Hi everyone, I received my diagnosis last week following a LLETZ procedure- stage 1a2 at the moment according to tissue sample. 3 years ago I had a colposcopy which was deemed clear and now this. I have an MRI this week. Everything crossed it’s localised. My head is spinning but I am trying to remain calm until I know what I’m dealing with. Only me & my husband aware at the moment, dreading telling my teenage children, family , friends & work. Trying to remain optimistic but 2 years ago I was diagnosed with rheumatoid arthritis which is just about under control but has caused weight gain, now worried about additional side effects. Anyone else had treatment whilst having RA? I’ll probably be dropping in here quite frequently for the foreseeable x
Hi Lemonade47 and welcome to our group.
I’m sorry you’ve had a cancer diagnosis, and hope that your early staging of 1a2 remains the same after your scan. I don’t have any experience of RA or how this might impact, but a very early stage cancer like this would be typically dealt with by surgery and not require other treatment. It would not involve chemo or radiation as this treatment is used for cancers usually at stage 2b and beyond. Sometimes tiny, early stage cancers are completely removed by the LLETZ treatment-we had a lady recently in the group for whom this was the case.
I waited until my staging was confirmed after my scans and I knew what treatment I would be having before I told my family what was going on. I felt that I wanted to be able to answer any questions they might have and be able to have a positive discussion about what was going to happen, I limited even then who I told, but that was what suited me personally and everyone is different in how they deal with this.
Please feel free to post as many questions as you need to in the group, and know we are here to share our own experiences and help support you through whatever comes next. If you haven’t had an mri scan before, they are noisy! I used an eye mask for all of mine as I am claustrophobic, but your head does remain outside the machine.
Please let us know how you get on, and good luck with your scan.
Hi It is very scarey initially and your mind does play games with you but hopefully the staging will remain the same as did mine which was 1b1. I didn't share my fears or diagnosis with anyone outside this group until I knew exactly what I was facing. To be honest nobody truly understands the emotions and anxiety unless they have been there. I only ever told my husband and immediate family once I had treatment options and from that point on they were amazing! The ladies here were my support network from the get go and I probably owe them my sanity!
I had a radical hysterectomy and yes it was a really tough time with ups and downs but the ladies here were always there for me. I'm happy that outside of this group and my family nothing about Me has changed and nobody has an opinion about it if that makes sense.I still go back to step one every time a check up is imminent but the doctors and nurses all seem to anticipate this and are lovely. Almost a year on and I feel fine but it changes you so just do your best abd know that everyone here has been through it and will offer any support they can especially SarahH21.
No-one told me it was noisy so I now try to warn others! It also “thumps” from beneath as the images are being taken, so please don’t be alarmed at that! I had headphones on through which they played the radio but I could hardly hear it. But you will hear some instructions through the headphones, and it allows them to speak to you, I also had a thorax and abdomen scan after the pelvic mri which is common, but my stage of cancer was higher than yours so you may not have this.
Well ladies, MRI has confirmed it is stage 1b2 so I am preparing for a radical hysterectomy. I have had wonderful support from the local cancer prehab service - wellbeing, fitness & nutrition advice to get me ready for recovery. Any tips pre/ post op? Dreading being in hospital, never had an op before but grateful it all appears to be small and contained at the moment. Been given a 12 week time frame that it should take place within telling work was fine & I’ve told the children I need an op but no details. Not told family yet, been putting it off. X
Good news that your stage is confirmed and is still allowing for surgery. Being in hospital is always quite a thought-I’m just out my self from an operation last week.
Post surgery, the main advice would be to take it easy and not push yourself to do too much-you will have healing to do inside which you can’t see and it’s important to give yourself time to recover. No heavy lifting for example.
The op can cause your bowel to go on strike for a bit (it doesn’t like to be moved around) so having some stool softeners is a good idea, and raising your feet onto something like a small stool when you go to the loo can make things much easier.
In hospital a night shirt is easier than pyjamas as you will likely have a catheter in place, and it’s also easier for the staff to get access to check your wound. Take a long charger for your phone as the plug sockets are typically behind the bed and can be difficult to access. You may want to think about an eye mask and ear plugs as hospitals are bright and noisy places. I forgot my eye mask last week and regretted it!
Loose clothes to come home in, and a pillow for under the seatbelt to protect your tummy for the car journey home were also useful for me-we have a lot of speed bumps in our road! I had a vertical abdominal incision with 25 staples so this helped. It’s handy to use a cushion or pillow pressed against your tummy if you cough or sneeze just to give some extra support.
Those are just some ideas which spring to mind to get you started, but if there’s anything specific you can think of, please just ask.
Yes thank you, on the mend and I’m recovering pretty well-I had my gallbladder out last week, so nothing to do with my cancer thankfully: they’re taking my insides bit by bit! I’m glad my mri experience helped-I had one after my surgery last week but it wasn’t the same level of noise, thankfully. Just a lot of breathing in and out.
These things helped me in general after surgery-I’ve had 4 operations in the past few years and most things are just general tips. Obviously my salvage hysterectomy wasn’t successful but I was still opened up, hence my advice about travel and bowels as those things were the same even though nothing was removed in that particular op.
It’s good you’ve had support from the prehab service-I’m not aware we have anything like that in my area, but I’m sure it must be very helpful to get advice beforehand.
Hi I was like you and had never been in hospital but I think that the relief of knowing it is being got rid of kind of makes everything else surreal and the staff are all so kind.. all a bit surreal actually.
I didn't have a lot of pain from the actual surgery . They gave me pain killers direct into my tummy through little tubes first couple of days anyway.
However, the discomfort from my bowels and wind was really painful at times. I would advise to take their offer of an enema pre op if offered and to take stool softeners which they will offer you even if at first you don't think you will need them. Also ask for peppermint tea (yukky but a life saver) and if wind is really bad ask the doctor for peppermint oil which they have to prescribe before nurses can give it..
All the advice Sarah has given I totally agree with. Also when you first get home be careful you don't try to do too much as I made my wound open slightly and delayed recovery. Lift nothing heavier than your cup of coffee .. not even the kettle! I also developed a really horrible dry mouth which nobody had warned me about but sips of water relieve it and it does go away although it was weeks before I could get rid of the horrible metallic taste. Then it just disappeared.
Good luck and don't forget it is a big operation so don't beat yourself up if you have bad days. Psychologically it is a huge thing so just do your best and allow yourself moments of not being superwoman xxx