Why no info on Stage 4?

pitanga

I am wondering why, with all the information about symptoms, diagnosis, treatment options etc. on this site there is such a focus on early stage disease and so little on stage 4?  

 I have bone mets and when I am looking for information about the different types of metastases and treatment plans for stage 4, I find absolutely nothing on BCO.

Lisa 

leggo

bcmets.org is helpful. I'm a metster myself so if I can help, please feel free to pm me.

bygracealone

Lisa, you make a valid point.

Unfortunately this seems to be part of the invisibleness that comes with metastatic BC. Even on a site that should acknowledge us.

Gracie1's suggestion is a good one. BCmets is my favorite. Musa Meyer is a blessing with her knowledge and expeience and we have a pharmacist that often posts. It is a lovely assemblage of kind thoughtful women.

pitanga

Gracie and By Grace,

I did not know about the bcmets site, but my point is that I feel kind of disappointed in BCO for not addressing stage 4 concerns.

The invisibility you mention, By Grace, is exactly the issue I am questioning. By only providing information on early-stage disease, BCO, whether intentionally or not, promotes the idea that early detection is what it's all about, and that after that you are home free. The spector of stage 4 rains on that parade in a big way. Maybe that is why mum's the word.

However, there are a lot of metsters on BCO, a lot of whom started out here as early stage ladies. Myself among them.

I think that even if BCO chooses not to include symptoms, diagnosis & treatment info for us metsters on this site, it would be considerate of the site organizers to at least acknowledge our concerns by posting links to other sites such as the one you both mentioned. It takes a lot of time to sift through all the zillions of hits that come up when you do a search for metastatic breast cancer, and a lot of them have dubious information. It would be very helpful if BCO simply culled through them and posted a dozen or so that are reliable.

Lisa 

LRM216

Lisa - I agree with your post and concerns completely.  BCO should most definitely take this in hand and begin to correct it so that info regarding Stage 4 is supplied here, as it is for all those just diagnosed at an early stage.  As you yourself stated, there are many Stage IV gals that began as stage 1 and 2.  I am presently stage 1 myself, but also realize that Stage IV can be only one ct/pet scan away.

Linda

pitanga

Linda,

thanks for your post. I am getting discouraged, this subject does not seem to arouse much interest though I have also made the suggestion on the stage 4 forum. there is a recurring issue about non-metsters posting their questions there. Many ladies feel its inappropriate. They are looking for comfort themselves and want to dialogue just with other stage 4 gals. There is an argument on this very subject right now and it is not the first time. Maybe if BCO were to post more info on the site, early stage ladies could get their information that way and they would not feel so much of a need to post on the stage 4 forum.

Lisa 

Fitztwins

The symptoms for mets present so differently. I don't know that they could cover it all with out giving misleading information. Scaring the begeezers out of someone.

bygracealone

Fitz,as someone whose intial dx was stage IV mets I am not understanding your comment "The symptoms for mets present so differently."

Some of the early stage women appear to be petrified as it is. I think it is a personality thing. Some want the knowledge others don't. Damned if you do damned if you don't. Most of the time I want the knowledge and isn't that what "awareness" is all about? Knowledge?

Lisa, I have found that the squeaky wheel may not always get the grease but at least it is heard.

I have a big mouth and sort of enjoy confrontation. Goes with my philosophy of "if you're not making waves, you're not rowing". I am happy to work with you in any way I can to be heard on this topic. Talk to me here or through PM. I am trying to make some waves here in NH.

Here is what happened at the AM Cancer soc.making strides for BC walk yesterday. I went to make a point. I wore my "BC is not: pretty, pink, only for Oct." sweatshirt and my MBCN t-shirt which says "Fighting for treatment to extend life". I went to the survivor's tent and signed up expecting to be offered the pink survivor ribbon and pink carnation that I had seen other women carrying. I guess the woman was in shock when I flaunted the MBCN shirt cause she stood there with her mouth gaping. Sometime later I met two lovely young early stage gals who cared and were interested in listening. They got my neighbor (also BC survior,not mets) and I a pin, the ribbon, the flower, a travel mug and a special pink Annalee collectible mouse. Everything the others had gotten. Well, my brain is going "who paid for all this stuff and wouldn't the money have been better spent for research?" Well I digress.

The cherry on the sundae is they took my business card and offered me an education booth to promote stage IV Mets at next years walk !

So now I have two goals . . . .a year to put together valid info to get our message out  . . . live long enough to do it, ha,ha!

thepinkbirdie

Is this anything close to what some want on mets info?

There just seems to be so much info on this site that I sometimes find it hard to locate what I'm looking for. 

spar2

If you go to home page and type in stage IV there are all kinds of articles you can read from bco about stage IV.  Hope that helps some.  You should be able to get info from the stage IV ladies who post here also.  There have been several threads at one time on social security and know everyone who is stage IV qualifies and everyone I know got it really fast.

thepinkbirdie

crap... i meant to include this...

http://www.breastcancer.org/symptoms/types/recur_metast/index.jsp 

pitanga

Marie,

Thanks a lot for posting that link. Actually I had not found that information before.. this site is a bit of a labyrinth.

I looked at it. I think it is better than nothing but pretty vague and quite a bit of it is just common sense or could apply to any stage ("you can have friends bring you pre-cooked meals and put them in your freezer for when you aren't feeling well" "you and your doctor will need to come to an agreement about what kind of treatment plan to pursue"). I think often people want specific information--what kind of test is good for detecting what kind of met, when a biopsy is feasible, what types of mets can be helped by radiation, what terms like "no evidence of disease" mean, etc.

Spar, thanks for the suggestion. I know it is possible to find things in places like research news and ask the expert forums. I was putting a plug in for having organized in a less haphazard way.

Lisa