Hi just need some advice. I had a radical hysterectomy and lymphnode removal due to cc on the 4th jan. The following day my consultant came in all smiles and said he was pleased with the op and that they had got all the cancer. I asked if i would need more treatment and he said my treatment had finished.
I received my follow up appointment which wasnt until 11th feb so nearly 6 weeks later but wasnt concerned as thought i was ok.
Then on tuesday this week my cancer nurse called to say that my appointment had been bought forward as i need more trearment!! I asked why and what my results were but she said i need to speak to my consultant at my appointment.
I sometimes wonder if the proffesionals actually understand what we go through as all through this i seen to get told one thing so am ok then come down with a bump as my results always seem to come back worse.
Can anyone put light on what they might have found or why its changed???
Also i am recovering well from the hysterectomy but having real painfull probkems with the top of my right leg due to lymphnode removal. It still burns, cant wear any thing on my legs and is very painful by the end of the day. Is this normal?
Feeling quite anxious about everything again now so can someone please help
Your oncologist couldn't possibly have known for definite whether he got all the cancer on the next day. He would need the pathologists to determine that.
It sounds like the pathologists have now made their report (this takes several weeks as tissues have to be fixed for slides which takes time)'
I am guessing (please don't take this as definite) that they didn't get clear margins. It's unlikely that there is solid tumour as your consultant thought he got it all out. So they most likely found some cells that were left behind. Another possibility is that they found it in the lymph nodes. This is what happened to me in the past.
They clearly want to talk to you in.person about further treatment rather than on the phone. It doesn't mean they don't understand what you are going through. Just that they need to give you plenty of chance to ask questions face to face. I would guess (again don't assume I am right but be prepared) The future treatment is likely to include radiiotherapy, possibly combined with chemotherapy to get those cells zapped.
Please don't worry, it's doable and you are curable. Good luck with your appointment .
My consultant explained before my op that while i was under they would take my lymphnodes out and send them to be tested and if they came back positive then they would not have done the hysterectomy but sent me for chemo. They came back negative so they carried on with the hysterectomy so a bit confused as too how they might be in lymphnodes.
Just feel in limbo at the moment as i want to know what the outcome was.
I never think im not gonna make it through this but sometimes it seems like its never gonna end :( anyway rant over and thanks again
My consultant explained before my op that while i was under they would take my lymphnodes out and send them to be tested and if they came back positive then they would not have done the hysterectomy but sent me for chemo. They came back negative so they carried on with the hysterectomy so a bit confused as too how they might be in lymphnodes.
Just feel in limbo at the moment as i want to know what the outcome was.
I never think im not gonna make it through this but sometimes it seems like its never gonna end :( anyway rant over and thanks again
It's not just lymph nodes though, it's about getting clear margins around the tumour. Sometimes microscopic cells are left. Also they can only do preliminary reports during the operation. A full report needs further preparation and a lot more time. So it could still be either.
It's not uncommon for this to happen and very survivable. You will feel more positive when you have had a chat and know what the plan is. More so once you get cracking with it!
Sorry to jump in on a conversation, are you in the US Sarayay? I understand they do remove lymph nodes prior to hysterectomy over there and only proceed if not positive. Like Karen says they still need clear margins.
No im in the uk. My consultant did say that they wouldnt proceed if positive but they came back negative. A nurse i spoke to said some nodes escape and on retesting they could come back positive so just find it all very confusing. Roll on monday.
I've not heard of testing lymph nodes prior to hysterectomy over here, but seems standard in the US. I was a 1b1 and was told I'd have the hysterectomy and if they hadn't got clear lymph and margins I'd have had radiotherapy. I didn't it so am on 3 x monthly check ups xx
i has my rad hysterectomy on 5th jan. I was Told that all went well and no sight of spread however I go back on Tuesday for the results of the lymph nodes they didn’t test any during the op so guessing I will get the results on Tuesday. They seemed positive but after reading your post I don’t know. I will take anything they suggest though. Did they stage your cancer before the op? I was only advised mine was between 1a2 and 1b1 but unsure which one exactly. If it’s restaged towards the b stage. Maybe I will need further treatment. Only Tuesday to wait now. Hopefully you will get the answers soon. Xxx
They told me at my appointment thst its a new thing they are doing with the lymphnodes to try to prevent any more treatment.
I was staged at 1b2 after my mri but was 1b1 before mri
They also gave me a choice of open surgery or key hole, there were pros and cons to both but i opted for key hole and glad i did as im healing well apart from my legs but no that will take time.
And t white im sorry if i have worried you and im sure it will be fine as the nurse called me to tell me i needed more treatment so if you havent been told then it should be ok.
Thanks all for replying and ill let you know what they say on monday
