Confused, angry and scared

Hi Cherry

Welcome to the Womb group. 

I am sorry to hear that you have been diagnosed with atypical hyperplasia and a grade 1 cancer. I understand that you are feeling confused, angry and scared and they are all very natural emotions at a time like this. 

Hyperplasia is where the lining of the womb is thicker than they would like and atypical means that it has the potential to become cancer in some people given time. Yours has developed into a small area of an endometrial cancer. Grade 1 means that the cells are only slightly different and this is the best grade to have as the cancer tends to be less aggressive and slower growing. 

The purpose of the MRI is to stage the cancer and to check whether there is any spread. If the cancer is contained within the womb then that would be a stage 1. 

It is normal for all the results to go to an MDT where they look at everything and decide on the most effective treatment. 

For most ladies, where it is medically possible a hysterectomy is the first line treatment. I understand why you do not want to have this and understand why you are concerned that a surgical menopause may cause more issues than a natural one. There can sometimes be alternatives but this is something that you would need to talk to your consultant about after the MDT. Occasionally a mirena coil plus monitoring can be used where there is a stage 1a, grade 1 cancer. This is not suitable for everyone though.

My surgery was in 2022 and was done via keyhole. I recovered well from it and had little pain. After surgery everything that is removed is sent to pathology and it is these results that determine whether any further treatment is needed. 

I did not particularly have any menopausal effects from mine. 

Perhaps give the Support Line a call- it is available from 8am-8pm everyday and talk things through. 

Jane

I've been post menopausal for a long time and I dont feel my identity is tied into any of my organs. I wonder why you feel that way and if it is something that counselling might help with. I'm waiting on biopsy results for a large polyp and if it's cancerous and I need a hysterectomy I'll be going for that. My chance of survival - so still being me - will be higher if any cancer is removed. 

You should ask your consultant about HRT, There may be some types you cant have but probably some you can as it's an early stage cancer - and you'll only know if you ask. 

You would be going through menopause soon anyway and while for some women that is really tough it isnt hard for everyone and HRT can help. You are probably more likely to be offered some HRT if you've had the cancer removed. 

I have been post menopausal for 10 years and I have never looked back. Passing this phase of life brings freedom. No more worrying if TOTM is a bit late, no pain and fear of leakage. But more than this, at Stage 1 you stand a really good chance of a full recovery and a long and happy life with your family (esp the kids).

I recently was facing the possibility that i may have to have a hysterectomy and more - there was no doubt in my mind that I was going to face the future, whatever it may bring, and fight my bl***y hardest to get thru.

This too shall pass. Discuss your fears with your family.

Good luck xx

HRT is not normally offered after a diagnosis, even when cancer removed and an early stage. Endometrial cancer can develop due to imbalance of the hormones so any HRT could cause a cancer to come back- particularly if the cancer was hormone positive. For a minority they will consider it but only if the benefits outweigh the risks. If it is considered then it would tend to be a low dose topical HRT. For the vast majority of ladies- whichever stage the cancer was- HRT is normally contraindicated. Same with breast cancer. This is how my consultant explained it. She also said that there can be other options that are not hormonal that can be tried such as low dose SSRI. So HRT is not completely ruled out, however my consultant explained it is not something they like to give unless symptoms are severe- then it is a risk vs benefit decision. 

Thanks for that info. That has given me a clear steer they are not removing all my boots and pieces. I am not going through surgical menopause with no HRT.

I would rather go through a natural menopause, than be smacked in the face the next day after surgery and how will they balance my out of balance testosterone hormones? 
natural all the way or no way at all. There is no ovarian cancer in my family so no need to remove them, but overall the top if you ask me.

I am not suggesting that you don't have surgery, just explaining what I was told about HRT. 

When the MRI results come back they should be able to give you a provisional stage and grade and this will determine whether there are any alternative options. It is normally only a stage 1a/grade 1 cancer where a hormone treatment is a possibility. This can occasionally be offered to ladies who can not have a hysterectomy for medical reasons or who are younger and want to try to preserve fertility. The treatment does not work for everyone and involves repeat testing and monitoring. 

At the moment you have atypical hyperplasia which is a condition where the endometrium can become cancer- in your case it has already turned cancerous in a small area. This needs treatment so any cancer is removed before it spreads/develops further. 

Surgery is normally offered as the first line treatment and normally involves removing the womb, cervix, fallopian tubes and ovaries. This is considered safest as these are the areas where the cancer may go as it develops. 

I do understand about HRT and the worry about developing menopausal symptoms- I do understand that for some ladies- particularly when they are younger there is a concern that a surgical menopause could be more challenging- however this is not necessarily the case for everyone. 

There may be alternatives to HRT for you that don't involve hormones. Low dose antidepressants can be used for example. It is important that if you do consider using any alternative menopause treatments that these are done after speaking to you doctor. 

Alternatives to hormone replacement therapy (HRT) - NHS

For me I had a provisional diagnosis of stage 1 cancer- so contained within my womb however after surgery my results came back to show that I had some LVSI present. This is where tiny cancer cells were found in the small vessels leading from the cancer. These are microscopic cells and can not be seen on any scan. If I had not had the surgery, I would not have known and these tiny cancer cells are the start of cancer spreading. 

If your cancer is confined to that one area of the endometrium then it will likely be a stage 1 cancer. The MRI is to look to see if there is any spread elsewhere. Hopefully it will show that the cancer is contained within your womb. 

When I had my diagnosis and was told about the surgery, I did have worries but I am glad that I did. My cancer was already trying to spread. Yes, I can not have HRT as my cancer was hormone positive but I am here 3 years post treatment. 

After surgery, my first feelings were of relief that I had the cancer removed. I went on to have further treatment to mop up any stray cancer cells and this was hard to accept. 

Your concerns about menopausal symptoms are very valid ones but to me getting rid of the cancer and doing everything possible to reduce the risk of it recurring were more important than having menopausal symptoms. In the end I have had very few symptoms.

I think maybe the best thing to do is to wait for your MRI results and your appointment to discuss treatment and maybe use the time to write a list of questions/concerns and then talk these through with your doctor- I did this at times and it can really help when making an informed choice. You could also give the Support Line a call and talk it through on there.

I have pcos too - no family history whatsoever.  Unfortunately it increases the risk of endometrial cancer. HRT is something to discuss with your consultant. Research evidence and official guidance does not rule it out for every woman who has had endometrial cancer. https://www.bgcs.org.uk/wp-content/uploads/2024/08/BGCS-BMS-Guidelines-on-Management-of-Menopausal-Symptoms-after-Gynaecological-Cancer.pdf and you need to speak to someone up on the latest research on the risks. Your testosterene levels would fall after menopause, how that would affect you is something to discuss with an expert.

Your ovaries produce oestrogen and too much osetrogen increases your cancer risk. Removing them increases the length of time you are likely to survive.

Your chance of surviving is improved if you have prompt surgery. The thought of surgery may be frightening but they do keyhole surgery now and you'll soon be back home recovering. 

Thanks for your response. You’ve made it sound 1000 times worse so I am sure I am not going down the surgery route. There is no ovarian or womb cancer in my family so no need to remove the ovaries.

I’m glad you were 10 years past menopause, but different to not even being peri menopause. It won’t bring freedom it will bring depression and misery. It’s a bit difficult when there is no family to discuss with.