Hi, I was diagnosed March 2004 (Stage 2) and am still doing fine. I visit the forums from time to time, and think the thread is a good idea. Those that are fine often don’t keep in touch, which can be discouraging for those just diagnosed.
Regards
Sarah
jackwagstaff has suggested on the thread which prompted me to start this one, “Letrozole Side Effects?”, that there could be lots of different topics within the category, to cover positive stories about say, rads, chemo, etc.
I know some of these things are covered in individual threads but they tend to get lost over time. I just thought it would be good to keep the positive stories altogether, so that when someone new comes on here, or when an existing ‘member’ moves on to a different phase, there would always be some encouraging stories to read which are easy to find.
I remember when I was first diagnosed with lobular/ductal bc, I wanted to find people who had had a similar diagnosis and who had come out the other end and were once more living a normal life. I know others feel the same. We all need hope!
Ann x
Sorry, seem to have posted this twice in error.
Well it is 21 years since I was first diagnosed…aged just 39.
And it is now 11 years since I was diagnosed with bone mets.
Thought I hadn’t long to go but have recently celebrated my 60th birthday and hope to have a lot more time to enjoy life. Treatment continues but I am still enjoying life. It is a great idea too. Love Val
Val - I don’t want to sound patronising but you are such a great example and give so much encouragement to others.
Ann xxx
Oooh Ann, you are making me blush! Keep well, love Val
Your post has cheered me Scottishlass,
I was dx when just turned 40 then 10 1/2 years later ( this March) I was dx mets in bones. Am generally coping ok but is great to hear someone with such similar history still going strong for so long!I plan to follow in your footsteps and stick around for a long time yet!
Think this thread is good idea and am sure people will find comfort from it.
Positive thoughts and love to you all, Julie x
Hi Julie, If you want to PM me anytime re your similar story and your treatment feel free to do so. When I found out I had bone mets I knew of NO-ONE who had the same and was scared s**tless and felt so alone. I didn’t have BCC forums to help out either and only discovered the website last August when I was looking for some information. Same to anyone else who wants to PM me for any support or help. Love Val
Well done Ann , I´m glad you started this thread on here .It´s so good to read from all of you that you´ve finished your treatment ,however bad we may find it at times ,there is a light at the end of the tunnel and you are all living proof of this .
No matter how positive we try to be there are times when events overwhelm us , and sometimes it´s such a little insignificant thing, and then we worry and doubts settle in …“will this treatment work ?”, “Oh my god , look at the list of side effects ,will I get them all ?”… " I look hidious in a headscarf ."“Not more treatment !” Sometimes just everything can set me off ,but to be able to read of you ladies who are making it past every yearly milestone ,thats so positive , so uplifting and I want some of that !! Six months until my first year is done …cannot wait to post !!
luv all , Kris
What a nice idea!
Exactly 1 year on today, still stuck on chemo, so long for the day I can qualify for this category. Sometimes it felt like the treatment is never going to end and can relate to so many things you stated, Kris. Having read all your posts, esp. Val’s, it’s good to know that we can still enjoy life. Well said.
xx
Hi
I’m 2 years out and still NED. Hoping I’m not tempting providence!
Good luck to you all.
Mal x
Just reporting that today got results of routine mammogram (6 years post diagnosis) and no signs of recurrence. I have now stopped Tamoxifen and will be switched to Letrozole.
I had difficulty finding this thread again - didn’t come up with a search of ‘NED’ which is a pity as it would be good if we all posted from time to time.
best wishes to you all
Sarah
Hi Sarah,
Fantastic news on your latest mammogram results, its great to hear of others further down the line who are NED years later, so pleased for you Sarah , 6 yrs is brilliant and gives us all lots of encouragement.
I agree that it is difficult to find this thread again ,i looked for it yesterday and eventualy found it about 4/5 pages back and that is such a pity, as im sure lots of people would post when they could to help encourage others going through BC . I think by the response to this thread a lot of people would like to see a NED category too, im sure one of the moderators was going to pass the request onto the BCC managers , not sure if their has been any news/feedback on this yet ,hopefully someone from BCC could let us know? as it would be such a shame for this thread to keep going further down the page and eventualy be lost to others who may find encouragement from it.
All the best to everyone
Linda x
Hi Ladies
Just a thought and may be wrong, but can you not save the thread to your profile?
Sandra xxx
HI Sandra, thanks - your post crossed with mine. I will try your suggestion
Sarah
Thanks for the congrats, yes I do feel a bit like celebrating.
When I was diagnosed at 45 I remember feeling cross at the idea that I might not reach 50 (having previously not looked forward to that milestone - amazing how my viewpoint changed in an instant!)- and now I will be 52 in a few weeks, and am thoroughly enjoying life.
I am not sure NED needs a separate category, but the search engine needs improving. How could it not throw up this thread on a search of NED? I had to search on my own name! Perhaps the BCC managers can explain where I might have gone wrong. This thread won’t be one that is used much, but it would be nice to look it up from time to time. If the engine can’t be fixed, then maybe a separate category will do instead.
Regards
Sarah
Hi Sandra,
Yes we could do that , but that wouldnt help any of the newly DX people who join the forums and may be looking for some encouragement also at a very difficult time ,as they proberly wouldnt know about this thread if it were lost. We all need encouragement at times wherever we are in our DX and i dont think topics like this need to be hidden away just as others shouldnt.
Just my view though
Hugs to you Linda x
Hi Linda, you are right, it needs to be obvious for newcomers. If you are in a panic you don’t want to be struggling to find the positive stories, they should be flagged up.
Sarah
I never thought I would be this happy being a “NED”, first mammo done since diagnosis and it was clear, just so bloody happy.
I will never take being normal for granted again, not after my last year.
Im even excited about going back to work!!!
support on this forum has been amazing
love n hugs
Carol xxxx
Very happy to report 8 years NED - I feel so lucky.
I thought I was going to die very soon after diagnosis, at the age of 44.
I’m still on Tamoxifen, as my onc now recommends it for 10 years, having originally been told I’d take it for 5 - but hey, ho, if it keeps me well, it’s worth putting up with the few side effects I get from it. x