Treatment Choices

Sorry - another long ramble, but writing it all out does help me process things so bear with me.

So to recap, I went for an examination under anaesthetic (EUA) yesterday so that my surgical team could try evaluate whether there is enough clear space between my cervix and bladder to allow me to have surgery. I know that at least 3 of them had a good rummage around in every possible orifice so I shouldn’t be surprised that I am still feeling rather sore and miserable today.

Anyway the upshot is that they are now saying that my tumour is bigger than 4cm so my staging is now 1B2, but as far as they can tell it is still all within my cervix. Apparently it isn’t showing up as clearly on the MRI as they usually do and they couldn’t feel much during the EUA (getting a bit tired of hearing that I’m unusual).

After I came round, I had two surgeons standing round my bed and they basically laid out the options for me and asked what I wanted to do. They kept stressing that all of the options have the same likelihood of curing my cancer so the question is about what side effects and consequences I want to risk.

I could opt for chemoradiation, which would deal with the cancer but obviously brings other risks around short and longer term side effects.

Otherwise I go down the surgical route, which they said would be keyhole with nerve saving. They would start my operation by removing lymph nodes and sampling and biopsying the area next to my bladder. If all of that appears to be clear then they would go ahead and do the hysterectomy, but if they found anything of concern they would halt the operation and I’d have chemoradiation.

The risk is that if they do go ahead with the surgery they can’t be sure that they’ve got it all until the full biopsy is done on what has been removed so if I have surgery I might still have to have chemorad on top, which is a lot to put your body through. I suppose in that scenario though I’m no different from any other woman with cc who has surgery.

For now I’ve said I’d like to try the surgical route but I left it with the specialist nurse that I would give it more thought over the weekend. She stressed that I could talk to her more about it and change my mind if I want. Think I will take her up on the offer to talk it through next week, particulalry as this plan means a change of consultant to one who is more experienced in this technique so I’m waiting to hear a new surgery date anyway.

Feel a bit more positive today after going to my first Jo’s support group meeting - really good to meet other women who have been through it and come out the other side. :slight_smile:

BTW I read a quote by Walter Elliot the other day which keeps running round my head, “Perseverence is not a long race; it is many short races one after the other” Keep on keeping on, ladies!

hi rosehip
i was given a choice hysterctomy or chemo radiation, as with 1b1 they both have the same success rate. i chose the chemo radiation route.
that was in may/june 2010. i did look up and search the internet to see what i could do to help protect my bowels/ bladder during radiation.
i am still feeling fine and so far all clear.
hope this helps

Hi there. I had an EUA too as my MRI wasn’t clear enough before my treatment. They thought my tumour was limited to my cervix so I had a radicle hysterectomy (not keyhole) thinking it would remove everything meaning no more treatment. My tumour was 2cm but I was diagnosed as 2A cc. The pathology after surgery showed node involvement & spread to other areas (neither of which showed up on my MRI) so I had to have chemo radio anyway starting 4wks after surgery. Thinking about it afterwards I would prob still have asked for my RH first even if they knew it had spread beforehand. My concern was finding a reoccurrence after treatment. If it meant I would need surgery following chemo radio, I could lose my bladder &/or bowel in the process. The trouble with chemo radio is that it makes ur pelvic tissues stick together making any surgery post radiation very difficult. I would have still wanted everything removed by surgery first. I met a lady in hospital after my surgery who had this exact problem & she was back in for a reoccurrence a year after her chemo radio. Because they couldn’t give her any further radiotherapy ( u can usually only treat ur pelvic area with radiotherapy once) they had to use surgery. She lost her bowel & bladder in the process because of the difficulties caused by her previous radiotherapy. It was awful seeing the effect on her being told the results of her surgery that night & they couldnt get it all :0( I know it may sound heavy handed but when I got my second diagnosis after my surgery I was actually relieved I had already had my radicle hysterectomy. The way I saw it, if I had surgery first then had a reoccurrence I still had chemo radio in my back pocket as a second treatment option. If I had chemo radio first then had a reoccurrence, surgery as a second treatment option would be so much more difficult & would leave me with so many more problems. I think ur team will guide u towards the best option for u. It’s probably best to speak to them next week again before u decide. Just to let u know that despite having both treatments so close together and my RH not being keyhole I still managed fine. I hardly have any side effects now. My bowels are pretty much back to normal, my scar is well healed & the only major side effect is the menopause which continues to drive me crazy!! So the positive thing is that no matter what u decide both r very doable. The most important thing is to get this cancer out & either treatment option can do this. It just depends on ur situation. Good

Dear Katie and Lu-Lu

Thank you so much for posting. Learning about your experiences has been really helpful to me and I now know the questions I want to ask when I see the nurse tomorrow. That’s a significant step forward!

I was saying to my friend last night that the thing I need toget my head around is that there isn’t a risk-free option so I’m going to feel anxious whatever route we go down.

I’m reminded of an old joke about a man visiting a remote Irish village who asks a local which of the two pubs in town he would recommend. The local scratches his head and says “Well, to be sure, whichever one you go to, you’ll wish you’d gone to the other one”.


Thought I’d give an update. Had a really productive and very long session with my specialist nurse yesterday. She has just become a grandma and really wanted to be with her family (the receptionist blabbed) but she came to help me and I am so grateful to her for that.

She was really great and went through every element of my diagnosis and results so far. I am a scientist by training myself and understanding what’s going on is really important to me. This is an emotional experience, but my logical brain needs to come along for the ride or I can’t be comfortable with my decisions.

In the course of talking it all through I had a definite ‘light bulb moment’ when I realised that the choice I am making right now is not between surgery and chemoradiation, it is between opting for the chemorad now and going through a further surgical diagnostic procedure which will allow a more informed decision to be made by the medical team. I can live with that.

This way, if I end up having chemoradiation, and I should experience some of the long term side effects that we all dread, at least I’ll know that it really was necessary and that surgery really wasn’t a viable option for me.

So, once again, thanks for sharing your thoughts and experiences with me. Onwards and upwards!

Hi Rosehip

I was faced with the exact same choice - I opted for surgery on the understanding chemoradiation might be required, my MRI was also inconclusive. Luckily after the longest two weeks of my life post op I got the all clear. You are lucky to be offered keyhole for 1b2, two and a half years ago at the hospital I was treated at it was only an option for 1a cancer. However, my vetrical abdiminal incision has faded nicely, so no complaints. A good outcome is all we want, Sounds like you are being well looked after. I will keep everything crossed for you that you have the same outcome as I did.

Take care,

lots of love

Louise xx

So back home again and still waiting on results.

Had lymph nodes removed by keyhole Tues and they also checked out the margins between cervix and bladder. Good news is that they are confident there’s enough clear margin for surgery. Bad news is that I had several large and one hard lymph node and they have decided to wait for full biopsy results before making a decision.

At least they’ll be sure they are giving me the right treatment but recovering from one procedure to have another immediately is not much fun. Feeling a bit low today but it could be worse and at least I should be feeling ok for Christmas although all I plan to do is sit in front of the fire with a large whisky.

Hi Roship

((Hugs))  I have my fingers crossed for you xx

Enjoy chocs and whisky

Happy Christmas and good lucck in 2013

Kath x