A board for long-term side-effects?

Binney4

A board for long-term side-effects?

Binney4

Having just read Poppy's comments about there being too many boards I hesitate to bring this up, but I guess I'll brave it anyway (apologies to Poppy!)

There's no place here for long-term bc veterans to gather to ask those questions that only come up further down the road. Things like what it's like to go off the AIs after the standard 5 years are up -- or what it's like NOT to go off them. Or fears of what we missed because our treatment was back in the "dark ages" of cancer treatment, say, 7 or 8 years ago. Or the gal who develops lymphedema 29 years post-treatment. Or the one whose implant hardens after 17 years. Or the worries about what 12 years of wearing lymphedema compression garments is doing to your vascular system. Or the lingering fatigue, or fear of medical tests, or depression, or...

Isn't it great that I can even bring this subject up?! LONG-TERM SURVIVAL -- simply glorious!!! Thank you, Lord, for all the advances in cancer treatment!

But, hey, we're pioneers, and we need a place to compare notes.

Anybody else feel the same?

Binney 

Anonymous

Binney, I tend to go to the "Moving beyond" board, but I can totally see your point.  I am not a long term veteran by any means (2.5 years, though!  WOO HOO!), but I can appreciate the desire and need for something a little more specific.  

Oh, that crappy lingering fatigue.  It is overpowering, lately.  I can't stand it, and I am getting all whacked-out on my meds lately, which isn't helping.  Do they have to constantly change doses like this?!?!?!  

Anyway....back to the topic!  I will agree with you, Binney, and put in a vote for YES!  
Love and prayers, Deb

Lolita

I am not a long term bc survivor. However, it would give me a great deal of hope for my future to read posts of long term bc survivors and about their difficulties. What a great idea! You are pioneers. Thank you.

Barb1953

Binney, I'm one of the ones from the "dark ages" I'm an 8 yr. survivor. I agree with you. I love these boards, but it does seem like most of the conversations are more for girls going through recent treatments. I like your suggestion.

Anonymous

I can't wait to be an 8 year survivor someday!   Or, a 30 year survivor!  Or, an 80 year old woman! 

snowyday

I not a long term but it is a great idea and we should ask the moderators for another board, it would be good to read questions the women have so us newbies can learn from it as well. And long timers have a place to go directly.Pearl49

saluki

Binney--I think it's a very good idea.  At one time Moving beyond was the place to address those issues but as time has gone by the term has come to have a multitude of meanings---

Sometimes its hard to tell the difference between moving on and growing

our friendships.  Others feel the week they finish treatment its moving beyond and I guess it is.

But, many of us have much longer-term issues and it would be very appropriate to have a forum where those issues could be addressed --  A clear cut place to come instead of having to wonder whether this belongs in hormones etc.

Great suggestion!

TenderIsOurMight

A great suggestion! More survivors, more (individual and group) long-term-side effects.



This could offer a place for in-depth discussion of SE's, without frightening those without them who may wish to pass on reading the threads.



This may be of benefit to breastcancer.org too, as virtual symptom reporting seems to have been recently validated in studies on optimizing patient care. In other words, we may be less biased in our observed side effect's than previously scientifically recognized.



Whew! That was a mouthful.

Tender

CherrylH

I think it's a great idea. I'm seven years out and am doing ok, except for persistent fatigue. My onc recogonizes this as a possible SE of tx, but my internist doesn't see it as an SE of tx. Hooey!!!  It would be very helpful and affirming to have a place to talk about these issues. Thanks for the idea.

Cherryl

LindseyFL

I agree also. Binny, I am a 4 year plus survivor.  I am wishing I could stop the AI a year early.  I need to ask what it feels like to stop, and if it 's worth it to keep taking it.  There is much to live for, though.  So everyone fighting this, keep hanging in there! huggles to all.....

LizFL

I agree...not a long term survivor yet...but I'm optimistic that I will be.  I think it would be quite interesting to read experiences of those further down the road...plus it would be an inspiration to see that there are a number of long term survivors.

Liz

junie

A most excellent suggestion!

iodine

OK, no flames, please, but I disagree.

I've thought we're way too segregated here in the first place.  When I see the Jan. rads or chemo or surgery groups, I am concerned because people who could benefit from their posts won't see the information presented OR needed.

I like moving beyond because it has a place for olbies and soon to be oldbies to share.  I believe we offer a place for all to share the various recoveries and yes, sometimes laughter or interesting discussions --- off topic of bc, but still within the part of all of us.

It shows us moving in a direction of recovery and is an excellent example of how to do it, IMO.

As far as discussing things that scare newbies, by the time they get to moving beyond they arn't really newbies.  To add to that, knowledge is power?  At least if they have some of the problems we discuss, they will know they aren't alone.

Ok, my 2cents and reasoning.

mrsb

I think we have enough  group things. I am a 5+ year survivor and there is room for a little bit of me on most forums. I read a couple of times a week and post occaionally. Just my 2 cents worth.

ginger2345

I'm with Dottie. I still have trouble navigating about this new format, but to add one more place to check might lead to not seeing all the applicable posts.

If everyone titles their posts specifically enough for those interested to see them, Moving Beyond should work.

DebbieB

I do agree with Dottie.  There are way too many sections or groups.  When I first started there were maybe 5 sections if there were that many.  If you missed a day, your post wasn't buried so far back that you couldn't find it! 

BUT....having said that....I do agree with Binney as well.  I think it would be great to have a long-term side effects section.  Why....because 6 years out, I was dx'd in May with heart damage from the adriamycin.

When you are first dx'd with bc, you don't want to talk about long term side effects.  You're concerned about immediate side effects such as nausea and hair loss (which are temporary!).  You don't want to think about heart damage and arthritis and menopause and I do understand that.  That first year you are consumed by bc and just surviving.  The next year is spent in fear waiting to see if you have a recurrence.  You just want to deal with what's at hand.

So....I figure adding one more section at this point really can't hurt!

Debbie

mjcs7

Binney,

Love ya for the thought! You were there when I needed lymph info and was so very grateful.   Can I come aboard as a metastatic gal?  I have long term thoughts and concerns and some of you have already danced a few years ahead of me with treaments.  A place where we will not frighten anyone but get the facts and reality of what this condition brings on as we are able to live longer and I might add - be the guinea pigs for new drugs.

I started on the "just DX" board never thinking I would progress to needing the "chemo, radiation then lymphedema then metastatic" threads.  I too have a hard time finding a thread once posted as this is a mighty big forum.. but I vote for one more. I just hope I can remeber where in the H I have posted from one day to the next!!  See, there is the side effect issue again.

MJ