Hi all I hope everyone is keeping as well as possible , I’m just wondering if anyone could possibly answer a couple of questions my CNS is away till the 27th.
i had my radical hysterectomy on the 2/1 I am recovering well good and bad days but nothing I wouldn’t expect.
I haven’t had any discharge or bleeding except for day 1 had a little bleeding when I stood up for the first time - I was told to maybe expect a gush (a little like weeing myself) after a week or so if I haven’t have any discharge or bleeding and this hasn’t happened yet ? Is that normal ?
also I am back to see the surgeon next week he explained after surgery that one of my lymph nodes looked “suspicious “ and was pretty enlarged - he’s hoping it’s just reactive but we’ll know more next week when I see him -
all going well and the lymph nodes/tissues come back clear does this mean I get told I am cancer free or do I need to go for further scans to confirm this. Thanks everyone in advance and if anyone needs or wants to ask me any questions in regards to the RH I will happily answer and support you as much as I can
Lorzy xx
Hi Lorzy321
It’s good to read you are recovering well after your op. Everyone is different, so may or may not have discharge and/or bleeding but I’m sure you’ll be reassured about this when you see your surgeon.
Hospitals have different protocols after surgery, but it may be that if there is concern about a lymphnode you may have another scan to check on it.
My doctors have never used the words cancer free to me, but I’m aware that some may say this. I had what’s called a complete radiological response after chemoradiation (in other words it was termed a success) and my consultant described this as NED (no evidence of disease) when I had my follow up mri scan at 3 months after treatment.
It was explained to me that scans cannot not pick up tiny cells, but they may be there and cannot be seen, so they won’t use the words cancer free. When I had surgery when my cancer recurred, the cancer was removed with clear margins, but when I was given my results, it was again termed as NED and not described as cancer free. My surgeon at that point said once more that despite surgery, cells can remain which could grow again.
Having a Ned result is a good thing-no disease can be seen, and in my experience that’s the most I have ever been told. Your own doctor may describe it as being cancer free, so it’s possible to be told either this or Ned. I’ve had different consultants over the years dealing with cancer and they have all tended to be cautious in how they describe things.
Hopefully your appointment goes well and you’ll know more this week.
Sarah xx
I’m doing fine thank you Lorzy321 but I just wanted you to be aware that different surgeons/consultants use different terminology, so don’t be despondent if you don’t necessarily hear the words “cancer free”. I understand we all place a big emphasis on the actual words used!
Your surgeon may use those words, but it so happens that mine didn’t! I suppose it was a little disappointing for me not to have heard those words the first time round, but in the event my consultant was actually correct not to let me assume I would have no further issues.
My chemoradiation was successful, but my scan hadn’t picked up that there were tiny cells lurking after treatment which couldn’t be seen on the mri, and my cancer returned. After I had my major surgery for recurrence I was prepared for the fact that my surgeon this time wouldn’t use the words cancer free and she didn’t! I was simply delighted to hear the words clear margins and no evidence of disease. That was enough for me.
I still don’t focus on the words-I don’t let it get to me or spend my time worrying about cancer as I don’t currently have any issues after my surgery and that was almost 5 years ago now!
Sarah xx
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