Complex Hyperplasia with Atypia

Hi Jade,

Have you had a hysteroscopy? During that procedure the gynaecologist can usually get a good lock at your womb and give you an indication of what's happening and take a good sample, is this the procedure that you are waiting for at the cancer clinic? 

I don't have the statistics that you are looking for but I do know that 90% of people who have a womb biopsy get the all clear. 

My biopsy found cancer so I had a hysterectomy as my only treatment, my hysterectomy was open abdominal surgery and they took my womb, cervix, ovaries and tubes. Lots of women have laparoscopic surgery but my womb was too bulky to get out that way. 

Some young women on the site with early stage cancer are being treated with hormone therapy and regular monitoring.

I went to my doctor in February, was diagnosed in June and had my hysterectomy in August, unfortunately it's not a quick process. 

To cope with the torture of waiting distractions and keeping busy are what works best, or you can try some mindfulness or meditation from you tube.

Whatever happens we are here to wait with you.

lots of love

xxx

Hello Aria,

thank you for your reply! 

I haven’t had a hysteroscopy.  I was told that they will do a CT scan either before or after my consultation at the clinic.  I think they are referring me to the cancer clinic because of my family history, and I will see an oncologist/gynecologist.  All I know so far is they will most likely take everything, and open abdominal surgery was mentioned.  I will know more after my appointment in May.

The ct scan will give you a good idea what's happening inside, it can see anything that looks amiss. 

I was home after two nights after my open surgery and was surprised at how well I felt and how mobile I was, I was expecting to be laid up in bed but I could move around and wash and dress myself from the morning after surgery, 

Have you been through menopause yet? 

xxx

Heya,

I'm one of the ones who is having their cancer treated by hormones rather than a hysterectomy.

I had a womb full of atypical hyperplasia and then polyps that were cancerous.  After they did the hysteroscopy that diagnosed the atypical hyperplasia, they did a procedure that removed the whole lining of the womb, polyps and all. So as your Dr pointed out, some of the cells around the biopsy site could be cancerous. So that's why they did the second procedure on me, as everything was sent to the lab and tested.

After they found the cancer, they said I could either go hysterectomy or hormone suppression. Due to my age, mid 30's, I chose hormone suppression which is a Mirena Coil and Progesterone tablets. At my last checkup, no cancer, no atypical hyperplasia, not even any hyperplasia. So all good.

Lass

XX

Hello Aria,

No, I am in peri-menopause.  This whole thing caught me off guard.  I really thought it was just part of peri-menopause.

I am glad to hear your recovery was good.  That is a concern, and I guess I won’t know until I get there.

Jade

Hello Lass,

i am so glad you are doing well.

I am 50, so I think that is why they are leaning towards hysterectomy.    I was wondering  if being on progesterone would help reverse it, because it’s the lack of progesterone that caused this.  So, I am not sure what I want to do.  I don’t want to loose my ovaries.  

Jade

Hi jade,

if they take your ovaries it might give you surgical menopause, I have surgical menopause, Its no walk in the park, but it could be worse. For me It's cyclical like pmt and makes me emotional, I'm a bit forgetful and I get hot flushes, it's all got better over time though. My nurse tells me that some lucky women get no symptoms at all and sail through it. 

If loosing your ovaries is a concern for you definitely ask about the risks and benefits at your next appointment, if it was me I'd ask about my cervix too, my nurse said that they sometimes don't remove it, or all of it. 

Xxx

p.s whilst I waited on treatment I had a mirena coil fitted to help my womb, you might want to read about the coil on the NHS website before your appointment, I hesitated at my appointment then had to go to a separate clinic to have one fitted 

Hey Jade,

From what I was told when I was asking all of my questions, then I doubt they would let you keep your ovaries. Had they given me the hysterectomy, then they wouldn't have allowed me to keep mine. They said to think of them like little ticking time bombs, waiting to go off. Which would mean more surgery down the line, though there's no guarantee how fast they'd have caught something going wrong with them.

However, I have seen women on here who have kept there's, so I'm guessing it comes down to the consultants preference and personal opinion on the matter.

But definitely, have all the chats with the Dr until you come up with a plan you're happy with. It's your body, your decision.

Lass

XX

Hello Lass,

How long was it between your testing/taking hormone suppression, and no longer having cancer, and atypical hyperplasia? 

I know they will want to do a hysterectomy because of my age, but I have wondered if it could be reversed.

Jade

Hey there

I was put onto the pills and the coil in the December, and then the results of the July hysteroscopy showed a picture perfect womb with no polyps, no cancer, no atypical hyperplasia, and no hyperplasia. I was watching the screen as it was being done, as I have all the other times, and the change was dramatic! Where it had been lumpy, bumpy, with growths and all sorts going on at the first one - at the July one it was smooth, clean, and a beautiful light pink colour. lol

So certainly when they gave me the option between the hormones and the surgery - and I've seen others say the same thing was said to them - they told me to give it 6 - 9 months on the hormones to see what happened and if it worked. If it didn't, then they would do the surgery, but the 6 - 9 months was the average time it takes for the hormones to do their thing. Also, if they're considering you for hormone therapy, then they are sure that the cancer isn't one that will grow and change and spread in that time, so it gives the hormones time to work.

Hope that helps!

Lass

xx