I had been post menopausal for about 18months and in November last year I had experienced slight spotting , went to see my GP and she referred me to the hospital for a US Pelvis tranvaginal scan .Then I was referred to outpatient for an Hysteroscopy but they had difficulty accessing the cervix.They said that the cervix itself looked quite Polypoidal , biopsies were taken plus smear test (which all tested were taken , came back normal/clear ) . Scan did show that I have an Endometral thickness of 9mm, which is cystic and my ovaries were seen to be post menopausal . Then I received a letter to say that they would like me to attend another Hysterscopy but this time they wanted to do it under general anaesthetic ( because of the failure to get into the womb first time ) apparently 3 consultants attempted to enter the womb but unfortunately it was closed ( but they did manage to collect a few cells that at the neck of the womb and they also came back normal .)Didn’t see the consultant after I woke up .Went home and had to play the waiting game .2 weeks later got an appointment to see the consultant for results . She said that because they couldn’t get into the womb , she couldn’t rule out that it could be cancer .So she suggested the I should have a full hysterectomy . I was in shock when she told me ( my fiancé wasn’t allowed to come in with me due to covid , but they allowed the women who were attending the antenatal appointments to have there spouses with them )
My question is : if all my tested have all come back negative/normal ( even the cells at the neck of the womb) does it warrant them to do a full hysterectomy ? I haven’ seen any slight since the 17th November.
I asked the consultant if she couldn’t get into the neck of the womb, could she enter via the top of the womb by entering via the abdomen to take a biopsy and she said that she’s not willing to take the risk , just in case there are cancer cells . So the consultation ended with me refusing the hysterectomy, because all the tested have come back normal . I am booked in for another Hysteroscopy for 3 months to see if the thickness has increased .
Could anyone please give advice on any other tested that I can ask for to be done ? has anyone been offered any other scans such as MIR or PET scan as I haven’t been offered this yet .I am at a loss at the moment .
Hi and a warm welcome to our little corner of the community. A possibility of cancer diagnosis will bring many questions, lots of confusion and stress but I found being able to talk with other people who are on the same type of journey helped me a lot.
Any thickening of the uterus raises alarm bells so I was referred for a hysteroscopy which I had to have done under GA, (epidural actually) as the nurse couldn't get into my cervix which was stenosed. The surgeon doing the hysteroscopy said she couldn't see anything untoward (but she'd missed a 4cm tumour) but the biopsies had revealed some abnormal cells. At the time I was diagnosed stage 1A grade 1. I had a MRI and CT scan then I was referred for a hysterectomy. I had a TLH, BSO Omentectomy and a peritoneal wash. The histology regraded me to stage 1B, grade 3 serous (aggressive)and the peritoneal flush revealed some malignant cells. As a "belt and braces" to prevent recurrence I had 3 sessions of brachytherapy. So it pretty well proves that a smear test won't necessarily show up malignant cells. I had 6 lymph nodes removed, all negative and LVSI was clear.
All this came about because of light spotting a couple of days after my 67th birthday, nothing untoward before, no weight loss, pain, bloating nothing - but my bestie said you're post menopausal, get it checked, so glad I did. I had to attend all the tests and scans alone due to Covid.
You'll find all the ladies here hugely supportive, I don't know what I'd have done without them. Have another think about having the hysterectomy but argue strongly for a CT or MRI scan. Some of the ladies here have had one or the other, I had both.
When you have a minute, it would be helpful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time and if you're not sure what you should write have a quick look at mine by clicking on my username.
I found the Macmillan Guide Understanding Endometrial (Womb) Cancer booklet was invaluable in my journey - you can download it here Womb cancer booklet.
Sending you welcoming hugs, B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi MRS BJH , thank you for the lovely welcome
and for the reply . thank you for the information and sharing your journey story with me , i do really appreciate it . You have given me some information about other test i can ask to be done . I have arrange a telephone call for next month with a consultant and will ask if this test are available for me .thank you once again for the reply ( i don't feel so alone anymore ) xxx
Hi . Come back after you have your chat with the consultant. You certainly aren't alone, we've all already experienced the disbelief, anger, hysteria. If you've any questions in the meantime, there's always someone here.
Big hugs, B xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
