please don’t tell me this is the worst thing you’ve ever come across

Hi Fridgelicker, I feel for you as you’ve already had quite a stressful time to get to this point. You’ve had the discomfort, pain and disappointment of the failed hysteroscopy attempt (which perhaps should have been abandoned sooner) and you’ve also had what I personally think was unnecessarily detailed and graphic descriptions. All of that could have waited till your results came back and been given to you in the context of the diagnosis. Sometimes surgeons can actually get quite invigorated and excited by their findings and I think they can get a bit carried away - not realising that being given too much detail can be to our detriment. I certainly wouldn’t have wanted to have had a detailed description of my polyp or my endometrium! As it was, all my surgeon said was that he’d removed the polyp, had got it all, would send it off to the lab and that I’d get my results in a couple of weeks. Hoping for you that you get your results soon.

Hi MarniteFan,

Thanks for your reply. You’re right about the unhelpful comments. I’m under the care of Worcestershire, and they have two gynaecologists, both of whom tend to say things they shouldn’t. When I had the   unsuccessful hysteroscopy, consultant number 1 informed me that she had never had these problems before, and it was the only time she hadn’t been able to do it because of all my  fibroids and polyps, which really worried me and make me feel a bit of a freak. Then she sent me a letter about the findings, listing a suspicious polyp..what the hell did that mean? I was in tears, phoning various people to get clarification. Then finally, after the successful hysteroscopy, consultant 2 popped in the ward and quickly went around her patients to say what she’d found, and told me - ‘Your uterus was enormous! The walls were very thick, and had a worrying texture, so I have to say they’re probably cancerous, ok?’

Now I have to wait for the results, and my daughter is inconsolable. I’m a single parent with no family and a 23 year old daughter and a 27 year old son with autism, both live with me

Hi Fridgelicker and a warm welcome to this group of wonderfully supportive ladies.  I hope you don't have to wait long for your biopsy results, for me it's the waiting that is the worst part.  I too am a divorced single parent to one Daughter who is 28 its a very stressful time. I had my hysterectomy on the 5th August and am waiting for my histology and final staging results,  it seems we are always waiting for something xx

Yes it certainly feels like it! I’ve also got a lump on my breast and I’m booked in to the Breast Clinic at Worcs on 30th Aug. I’m PRAYING it’s going to be ok because I don’t know how on Earth my daughter and son will cope with even more 

Hi again Fridgelicker, there’s actually quite a substantial failure rate in hysteroscopies, especially amongst post-menopausal women, because the cervix tends to narrow/close up, and it’s thoroughly unhelpful of her to make it sound like it was your body’s “fault” that it didn’t work the first time for her. What she told you afterwards was an awful way of putting it across and it sounds like she needs to go on a bedside manner and basic empathy course. To say all those things without the opportunity for support, and leaving you hanging and wondering and worrying, is atrocious, Once this is all sorted, it might be an idea to send some feedback to the health trust. When you get your results, you should be given the contact details of your CNS (cancer nurse specialist) team - if not, ask for the number - and you should find them much more helpful and supportive. I phoned mine A LOT! They quickly learned to recognise my name! IF it is cancer that has been found, they may give you an idea of the type and grade, then the next step is usually to have a preliminary staging scan (either MRI or CT, sometimes both) and perhaps a chest x Ray. When the results of those come through, the next thing is a pre-assessment and then the op. There’s a lot of waiting. 

if you need any support in the meantime, there’s always someone around on here, plus the people on the Macmillan helpline are lovely and they’re open 7 days a week 8am-8pm 

Thank you MarmiteFan for your help, I feel a bit better about it all now- I’m not a particularly sensitive individual, but I’m feeling vulnerable at the moment and like you say, the consultants haven’t helped.

Just to say that if your daughter thinks she herself needs support, the Macmillian helpline would help her too. Apart from anything else, putting it bluntly, your own ability to deal with this well will be affected by how those close to you cope with it. You have enough on your plate already without having to worry about how other adults in your life are feeling about it. So, I appreciate that she’s your child, and you feel responsible for her, but actually she’s an adult and is herself responsible for how she copes, and it would help you if she wasn’t falling to bits over it, and was getting help herself. Worrying about how others are coping can take away from how well we ourselves cope. How is your son about it?

Hi Fridgelicker - I also fall under Worcestershire ....are you under the Alex @ Redditch by any chance ?  When I went for my hysteroscopy my cervix had closed up but they did inject me to numb the area before proceeding any further, and did manage to get a biopsy although that bit was quite painful.  The doctor who performed it had to drain about 50ml of fluid/blood from my uterus and I couldn't get a straight answer about whether she thought it was cancerous or not.  In fact I had a letter about 3 weeks later saying that there was no irregularities in the womb despite me having a cancer diagnosis 2 weeks before the letter arrived.

Waiting for results is an extremely worrying time as it's the not knowing ....I was in your position in April and are now 7 weeks post surgery.  You are definitely not alone as lots of ladies on here have been in the same position and totally understand how you are feeling.

What I have found during my treatment is that some of the consultants are not very "patient friendly" and I have received more understanding and patient care from my CNS.  If you do get confirmation of a cancer diagnosis then you will be allocated a CNS....they are brilliant ...in fact I had 2 as my surgery had to be done at Coventry, but I'm back at my local hospital now.  The day after I was diagnosed I was feeling really low as I felt there was no hope, but my CNS phoned me and explained that the cells were grade 1 and slow growing which the Dr hadn't explained to me at all...just said I had cancer and I needed an MRI and hysterectomy.

Anyway I hope you get your results soon and that it is good news. Keep us posted on how you get on.

Hi MarmiteFan, yes, Kate is an adult, with a job and a car, but she’s only just 23 and very close to me and tells me everything. Her father is just crap, so if anything happens to me it will be like being an orphan (neither me or my husband have any siblings, and all grandparents are dead) and she will have to look after William too. I don’t think I’d have been up to all of this when I was 23. As to how William is taking it, as well as his autism which is moderate, he has a separate and profound communication disorder - this means that although he brings me a cup of tea in bed every morning, washes up, does his own washing, and is generally bloody great, he cannot understand complicated words and sentences. When I have tried to explain to him, he gets really upset ‘oh oh! Mums only joking, she’s ok’ and rubs my tummy. He also tends to talk about stuff with strangers, so if I start explaining my problems in detail, he will be randomly announcing my details to people while we are out and about, 

Hi Ejax, thanks for your message, yes I am under the Alex. Love the nurses, not so keen on the two consultants who just come out with really worrying comments without spending the time to explain what they mean. I’m new to all of this, and quite frankly the things that have been said to me by these two women are just awful. I’m so pleased for you that the cells were grade 1, but the consultant that did my hysteroscopy said my uterus was massively swollen, which suggests something really bloody bad - I say suggests because she just came out with that comment (Along with the warning that, sorry, it looked cancerous) while talking to me for about 2 minutes, on the ward after the operation. As if all of this wasn’t enough already, this week my breast felt a bit tender, and I found a breast lump which must be new because I do check, and I’ve been referred by my doctor  to Worcs Breast Clinic 30th Aug. Now I’m worrying that the cancer is so advanced it has spread to my breast.