Help, change in plan and in pieces

Hi all
I have 1b1 cc and had been expecting a radical hysterectomy on 13th September. MRI fine and chest X-ray clear…then pet scan result delayed, but finally came in and told one lymph node affected. I’m so panicked, even though the nurse keeps repeating no spread anywhere else, as I’d been so focused on it all being contained in the cervix. Now I need to wait for an oncology appointment and go down the chemorads route. I know I’m told, and have read, that it’s as curative, but I’d so much got my head around the stupid thing being removed and gone in the next few weeks, that I’m now in pieces. I knew this was possible, so I’m not sure why I’ve fallen apart so much…can anyone say anything to get me back up and running?
Anne x

My story might help, I was diagnosed at stage 4a with spread into the vagina and bladder wall and one pelvic node. After my chemoradiation it's all gone :)

It's so hard when things change but take some time and you'll soon come round to the idea. I'm on week 2 of chemorads and so far so good. stay positive 

Kim xxx

Thanks Philleepa and Kim, that's helpful. I'd just talked myself so much into the hysterectomy that I can't seem to see past that. Of course I've then googled (I know, I know...) and am panicking about the lymph node involvement. I feel a bit like I'm back at the starting blocks, after previously accepting things and feeling quite positive. 

Anne x

Hi Anne

There have been a number of posts recently from women in similar positions to you, where there have been changes to the plans. Two years ago I was diagnosed 1b1 and was in for a RH. But during the op they found it had spread to 5 lymph nodes so had to follow up with chemo rads. It was a huge blow at the time, but I am glad now that I had the follow up treatment as I think it has given me my best chance. I'm sure it will be hard for a while but once you get a date for starting you will refocus on what is ahead. Hope the treatment starts soon and good luck with it all.


mine was stage 2b and in 3 lymph nodes and I got the all clear :) xx

Thanks Rachel and Pinky. I guess if I'd had the surgery, it would then have shown up afterwards at some point and I'd have had to have chemorads later on top of surgery. The nurse today explained that if chemorads are going to be used, and they are with any lymph node they can't safely remove, it's better to get started and let the chemorads deal with the whole lot. I didn't ask where the affected node was, which is now bothering me, or what she meant when she said it can't be safely removed - is that cos it's in a weird place, or because it couldn't be removed with safe margins? My consultant is due to ring me tomorrow, so hopefully she'll give me more (reassuring) info. The other 1b1 or 1b2 ladies seem to have had hysterectomies, and then the lymph node dissection has shown spread, so then the follow up has been chemorads. it seems odd to be heading straight for chemorads - especially as the nurse said they'd been unsure if the lymph node was significant and I was discussed for ages in MDT, before they made a decision. Urgh, I know I just have t get on with it and trust the professionals, its just shot holes in my positivity and (naive) hope that this was going to be straightforward. It's stupid as both the colposcopy nurse and my consultant said form day one that I might have chemorads and that they are as curative as surgery - I just can't quite get that into my head. 

Anne X 

Hi Anne :-)

At the risk of boring all the women who already know this, but I had surgery and then had to have chemo-rads anyway which actually makes me quite bitter about the surgery. Chemo-rads is such a sophisticated and successful treatment and so much easier to cope with than surgery. In my opinion cutting people open to remove the bad bits is just so passé.
Welcome to 21st Century treatment :-)

Be lucky :-)

I knew you'd be pro chemorads, Tiv, and the way you've put it has just put a huge grin on my face, thank you! 

Anne x

I'll have you know that I had a robotic surgery which surely qualifies me to be part of the 21st century medicine club! Whoever invents all these procedures/drugs is bloody smart, thank God. Years ago, we wouldn't have any of these treatments which would not have been good news at all.

Yay, Big Pharma - never thought I'd be saying that....

t x

I hope I haven't offended you Teresa! I am sure that robotic surgery is very 21st Century, certainly in comparison to mine, which was performed in a cave by woolly mammoths (no, that is a lie) but I still favour the big pharma/nuclear winter forms of treatment :-)

Well, I'm still up and down. My consultant rang me on Friday to explain one lymph node in the pelvic showed on the PET scan. She extolled the virtues of chemorads over surgery and assured my this is still as curable and an early stage 1b. All good and I've been positive about it all weekend. Saw the oncologist today, for a rundown on the chemorads (28 rads, 5 cistplatin, 3 brachytherapy). It's not that he wasn't lovely, but just very cautious. He also said because of the lymph node I'm stage 3! He did say it's likely the treatment will work, but was a lot less dynamic about it and kept saying he was sorry. i then got weighed and measured and the nurse said she expects I'll have a hard time with the chemo, because I'm slight. I'm so exhausted by all the emotions and can't get my head around being stage 3. Panicking hugely, again, sorry.

Anne x