This feels weird

Hi BallyBee,

I don't think you are a weirdo, as I reacted just the same. When I first went to the doctor because of a bleed he said he thought it was cancer and put his arm around me, and said he was sorry. I was thinking 'Well, lets get the tests to confirm it, then worry!' I didn't feel ill, or any different. I now realise that I am much better without the womb. I don't need to get up in the night anymore for the loo, and I used to get sciatica, which I haven't had since the operation 2 years ago.

The only time I have cried was on my way home from hospital. My tummy hurt and hubby started arguing with someone who cut him up driving. I just couldn't take it and just wanted to get home and lie still!

Maybe you feel like you do because you have recently brushed with cancer. I know that affected me. I also knew roughly what to expect having nursed both husband and daughter through cancer treatment. I felt 'Oh well, my turn now'. As it turned out I only needed a hysterectomy.

It sounds as if you are very early stage, and with grade 1 that's good as it will be slow growing. We are a friendly bunch on here, so any questions, fire away!  xxxxxx

Hello BallyBee and  Good morning and  welcome to the group. No one wants to be a member but it really is a good place to come . You will get lots of great support from everyone here...and NO , you are definitely not alone in how you feel at he moment.! 

I'm so sorry to hear that you have just suffered the sad loss of your parents. 

It's quite a normal reaction to feel numb and disbelieving  when you first get your diagnosis. I was the same. I kept having to remind myself I had cancer. The feeling that it was happening to someone else not you is one I remember well.  I too wanted to tell everyone it was ok , I was fine, cos that was how I felt. I think everyone seemed to be more upset than me at that point.

Your cancer is a low grade and that's good. It means it's probably relatively slow growing and less prone to spread quickly so that's good news.  They won't really tell you the stage (the system that describes how far the tumour has grown or spread ) yet as they cannot fully do that until they look inside at the op and have your removed womb and removed tissues examined at the path lab. Sometimes people get a scan before their op to check for spread but it's not done in all cases ( I didn't have one) I found out my stage  when the lab reported to my surgeon and it had been discussed in the MDT ( multi disciplinary team meeting) a couple of weeks after my op. It was stage 1a which was good news , meaning my cancer was contained in the uterus and I had the best prognosis for a cure. (I had been having symptoms on and off for a long time). 

My hysterectomy was much better than I'd imagined and I recovered  relatively  quickly as I had keyhole surgery. 

You are entering a phase where you are in limbo waiting for your treatment to happen and it can be quite worrying and stressful. Once things get going it's easier to focus and feel you're more engaged with your care. You will have a clinical nurse specialist as a contact and I found her useful to contact when my questions emerged after my numb phase and needed  someone to answer them. We're not medically trained here but there is a wealth of knowledge experience and compassion here too if you need a friendly ear.   Hugs from Nan

Good morning, BaileyBee.  Your post really resonated with me because apart from some anxiety whilst waiting for my initial biopsy results and then the histology report after my hysterectomy, I have felt weirdly unaffected emotionally by my cancer diagnosis (and I didn't feel at all ill beforehand, nor have I experienced a lot of the problems during recovery that I read about from the lovely ladies here).

Something was found in my initial internal ultrasound examination by a gynaecologist which she said could either be a polyp or a tumour, and my womb lining was found to be very much thicker than normal for a postmenopausal woman my age (63) at 17mm.  She wrote "indicative of adenocarcinoma" on the report of my consultation (I'm in Spain and a written report is always given to the patient after any consultation or operation, whether with a GP or specialist).  So I had an indication from the start that it would be cancer, but the gynaecologist did stress that this was a "good" type of cancer to have as it is one of the least aggressive and I would most likely not need any further treatment other than a hysterectomy.  The initial biopsy confirmed the diagnosis of adenocarcinoma, Grade 1 and a subsequent MRI scan showed it was stage 1a although the doctors do not confirm the staging until the hysterectomy has been carried out and samples of all the tissue remove biopsied.  My initial diagnosis was in mid September and I had my hysterectomy on 24 October by key hole surgery, only spending one night in hospital.  I I went for my post-op check up last Thursday and received the very welcome news that the staging had been confirmed at 1a (the cancer had not spread anywhere and the tumour had penetrated less than 50% of the womb lining) meaning that I would not need further treatment.  I will just have six-monthly check-ups for the next two years.

I put my emotional "numbness" (and everybody said you seem remarkably calm about all this) down to the fact that my sister had been killed in an accident whilst on holiday in late June and I had to be involved in trying to support her family throughout the tortuous processes of gettng her body repatriated and legal proceedings instituted against the driver who knocked her down on a zebra crossing.  Having to sort through the bag of bloodstained, urine soaked clothes which the hospital staff had cut off her to find her wedding and engagement frings is something that will haunt me forever.  I felt so devastated and emotionally exhausted by all that that I surmised that I just had no capacity left to feel grief or fear about my cancer diagnosis.  I did wonder if it was just being buried and it would all hit me with a vengeance after I'd had my op, but so far it has not.

Plus it was only 15 months since I'd had open heart surgery and had to cope with the recovery from that.

So I tend to think the fact that the bereavements you have suffered probably do account for the fact that you can't feel what you  thin you are "supposed" to feel about your own situation.

Just take care of yourself, try to keep doing all the things you normally do (with some extra treats, you certainly deserve them after all you have been through)..I really hope you get a favourable outcome, the odds are in your favour from what you have been told so far.

Hi Ballybee,

Your post describes exactly how I have felt about it too, so you are not alone feeling this way.

Sorry about your mum and dad. I hope with each others support you and your hubby will still be able to have a lovely Christmas,  with good memories to talk about.

The stage is 1A if only in the womb lining, 1B if it's gone through into the wall of the womb,  and other grades if there is anything elsewhere. Sounds like they think you are 1A , possibly 1B, both of which are early. Grade 1 is the lowest grade, slow growing. So, fingers crossed for good news for you.

Frustrating that they did not get your diagnosis right initially,  but if it's any comfort, I had exactly those symptoms as part of my menopause, which was 9 years before I developed cancer. So it might be, that it was your menopause,  but investigating it made them spot your cancer really early. 

Friend of mine had a hysterectomy for heavy periods, and they only found the cancer when they did the post op inspection of her womb, by which time the hysterectomy was all the treatment  she needed anyway.

Hope you have an uneventful and quick journey through this x

Your story sounds very similar to mine - symptoms sounding like menopause etc. I had my hysteroscopy 4 weeks ago but they were unable to see anything as there was too much blood there but they took a biopsy. The consultant who performed the hysteroscopy said to me " I don't think you've got cancer" which of course was amazing news to me. However I was called in to see a different consultant two weeks after that and told that I had stage 3 endometrial cancer. Devastated isn't the word.

However, I do feel in denial, because apart from still bleeding, I am feeling fine. I was put on Norethisterone to stop the bleeding but they made me feel really ill so I stopped them.

It must be so awful for you and your partner having to deal with your bereavements and now your diagnosis. I think it's good for you to be in this 'emotionless' state as you have other things to get emotional over. 

As we are largely powerless once we get this diagnosis I think detachment is an ideal state of mind to have. I wish I could achieve it!

Hope to keep in touch here, and I wish you well over the next few difficult weeks.

Pippa x

Hi NannyAnny

thanks for replying and it’s good to know you reacted the same. It’s good to know you are much better without your womb re getting up in the night for the loo. That’s something I have noticed recently  and again put down to age. Thing is the urge is so intense that I’ve  had to buy Tena pads cause it just comes away and I can’t hold it in, nightmare!

Sorry to learn about your husband and daughter and I hope they are both well

xxx

Hi NorthernNana

Thanks very much for replying and for all the information contained in your post, it’s really helpful and good to know you also felt like me

xxx

Hi Free at last

thanks very much for replying, and that’s fantastic news that you don’t need further treatment, it must be such a relief for you and your family. Your reply really makes sense to me.

I am really sorry to read about your sister, how absolutely devastating, I can’t imagine how you got through that. Grief is funny isn’t it, I was absolutely devastated when my Mum died but it never really hit me until over a year later when I had to sell the family home. Then I totally lost it!

I hope it doesn’t hit you with a vengeance in the future, Talking to a professional has helped me and I’ve tried not to keep feelings buried inside me now with my Dads passing.

Xxx

Hi Mrs Woodentop

thanks very much for replying and it’s good to know you felt the same.

Only a few weeks ago I thought I didn’t really want to do anything over Christmas, however we have booked Christmas dinner out, our family and my sisters. I’ve also been to a couple of garden centre and bought some new bits and bobs for the tree. We always had Christmas Day at my parents house, they had a large enough dining room and there’s been years when we’ve all been and there’s been 16+ on Christmas Day. I know this is the start of a different Christmas Day for us but they wouldn’t want us to be unhappy.

Thanks for explaining the staging, let’s hope for 1a

xxx

Hi Pippa

Thanks very much for replying. I’m very sorry to read about your diagnosis and I’m positive you will get through this. This forum seems great for advice and support.

i had the same issue when I got my Transvaginal scan, they had to get one of those cardboard sick pans to catch the blood, Sorry gross, but the blood was so bad!

Yes I think detachment may be good, for a time, but I also think it’s good to open up and discuss and this may be a good place for me to do this. I will be sticking around

Do you know your treatment plan yet?

I am planning to go back to work next week to try and get some normality back before I have to go off for my operation. My boss is putting a support package in place to include things like working from home, flexible/shorter hours etc. I want to keep a phased return for after my op as I feel I will need it more then. The officer I sit beside was diagnosed with breast cancer on Friday, she won’t know her plan until a week tomorrow, but we will support each other.

take care 

xxx