I had a radical hysterectomy on the 19th of June and I can't put my body through any more. I think I have postive lymph node involvement but this hasn't been confirmed yet. I just want to know has anyone refused any further treatment?
Hi Besty
I am sorry you are dealing with this, what makes you suspect lymph node involvement? Has your consultant suggested this is likely? I think we all understand the fear that you are feeling, I was a later stage at diagnosis so I went straight to chemo & radiation and whilst I am left with someone manageable side effects most certainly do not regret having my treatment which is now approaching 2 years ago. Do you have a cancer nurse you could discuss your concerns with? Everyone here would also totally support you with further treatment if it was needed. I think it's important first to get confirmation of what you are dealing with and then I'm certain we can all help you from that point onwards. This really is life saving treatment and sadly the ladies I have known who refused treatment when needed are no longer with us to reply. Please keep in touch and know you are not alone xxx
Hi Bestie
I am a rad hyst lady with positive lymph nodes. I totally get how scared you must be! I echo weepingwillow in wondering how you know that you have positive lymph nodes? Mine were found in histology after my op.
I am coming to the end of my third week of chemorads and I can honestly say it has not been as bad as I expected. I am having good days and bad but I know it is time limited. I have a sticker chart where I am counting down the treatment and step by step I am getting there.
The first weeks of recovery from hysterectomy are really hard but once you turn the corner it gets easier. I am week 9 and feeling much better.
Chemorads are a totally different challenge but doable. I am managing to work most days and am feeling really positive.
It is hard facing both and they usually try to avoid it but if needs must!
Hang in there. It gets easier!
Xx
Hi Besty
I had a rad hyst 6 weeks ago and I remember exactly how I felt when I was 1 week in, as you are now. And the dread of the nodal involvement, which i had convinced myself would come to pass. I am very grateful that they came back clear and I was not recommended chemorads..
What I would say to you is, I could not have imagined that I would be as well recovered as I am now, at 6 weeks in, which is the time they would start the next phase of treatment if, unfortunately, it was found to be required.
Youve been through a lot and its so understandable to feel overwhelmed and filled with dread. Please try and take this one day at a time and focus on your recovery from surgery at the moment. If you need chemo rads then cross the bridge of whether you can tolerate that treatment when that time comes, which will be several weeks down the road and you will certainly be in a very different place physically by then, and perhaps emotionally too. We are all here to support you in any way we can!
All the best xXx
Lots of good answers. I had same dilemma in the past and I was very hesitant as the were doses bigger then than they are now. However I must emphasise it was 23 years ago. Not sure I would be writing this now if I hadn't had it done. My youngest son turns 30 this year.
Karen x
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Over 3 years ago I followed advice to have chemo-radio following my radical hysterectomy. My nodes were clear but post op histology indicated a significant risk for reoccurrence based on a close margin, lympho-vascular space invasion and peri-neural invasion. I understand my risk for reoccurrence was a subject of hot debate at the MDT. If I'm honest there have been times when I wonder if I would have been better off without the chemo-radio because I've had (seems to me) more than my fair share of long term side effects. But I remember when I consented to the chemo-radio that if I refused it would haunt me that the medical advice came down on the side of further treatment, but that's just me Whatever we decide we can never know what the other option would have turned into. I have met one lady who refused chemo-radio following her hysterectomy and more then 10 years later she's well but I don't know what her post op situation was - none of us have identical post op outcomes so it's not really helpful to compare. If it turns out you are recommended for chemo-radio you can ask the medics what they think your risk for reoccurrence is and the details of what their decision is based on.
But for sure, you are incredibly early on in terms of your post op phase so now's the time to focus on caring for yourself to optimise your recovery physically and mentally.
x
Thanks for all your replies. I find out next Thursday if my lymph nodes are positive and then If would require further treatment - Although I was told after they were removed there were a few which were suspicious and swollen.
I just wanted an idea of other available options before I go to see my consultant as even though chemo/radiotherapy maybe the best option, I don't think it's the right option for me.
I also had a radical hysterectomy six weeks ago, and week one, I truly felt like I had been hit by a bus. It seemed impossible to imagine ever feeling well again. But, at week six, though far from normal, I am living a pretty regular life with soreness at times but no real pain at all. Obviously each of us has to make her own decision about how to progress, but I would echo all the ladies in saying, take your recovery one day at a time. You are weeks from facing any next steps and you will feel a lot better physically before you get there. It is also maybe another way to look at it that you have put your body through an awful lot to not follow the course and give it the best possible chance for beating this thing. Keep in mind you may also be suffering hormonal fluctuations right now and maybe even some depression. It is hard for anyone who has not had a radical hysterectomy to understand what a major and difficult surgery it is and how much it affects your mind as well. Just try not to settle on anything right now. Make it through each day. Then make it through the next.
And we are all here. Hoping you are having a good day.
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Please dont refuse treatment out of fear. I was terrified when I was told chemo and radiation was my only option, but it was really doable, and I had no side effects, and still dont have any problems 9 months later
Hi Besty
I just wanted to add that my surgeon also said I had some swollen and suspicious looking lymph nodes when he came to see me the day after my surgery.
It turned out that yes some were inflamed and swollen, but it was because i was still healing from the LLETZ/LEEP I had done a few weeks prior. There was no malignancy. So there can be "innocent" explanations... I dont follow my own advice here but I would urge you to try not to pre empt a diagnosis/treatment plan/your response until you are armed with the full facts. I spent so many hours worrying about it at a time when i should have been sleeping and resting.
I really feel for you and understand how implausible it seems when you are told to take it one day at a time. But that is what everyone says with the benefit of hindsight that they wish they had done... be kind to yourself.
all the best xXx
Echoing the same, waiting is the hardest part. Waiting for test results, waiting for the next stage if treatment, waiting! I had chemorads then surgery. But i will tell you i had no problems that weren't manageable. And i am feeling myself finally. It might take time but you can do it. If you choose everyone here will help you through. They got mw through this with all my crazy questions and anxiety.
I had a lymphnode that was positive but after chemorads was clear. My situation is weird because my doctors chose to do surgery after. But i am glad i did all the treatments. Just for the peace of mind.
Wishing you the best. And like everyone said concentrate on healing. Make the big decisions later.
Hi besty
You've had great advice here, I'll only add that I felt exactly the same about further treatment after my rad hysterectomy. I actually did try and turn down chemorads and then later brachy but I had quite a stern oncologist who forced me to realise the odds were better with more treatment ...
anyway I just wanted to let you know I get exactly how you must feel, the disappointment is immense. BUT it's three years today I had my last treatment and I'm still here to still moan about it 
good luck and hopefully it won't be needed
Hi besty
You've had great advice here, I'll only add that I felt exactly the same about further treatment after my rad hysterectomy. I actually did try and turn down chemorads and then later brachy but I had quite a stern oncologist who forced me to realise the odds were better with more treatment ...
anyway I just wanted to let you know I get exactly how you must feel, the disappointment is immense. BUT it's three years today I had my last treatment and I'm still here to still moan about it good luck and hopefully it won't be needed
