Hysterectomies - it's gotta be done but over here for hand holding PART 3

[LackaDAISYcal]

New Thread...
Over here for the hand holding

One in five women in the uk will have to have a hysterectomy at some point in their lives

Come and join us if you are waiting, pre-op, bleery eyed on the ward or recovering afterwards or just need a bit of advice.

[flouncymcflouncerson]

Good luck ginge

[LackaDAISYcal]

from what I've read flouncy, the ovaries are an important endocrine organ and continue to produce certain hormones such as testosterone long, long after menopause that provide protection against heart disease. The testosterone also helps with sex drive. The argument that is holding most sway with me though is that I am much more likely to die of heart disease than ovarian cancer so I should hang onto my ovaries if at all possible to provide that protection.

However, everything I read seems to relate to benign disease, and although my cancer is probably low grade/stage, and unlikely to spread, it is still cancer.

I'm soooo confused. The MDT suggested leaving the ovaries initially, it it's just this consultant who wants to remove them. I may ask for a second opinion and speak to my gynae who did the original hysteroscopy and see what she thinks.

[LackaDAISYcal]

Good luck ginge, hope it goes well x

[marymoocow]

good luck ginger. Not long now. Remember your notes

[marymoocow]

ginge stupid auto correct

[gingeme]

Well she wants to do a biopsy in 2-3 weeks time to make sure nothing else is going on. Two steps forward, three steps back spring to mind

[thenightisyoung]

Sorry everyone I am really not up to date on this thread but I really wanted to post for daisy. I had the same cancer as you diagnosed about three years ago. Like you it was limited to a polyp and following a hysterectomy they found it had not spread to the uterus so I haven't had to have any further treatment. I was 46 when I was diagnosed and for what it's worth I did have my ovaries removed. It was recommended by my consultant but I was also influenced by my sister being diagnosed with breast cancer at the same time.

I have not had HRT but I do make sure I exercise regularly and eating plenty of veg and trying to keep sugar and fat levels fairly low (it didn't stop me being diagnosed with bowel cancer 6 months later though but I was told that was completely unrelated - just lucky I guess .

It's a tough decision for you and I can't give you any advice. I haven't really suffered many ill effects from surgical menopause but I know that it is a very individual thing. However I am sure that whatever decision you make it will be the right one for you.

Btw, be very careful with google, it is a very rare cancer and you can get some odd results coming back - I read a medical paper with a really dire prognosis but when I went back to it two years later (yes it took that long for me to get over reading it!) I discovered on a more thorough reading that it was a different type of cancer but it sounded similar!!

Apologies everyone for the long post, I just hope daisy doesn't feel quite so alone

[LackaDAISYcal]

Thanks Thenightisyoung fopr sharing your story It's nice to meet someone with the same thing though as it is quite rare!

I know google makes it look frightening, as it all says aggressive, aggressive, aggressive, but I am assured by my consultant's "your cancer is very indolent and well behaved"

I've been trying to look for info on adenosarcoma and leaving ovaries, but it all points to ovarian adenosarcoma, which is a different beast altogether!

I'm leaning towards keeping them at the moment; I am a hormoanl wreck at the best of times, and a short sharp menopause might just tip me over the edge

Can I just ask though? How did you feel when there was no uterine involvement? My biggest fear is that they do the hysterectomy, there is nothing in the uterus, and I then feel (for want of a better word) cheated

[LackaDAISYcal]

Aw ginge, I was hoping you would have had a date

thenight, sorry about your bowel cancer. Are you coming through that OK?

[gingeme]

Me too Daisy

[thenightisyoung]

daisy I have to say that I felt more relieved than cheated when I found out there was nothing in the uterus. Also my consultant said the one thing they do know about these tumours is that they can recur locally so i suppose removing the main place that they can recur felt a bit of a relief. The polyp had caused a lot of bleeding for me and quite nasty painful periods so I was extremely anaemic and really feeling rather unwell by the time I had my operation so the hysterectomy actually made me feel a lot better. I really didn't feel any sense of loss.

I'm just over two years past the operation for bowel cancer and still ok so far

[LackaDAISYcal]

Yes, I've had a horrible few years of bleeding etc, so from that POV I'll be glad not to have to worry about it any more.

The one thing I'm not sure about, is whether it can come back anywhere else in the pelvic cavity at a future date?

[thenightisyoung]

I'm don't think you can ever be certain about these things but I got the impression that this type of cancer tended to be localised around the uterus.

[thenightisyoung]

Hi to everyone else on this thread. I'm sorry I don't know all your back stories but the small amount that I've read really makes me feel for you. It's horrible waiting for operation dates / results and various other appointments.

It's a scary operation but I know I felt a whole lot better afterwards and I hope you do too x

[marymoocow]

I have a date for my pre assessment clinic - 16th May. I phoned the hospital as I wasn't sure if I should have my op date to be told I'm pencilled in for 21st may. Suddenly seems a lot more real

[LackaDAISYcal]

I hear youy mary...I'm actually counting it in days, not weeks though

It'll be here before you know it.

I talked to a female GP friend of mine today. She advised have the ovaries out and take HRT for the next seven years. When I suggested I was very low risk for ovarian cancer anyway, she replied, with no ovaries you are zero risk!

Is this just medics being over-cautious?

[TheOriginalNutcracker]

Hi all, can I join your gang ??

Have had the news today that i'm not having removal of endo and cysts in September as planned, but that I need extensive surgery asap, removal of everything, and possibly a colostomy bag too.

Don't know exactly when it's happening yet as I'm waiting for the team to meet and discuss my case again and then they are going to ring me.

All that seems to be in my head since my appointment is that I need new pj's

[notapizzaeater]

It's hard at first getting your head around it. I keep telling people and bursting into tears ...


I'm not getting pj's they might rub on the cut, I'm getting a couple of nightdresses (not owned anything like this since ds was born)

[TheOriginalNutcracker]

Oh blimey yeh, nightdresses would be better wouldn't they. I hate nightdresses.

I've not read through the thread yet so forgtive the questions, but are you all having keyhole surgery or the completely open kind (is there a word for that ?).

[LackaDAISYcal]

Hi nutcracker; it is hard to get your head round it. I went for a simple polyp removal and now have a uterine cancer and a hysterectomy to look forward to. I've also been warned that because of my previous 2 sections and laparoscopic gall bladder removal they may need to change to open surgey if there are too many adhesions/scar tissue, and that the risk of damage to my bowel and bladder is quite high

Open surgery is called laparotomy I think...

I'm going to buy some long t-shirt type nighties as I hate anything too long. I have a couple, but guess another couple wouldn't go amiss. also need big pants!

[TheOriginalNutcracker]

Oh, sorry to hear that Daisy. that must have been a shock.

I had no idea that my appointment today was even with an oncologist until he introduced himself. He then followed up with 'but i don't think you have cancer'.

My ca125 result is significantly high though, although he thinks the endo is causing that. He did an internal today and said that this, my scan results and blood test results make him think endo not cancer, but won't know until everything is tested after surgery.

I am dreading maybe having a colostomy. Can't get it out of my head.

[notapizzaeater]

They never mentioned colostomy ?

I'm having full open surgery -my growth is too big to come out any other way

I'm going to primark /Asda for my nightshirts, only need them for a few days/week I hope, I hate sleeping in anything .....

I've a scan booked on Thursday for some reason I thought it was ultrasound but reading stuff online it might be a ct scan ? Or MRI ? I'm private and he has the nhs ultrasound report but no pictures.

[TheOriginalNutcracker]

I think they are pretty sure that my endo is stuck to everything pizza, hence them mentioning the colosotomy bag.

I had an mri recently. They aren't too bad, just boring tbh lol

[notapizzaeater]

I will,ask as my growth is pushing on my stomach and bladder (it's causing me indigestion and anaemia which is how it was found). Doctor wanted a scan to make sure it wasn't anything sinister got a shock at the follow up appointment

[TheOriginalNutcracker]

Yeh def ask, although I think they would have mentioned it is it were a possibility.

I'm 35 btw.