries, and non surgical options.
The clinic was heaving with people but my friend and I were called in quickly. We sat down and then the bombshell landed. It was very simply delivered. “I am very sorry but you have cancer,” She said as she held my hand.
I think I may have yelped. I felt my friend’s arm around my shoulder and we stumbled into the next door room to talk with the clinical nurse specialist. She explained that I had cancer of the endometrium, the lining of the womb, and that I would need a total hysterectomy, possibly followed by radiotherapy. She advised me not to read too many websites as I would just frighten myself but if I must know more, then go to the Macmillan website.
My first and most urgent thought was: what do I tell the children? The nurse asked their ages – two girls aged 10 and 13 – and advised me not to use the C word but to say I had some abnormal cells that needed to be removed. True without being too shocking and good advice at the time.
My friend called my husband and again delivered the news very simply and very directly. He was there when we got home.
That day – February 25th, 2014 – was the start of my cancer journey. It’s May now and I have had surgery, where they found the cancer had spread half way through the wall of my uterus, to my ovaries, my Fallopian tubes and my cervix as well as to several of the lymph nodes in my pelvis and around my aorta. It’s one of the rare forms – uterine serous carcinoma – and is very aggressive. Despite heroic efforts, the surgeons could not remove all the tumour so now I am having chemotherapy to be followed by radiotherapy. The best my doctor can offer me as a hope for this treatment is a few more years before the cancer comes back.
The treatment itself is hard; the surgery was difficult but I survived it and thanks to being in good shape beforehand I have recovered quickly. I have developed an affirmation that helps me cope with the chemotherapy. I tell myself: “Chemotherapy is my ally in my battle against cancer and the side effects are just casualties in that battle”. Either that or “kill the bastard” depending on my mood.
A cancer diagnosis does feel like a bomb going off in your life and as I write, I wonder, could it have been caught earlier? Was I fooling myself with thoughts of menopause and fibroids?
In retrospect, maybe I could have gone to the doctor sooner. Sex was sometimes painful for a year or so before the bleeding started but I put it down to scar tissue from difficult births. But in all honesty, until the bleeding started none of my symptoms was specific enough to trigger alarm and I have since read that this cancer is commonly diagnosed late because of this lack of symptoms. Nor did I have any of the risk factors: I’m premenopausal, I have children, and I’m not overweight. If I had convinced myself it was cancer rather than something benign, it would not have made any difference to how quickly I have been treated by the wonderful NHS.
I have chosen to be very upfront about my diagnosis (including with my children – but that’s another story) and while that has been both difficult and tiring at times, it has unleashed a huge font of goodwill. My friends and family are queuing up to take care of me and accompany me to endless hospital appointments. My husband has been an absolute rock. I wouldn’t wish this diagnosis on anyone and I wish with all my heart it was different but I do also feel blessed to be surrounded by so much love and care."
If you are willing to share your story to help raise awareness then please email me at wcsuk@hotmail.co.uk
xx Kaz xx
"I’m only 50. It felt such an age when I celebrated my birthday in January 2014 but six weeks later as the diagnosis of cancer of the womb sank in, it suddenly felt much too young.
I’d been experiencing long periods for four months when I went to see my GP back in January. I’d been using the Mirena coil for nearly ten years and it had stopped all monthly bleeding for that whole time so a three-week period in October was a bit of a surprise.
I did call the GP at the time and had had a telephone consultation. “I’ve had a period that has lasted three weeks,” I told him. “Come and see me when it’s finished,” he said.
The bleeding would stop for a day or two, I’d get ready to lift the phone and then it would start again. Christmas with all its busy-ness loomed then came and went. The prospect of an internal examination with the GP put me off and I reasoned that this was probably the start of the menopause. Nothing to worry about. I didn’t make that call back until January.
My GP acted quickly with an immediate referral to a gynaecologist as well as sending me off for blood tests and an ultrasound. He asked me what I thought it might be. Menopause, I ventured. He had no firm ideas – or none that he shared with me – but said my womb felt normal.
The bloods came back normal, I wasn’t even menopausal, and the ultrasonographer found a large fibroid. Aha, I thought, that would be it. The symptoms fitted.
When I saw the gynaecologist, a couple of weeks later I went armed with my symptoms and family history written down. She scanned down my account of the last few months of bleeding, my contraceptive history, pregnancy history, and my mother’s history of a hysterectomy in her late 40s, breast cancer in her late 50s and eventual death from ovarian cancer at 70. “Did they not remove your mother’s ovaries,” she asked, peering over her half moon spectacles. Evidently not, I thought.
She found what she called a “very large fibroid”, told me my womb was the same size as if I was 16 weeks pregnant, then organised a biopsy and removal of the Mirena coil. The normal waiting time was 13 weeks, she said, but she’d like to do it in two.
That made me start. I know that cancer referrals are made quickly – but that usually it is the GP who instigates the so-called two-week cancer pathway. I gave myself a stern talking to – thousands of women have fibroids, they are benign and while recovering from a hysterectomy might not be my chosen way to spend spring, if that is what I needed, let’s get it done. Cancer is much rarer. The websites with hysterectomy information told me so.
So another round of waiting before the biopsy was performed as day surgery with an appointment set two weeks hence for the results.
A week later I had a call from my gynaecologist’s secretary; she had a course during the week of my appointment but could see me tomorrow, not in the private hospital where I had undergone the biopsy (on the NHS) but at the main NHS hospital, she said.
I gave myself another stern talking to as the word “cancer” flited across my mind and asked a friend to come with me. I was ready to talk about treatment options for hysterectomy: key hole surgery, the advantages and disadvantages of removing my ovaries, and non surgical options.
The clinic was heaving with people but my friend and I were called in quickly. We sat down and then the bombshell landed. It was very simply delivered. “I am very sorry but you have cancer,” She said as she held my hand.
I think I may have yelped. I felt my friend’s arm around my shoulder and we stumbled into the next door room to talk with the clinical nurse specialist. She explained that I had cancer of the endometrium, the lining of the womb, and that I would need a total hysterectomy, possibly followed by radiotherapy. She advised me not to read too many websites as I would just frighten myself but if I must know more, then go to the Macmillan website.
My first and most urgent thought was: what do I tell the children? The nurse asked their ages – two girls aged 10 and 13 – and advised me not to use the C word but to say I had some abnormal cells that needed to be removed. True without being too shocking and good advice at the time.
My friend called my husband and again delivered the news very simply and very directly. He was there when we got home.
That day – February 25th, 2014 – was the start of my cancer journey. It’s May now and I have had surgery, where they found the cancer had spread half way through the wall of my uterus, to my ovaries, my Fallopian tubes and my cervix as well as to several of the lymph nodes in my pelvis and around my aorta. It’s one of the rare forms – uterine serous carcinoma – and is very aggressive. Despite heroic efforts, the surgeons could not remove all the tumour so now I am having chemotherapy to be followed by radiotherapy. The best my doctor can offer me as a hope for this treatment is a few more years before the cancer comes back.
The treatment itself is hard; the surgery was difficult but I survived it and thanks to being in good shape beforehand I have recovered quickly. I have developed an affirmation that helps me cope with the chemotherapy. I tell myself: “Chemotherapy is my ally in my battle against cancer and the side effects are just casualties in that battle”. Either that or “kill the bastard” depending on my mood.
A cancer diagnosis does feel like a bomb going off in your life and as I write, I wonder, could it have been caught earlier? Was I fooling myself with thoughts of menopause and fibroids?
In retrospect, maybe I could have gone to the doctor sooner. Sex was sometimes painful for a year or so before the bleeding started but I put it down to scar tissue from difficult births. But in all honesty, until the bleeding started none of my symptoms was specific enough to trigger alarm and I have since read that this cancer is commonly diagnosed late because of this lack of symptoms. Nor did I have any of the risk factors: I’m premenopausal, I have children, and I’m not overweight. If I had convinced myself it was cancer rather than something benign, it would not have made any difference to how quickly I have been treated by the wonderful NHS.
I have chosen to be very upfront about my diagnosis (including with my children – but that’s another story) and while that has been both difficult and tiring at times, it has unleashed a huge font of goodwill. My friends and family are queuing up to take care of me and accompany me to endless hospital appointments. My husband has been an absolute rock. I wouldn’t wish this diagnosis on anyone and I wish with all my heart it was different but I do also feel blessed to be surrounded by so much love and care."
If you are willing to share your story to help raise awareness then please email me at wcsuk@hotmail.co.uk
xx Kaz xx
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