Hello, just been told I have hyperplasia atypica

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Hello all

Head is in a spin a little. My consultant phoned me after reviewing biopsy results following the myosure procedure to remove a polyp and a biopsy of a thickened womb lining. She told me that I have hyperplasia with atypica and asked me what my build was as she could not remember from seeing me, in June.

She said that wasn't cancer but could develop into cancer if left. That part I follow.

I said I was heavy but had lost 2 stone since spring. I am on track to lose two more by Christmas (on MJ). She said there were some risks from surgery and then described the coil treatment and then reviewing me again after 3-4 months. I will be honest, my head was in a spin on that phone call as she was talking fast and I needed some time to take in what she was saying. I think I ended up saying yes to the coil (is that what is called hormone therapy?) 

Now that I have had another day to read patient info websites (trying not to Dr Google) and the Royal College briefing for docs, I see that in hyperplasia with atypia, the Gold Standard treatment is a hysterectomy. I think I would like that but now am scared that I can't have it.

I am fit, exercise 3 times a week, resting HR of 64, and no other health conditions but I am heavy. I looked thin when I was 11 stone. 

I don't know what the waiting time is for a hysterectomy in Scotland and am worried that  by saying yes to getting a coil fitted in September, I will then be dismissed from waiting list to have a hysterectomy. I am worried that I should just be saying yes to getting a hysterectomy straight off, as reading that 8 out of 100 people with atypia go on to develop cancer makes me feel I have a ticking time bomb inside me.

Do any women on here have any experience of being in the dilemma where, if you were in the normal bodyweight range, you would get a hysterctomy straight away?

Does it sound like I am taking the right course of action, trying to lose another 2 stone for Christmas to get my weight down a bit? Is it a race against time with these pre-cancerous cells? Do they change quickly? Is this even known?

I would appreciate any opinions. Thank you. I feel a bit anxious.

  • im in a similar position as you although i have had the coil put in just waiting to go back for a biopsy as its been 3 months now the dr said if cancerous cells are still there after 3 months i will get a hysterectomy. so i assume even if you have the coil and it doesn't work you will then be offered the operation i am also overweight and have lost some weight on mj still a lot to go though so i dont know if that why they offered me the coil instead and im 43. 

  • Hi sofargoner, what’s your BMI?

  • I have had the coil in for over 10 months now, with few problems. My lining has reduced dramatically and on the last biopsy it showed significant changes/improvement. The cancer cells don't just go away instantly and it can take quite a long time to work. So long as the coil is in place and your condition doesn't get any worse - and improves, there is generally little risk in leaving it there for some time. They do offer you the operation but you don't necessarily need it straight away and can take some time losing more weight.

  • I was told that the coil can take up to a year to work properly and so long as it's in place for low grade cancer, it's generally safe whilst losing weight. Some women have them in for considerably longer than a year and not everyone is suitable for surgery. I would have thought that in your case as it's pre-cancer it should be fine to keep in whilst you try to lose weight. They usually do regular checks such as repeat biopsy and MRI every few months just to reassure you.

  • Thank you for your post, it is very helpful to me. However regarding what I have, I am a little confused, if I have 'rogue cells' that can turn cancerous, the atypica condition, does that mean I have cancer? I have literally just found all this out and see women posting about Stage 1 - is that me?

  • I was kinda thinking that then someone said to me that the cancer could be there anyway but undetectable, so get the hysterectomy asap?

  • is it okay if I ask you why you didn't just go straight for a hysterectomy?