New diagnosis Grade 1, currently unknown stage!

Hi, I got diagnosed last March with precancerous cells and I thought the polyps had been removed, however when I went on 6 Feb I was told they removed them then and were happy as they were smooth and didn't look as though they had changed in size.  They also took biopsy from womb but everything looked ok.  Was told I could stop taking Provera as I had discovered it could cause blood clots which was a cause of concern for me as I am housebound disabled with mobility issues.  Was feeling positive however fortnight later got the call from the consultant advising they had found cancerous cells.  They though about inserting coil instead of hysterectormy at this stage, but Yet to see the Specialist to decide on treatment plan and they have just postponed from 27 March to 24th April - nearly 3 months after the biopsy.   The uncertainty and time delay is doing nothing for my anxiety levels.

Like you I am a bit angry as had been complaining of erratic and heavy bleeds before my periods stopped 3 years ago but GP just put down to menopause.  Got no support whatsover.  Have fibromyalgia and getting a smear was a problem and GP practice  just told me to come back when I was more mobile.  Now I'm concerned opportunities have been missed and cancer could have spread.

• Hi, thanks for sharing. It does sound like you've been dealt a lousy hand. I think some GPs try to weed out patients that take up too much of their time/money. I think some discriminate against the elderly and disabled especially. I personally can't complain about mine anymore, but it took me threatening the surgery with  medical negligence against my husband for them to take proper notice. They changed the appointment format during covid which made it difficult for my husband to get one. I make full use of the on line messenger service on the NHS app. If anything they do causes me anxiety. I message them. 
• Hope your issues are resolved and you get the right treatment xx

It certainly seems you've been dealt a raw deal. Hope everything turns out OK xx

Hi,

I am 56 years old and after insisting my gp refer me to Gynaecologist as my late Mum died of ovarian cancer at 66, after her gp kept fobbing her off.  I was on waiting list for 9 months before finally seeing female gynaecologist in November 2022.  Explained I had peri-menopausal symptoms for the past 2 years along with last few months of constant bleeding.  She referred me and had Hysteroscopy in Dec 22 and was diagnosed with pre-cancerous cells and fibroids in my uterus.  Had follow up in Jan and was told I had cancer of uterus Grade 1a.  Had full hysterectomy in Feb 23 and waiting to have follow up appointment with Surgeon to see if I need radiotherapy.  Thank goodness I insisted referral from my gp or I could be walking around with cancer, oblivious of the fact!

Thank you for sharing. I'm glad to learn you got sorted. There seems to be a short fall in dealing with women of a certain age in my opinion since symptoms can be the same as menopause or perimenopausal.

The MacMillian nurse that sat in with my consultant gynaecologist seemed fairly confident that a grade 1, stage 1 diagnosis would be nothing more than a need for a hysterectomy with no follow on. I've had an MRI today to determine which stage my grade 1is at.....fingers crossed you've no further treatment needed. Xx

Thanks for your reply.  I really had to push my GP to refer me to see gynaecologist.  I was told that there were plenty of gp's within the practice that could advise me on menopause matters.  However, I had to explain more than once that my Mother got fobbed off by her gp when she was 65 and consequently got Ovarian Cancer and died at 66, because her current gp refused to refer her!!!  And the type of cancer she had could be inherited, which is why I wasn't taking no for an answer and put the phone down on one gp who refused to refer me.  Thank goodness I pushed for it and first gynaecologist I saw (male) recommended "no further treatment"...I then went back to my gp and asked for a female gynaecologist, as he obviously wasn't listening to what I said or my worries taking into account my Mother's history.  It was only after I saw the female gynaecologist, that she referred me to have Hysteroscopy, which is when the cancer cells in my uterus were discovered.  Can you imagine if I had agreed to 1st gynaecologists course of action?  I could have been walking around with cancer and not know and the outcome could have been very different!!!

I was told by my Cancer Nurse that a Grade 1 is either a or b, depending on how far the cells were growing in your uterus.  Luckily I was a grade 1a and a full hysterectomy inc ovaries was recommended, followed up by Radiotherapy, if needed.  I also had an MRI and CT Scan.  My uterus was sent off for tests, following my hysterectomy and I have follow up appointment with my surgeon on 21st of April, so will see what the results are then.  

Hi GinsengJenny, just to explain that there are types, grades and stages with endometrial cancer. It’s the stage that may have a number with an a or b, not the grade. It can be quite confusing with all the different things! Here’s a Macmillan link that explains it better than me: www.macmillan.org.uk/.../womb-cancer-stages

That's not how my gynaecologist explained it. He definitely said Grade 1 and wrote it down on not just my handwritten consultation sheet but on my copy of the GP letter. The MacMillian nurse also repeated it when she took me to another room to explain their services and to reiterate that the MRI would hopefully determine what stage it was at. It's also a type 1 grade 1 (slow growing). It's also written in my MacMillian books the nurse gave me, Understanding womb cancer, page 31 xx

Bobcat, to clarify, yes it’s graded with numbers, eg Grade 1, Grade 2 , Grade 3.  It’s the staging that can have a letter too. Mine was Grade 1, predicted Stage 1a but revised to a 2 post op. Are you saying your grade had a letter as well as the number? I’ve looked at the Macmillan booklet and can’t see that it says differently from what I said.

I understand what you mean. I think I misread your first message.