just started treatment for inflammatory breast cancer

gloriap

on oct 28th i was diagnosed with this cancer.I had breast reduction about four years ago, so all the changes i had with the breast i thought was due ti scar tissue.i did go for mammogram which ace back negative.but when i started with the itching and burning i know something was wrong. i called my plastic surgeon who had me come to the office immediately. he then sent me to another surgeon.who also had me come to the office stat.when i walked in to her office and so all the breast cancer awareness.it confirmed my worst fear. by the end i=of the day my poor husband and i was in shock.him more then me because i was living with this notion for awhile.the next day i met with the oncologist.and had a week of test. by the second week i started chemo.my cardiologist was eve involved because i also have a diagnosis of cardiomyopathy i have d pacemaker difibrulator .treatment w=is chemo to shrink the tomor,surgery, than radiation, i just finished my frusta series if three chemo then one week off..it is 4am in the morning i cannot sleep even with the rx ambien .the house is so quiet and i just needed to tell my  story.i have a lot of questions.i have all my reports.rit=ght now ido not have the courage to read.my daughter is coming in on thursday.so i will have her put it together with me.i just need totell my story.my daughter gave me this site.i hope it is the right place thanks for listening.

BarbaraA

Awww Gloria. I am so sorry you are here. But this is a good place to come for advice, support or just to rant. I am sending you cyber (((HUGS))) and I am sure someone with IBC will be along shortly to help guide you through the tx for IBC. Gentle hugs for you.

leisaparis

Gloria, So sorry you have to join our little (not so little) group. Everyone on here are the greatest support you could ask for. We have either been there, done that, or are doing it. There are a lot of us IBCers on here. I know I couldn't have asked for a better place to be when I first started going through this crappy section of my life. They are wonderful. They know it all, and if they don't they will even look it up for you and give you an answer. I couldn't have made it without them. My family was great, but they really didn't have a clue as to what I was really going through. Good Luck and God Bless. Sending big (((HUGS))) your way. Leisa

lorieg

Sorry you have to join us.  Check out IBCsupport.org for useful information.  In general this board is great, but this IBC site is usually people posting who don't have IBC but are worried they do.  Everyone on breastcancer.org are very supportive but for more IBC specific info and activity check the site above. 

 Hugs,

Lori

leisaparis

I've gone to the IBCsupport.org sight and I have to say. I prefer this sight much better. There are a lot of IBCers on here. I find it hard to manouver around on IBCsupport.org. Just my opinion.

lorieg

Leisa,

I love this site for support and general breast cancer info/treatments/experience, etc.  However this particular forum for IBC seems mainly to be used by people who are worried about having IBC.  Thankfully few actually end up being diagnosed.  I do think helping these women out is VERY important, however I feel that posts from people who actually have IBC get lost.  I wish we had a "not diagnosed but worried" forum at the top of the IBC folder to seperate the posts.  I mostly read and post in the stage IV forum on breastcancer.org.  Just my two cents.

 Happy Thanksgiving!  I hope you are doing well!

Lori

marium

sorry  to hear that,my sweet mom got ib  too..i wish my mom  n all the patients of ibc come back to there normal life.amen 

ibcmets

I've checked a few sites and would have to agree with Lori.  ibcsupport.org is extremely knowledgeable about inflammatory. I mainly post on this site on stage IV as well  and inspire.com.  This site has a lot of sub catergories because we often find ourselves researching in a different topic like surgery, reconstruction, stage IV, newly diagnosed...etc. I  do have inflammatory as well as bone mets.  I check this post often just in case some one has questions. 

Terri

cdicks

I was diagnosed with stage 3 IBC on Sept. 13/10. I found a lump in my breast while taking a shower on Aug. 21/10. I feel very fortunate that my doctor acted right away and sent me to a breast specialist within an hour of seeing him. My mass did not show up on any of the imaging tests. I was given a needle biopsy which confirmed my diagnoses. On Sept. 14/10 I saw an oncologist in Victoria, BC. On the 15th I had a CT scan and on the 16th a bone scan. I had my first chemo treatment on Sept. 17/10, my 37th birthday! It was a very overwhelming week for my husband and I. I hadn't even had the chance to talk to my two young sons (8 & 4) un til after my first chemo treatment. I am currently having chemo and will soon start my radiation treatment. I am HER2 pos and am also receiving Herceptin. I will have a double masectamy after my radiation is done. I don't want the risk of developing cancer in the other breast. I have been doing weel so far with my treatment but am always tired. When I found my lump it was approx 7cm and by the time I saw the onc it measured 20 cm by 14cm!!!!! It was very aggressive. I am happy to say that it is now 6 cm by 10cm I am hopeful that I will beat this and be here for my boys. I keep a positive attitude but it is still very scary. It will be nice to connect with others who understand what I am going through. The cancer society has a program called "Cancer Connections" where you are matched with someone with a close as possible withthe same type of cancer as you. They connect you by phone so that you have someone to talk to. I have made this connection with a person who is now 6 years cancer free (IBC) and I have found it to be very helpful. She has been able to answer so many of my questions and has been a great support. I hope this might help you too.