73.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

After Mx how is NED determined

11 REPLIES 11
Littlescoot
Member

Re: After Mx how is NED determined

Hi everyone,

many thanks for all your replies. Sorry for the delayed reply I was actually having my Mx and have slept rather a lot since lol. I think I shall try and stick to roadrunners's diagnosis- seems the least worrying and 95 would be a damned good innings!!
cheers LS XXX
Chico
Member

Re: After Mx how is NED determined

I feel so much better after reading the above posts! After so many cockups with my treatment, I don't wish to have anything more to do with my oncologist, My surgeon has said that he is prepared to see me every 6 months but he would not be doing any scans or bloods, and would only check on this if I had any symptoms, but of course at anytime if I had anything worrying me he would more than happy to see me to discuss the next step, I am on Leterozle at the moment I do have bone and nerve pain but I am coping with that, I just thought that maybeI was shooting my self in the foot by not seeing a oncologist once a year, but it seems that this is quite the norm, my surgeon has said that if he needs advise or for me to see an oncologist then he is quite happy to work with another trust.

Spikey
Member

Re: After Mx how is NED determined

Hi Littlescoot, I had a mx yesterday too but don't know about any future treatments yet but wondered the same thing the other day. It seems fairly clear tome that there is no stock answer and you have to trust your surgeon, hitch luckily after I swapped to a new one after 2 rubbish and unhelpful appointments I now have a fantastic surgeon - well 2 if I include my cosmetic one too! Hope you recover well from your mx.....I seem to be okay except they keep waking me up for observation ......thought I was in hospital to get some sleep! 🙂
GIJaneH
Member

Re: After Mx how is NED determined

I gather that most recurrences happen within 2 years, and relatively few after five. Oncologists seem to vary in their terminology - mine said that he considered the route of MX, chemo & rads was curative. If, years later, a tumour appeared on the other side, and you went through the same regime, you would be considered cured again. Certainly I know a lady nearly 90 who's had 2 mxs years apart and the latest was 20 years ago, so she would fit that description. It also seems to vary how good a follow up you get. After I finished treatment i was seen every 3 months for the first year, alternating onc & surgeon. The second year was 6 monthly I think.. and I'm expecting the 3rd year onwards to be annual. Yes, mammo on good side.... good old feel around.... check no other symptoms....

It seems to me in many ways being NED has to do with our heads.... and getting used to trusting our bodies again... but I could be wrong! Often am....

Jane

NAZ
Member

Re: After Mx how is NED determined

Where does the five year time span come from I wonder?
Have the medics conducted studies to determine whether 5 years is a suitable time to discharge many women from regular tests and mammograms?
How devastating for those women who reach the five year milestone and then discover that it has returned.

RoadRunner
Member

Re: After Mx how is NED determined

To make it clear - we can only ever be NED, there is no all clear with breast cancer, whatever the press etc may like to say. As KB said, it has a nasty habit of returning. After five years we all breathe a sigh of relief as we are probably over the worst, but there are no guarantees. The mother of a friend had liver cancer diagnosed (as a primary). However, when it was pointed out she had had breast cancer 30 years earlier, they went back and checked again - it was actually secondary breast cancer - after 30 years!
Unfortunately there is no test to look for microscopic cancer cells floating around the body. So we all have to be aware of any odd symptoms that don't go away - two weeks is a good rule of thumb - and get them checked out.

Guest user
Not applicable

Re: After Mx how is NED determined

Hiya there,
I asked a very similar question last year, on one of my posts. If you look on my previous posts about NED, you will see various comments people have made.You might find it quite interesting and it might help answer your question. But if i was you ask the experts, ie your surgeon, onc or breast cancer nurse....
I was dx in April last year and had WLE surgery, chemo, rads and im currently on herceptin. I asked my surgeon when would i get the all clear and his reply was that they never give the all clear because unfortunately breast cancer has a nasty habit of returning. I was also informed that if all goes well after youve had 5 clear mammograms etc then they discharge you. They say that after the 5yrs you are kind of out of the danger zone, if that makes any sense. i guess if you are going to get any recurrances then it will happen within the 5 yrs. If all is ok after that, then i guess you just get on with your life. However some hospitals might be different and might give the all clear.
Good luck with all your treatments and i hope all goes well for you, LS. Btw i didn't actually suffer with chemo, i sailed through it so don't get scared and worried about all the nasty stories you hear about it making you ill, because i didn't get many side effects......

Love Karen..xxx
Guest user
Not applicable

Re: After Mx how is NED determined

Thanks Roadrunner that made me laugh, but it is true 🙂
RoadRunner
Member

Re: After Mx how is NED determined

You know it's worked when you die, aged 95, of something else..........

Guest user
Not applicable

Re: After Mx how is NED determined

Hi, I've just finished my active treatment and it turns out that they cross their fingers and hope - it at least appears that way. they don't like to do any scans unless you are showing sypmtoms so apart from the initial CT scan I had right at the begining they did not want to do anything but wait, however I have had some back pain and so they agreed to give me a bone scan but this isn't standard 😞

My follow ups are once a year and i believe a mammogram on the other side but that's it, apparently it's quite rare for them to pick up mets at these check ups, most mets are found when we get sypmtoms and get them checked out.

It is very hard sometimes to accept that you have to wait for symptoms before they scan but I plan to try and put this all behind me and get on with my life, we have to trust that they know what they are doing.

Wishing you all the best of luck with your treatments and the future 🙂
Moonbeam
angiepops
Member

Re: After Mx how is NED determined

hi
i dont know, but im glad you posted this because i was thinking the same thing. ive had mx 2 weeks ago and tommorrow i find out what further treatment i will be having so i will ask my surgeon how he determines the 'clear margin' and what else they look for.
i'll be in touch
angie x
Littlescoot
Member

After Mx how is NED determined

Hi I'm on the start of my journey with my Mx due on Thursday. This will be followed by chemo and rads and tamoxifen. How do the breast team determine after this time if I am in the clear as I obviously can't have a mammograiron the affected side as it will be kind of missing! So is it done by mammogram on the other side and CT and bone scans? I'm just wondering how I will ever know if all the treatments have worked enough to say I have come through it?
Many thanks LS