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[Tashton]

So as posted previously had biopsies last week, told 6 weeks for results.  Today I get a call from surgeon saying lab had contacted him saying very abnormal cells in lining. Complex endometrial hyperplasia with atypia. At first he said pre cancer, then he said 2 cancer nurses will call me and I will be booked full hysterectomy.  I'm in total shock receiving this over phone. He said he didn't have any appointments face to face and couldn't delay telling me.  Why do people with this condition get cancer nurses

[Charleyfarley]

Hi Tashton….

I can only imagine your shock…I don’t know enough medically about the call you received to be able to tell you anything solid but what I do know is there are lots of reasons you can be put on this pathway that aren’t worst case scenario….sometimes purely down to making sure you are seen within a certain amount of time & ruling things out….

I just want to send hugs and let you know that I had seen & heard you ♥️ such a scary thing to happen & want you to know there are lots of ladies here that I am sure will be able to talk through this with you that may have been here before xxx

[CLKD]

Shock can take the breath away  . 


My Surgeon rang me earlier than expected, after a breast lump: none sinister: was removed because 'there were changes in the edges' at histology.

In the meantime I would make a list of your worries and questions 4 when the Nurses contact U.  Don't feel that you are being rushed into anything.  Ask what HRT you may require after surgery.  Take someone with you.

Make sure that you have contact numbers of the Nursing support team 24/7.   Hysterectomy is major surgery so ask if this is the main route for this particular condition and get them to explain exactly what it is.

Do U live alone?  If U opt for surgery then do buy button down nighties, because lifting over the head can be difficult when the body is stiff and sore.  Also do lots of batch cooking for the freezer ;-)

 

[bluebird68]

My sister is on a similar pathway. It was a shock for her as she had womb biopsy and told it was pre cancerous and needs a full hysterectomy. She was also given the McMillan nurses contact. The fact they will operate sounds like they can help and doesn't always mean the worst. Wishing you good luck..one day at a time xx

[Suziemc]

I was referred on the 2 week pathway twelve months ago following post menopausal bleeding. It was a 'cancer nurse' who called me take my medical history, listen to my concerns, discuss the  biopsy procedure and explain what would happen. It was the same lovely lady who called me when my result was, very fortunately for me, negative and wanted me to know as  soon as possible rather than wait for a letter in the post.

I think the nurses who are going to call you are probably the best in their field and specialists in gynae cancers.Try not to think of them as 'cancer nurses' but look at it that you have the gynae experts in your corner, they will have the knowledge and experience to answer your questions and reassure you. 

Hope all goes well

Suzie

[Northerngirl]

My heart goes out to you . I am currently waiting for hysteroscopy/biopsy under GA and have been waiting weeks to have it done and then the nightmare wait for results ,all the time fearing the worst.I
have had the prospect of cancer over me now for 3 months and mentally suffering (never have before)Like others have said listen to the expert advice and ask all the questions you need to. Sending you big hugs

[jaypo]

Pre cancerous doesn't mean you HAVE cancer,it just means they are being cautious as these cells COULD turn cancerous if not treated,I know how terrifying it is for you but they seem to have caught it before anything nasty happens ❣️❣️

[Nas]

Hi Tashton
I agree with jaypo, that pre cancerous is just that; not a cancer.

It’s good that they are on the ball as I feel from experience, that it is one aspect of the NHS, where for many people, things do move along quickly
( Northerngirl, hang on in there, it’s so unfair they are making you wait I know  )

It would have been better to have that conversation with you face to face, but at least you have been informed quickly.

Our brains go into massive overdrive when we hear the word “ cancer” but remember, this is precautionary.

Many ladies on here, have had a total hysterectomy ( myself included) so when the time comes, feel free to ask any questions or raise any worries.

Best wishes
Xxx🌸🌸

[Tashton]

This is why I'm.confused.  He said precancer cells but then said... We say it's cancer? So I'm assuming they can tell it is? 

[Penguin]

This is why I'm.confused.  He said precancer cells but then said... We say it's cancer? So I'm assuming they can tell it is?

Perhaps they just mean they treat it as though it is cancer and remove it for that reason. Hence justifying the hysterectomy. If he definitely said pre cancer then it hasn't developed yet. Is there someone you can phone and ask that specific question to given it's going over and over in your mind?

[Donna-paul]

I’ve gone through exactly what you will be going through. The surgeon are normally cancer gynaecologist and you are under the cancer team. When I went for my appointment there was 2 nurses and the surgeon. My letter had said bring someone with me so I googled the surgeon and I was more prepared but still shocked. I had atypical hyperplasia cancer cells and early stages of womb cancer. I had a mri scan to make sure it hadn’t spread. I then had total hysterectomy really quickly. My surgeon told me until they go in they don’t know really what they might find and also it’s all gone to pathology. I think they have to prepare you and you can ring the nurses anytime if you have questions. Also they come around to see you and be there for you after surgery. I can’t fault the care I received and glad it’s all gone and I was given the all clear. I think some Drs call it early stages of womb cancer. Good luck x

[Summer-sky]

Hi Tashton,
I hope you are doing ok.  Hard way to receive news like this over the phone but I hope things are moving forward for you and you have seen the consultant and getting a clearer picture and plan in place.  All best to you x

[Bindi]

If your worried hun ring them and ask questions..if they can give requests over the phone you can ask questions hun

[KaraShannon]

This might help a bit.  As I understand it, hyperplasia is thickening of cells.  Then you have ordinary thickening and then atypical thickening, atypical meaning not typical in general terms.  Where there's atypical thickening in any hyperplasia I think they always want tissue removed because that atypia may become malignant.  I don't know as I'm typing if it all becomes malignant or whether there's just a much higher risk of it doing so.  I think (but I'm not sure) that it is not cancer, but a higher risk (than they are willing to leave be) of it becoming that way.  I hope that helps and maybe someone else can clarify.

[KaraShannon]

This is why I'm.confused.  He said precancer cells but then said... We say it's cancer? So I'm assuming they can tell it is?

Having done a little reading around I'm picking up that endometrial atypical hyperplasia is not cancer, but there are many reasons for them to begin treating it as if it is.  Those are because the atypical cells are no longer 'typical,' and there might be other cells that have changed beyond that but they just didn't detect those, so they have to err on the side of caution. The stats suggest in most cases this hasn't happened but the risk is high enough that they have to treat as if cancer, to get rid of those risky cells.

Here for you, hoping soon treatment will be done and you can relax, with all this behind you