Thursday, 20 May 2010

Calling all Women - Uterine Cancer - This May Save Your Life

Hello friends!
I know I have been silent for over a month and that is not like me at all.
But there are good reasons for the lack of blogging.
I have been wondering whether to share this with you or not, as it is very personal.
But I have chosen to write about it in hopes that it may help some of you and bring you to an awareness of a condition some of you may be experiencing now, or in the future.

I am recovering from a total hysterectomy. My surgery was done on April 26th at the Women's Hospital in Birmingham. I am still healing but that is only half of it.
Last week, I received a letter, confirming that there was cancer in my removed uterus.
I had dodged a bullet, but one I never saw coming. This is the story.

It has been a journey that began all the way back in August 2009.
Let me go back there and begin at the beginning . . .

Last August, I began bleeding. Thought nothing of it.
Being like a lot post-menopausal women, I didn't know too much about what my body was up to. I had had an easy time of menopause - my cycle simply stopped. No more periods. No odd symptoms, no hot flashes. Nothing.
So this weird bleeding seemed to me like a one-off. Nothing to worry about.
In fact, almost as if to prove my point, it disappeared as quickly as it began and I truly thought nothing more about it.

Then, in late November, it happened again. Only this time it stayed for a couple of days.
Again, I really didn't consider it any sort of warning sign or anything like that. We women are tough and used to our bodies having unusual discharges. All women go through menopause differently and there are no set rules. Who knows why our bodies do what they do, right?

But then, the following week, in early December, it happened again. And stopped again.
And then the next week, it came back again, and stopped again. Now I began to worry.
It wasn't as if this were a recurrence of a monthly cycle, it was weekly and so the warning bells went off.

But the holidays were fast approaching and I was busy and waited to call my GP.
In the meantime, the bleeding stopped again and I felt a little better about it all.
In early January it started up again, but this time, it did not stop.
Once a week, for a day or so, the bleeding came back again.
I began inquiring among neighbours and friends to see if they could recommend a good OB/GYN person for me to go and see. Each time I was met with blank stares.
And even when I asked a nurse in reception at a local doctor's office I received the same look. You see, it is a term that is unfamiliar here. Most people refer to gynecologists as 'guy-nee' and I was speaking with a funny accent using odd terminology.

When I was able to get my question across, I was alarmed to discover that most women did not have a personal gynecologist. They were seen by the nurse in their doctor's offices for pap smears and only went to see the guy-nee when they were having babies.
And today, most of them are now seeing midwives for this rather than OB/GYN doctors. So it might be years before they actually see a medical doctor who specializes in women's bodies. Scary.

In fact, most women I spoke with glanced away with a shy look when the subject was broached. None of them had regular visits to a gynecologist who knew them and their medical history.
In fact, unlike most HMOs in the US where a woman has an assigned doctor as her Primary and an OB/GYN for her gynecologist, here in the UK, a woman has a GP (Primary) who must refer her to a gynecologist if she wants to go and see one. This makes it all the more difficult, and embarrassing, for women - especially shy women - to broach the subject with their GP. And if you do not have a good relationship with your assigned GP, well, you might be inclined to put off making the appointment, as did I.

Now, I am not a fan of our GP. We are looking to make a change to another one, but in the meantime, I knew I was going to have to deal with the doctor we had.
I really did not want to have to go in and discuss this with him, and this contributed to my reluctance to make an appointment with him. Add to that that my darling husband was working out of town in a difficult situation, and I just didn't want to go.
But these all were excuses and I had no other choice.
I made the appointment in late January and went in to see him in early February. He referred me to a clinic at the women's hospital for a simple diagnostic test.

I was infuriated with him because of this. I wanted to see a practicing, gynecologist, and he was sending me for a scan! This is just another way women are manipulated within the system, and must defer to one doctor in order to even try to be seen by a specialist.

I went in to the clinic on my assigned day and waited my turn. I was called in by a technician who explained what procedures she would be doing that day. The first was a belly scan. Depending on its results, determined whether or not she would do an internal exam and take some measurements of my womb. In the end, both tests were done.

Let me pause here to say, that of everyone in the hospital that day, this technician was the only person who was insensitive, heartless and cold. In the documents I received prior to the examinations that day, it was said that I could ask the technician for results of the examinations, and that she would be able to reveal them in a limited way.
I asked her what she had seen and what it meant. Her reply was this, " The lining of your womb is about 4 times the thickness it should be."
When I asked what that meant, she said, 'If I told you that, it would scare you to death.'
Then she instructed me to go to the gynecological clinic to be seen by someone else.

Naturally, her remarks made me believe I was a dead woman walking. And little did I know how close to the truth, that indeed, was.
I waited for hours to be seen in the very busy clinic, all the while struggling to remain calm but fearing the worst. Finally, I was seen by a very loving, caring woman who did another internal exam with a camera to try to discover more about my condition.
She could not get her tools to work properly so she sent me to a different area of the clinic where they could try to get some tests done with proper specialty equipment.

I was then sent to another specialist, in both room and person, for another attempt with the camera. But my body was having none of it.
So an appointment was made for me to return later that week, when the doctor who specialised in these procedures would give it a try.
In the meantime, I was informed about what to expect given different outcomes of the examinations.

I was told it was more than likely fibroid tumors and that it would be a simple removal of them and that would be that. When I returned to the clinic to see the doctor again, he was so sure it was going to be uterine fibroids, he actually asked me to take part in a study.
But the results of his biopsy and examinations took a different path.
Interestingly enough, my pap smear test came back negative. But the biopsy of the pollups revealed there were 'pre-cancerous' cells in the womb.

I was invited to return to the hospital to see a doctor specialising in oncology and it was her recommendation that I have a complete removal of my uterus, ovaries, and cervix - and possibly lymph nodes, too.
What had been discovered in my womb was pre-cancerous cells and it was best to take no chances.
Surgery was scheduled for April 26th and I had the procedure late Monday and was home by Thursday evening of the same week.

I know, I know, this has been a long and wordy post after so much silence on my part.
But I wanted to tell the story because I believe it is a common one.
As women, we take for granted that our bodies do weird things, have odd discharges, bleed sometimes when it is not expected, and so on.
From the moment we enter puberty, it is a long struggle with what changes we will have to put up with next!

Just look at the way different women experience the joy of pregnancy!
Some fly through it without a care, others are wrought with problems.
We are often told that what we are experiencing at any given time is 'common' and not unusual.
So naturally, when you are a fifties-something woman who has been experiencing menstrual cycles for decades, you too would probably not think it odd to be bleeding, yet again.

So my message to you all is this - it is not normal to bleed after menopause.
I can't even think about what my outcome might have been had I waited any longer.
And I am ashamed that I waited as long as I did.

If you have gone through menopause, and have experienced bleeding, no matter how minor, do not wait a single day.
Bleeding after menopause is is sure sign that something is not right.
Go to your doctor right away, no matter how odd you feel about it or how shy you are.
Get tested and live a long and healthy life.

NB: 23 May 2010 - UPDATE:
Letters arrived yesterday in the post from the surgeon. Microscope tests of the removed tissue revealed it was, in fact, cancer.
It was all contained within the womb and nothing had the chance to spread.
Thank God.
Be ever so careful and watch for signs that will provide you with a positive outcome, too.


To learn more, go to WebMD, and to MedicineNet for signs and symptoms.

Happy to be home and writing again!
xxx
Maggie

4 comments:

natalie jo said...

Oh Miss Maggie....what an ordeal!!!I knew something must be up and was missing your posts. Am ever so happy to know you are now on the road to recovery. Take it slow and take care!

Most Fondly,
natalie jo

The Rose Room said...

oh Maggie, thank you so much for sharing your very personal story! I have had a hysterectomy but your story has a very good lesson, listen to your body and don't dilly dally! I think someone was looking after you because your outcome could have been so much worse! Take Care - Rachaelxo

ted and bunny said...

Hey, just wanted to say a big thankyou for following my blog, and then I read your post and so I would also like to wish you a good recovery.
I'm scheduled early July for an oophorectomy- like you I followed my instincts and didn't dare ignore any warning signs.
Be kind to yourself and enjoy the sunshine
xx

ALL ABOUT CHOCOLATE CREATIVE... said...

Hello
Thanks for sharing your story, after reading it I have called the surgery to make an appointment to have a smear test done as the previous one was wrong and I need to have another done soon. I HATE this procedure but it has to be done. You have been very lucky after all, and I am glad you are at home enjoying life!! I just got the 2 small cameos frames form your Etsy shop, I have been after something similar for ages, to go with my cameos cushions. So much looking forward getting them!!
Regards from London
Marga