New to this post. Scared of when the "other" shoe will drop

Thanks, Beastybabe. I knew what you meant and I'm very grateful to have this wonderful venue to share my feelings with.

Hugs, Reen

Vibe from the Philipines...........I think it's deplorable that you are using this site to sell your products. Trust me.............if it was as easy as you make it sound.............to cure cancer by taking your bogus fruit extract, we'd ALL be taking it.  How can you be so dishonorable and fraudulant to people who are going through the most painful, scary time of their lives???? I just pray that NOBODY falls for your ridiculous claims.  You really should be ashamed!!!!!!!!!

Billiegirl, I read your post again and it sure does sound to me that you have IBC. You listed symptoms that scream IBC. I was blown away when you said that your doctor told you that "it didn't matter because the treatment would have been the same." That is absolutely untrue, but typical for "most" of the breast cancer doctors out there.  Because IBC is so aggressive and spreads so quickly, the treatments are much more aggressive. Did your doctor do a needle biopsy? Has he/she ever even heard of IBC?  Can you get a second opinion?  There is another site that deals with only IBC.  Just google IBC Research. Everyone on there is very knowledgeable and compassionate and they can address your concerns. I'm guessing they will tell you to get a 2nd opinion as soon as possible. Please keep me posted. I hope you will check that site out. They answer ALL questions and address ALL concerns. They have Doctors that help answer our questions and these doctors HAVE heard of IBC. I swear, that site was (and still is) a life saver for me.............and I mean that literally. I was going crazy because I couldn't get a straight answer from some of the docs I was going to. Whenever I asked him to explain what this all meant, he'd look at me like, "don't worry your little head about it." I absolutely HATE that when they do that. I am a person who wants and needs to know all the facts about MY body. Maybe some people don't want to hear it, but the more informed i am, the better I feel and the more in control I feel. I don't think they understand how important it is to us to have "control" of anything, especially when we can't control the cancer or if and when it may rear its ugly head again. Here's an example of how my Onc talked to me. I asked him one day how he thought I was doing and he very flippantly responded, "well, if you're alive in a year, you did really good!"  I practically fell off the exam table. My sister was with me and her eyes were as big as saucers when he said that to me.  Needless to stay, I changed oncs right away, because that wasn't the only thing he did or said to me that made me feel invisible and unimportant. Anyway, I hope you will get a 2nd opinion and that you will check out that site.

Lots of hugs to all, Reen

HollyAnn: Thanks for your post. The reason I am afraid of recurrence after 5 yrs is because my breast surgeon, who is familiar with IBC, said that the chance for recurrence of IBC is extremely high, even after 5 yrs. He said that even though it's great to get to 5 yrs, statistics show that very few women with IBC survive that long and the ones who do, have a very high chance of a recurrance. I try not to harp on that and overall, I'm a very possitive person and believe that I will be here for as long as God wants me to be here.  Still.................I have my moments when it all gets a little overwhelming............ok a LOT overwhelming, and I have to take a break from all the people in my life who need and want me to be completely healed and have made it clear that they just can't handle any other outcome. It just gets so exhausting to have to pretend that everything is ok and when they ask how I am....................I say, "fine" because thats all they can handle. Although I understand their fear and need for denial, it would be nice if I had someone who would let me say that I am afraid sometimes. I guess that's what this venue is for and I'm very grateful for all of you...................not only for sharing your stories, but for also being truthful about how you feel and how scared you are and for allowing me to do the same.

EmiliasDance: Thanks very much for your post,too. I shook my head in agrement when I read what you said about how you can tell a Stage I from a Stage 3 because we are waiting for the other show to drop.And ohhhhhhhhh how I relate to you when you say that before you were dx'd with BC, a headache was just a headache..............achey joints was just a little arthritis..............and a sharp pain in your chest was probably indigestion.  But now it's a whole new ballgame and any of those symptoms could mean IT came back and that's so frightening.

And oh my goodness....................my family did the same thing. They call me on every anniversary and congratulate me that I've been healed and they can all go on with their lives again. And even though they don't say it.................and don't mean to come across this way, it's almost like they were blaming me for everything THEY went through because I had the nerve to be dx'd with such an aggressive, deadly monster of a disease. It's funny, but the more I think about it, the more I realize that they deal with everything difficult in the same way. Like when my Mom died a couple years ago, they immediately went into the mode of "don't be sad......don't cry...........don't feel down.............don't do anything but smile and say she had a great life and this is a time for celebration. Well, I needed to mourn my Mom and cry and think about how much I was going to miss her and take some time to sort out the million emotions I had. This aggravated most of my siblings.  And I'm not talking 2 years later...............they were telling me this on the way into the church for her funeral.  I mean//////////give me a break.

Oh and when you said how your doctor told you not to get info from the internet, I got the exact same thing from my Dr. When I came in with some questions for him re: IBC, he said, "how do you know so much about IBC?" I told him that since nobody would give me any info, I researched it on my own.  He just said, "Don't do that..........you'll only be depressed."  I don't know about you, but I WANT to know what is going on with MY body.

 Billiegirl: I am just absolutely floored by some of the things you have gone through and all the wrong info you were given.  I am especially floored that they did not diagnose you with IBC. By the way, I didn't have a lump either. I had what they call "sheets" of cancer. Two weeks before I was dx'd I had a mammogram and was told everything is fine. Then BAM, I go to the doctor and my entire world was turned upside down. It wasn't until they did the punch biopsies (and let me tell you THAT HURT LIKE HELL!!!!!) that they saw that cancer was raging through my left breast and in all of the lymphnodes in my left arm and left side.  I'll tell you one thing I am still sooooo angry about and that is that when they did those 5 punch biopsies, they didn't give me ANYTHING for pain. He just said, "Don't worry, it will be done before you know it!" I really really wanted to say to him, "how bout we do 5 punch biopsies on your penis?" But I didn't. When I got in my sister's car in the parking lot, I balled my eyes out..........not only because I was just dx'd with a form of BC that I had no idea of, but mostly because it truly hurt me to the core of my soul, that he put me through cruel, unnecessary, grueling pain, when he could've given me something for the pain. To this day, that bothers me sooooooooo much. Our breasts are already very sensative, so imagine them doing 5 biopsies on the nipple and the surrounding area. That was excruciating.

 And what they told you about BC not causing pain or making you feel sick...........that is also very untrue. My breast hurt like hell. It was swollen, hot to the touch, very hard, inverted nipple and was extremely painful. Yes, maybe some people don't have pain, but I don't know anyone with IBC that didn't experience pain before they were dx'd.

And lastly, BillieGirl:  You are NOT sounding like a victim or a complainer or negative. You are just being honest about what you're feeling and there is absolutely NOTHING wrong with doing that. We can't talk to our family and friends about it, so this venue is really the only place some of us can share absolutely every feeling we have without feeling guilty because God forbid...... we don't want to cause others any discomfort or worry.  So,. BillieGirl and everyone else on here, GO FOR IT..................It's therapuetic and very healing not to stuff your feelings down inside where no-one can see or hear.

Sorry for such a long post, but I wanted to respond to all of your posts. Thank you again for your encouragement and permission to "LOSE IT" once in a while.  You guys are my safe place to fall, and I am so grateful to all of you.

God bless you all and here come some BIG hugs for all of you!