Here is another personal story of a womb cancer diagnosis.
In August 2020, in the middle of a pandemic and lockdown I was diagnosed with endometrial cancer, the news that no-one ever wants to hear, so I thought it was now time to continue to raise awareness of the condition and diagnosis.
I had Cancer! With no symptoms until July and it was a total shock. I had a post menopausal bleed. I rang the Doctors surgery and got an appointment with a nurse practitioner. Had an internal but nothing was to be seen. I was immediately referred on the two week referral system.
Then the appointment arrived and I started a series of tests, scans and biopsies, I was virtually living in the hospital. Relatively quickly I was referred to a surgeon, I’ve been fortunate to have had my health all my life til now and it was devastating. No one ever really talks about womb cancer (endometrial cancer, or uterine cancer) it should be easier to remove as it’s an enclosed space. But for me as I later found it had gone a step further.
I has a lesion on my bowel with some lymph node activity and I ended up in October 2020 in surgery facing two major ops - a full hysterectomy (incl. womb ovaries tubes and cervix) but also a section of colon was to be removed (where the lesion was) and I had a reversible stoma procedure too. I was stage 4b grade 3!
This has been life changing for me. I was facing chemo and radiotherapy but my first visit to my Oncologist was an eye opener. He said we are not going down that route yet!
We were a bit gobsmacked! I was to have hormone treatment as my cancer was driven by the excess of estrogen in my body. This was the cause of my cancer!
It was agreed to start progesterone medication to counter the estrogen and stop its production.
I returned in December following further blood tests to see where I was with this treatment. That was when things changed once again! That hormone treatment was not working and I had blood clots in my lung! The Oncologist was now recommending a change to another hormone. This one could give me osteoporosis more great news …. Not!
That was continued until Feb/March 2021 when it too was not working. Chemotherapy was the next step and was started in March 2021.
That was an eye opener in many ways. Chemo is nasty stuff, for my first infusion I was in the unit over 7 hours!
I was totally unprepared for the repercussions. Of course you’re told what may happen and to be totally honest, and with hindsight, I did get off lightly in the scheme of things.
The worst was the immediate constipation. TMI to follow here ……….
Having a stoma means your body waste does not exit your body via the normal route, but via a surgical procedure to an exit from your stomach. You’re fitted with stoma bags to collect your waste. You have no control of when or how much is produced.
The constipation was bad, I felt uncomfortable and sought help from the oncology helpline. It was suggested I took movicol. In my humble opinion it is the product of the devil!
I took a sachet - nothing. I took a second sachet - still nothing, so on the advice I took the third sachet and settled down to sleep. Well, that was the start of what could have put me in A & E !!
At approx 3am I was woken by the fact that the medication had worked, but as a bag only has limited capacity I had sprung a leak! My sh*t was everywhere! On me, the bed, the bedding. As I tried to move more appeared. I called for my Husband. He came and saw my distress and of course the mess! I removed the bag and replaced it whilst he laid towels from my side of the bed to the bathroom and the shower. I was weak from the fluid loss but managed to clean myself whilst sobbing my apologies. He, meanwhile stripped the bed and remade it. I replaced my nightwear and fell into bed. 1 hour later at 4am the poonami again arrived and provided me with a replay!
So we went into repeat mode. It was the worst experience ever, I since found out that “normal” people can take up to 8 sachets to get things moving. It was decided I was possibly allergic.
After later discussions with my Oncologist I found a way of minimising this side effect with meds, I always took it the evening before Chemo and on the morning of my Chemo and over the 6 rounds I had it under control.
I continued to have scans and blood tests and things were looking fairly positive. My CA 125 (tumour indicator) continued to drop from 103 to 12 and stayed there. So it was decided I should have 2 further rounds of Chemo taking me to 8 in total, and would finish in September 2021.
To date - February 2022 I am 24 weeks post chemo, bloods show a tiny rise in by CA 125 from 12 to 16 but I’m told is not a cause for concern. A scan should have followed mid December with a follow up appointment 17th January 2022. This didn’t happen thanks to covid pressures on the NHS. I had my bloods and a CT scan at the end of January with a phone consultation with my oncologist for the results, it should have been face to face but my consultant’s son had covid and he had to isolate!
It was not the best news ……. Again!
There was some lymph growth, an enlarging, and he was now recommending immunotherapy. I’m due to see my consultant on the 23rd February for the next step of the treatment plan. I’m feeling good and positive, I’m very determined and think my positivity and the support received from family and close friends is some of the best medicine possible. I have to add I have nothing but praise and gratitude for my level of care during such a trying time.
To all the ladies just diagnosed, or in treatment, do everything you can to be as positive as possible. I talk to this “thing” (definitely the politest way I’ve referred to it) every night, weird? perhaps, but it helps me.
And finally, to quote the Greatest Showman track “I am brave, I am bruised, I am who I’m meant to be, this is me! ❤️
In August 2020, in the middle of a pandemic and lockdown I was diagnosed with endometrial cancer, the news that no-one ever wants to hear, so I thought it was now time to continue to raise awareness of the condition and diagnosis.
I had Cancer! With no symptoms until July and it was a total shock. I had a post menopausal bleed. I rang the Doctors surgery and got an appointment with a nurse practitioner. Had an internal but nothing was to be seen. I was immediately referred on the two week referral system.
Then the appointment arrived and I started a series of tests, scans and biopsies, I was virtually living in the hospital. Relatively quickly I was referred to a surgeon, I’ve been fortunate to have had my health all my life til now and it was devastating. No one ever really talks about womb cancer (endometrial cancer, or uterine cancer) it should be easier to remove as it’s an enclosed space. But for me as I later found it had gone a step further.
I has a lesion on my bowel with some lymph node activity and I ended up in October 2020 in surgery facing two major ops - a full hysterectomy (incl. womb ovaries tubes and cervix) but also a section of colon was to be removed (where the lesion was) and I had a reversible stoma procedure too. I was stage 4b grade 3!
This has been life changing for me. I was facing chemo and radiotherapy but my first visit to my Oncologist was an eye opener. He said we are not going down that route yet!
We were a bit gobsmacked! I was to have hormone treatment as my cancer was driven by the excess of estrogen in my body. This was the cause of my cancer!
It was agreed to start progesterone medication to counter the estrogen and stop its production.
I returned in December following further blood tests to see where I was with this treatment. That was when things changed once again! That hormone treatment was not working and I had blood clots in my lung! The Oncologist was now recommending a change to another hormone. This one could give me osteoporosis more great news …. Not!
That was continued until Feb/March 2021 when it too was not working. Chemotherapy was the next step and was started in March 2021.
That was an eye opener in many ways. Chemo is nasty stuff, for my first infusion I was in the unit over 7 hours!
I was totally unprepared for the repercussions. Of course you’re told what may happen and to be totally honest, and with hindsight, I did get off lightly in the scheme of things.
The worst was the immediate constipation. TMI to follow here ……….
Having a stoma means your body waste does not exit your body via the normal route, but via a surgical procedure to an exit from your stomach. You’re fitted with stoma bags to collect your waste. You have no control of when or how much is produced.
The constipation was bad, I felt uncomfortable and sought help from the oncology helpline. It was suggested I took movicol. In my humble opinion it is the product of the devil!
I took a sachet - nothing. I took a second sachet - still nothing, so on the advice I took the third sachet and settled down to sleep. Well, that was the start of what could have put me in A & E !!
At approx 3am I was woken by the fact that the medication had worked, but as a bag only has limited capacity I had sprung a leak! My sh*t was everywhere! On me, the bed, the bedding. As I tried to move more appeared. I called for my Husband. He came and saw my distress and of course the mess! I removed the bag and replaced it whilst he laid towels from my side of the bed to the bathroom and the shower. I was weak from the fluid loss but managed to clean myself whilst sobbing my apologies. He, meanwhile stripped the bed and remade it. I replaced my nightwear and fell into bed. 1 hour later at 4am the poonami again arrived and provided me with a replay!
So we went into repeat mode. It was the worst experience ever, I since found out that “normal” people can take up to 8 sachets to get things moving. It was decided I was possibly allergic.
After later discussions with my Oncologist I found a way of minimising this side effect with meds, I always took it the evening before Chemo and on the morning of my Chemo and over the 6 rounds I had it under control.
I continued to have scans and blood tests and things were looking fairly positive. My CA 125 (tumour indicator) continued to drop from 103 to 12 and stayed there. So it was decided I should have 2 further rounds of Chemo taking me to 8 in total, and would finish in September 2021.
To date - February 2022 I am 24 weeks post chemo, bloods show a tiny rise in by CA 125 from 12 to 16 but I’m told is not a cause for concern. A scan should have followed mid December with a follow up appointment 17th January 2022. This didn’t happen thanks to covid pressures on the NHS. I had my bloods and a CT scan at the end of January with a phone consultation with my oncologist for the results, it should have been face to face but my consultant’s son had covid and he had to isolate!
It was not the best news ……. Again!
There was some lymph growth, an enlarging, and he was now recommending immunotherapy. I’m due to see my consultant on the 23rd February for the next step of the treatment plan. I’m feeling good and positive, I’m very determined and think my positivity and the support received from family and close friends is some of the best medicine possible. I have to add I have nothing but praise and gratitude for my level of care during such a trying time.
To all the ladies just diagnosed, or in treatment, do everything you can to be as positive as possible. I talk to this “thing” (definitely the politest way I’ve referred to it) every night, weird? perhaps, but it helps me.
And finally, to quote the Greatest Showman track “I am brave, I am bruised, I am who I’m meant to be, this is me! ❤️
If you would be willing to share your womb cancer journey then please get in touch using the contact form on the website.
Every time a story is shared, it helps to raise much needed awareness.
Thank you.
Kaz :-)
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