I was thinking that it would be good to have a section on this site where people can log each year that passes with NED (no evidence of disease) since their dx. That way, they could keep coming back and letting us know how they are doing - assuming people remembered, that is. That would be so encouraging for someone coming on for the first time. Otherwise, they are just reading about the people who have problems.
What do you think?
Ann x
Hi Ann
I think that is a really good idea and thank you for starting this thread to discuss what people think
Ruby xx
i think its a really good idea too, as these discussions are usually skewed as its mainly people with active treatment or concerns who post frequently. Hopefully people will keep it up so there doesn’t end up an even scarier thread where poeple “disappear” and newbies like me fear the worst!
Hi Ladies,
Tors, you sound like me, half empty cup!!
Perhaps we could ask them to finish their post with “if l forget to sign in next year, it is because l am enjoying my life” Lol!
This could be a wonderful thread
Sandra xxx
Great idea, I would have posted for 7 years on this thread. In fact I did post a few times 7 years ago but moving on meant moving on, but I would have liked to hear news of others who I “met” then.
I have every intention of having NED next year.
Hugs
Maria
Hello ladies. That is a great idea and I think as each anniversary following initial diagnosis arrives, thoughts naturally return to what we have been through (well for me they do anyway), hence a visit to this site again. I am just over 1 year post Dx but thankfully doing very well with NED after having had a 2.5cm grade 3 lump in April / May 2009. Good luck to anyone undergoing or about to undergo treatment. xxxx
Hi Ladies,
I’ll pass your idea on to our managers.
Jo, Facilitator
What a good Idea Ann, I think a NED category would give lots of hope and encouragment to anyone starting out on this journey and going through treatments, im sure it would have helped me lots when i was first DX .
I was DX July 2007 ,2.3 cm Stage 2 , Grade 3 tumour ,and too am thankfully doing well with NED at the moment , i will be 3yrs next month since DX .
Good Luck to everyone on the forums who are undergoing BC treatments and all the very best to you all.
Linda x
It has been a long time since I looked at this site and I am glad I chose tonight to do so. I found my cancer on 26th May 2005. I had a large 2.5cm lobular tumour. I was officially dx’d on 9th June 2005. I had a quadrandectomy (large WLE) on 23rd June that year followed by a complete mast in July as I didn’t have clear margins. I had immediate recon with a saline implant and then had 6 x FEC Sept 05 - Jan 06 followed by 6 weeks of rads Feb - Mar 2006. In May 2007 my implant was replaced as I had bad capsulation but my body didn’t like the new implant either and after numerous infections I underwent a pedicle tram reconstruction in August 2007.
Here I am, 5 years and 6 days after I found my lump and a few days short of 5 years since I was offically diagnosed. Note the words HERE I AM. I am very much alive, feel very, very well. I have hair that is almost 15 inches long. I have a lot of scars both mental and physical but I have seen both my sons complete their Grammar school education, my eldest is now in the middle of a PhD and getting married in September, my youngest is finishing his 2nd year in a Masters degree course. If anybody had told me 5 years ago I would still be here, I would have laughed at them. Even 4 years, 3 years ago I would have had my doubts. BUT, I AM here! Thanks to my wonderful oncology team, my surgical team and brilliant family / friend support, I’m here. Battered and bruised, but here and have enjoyed so many experiences that I thought would be denied to me. Newbies take heart, there is light at the end of the tunnel and even when things look really bleak and you feel like poo, remember, although some people do not make it (and I have lost some very good friends to this illness) there are loads and LOADS of "survivors.
Good luck to each and every one of you. xxxxxxs
…and I’m six plus years ned after a poor prognosis Christmas '03. Being trip neg I’m hanging on in there for the big 8yr one the end of next year.
Josie x
yes brilliant, such a boost when you are feeling down… Like everyone else with a huge tumour (9cm) and large node involvement and a ‘poor’ prognosis its nice to actually hear (and see) survivors of this horrid disease. I really want to make it and would be grateful if I were to make it to 5 years - any more would be a very welcome bonus… I want to celebrate every year I get and would like to join.
Excellent idea, Ann. It is already being a great encouragement!
Hi Baldeagle,
Welcome back to the forums, I’m sure your story will give some of those newly diagnosed hope.
Take care,
Jo, Facilitator
Hi all, I’m not NED but I’ve had no detectable active cancer for many years. I was diagnosed with bone mets from the very beginning in 2003. Seven years on and I have not had a single day in bed. I’m lucky to have had great responses to treatment. Life is good…x
I was dx with triple neg bc in October 2006 and so far have been NED Ihad a grade2 2cm idc and had wle,chemo[4xfec 4xtax]and 15 rads.Still quite early days but very glad to post on here.
Vxx
This is such a great and encouraging thread especially when we are just doing treatment and in the words of Baldeagle ( love your post ) feeling poo. i too have lost friends to this disease and although most of the time try to be very strong and positive ,its always them who my mind drifts back to.I am also looking forward to post treatment and all lifes events that i want to see my daughter get married and i want to be a gran and spoil them rotten ,and its so uplifting to see all you ladies doing that and enjoying life even more because we dont take it for granted and we have learnt whats important to us keep well all of you love julie xxxxx
belinda - Perhaps it would be an idea to have two sections to the category, then - NED and another one for people with secondaries who have encouraging stories. Everyone needs encouragement, no matter what their situation.
It would also be useful if people could put brief details of their diagnosis on their profile. It is helpful to be able to find someone else who had the same dx. We can all be anonymous on here, so it wouldn’t be giving anything away.
Ann x
Yes a good idea Ann.
x
Brilliant idea - longing for the day I look at that forum ! bring it on xxx
Great idea Ann,
thnks for thinking of it and I can’t wait to be a fully paid up member
Suze xx