Help and advice please

i was at my appointment today to discuss treatment for stage 1a2. The consultant says the majority of the cancer was removed during lletz but not clear margins, what's left is microscopic. He says treatment is radical hysterectomy.

ive said i don't want this done and I said about a trachelectomy instead, 

so my issue is, do what my doctor wants to do, or ask for a trachelectomy, my issue with this is he said they don't do them in Scotland so I would need to travel to london to have this done, which I think this is a load of rubbish tbh!

I'm lying in my bed crying now, the doc is going to book the hysterectomy in for July but in the mean time I've to make this decision and have until my next appointment on the 20th.

im so upset and don't know what to do.

my reasons for not wanting the hysterectomy isn't for having children etc it's because I'm afraid of the changes that might happen to my body, I've read that it makes hips widen, rib cage to drop down onto hip bones, weight gain and many more. 

Thanks for reading

debbie 

 

 

Hi Hun,

ive recently had a radical hysterectomy (including ovaries) and lymph node removal on 30th May. i was surprised at how manageable the pain is/was. Before my treatment I have been following slimming world and have lost 3 and half stone in just under 12 months, so weight gain was a huge issue for me too.  Obviously my body is still swollen from the surgery but all in all, i havent suffered significant weight, as of yet. I've done loads of research on this and I think as long as you follow your healthy eating plan then weight gain shouldn't be an issue. I think this can become an issue when you are stuck at home, post treatment, and eat out of boredom....etc.  I was put on HRT yesterday and was assured by my GP that thus wouldn't affect weight gain...etc. The choice is yours Hun, I do hope you get the surgery you want!  Good luck xxxxx

Thanks kazza. Glad your recovering well, I've been following your journey x

im also following slimming world and have lost 2 1/2 stone and have just got my figure back after 13 years! and back down to a healthy 9st 10.

This is why I'm so paranoid about things. 

Hi hun I completely understand where you're coming from. I was so paranoid about putting on weight. Friends keep saying that's the least of your worries but until they know to hard it's been loosing all that weight in the first place they don't understand. All I will say is the choice is yours hun. I've been off work just over a week. It's so tempting to fall back into old habits of snacking on junk through boredom. Once I'm more mobile I'm looking forward to doing plenty of walking  before my hysterectomy I was in the gym everyday swimming 80 lengths or running 5 miles! I hate seeing myself as being lazy but this is part of the recovery process. As soon as I'm able I'm gunna be back in the gym. Xxxx

Oh Debbie,

 

 I am so sorry you feel that low. Where in Scotland are you? I have a great consultant who really put my mind at rest. 

 

 

Hi tigger im in Glenrothes fife

I am Stirlingshire. 

How are you feeling today?

Bit better today been keeping busy, I'm finding myself cleaning out cupboards, drawers etc 

im going out my mind trying to decide on treatment tho! Wish it was all a dream and I will wake up soon with no cancer!

Debz,

if if you want a trach then push for it. I'm going to have one and believe me they are leaving no stone unturned to check this is the right treatment for me. If at any stage they thought it would be a risk they would tell you. 

It it is incredibly specialist and they only do it in uk France canada sand america. If you go to London it'll be where I am under the same consultant as he's the only one that does it. I had heard from my consultant where I live that they do do it in Manchester as well. 

I read the history about how this charity was set up and one of Jos tips was to challenge or push for answers and the right treatment. So don't just think a hysterectomy is your only option. Your geography should not be a reason to not be referred at least. 

 

Good of luck and pm me if you have ANY questions. Xxx

I've just seen your reason is for wanting trach is not for kids. I was so outraged when I started reading your post i was so desperate to get my advice to you that I didn't read the last few lines!!

My consultant in London told me that he takes referrals for 'fertility saving treatment' and he sometimes has to travel abroad to operate so if you do not want any children or any more children then this may be a reason not to refer you.

xxx

Hi Debz33, I had a hysterectomy in Nov. I was 1b1. The op wasnt too bad. I have never heard about the hips widening or rib cage dropping, I probably would be feeling the same as you. None of that has happened to me. I am on hrt, went in it straight away as I have 2 teens and didn't want to turn in to a crazy lady! I have put on about 5lbs but I think I was too slow moving after my op. and I ate way too much and am still stuffing. I think if you have the will power to have lost your weight you will be strong and not over eat. when i Get frustrated I tell myself it was/will be worth it to have (hopefully)that crap out of my body! 

Good luck with your decision x

Hi - I had a trach in London in April. However did lots of reading up about it and seems they also do these in Leeds, Gateshead and Manchester.

It is advised for women who would like to preserve fertility options in the future, which is why they may have said no originally. 

Push for a second opinion if you aren't happy, as the ladies  say here it's your body! And geography should not limit you! 

 

Good luck xxx