Stage Less than 4 Woman...Here's YOUR place..

Anonymous

gama, there are advantages and disadvantages to either surgery.  Have you spoken with a breast surgeon yet?  What was the surgeon's recommendation on how to proceed?  Have you spoken with a plastic surgeon?  You can have reconstruction with either lumpectomy or mastectomy if you choose to. 

You are currently at the most frightening and overwhelming part of this.  Once you start making those decisions (and there will be a lot of them) and actually start your treatment plan, things will start getting better.

In the meantime, if you don't already have a prescription for an anti-anxiety medication that you can take on an as needed basis, get one at your next doctor appointment.  Any doctor that you are seeing to deal with this diagnosis should be willing to prescribe something (like Xanax) to help you get through the rough days/patches.    

It does get better, it really does, and Stage 1 DCIS is a good point to have caught things at.  It is enough of a diagnosis that your case will be taken seriously, but DCIS by definition is not invasive.  There are over a thousand topics on the DCIS forum alone.  That might be a good place to start your research.

Take a deep breath, keep putting one foot in front of the other, and I promise you that you will get through this.

Moderators

Hello All, 

I'd love to see if we could put this issue to rest. Is there something that I can do to help people forgive and forget and simply move forward, remembering why we are all here?

In need of peace for all,

Melissa  

KATIEKAY

AMEN

AnnNYC

Amen here, too!  I agree with Member-of-the-Club -- I don't think there is anything inherently "divisive" about having sections labeled for particular topics, or for things people have in common.  There are all kinds of ways to participate and post here.  A big tent, if you will.

Moderators

Problem is, is that there seemed a need to help people meet other people who are in similar situations. That is, if you have just been diagnosed, you want to meet others who are in a similar point, not 5 years out. Or, if you are 33 years of age, you will identify more with women in your age bracket, then a 75 year old. So, more and more requests have been made and many, many people have thanked us for this. It will not suit all members, but without the categories, I fear mayhem in here. 

Any suggestions?

Thanks, 

Melissa

AnnNYC

Meissa, I think Member-of-the-Club, KatieKay, and I were all agreeing with you.

hollyann

Moderators is there any way to get Dtr Kathleen Ruddy off the boards?.....She is only on here for her own agenda and that is promoting her book and reasearch for an MMTV that supoosedly causes breast cancer....I mean seriously...IF a virus caused breast cancer we would have had a cure a long long time ago............This is sickening to not only me but to many her on the boards.....Thank you in advanced........

cmb35

Melissa,

First of all, as always, thank you for all you do.

I agree having separate forums helps people connect. There are different types of breast cancer, and they act differently. Cancer in general impacts you differently when you are at different points in your life. The forums make sense.

I think the latest issue is one of trying to control people from making insensitive comments. Unfortunately, I don't think any forum structure, description or rules will help with this issue. There will always be people who say dumb things, either innocently or intentionally. Whether it's a stage I woman posting a question on a stage 4 board that is insensitive or a person who posts about the loss of his pet turtle on a grief discussion board where the majority of posters have lost a parent or a child, people will say stupid things.

I think the only suggestion is what has already been done - a better description that hopefully, someone will notice/read before they post and the good old ignore button.

Mazy1959

Melissa,

If we need more forums to make it more peaceful here...I say do what you have to do. I think new members would be more likely to use and support this site if they felt a common bond early on. I am 50 and although I talk to any age, some people feel more comfortable having a mentor in their own age bracket.

There will always be some goofball out there who gets their kicks from causing trouble. I doubt we will ever be completely free of that.

I think you are doing an amazing job in handling all this. Hugs, Mazy

apple

moderators.. Melissa?

first of all thank you.. this forum is excellent and i applaud your firm yet light handed control that enables this place to run smoothly and allows opinions yet stifles the exploiters (particularly),

i think it a wonderful idea to post a 'notice' in the stage IV forum, discouraging random and inappropriate postings.

i might reword it to specifically deter those who are new (newbies, noobs, nubes) from posting insensitive or innappropriate comments... perhaps changing the second sentence.... 

"This is a forum is for women who are braving more treatment and managing the ups and downs of a stage IV diagnosis. Please respect their very special space.  There are forums that may address your specific concerns... just click on forum index in the upper left hand corner of the toolbar to find a forum that may address your needs . Thank you for your sensitivity."

something like that.

Many of us have been helped by our stage IV sisters and may want to offer congratulations, support or condolences.  i don't think that it is the wish of the forum (or the stage IV sisters) to overtly or completely exclude any participation in their forum, but i don't know.........i'm just supposing and addressing my own specific need.

Perhaps they do want to a totally private forum and i am of course totally cool with that and only posting this suggestion in an attempt to be helpful.  I certainly want to be sensitive and respectful.  Just today I was reluctant to offer prayers for Saint.  She has helped me so much.  I suppose i could have prayed privately but wanted to add my support to a thread that was started in the stage IV forum.
Diagnosis: 5/10/2008, IDC, 5cm, Stage IIIc, Grade 3, 4/9 nodes, ER+

Anonymous

Greetings Jader,

I have not posted in awhile...busy as many of us are. I logged on today and read your question regarding a forum for Muslim women and since I requested the forum I thought I should answer.

In no way was my desire for a Muslim Women's forum an attempt at being divisive. I was newly Dx and had concerns about fasting Ramadaan and taking supplements, prayers, children, husbands, in-laws,  charity, wills, etc. All were not exclusively Islamic but the method of approaching each situation would be.

Please do no interpret my desire to converse with women of my faith as a call for separatism. There are far too many knowledgeable and caring folks on BC.ORG for that to be practical or beneficial. 

Prayers and warm wishes to all,

Carole

 

AnneW

My only concern with this plethora of forums is that it makes it really hard to find information. Several different forums will have the same topics going on, and each has pearls of information. New people won't really know where to begin. Hell, I don't know where to begin at times.

I do get the reasons behind the individual forums, but it's getting a bit unwieldy.

Anne

otter

Anne, you're right.  When I first read your post (above), I typed a reply saying that I wasn't worried about losing important information just because of the myriad of forums (there are 58 forums!). We have quite a few forums with very specific names, which helps a lot.  Sometimes it is hard to find threads on topics that don't fit in very well (e.g., H1N1 vaccine, bisphosphonate SE's, things NOT to say to a cancer patient, how to deal with super-curly post-chemo hair).  The "Search" function works pretty well for finding things; and if all else fails, I guess someone can just start a new thread.

Sometimes the threads we need aren't in the logical places.  Sometimes someone will start a new thread just a half-page down from a thread in the same forum, on exactly the same subject. And, sometimes someone will post a question that was already answered just 3 posts above, in that same thread. 

Earlier today, I responded to a question about Mondor's "disease" (truncal cording) that had been asked in a post in the new, "Stage I and II Breast Cancer" forum.  The title of the thread containing that post was, "Calling All Stage I Sisters." The "Calling All Stage I Sisters" thread has been extremely active -- it was started one week ago, but already has 9 pages containing 242 posts.  From what I've seen, the majority of those posts are conversational -- it's a place for social interaction, mostly.

So, why would someone post a question about Mondor's disease there, where it would get lost among the posts about losing weight and pumpkin pie recipes and coffeemakers and fear of an upcoming chemo treatment?  Here's what the person said in her post: "It was suggested to me by another poster to do a search on BCO, and I will, but would like to hear first hand experience from any sisters."  (She was directed to the Lymphedema and/or Reconstruction forums.)

Where was I going with this?....  I think there is no way to organize or structure a discussion board so that information will always be easy to find.  We have forums with specific names, but people post questions relevant to those forums in completely unrelated places, sometimes because they want to ask a friend first.  Most of the demand for new forums seems to have been to satisfy a desire for social interaction.  That's terrific, unless people forget there might be a more appropriate (and helpful) place for a specific question about the SE's of Arimidex, or chemo-associated folliculitis, or ... Mondor's "disease".

Actually, I really like the proliferation of forums on this site.  It makes it easy to find a niche for a question about almost anything ... as long as you use the tools and architecture of the site to find that place.  One of my major gripes with other "support" sites has been the small number of forums, which results in threads on specific topics getting buried very quickly. Here, at least, there are enough of us around (59,000 members!) that someone can redirect a question without much delay.

And, I know... this post has nothing to do with the topic of this thread. 

otter 

otter

NEWSBREAK:  Our BCO Moderator(s) (Melissa) has been very busy lately.  The subheading for the Stage IV forum has been changed since last night; and that disturbing thread, "New Start", is gone.  Here's the new-and-improved heading:

Forum:  STAGE IV BREAST CANCER SURVIVORS

"This is a forum is [sic] for women who are braving more treatment and managing the ups and downs of a stage IV diagnosis.  Their caring supporters are welcome as well.  Thank you for respecting their very special space and for your sensitivity."

The sentence about "caring supporters" is new, and it's a great relief, IMHO.  Now, at least we know it's okay to tell someone who's having a difficult time that we're thinking of her and holding her close in our hearts.

otter

Jan244

I have to say the new wording for the Stage IV Forum makes a lot more sense than the original one.  I happen to be Stage IV.  I don't post often, but I log on to read once or twice a day.  Because I am a "new" member I didn't get involved in the whole discussion on this subject.  Personally, I didn't and don't take offense to who posts or what they post on whatever thread as long as the posting is not meant to hurt someone.  I think the majority of folks on the BCO Forum know better than to tell anyone, whatever stage they may be, that thinking positively will prevent mets, etc.  I hope that everyone who wants to post in the Stage IV forum will do so without repercussions from anyone.  I'm still at the point when anyone asks "how are you doing?" (using a tone of voice that says "whoops, she's probably on her way out") I simply reply that I am doing "just fine, thank you".  Can't write anymore since my dog is literally sitting at my feet whining to be fed.  How do they know how to tell time?!

Cynthiadi

My gosh;

I am new for the first time on the board.  I was diagnosed with infiltrating ductal carcinoma of breast grade 2 state 2a.  Is this the correct site.  I am her2neu positive.  Had 4 rounds of chemo started throwing up blood so onc asked me to go get an ecd or whatever you call it.  They found out I have a bleeding ulcer.  The onc stated if i did have it she would stop me from taking chemo but still take the herceptin.  So I went back and she still wanted me to go throw with the chemo not having but 2 more rounds to take.  So I got another oncology opinion and he stated since my tumor cells was only from 0.5cm to 1.2 cm he did not think i should have taken the chemo in the first place but he advised me to continue taking the herceptin for a year so I took his advise and continued herceptin with him.

lexislove

Cynthia,

Just recently there has been new forums opened. There is now a Stage 2 forum and there is also a Her2 forum for us Her2 gals. Just scroll down the forum listings.Or click on active topics and you can see for youself. I think there is something for everybody!

Welcome to the boards, although, sorry you had to be here!

Anonymous

  I saw a few other Stage lVers on here, so hope I am not breaking any rules or boundries by being on here.  I find this whole deal with the arguing and bickering amazing....it's like a tennis or pingpong match, your serve.  I don't know most of the offeneders they are talking about.  There are some other threads that make reference to them also.  Being banned from a message board!!  I find that unbelievable.  There are so many big things going on, why get upset over something so small?  I do not feel that I have to deal with anything any worse than what those who are Stage l, ll or lll have to deal with.  We all have cancer so the way I look at it, we are all in the same boat.My boat may have a few more holes in it, but I am still afloat.   Just like freshman attending the same HS as the seniors.  I personally think it is probably a lot more scary when you are just diagnosed than it is to have been dealing with this for years where you sort of get used to the up and down roller coaster ride. After my initial diagnosis, I thought every ache or pain was the cancer coming back.  Yes, I still get upset and think "this is it" when there is a change.   I was upset (more disappointed really) when I found out the other day that my tumor markers had gone up.  But with me I always find that if I have a few days to think about things and am able to sleep on it, I am always back to reality and realize that I am really no different than I was before I had the test run. 

   I hope you don't mind me using your post as an example Janice,  I think it was a very good post and that you care or you would not be writing and you make some very good points.  However in your post when you were talking about women on the Stage lV forums and you said that you are not dying.  I hate to correct you on this, but you ARE dying. Not today, but one day in the future, hopefully the very distant future.  We are ALL dying because no one lives forever.Life is terminal.  You are too hard on yourself.  You DO ( or did since treatment is completed) have the right to whine and complain about the SEs of chemo.  Just because you are Stage l does not make your SEs any less than someone who is Stage lV.  Maybe I am a freak or something or have screwed up thinking, but I honestly do not feel I have it any worse than any other person with cancer just because I am Stage lV.  I know that some of the women have so much going wrong for them, pain, disability due to cancer or treatment.  I am always impressed by how strong they are and how they just keep on going and don't give up and in spite of their own problems, they always have a kind word or helpful advice for others.  That is what these boards are for or at least what I always thought they were for.  Regardless of Stage, we are all in this together and should support each other and not be bickering and getting upset if someone who is not at the same place you are in life accidently hurts your feelings.  I will admit that there have been some pretty nasty retorts and it really shocks me because it is all really stupid and I think Wow, don't they have more to worry about than getting in the last word.(but as I said I find it rather facinating and do read all this stuff instead of just ignoring it)   So far as leaving the boards.....if you want to leave, leave, but if you feel you are being forced to leave because of something someone else said, forget it.  They will then have accomplished what they wanted to do.  Dont let someone drive you away.  You have as much right to be on here as anyone else. Just as we are all entitled to our own opinions.  This is a free country.  I may be upsetting some other Stage lV women and if so I am very sorry.  I am not making light of our situation, I just myself do not feel like a Stage makes me a victim or any worse off than someone else.  Cancer is something I live with. There are people who have to live with diabetes or epilepsy or something else.  I posted something similar to this before on How has cancer chaged your life? or some other thead like that so forgive me for repeating myself. This is how I feel and I don't expect everyone to agree with me.  It's sort of like an AA meeting   Hi, my name is Marybe and I have cancer.  Yes, I do and so do we all, regardless of stage.  I hate to burst anyone's bubble or make you think it is hopeless, but there is NO cure, you know.  And the fact that you are Stage l or in remission or NED today, does not mean you are going to stay that way. Don't take this the wrong way, I am happy for you and each victory you celebrate is a victory for all of us.  We have cancer and we need to support one another and help each other fight this disease,NOT fight each other.  Sorry if I intruded by posting on this thread.    I also think it is wrong that if you aren't Stage lV, you have to be afraid of posting there for fear of saying something that will hurt someone's feelings.  Maybe I have just been dealing with this for so long that my skin is thick, but I know or would hope that no one intentionally is out to hurt anyone.  We all have opinions and it's nice to share, but don't expect everyone to agree with you.  I am Stage lV, but I don't feel any different than the rest of you....think probably my age sets me more apart from a lot of you than my cancer staging.  So anyone who feels like writing me, please do so.  I promise not to report you or get upset. 

thepinkbirdie

 so true...

"We are ALL dying because no one lives forever.  Life is terminal." 

Marybe - Thanks for posting this.  I could worry myself sick (and sometimes do) about where my cancer will take me and/or that it could take a turn and kill me next year.  But, I have to remind myself that I could be killed today in a car accident, hit by a bus tomorrow, murdered next week, have a heart attack tonight, etc.  Or die from some infection as a result the darn stitches opening up on my dang foob.

No one is guaranteed tomorrow.

Jaybird627

Wow. There sure are a lot of posts here!

Lexi, I've never 'seen' you be anything other than supportive here.

Jader, your post on Nov. 8 was right-on, there are way too many threads on this site now (many, many more than when even I came here a few years ago) and I think it can make us devisive.

AnneW, your post of Nov. 13 was right-on also.

Someone mentioned that the stage IV ladies have it harder than us non-stage IV's which I think is crap. Maybe they'll die from BC, or maybe not. Maybe us non-stage IV's will also become stage IV or maybe not, or maybe we'll get some other disease and that one will be terminal or we'll die tomorrow unexpectedly and leave young kids and a spouse or maybe some of us have OTHER crap going on in our lives (like, dying friends/relatives, etc.) so the "my BC cancer stage trumps your BC cancer stage" really pisses me off. I'm sorry that some of us here are stage IV but some others of us have lived through bad things that others haven't and cannot fully appreciate so maybe we can all become a little more tolerant of our BC 'sisters' and just gang up on the trolls?

As for crocs, I personally won't wear a petrolum product on my feet that was manufactured in China. (JMO)

pissed

I have been told at least 3 times by DR's I am near dead but i am still hear.....I haden't counted on a cancer diag.

moborn63

MERRY CHRISTMAS EVERYONE

cookiegal

Otters point is well taken. When I have a general post, say decision making, or insurance issues, do I put it in IDC, 1's and 2's, middies?

I try to keep IDC for more medical things, middle age for more social, and 1's and 2's for,,,hmmmm I see the point!

mimi1964

It is a very sad thing to me that even on a board such as the breastcancer.org people can't get along and offer their support fully to others.  We are all sisters and maybe even a brother or 2, that have a few things in common:  #1 we all have breast cancer, #2 we all have questions about our cancer and the treatment for it, and #3 we all have some fear in us of progression of our cancer either now or at some point and are curious and want to know what the possible signs or symptoms that could indicate that progression are and how others are dealing with it and how they are being treated.  This is a supportive board, but also a board for learning an educating ourselves.  I pray that their will be resolution. 

Merry Christmas

LINDAGARSIDE

Hello.  I'm new and I sure hope I don't make a mistake and comment on a site that I'm not supposed to.  Until I have my surgery I actually don't know my "stage"...or at least that is what the surgeon said to me.  I'm as afraid as I've ever been....and at the same time I'm still in dis-belief I think. 

I hope you are not so angry any more and have gotten past the blunders people often make.  I guess just because we have BC doesn't mean were perfect...right?  LOL.  Take care.

LINDAGARSIDE

Hello, Anne

thank you for your note and Merry Christmas.  I do not yet have a date for surgery but I had an MRI done yesterday.  I hope they share the results of the MRI with me soon...the waiting part as you say is just driving us batty.  I am on a roller coaster ride for sure.  How are you and when did you have your sugery?  What type of surgery did you have and what stage did you get diagnosed at?  I'm sorry to be so snoopy but for some reason all of a sudden I need to know everything about everyone and try to understand how I fit into this puzzle.  My kids are here for Christmas and we're having a good time.  They all went out for a walk (no, I didn't go...my hips/joints seem to hurt when I walk too far and for some reason I can't keep up to everyone...I walk pretty slow. Naturally I'm imagining that the cancer has spread all over my body and they are going to look at the MRI results and call me and simply say "forget it"...we don't need to do surgery on you.  It's far too late and the cancer is everywhere.  Just sit back and try to enjoy the rest of your life.  We'll give you pain medication when you need it.  Or...words to that effect.  Sorry to be morbid...just feeling blue I think.  Thanks for listening.

LINDAGARSIDE

Hello, Anne.  Thank you for your response.  Yes, you are absolutely correct...I should not try to get ahead of myself.  Sounds like you are in quite a waiting game as well.  Did you have an MRI done?  I'm curious about your type of BC as I'm not familiar with it at all.  I suppose there are so many kinds, right?  What is a BSGI?  My daughter has a sister-in-law (age 40) in Calgary Alberta.  Her immediate family are all surgeons.  In October she found a lump and rather than do a biopsy...I think they did exrays of some sort...she had a double masectomy!  I just couldn't believe it.  They tested the lump and it was cancer and I believe it was IDC...but thankfully nothing in her lymph system.  But still...both breasts?  Initially I was thinking "get rid of them" as well...but my surgeon told me if I have a lumpectomy and radiation I will have an 8% chance of it returning.  If I have a masectomy...I would have an 8% chance of it returning...so I'm going for the lumpectomy.  Is this what you are waiting for?  Where are you living?  Why does it seem to take so long?  I'm living in BC, Canada on Vancouver Island (Victoria).  There seems to be a good system in place for cancer patients.  I've already had contact from the breast centre and received a special pillow to put under my arm after my surgery as well as a step by step booklet of what to expect when I have my operation.  Quite amazing really.  I hope to hear from you soon.  Anne, I will pray for you as well.  Thank you for your prayers.  I believe in God and in the power of prayer and have great faith.  I wish I had more courgage at times...but oh well...I'm trying.  Next time I write I will tell you how I even got booked for a mamogram.  It includes being taken to the wrong place by a cab driver...  LOL....

LINDAGARSIDE

Hi Anne,

I took a cab ride to the urologist in mid November and the cab driver took me to the wrong building.  I didn't know I was in the wrong place until I couldn't find the name of the urologist anywhere on the board.  I walked around a bit, looking for another board of names and came across a sign on top of a door and it said "Mamogram".  It was as though the sign was talking to me.  I walked in and booked an appointment for the following week and the receptionist told me the urologist was half a block down the way in another building.  The cab driver may have saved my life by taking me to the wrong place.  I honestly believe God had a major hand in all of this...and I am truly thankful.  By December 18th I had the biopsy results back showing I had IDC.  I am now awaiting surgery.  I had an MRI done the other day.  Amazing...isn't it?  How did you find out you had a "pre-cancer" condition??  Were there changes happening in your breasts??  Did a mamogram tell you this?  Is breast cancer in your family?  It isn't in mine at all, on either side.  I am the first.  I am the third eldest of seven children and out of the seven of us, I am the fourth to be diagnosed with cancer.  Two sisters had cancer...one had a tumor on the side of her liver and the other had cancer of the anus.  Both are now cancer free...about 5 or 6 years.  My eldest brother is battling cancer but his is very serious and he had a stem cell transplant in June.  So far...so good.  It is kind of crazy as we were all so healthy until about 7 years ago when the one sister got cancer...and then boom...it seems to be one after the other.  My mother is about ready to pull her hair out...dear thing that she is.  LOL.  I look forward to hearing back from you.  Prayers and hugs your way...Linda.

LINDAGARSIDE

Hi Anne, it's me again, Linda.  I got my MRI results today and everything seems good.  A benign looking node in my left breast (cancer is in the right breast) and so I have a hunch they will do a biopsy over on the left as well as the right when I have my surgery which is....  yahoo.....January 8th at 12:45 p.m.  thank the Lord!!  And thank you for your prayers...take care....

LINDAGARSIDE

Anne, the last mamogram I had done (before the one in November that identified the cancer) was in Feb 2007.  Yes, it's almost 3 years ago.  I usually go every year but I moved and didn't get a reminder and it totally slipped from my mind.  So many things were going on with my family I just didn't think of myself if you know what I mean?  Anyway, that's all behind me now and hopefully the tumor hasn't been there for 3 years.  I have no idea how fast these things grow...do you?  It will be interesting for them to see what stage I'm at.  I am guessing they will know right after the surgery?  Here in Victoria they operate one day and you are home the next.  I wouldn't mind staying in the hospital a couple of days...TV in bed...meals in bed...someone to make my bed...I could get used to it.  LOL.

Thank you for your support.  When will you know if you need surgery or not?  Is this something that you have to decide or are you playing the waiting game?