Meeting the Gynae-Oncologist

Sorry for such a long message - yesterday I met with Gynae-Oncologist and specialist Nurse Practitioner to discuss what comes next for me.

The multi-disciplinary team didn’t receive my MRI in time to review it at their last Monday meeting as planned so they will look at it next week (it was always quite an ambitious timetable). Your man took a very quick look at it while I was sitting there and said he could see something in the cervix which could be another tumour (already had one removed in the LLETZ) but he would ask the Radiological Consultant to review the whole film and they will call me on Tuesday to give me the result. Not ideal, but fair enough I think.

The MRI also revealed a fairly large ovarian cyst so they are now testing to check that isn’t anything too sinister. I’ve been having heavier and more painful periods for a while, but I initially thought that was just the runup to the menopause. Since all this started I’ve been having more pronounced abdominal pain and although I know that isn’t a symptom of CC, I was a bit worried that it might indicate that the cancer had spread.

Now that I know I have an actual cyst, a number of things have fallen into place, particularly the fatigue and feeing of ‘unwellness’ that prompted me to go for blood tests in the first place. My cancer was detected because I caught up with my overdue smear as a bit of an afterthought while I was seeing the practice nurse to have the blood taken. I suppose I should be grateful to that cyst…

Anyway, they got out the big book and chose December 4th for my radical hysterectomy. Apparently they will remove my abdominal lymph nodes first and send them for a ‘frozen section’ to see if there are any cancer cells in them while I wait spark out on the slab. The specialist nurse says the lab can do the biopsy in about an hour while the surgical team wait - amazing isn’t it?

If they find any cancer in the lymph notes they’ll abort the surgey and I’ll have a course of radio and chemotherapy instead. (Hoping that doesn’t end up being the case).

Assuming the lymph nodes are clear they’ll crack on and do the surgery. The G-O said he always tries to do it as keyhole surgery but that he’ll do it the old fashioned way (let’s call it the ‘letterbox’) if that doesn’t work. He was a bit abrupt but not unfriendly and he did say I could call him and leave a message if I thought of any questions and he would call me back. I was quite impressed by that although I don’t think I’ll be ringing him any time soon.

One thing I wasn’t expecting (although maybe I should have) was that he would want to give me an internal examination. It was quite unpleasant as he did that ‘palpating’ thing with his hands where they press down firmly on your abdomen while pushing out from your vagina. Wasn’t expecting to have quite so much of a man’s hand inside me 4 weeks after my LLETZ. I was also very conscious that my husband was in the room on the other side of the curtain and I did let out an involuntary ‘ouch’ a couple of times. At least he apologised for hurting me and it was all quite quickly and effiiciently done.

So just a little over 3 weeks until the surgery. That means that the time from when I went for my smear to having a rad hysterectomy will be 8 and a half weeks - is that a record? Good job I bought a whole bunch of comfy ‘post-op pyjamas’ earlier this week…

Hi Rosehip
My goodness you are well informed about what is going to happen to you during your op!! All i know bout mine is hysterectomy and ovaries removed! Maybe i was told more but i havn’t taken it in! Ihave to go for pre clerking on 21 nov maybe will find out more then.
I know what you mean about lists…lol
And pjs… treated myself to a few pairs too …a girl has gotta feel gud!
Hope your MRI result on Tues is all as good as you expect it to be and you can bash on and get your op and on the road to recovery :slight_smile:
Kathx

Ladies -, PJs, snuggly slippers, lots of magazines and feel good tracks on your mp3/ipod oh and comfy pants - no cheesewires at this stage!!
Will keep following you ladies - even though I’m finding it hard (site navigation lol)!!!

xx

Well its a university hospital so they are used to teaching - and I do like to understand what’s going on so I took notes and asked questions, some of which I noted down before I went into the appointment. I expect they thought I was a bit of a swot!

Haha! My cheesewire days are well behind me (if you’ll excuse the pun).

I did acually buy a multipack of the most enormous pants when I went on my little shopping spree - nothing like a nice pair of ‘armpit stranglers’ to keep your kidneys warm. Gives you somewhere to keep your humbugs too :slight_smile:

oohh girlies you are amusing me with your humour in all this adversity !!
andrea hope you ok after your appt xx
rosehip your usual humour shines through xx
i bought specially big knickers(usually a cheesewire fan) specially for the nappies needed post lletz. Hve soon become redundant! lol
One embaressing dumb question i need to ask? Do i need those nappies again post hysterectomy?
May be a silly question considering i am being sliced open but just need to be prepared wot to take to hospital!
Best wishes to all
Kath x

Ooh, that’s a good point - didn’t ask that in all my questions, but I think the answer is yes, from what other women have said.

As I may have mentioned before, I’m 6ft tall and not thin - the regular kind of pads are too short and narrow for me (if they have them at the hospital it’ll be just my luck that they won’t have the kind that work for me) so I’ll make sure I put some of my supersized pads in my bag when I go, just in case.

Keep asking those questions Kath - there’s no such thing as a silly one! x

Kath - I was just reading the Macmillan page on hysterectomy as part of cancer treatment. It’s very clear and includes things like what to expect afterwards. If you want to understand a bit more about your surgery or at least identify quetsions you would like to ask it might be worth having a look. x

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Surgery/Hysterectomy.aspx

Hello
Yes I’m afraid to having the big pants and pads on standby! Not sure how common this is but I had lymph fluid draining for a week or two after my op and my bladder wasn’t 100% straight after either. So plenty of accidents but back to normal within 2-3 weeks :o)
A few other bits to remember for hospital: squash, lip salve, peppermint tea/oil (for post op wind!), wipes, snacks (awful food in hospital!) and magazines.
Best wishes
Kirsty x

Thanks for those suggestions Kirsty, sound v sensible to me. Looks like I need to write another new list…

I’ve also been thinkng about recovery and my furniture at home - I just have two low squashy couches in the living room and getting up from them is a bit of an effort at the best of times. However, my friend’s boyfriend is a serious gamer and he says he has a ‘spare’ LazyBoy recliner he can lend me for a few weeks. If I’m as ‘accident prone’ as you were afer the op, at least his chair is covered in easy to wipe down black leather!

Hi
That made me laugh!!! Don’t worry any accidents were all covered by my pads/underwear so hopefully you won’t need the leather chair :slight_smile:
I think I had a UTI after surgery which possibly didn’t help, my bladder + the lymph fluid drainage made it difficult to know what was going on. Not everyone is the same, but I would be prepared just in case. I called my oncology nurse after the op because I was a bit freaked by all the fluid, they didn’t warn me in advance so may be it’s not that common!!! Certainly the nurse had never had that particular query before and had to ask the surgeon…
You might find the squashy chairs comfy to sit in but may need to find an alternative way of getting in and out!
I was up and around quite quickly after the op so you will be fine. My surgery was keyhole like yours and and way better than I thought. Sounds like you have a great mental attitude and you’ll get through this amazingly!
Best wishes
Kirsty xxx

Hi girls,

Cannot comment on hysterectomy but I had lymph nodes removed. I found that my tummy swelled up quite a lot a couple of days after surgery (was fine in hosp) and I couldn’t even wear the lovely cosy pyjamas as the waist bsnd was right on my wounds. Have a big tee shirt or granny nightie on hand in case this happens to you. I also had to send hubby out for knickers a size up from my usual! Go for low rise minis - cover what you need to but don’t have a waist band on your tummy wounds!
Rosehip, if your sofa is low, take your friend up on the offer of lazy boy, you don’t realise how much you use your tummy muscles until you can’t!
I couldn’t sleep in hospital so my iPhone, book etc came in handy. Wipes for freshening up when you’re stuck in bed are great too.
It’s really not that bad, and amazing how quick you recover. Wishing you the best of luck, Lisa x x

Hi
Lisa is right about the stomach swelling, it’s amazing what I’ve already forgotten! My stomach was HUGE pretty much straight after surgery. I had invested in lots of granny nighties, baggy tracksuit bottoms, long tops and leggings for hospital and recovery. You will need clothing that is high or low cut to avoid the sore areas. Nighties are also best for hospital if you have a catheter in. Be warned I nearly cried when I had to put on my pants in hospital I’d taken my biggest baggiest pants and they were still too tight :frowning: The swelling took a couple of weeks to properly start going down but back to normal now (although bigger than I’d like but that’s because I’m greedy!).
Make sure you have help the first few days at home. I was good for shuffling around the house but struggled with silly things like getting over the edge of the bath to have a shower, putting on socks/shoes, picking up dropped items off the floor. You will adapt but nice to have a friendly face with you too. I was a bit emotional after the op so was glad of the company and it stopped me thinking too much although a bit of space on occasion was nice too.
I wasn’t in a lot of pain after the op, but did stock up on painkillers at home (ibuprofen and paracetamol) which I used as needed. Ensure you have lots of vases handy too. I had no fewer than 10 bunches of flowers which were lovely but gave me hayfever. Sneezing after a hysterectomy is not good!!!
I recorded lots of my favourite TV programmes to watch at home and used Iplayer quite a bit. Watching good telly, snuggled up on the sofa and eating the masses of chocolates I’d been given while recovering was a real treat :slight_smile: I bought and was given books but still haven’t touched them for some reason my concentration span wasn’t and still isn’t great. Mainly magazines, repetitive games on my phone and telly kept me occupied but everyone is different.
The surgery really isn’t that bad and you’ll be just fine. Lots of people here can advise and support you…
Best wishes
Kirsty xx