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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited March 2008

    Joan,

    My IBC looked like a mottled purplish-pink color.  When it first started it was red, hot, swollen, extremely painful.  After taking antibiotics, and then doing IV antibiotics in the hospital, the hot swelling went away.  My breast gradually changed to the purplish-pink color, but it never went down in size.  It gradually got bigger and bigger.  It felt like I had a hard baseball in my breast.  Also, the skin changed, it got thicker, and I had the classic orange peel texture skin.  I hope the dr's can figure out what is going on, and I really hope it isn't IBC.  Do keep us posted!

    Shelly, thank you for sharing your story!  I love your picture, you have such a beautiful smile!

    Nixie-Your post is great! You made me laugh.  Your attitude is inspirational!

    Denise-Thank you for telling your mom's story.  I hope everything goes as well as possible with her remaining treatment! 

  • IBCSHELLY
    IBCSHELLY Member Posts: 5
    edited February 2008

    Joan, I would definitly follow up with your dr.  I know with me my rash seemed to get worse rapidly.  My nipple also started to change- flatten-  I had flaky skin as well.  Nothing improved it, I applied lotion daily.  Although my lump was visiable by ultrasound and mammo, they said it did not have the typical characteristics of a cancer.  It was a mass however and could be seen by the tests.  Your case sound different, but I would keep in touch with the dr, especially if swelling does not improve.  I might also consider a second or third opinion if your dr. does not seem concerned.  Have you checked out photos of IBC on internet.  The internet is very scary to read, but the photos might help you.  My breast never looked as bad as the photos but it was helpful to see what the rash looked like.  Also I had a thickening of the skin and the area got bigger rapidly.  Hope this was helpful.

  • NONE
    NONE Member Posts: 10
    edited May 2008

    SHELLY AND SUNNEE,

     THANKS FOR ANSWERING. MY BREAST DOES NOT LOOK ANY WORSE THAN IT DID 2-3 WEEKS AGO. NEVER A RASH. JUST THIS RED BRUISED PLACE RUNNING DOWN FROM THE PLACE WHERE I GOT HIT. SWELLING NOT WORSE EITHER. I WILL KEEP IN TOUCH W/THE DR. AND HAVE AN APPT. THIS FRIDAY - BECAUSE HE WANTS TO LOOK AT IT AGAIN. HE REALLY THINKS IT IS FROM THE TRAUMA TO MY BREAST, PLUS I AM 67 AND WAY OVER THE AGE USUALLY FOR IBC + HAVE BEEN TREATED FOR TRADITIONAL IDC AND ON ARIMIDEX 4 YEARS.

    THANKS LADIES AND YOU WILL BE IN MY PRAYERS. DON'T KNOW IF YOU ARE BELIEVERS -- BUT I AM AND BELIEVE IN PRAYER --- SO IT WON'T HURT, RIGHT?  Wink

    GOD BLESS!

    JOAN

  • IBCSHELLY
    IBCSHELLY Member Posts: 5
    edited February 2008

    Joan- Thanks for the prayers, it is what lifted me up throughout this ordeal and kept my spirits positive. You will be in mine as well.

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    My name is Annette and I post as Tylenol (Ty)

    I am a 46 years old and I was officially diagnosed with IBC today.  Sorry, I do not know any of the terminology or anything else, however I can share how I ended up here. In December I had the feeling something was going on with my left breast but assumed it was just another one of my many cysts. I decided to wait until after Christmas to go for a mammogram. When I am premenstrual, my breasts tend to get sore and a bit larger however in January I noticed the left side did not get smaller and still felt tender. I started to feel a heaviness  and was uncomfortable sleeping on my left side at night.

    I hadn't noticed any redness until the nurse practitioner pointed out a red area that was hot. I was not sore but had the occasionally shooting pains (this sounds funny, but it feels like heartburn in my breast).  I was put on an antibiotic and sent for a mammogram and ultrasound.  After 7 days and no changes, I was sent to emergency to have a 10 day IV antibiotic treatment . Again nothing. I followed up with my family Dr., he told me he thought it was an abcess and I would have to go see a surgeon to get it drained. I was given another antibiotic.  My mammogram did not show anything but the ultrasound technician reported a mass he thought was cancer. My Dr. said he thought the guy was wrong and not to worry.  A week later I seen the surgeon, he took one look at me and said "You have IBC and we have to act fast."  He did a punch test and core biopsy five minutes later and scheduled me another appointment for today.  I seen him at 11 am this morning, he confirmed his findings and I was sent to the Cancer Clinic at 4:30 this afternoon.  He found a 9 cm mass in my breast and an area in my armpit. Tomorrow I start a whole bunch of tests so I can start my chemo next week.  I was told I will have an intensive chemo treatment (kind of scares me)followed by surgery and radiation.

    The rest of my story is yet to be told.  I would like to thank all of you, I was feeling pretty overwhelmed tonight until I came to this site and found this stream.  The sharing of your stories gave me hope that I can do this and come out smiling at the other end.

    With you ladies to guide me, my home will be a saner place because when I am in doubt, I will find my answers here from those who know what I am feeling. Thank you, Ty

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited March 2008

    Annette, I am so sorry!!!  We will be here for you!  You can do this, it is scary, but before you know it, you will be done with treatment and going on with life.  I am glad that you were able to be diagnosed fairly quickly.  Please post back if you have questions about what comes next, or about anything.  I will remember you in my prayers. 

    How old are your kids?  How old is your grandchild?  How is your family handling the news?

    Joan- Because you did indeed have a trauma to your breast, it sounds like it is a safe bet that it isn't IBC.  Sounds like your doctors are taking good care of you!   

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    Hi sunneedazee

    We have one daughter who is 33 (stepdaughter), a son who is 26, a daughter who is  23, got married last summer and whose husband is going for brain surgery for seizures in 6 months, and our youngest is 22.  The grandbaby just turned 2.

    I am hoping to get some answers about what is next this morning at a chemo treatment information class. Right now I am bit paranoid because until my tests are done and I know if the cancer is anywhere else, I think "OH, Oh!" everytime I feel an ache somewhere. It is quite annoying because most of these aches have been there for years.

    I will be happy when all the information is in and I can focus completely on chemo and getting through it.

    Thanks for your support.

    Ty

  • shrink
    shrink Member Posts: 131
    edited February 2008

    Sorry Annette for this overwhelming news.  You're not alone as you go along in your treatment.  I just finished last Friday.

    Joan - glad you're getting that checked today.  I got IBC at 66 but I hope you're in the clear.  You've already had enough.

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    Hi Ty,

    So sorry to have you join this thread.  It does help to have others to chat with that are going thru similar situations.  One thing that caused a problem for me is that I did not have a sentinnel node biopsy done prior to chemo.  My onc said it was not a big deal, but I had to switch surgeons before my mx and the second surgeon was not happy doing an axillary dissection based on pet scan alone.  The "good" thing is that I still had a .8mm positive node after chemo so the Rad Onc agreed to radiate the axiallary area. 

    I had TAC for chemo and tolerated it well.  My oncologist said that it is a more aggressive way to administer the usual A/C and T but that many people  have less problems with tolerating the chemo when given like this. 

    The best thing I did at the start of this journey was to go on anxiety meds.  I was only on them 4 weeks, but it allowed me to rest my brain at night and compose myself at appointments to be an active part of the planning.  I do not know if I could have done that without that help.  It is not uncommon for people to ask for this so do not hesitate if you feel this is something that might help you. 

    On a side note, today is my final day of radiation.  I have had chemo, double mx, 33 rads and will see onc Monday to start something to control the hormones.  My signature line says that I have IDC, which I do, but IBC is the actual diagnosis as those are the symptoms that started this and I am lucky enough to have both.

    Take care, rest when you need to, let those around you help as much as they want and do not forget to breathe.

    Stay strong,

    Diane

  • Unknown
    edited May 2008

    I think the general consensus (sp) on IBC is that it is already assumed to be in the lymphatic system due to the very nature of IBC making a sentinel node biopsy unnecessary.  They usually take at least the first level of lymph nodes in the armpit area when they do the mastectomy.  IBC is a very unique type of breast cancer and has its own protocol.

    They should radiate all nodal areas to include the axillary, subclavical and intermammary nodes in the median of the chest.  My rads field crossed a few inches into the non-affected side.  They should also be using a 'bolus' at least every other day to concentrate the radiation onto the skin itself.  This is a rubber mat they lay in the rads field that bring the radiation up to the skin level. 

    I am the Way, the Truth and the Life. Jn 14:6

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    Always Hope,

    Yes, you are correct.  IBC is automatic radiation tx.  I probably did not post in this area that my IBC went to tumor board as there were several factors leaning away from IBC...negative skin biopsy,

    antibiotics initially improved the symptoms, symptoms totally went away during my period..that was the big one ..as one surgeon concluded that my lymph nodes must have been blocking the normal drainage of the breast and during menses, the breast drains differently.  So, after my rads started, a tumor board had to make the call as it would decide if the superclav nodes would be done.  The Rad Onc did not want it done but once tumor board said it was going to be classified as inflammatory, it was not a choice.  So, the SN biopsy would have come into play in my case, certainly not all.  I had been told all along that my chemo and surgery would not change if the dx did as they went as aggressive as if it was IBC.  Rad Onc said he would not have done the superclav had it been IDC.  Clear as mud.

    So many different stories here.  I am glad we can read each others posts and help each other.

    Diane

  • nixieschaos
    nixieschaos Member Posts: 2
    edited February 2008

    Hey Sunneedazee!

    I am starting Taxol and Herceptin on Tues. how are you doing with it? Any side effects? I had my first treatment with Taxol, Herceptin and Proplatin. The next time I went in I started on Zomeda, Adryamicin, Cytoxin. Six treatments, and I just didn't like it!. Just before my first treatment, I got a second opinion from a leading specialist in Los Angeles, who consulted with my doc. Apparently, he had other ideas. My first treatment was my doc's plan...I liked her idea better.  

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    Hi diane     Wink

    I was taking anti-anxiety pills occasionally for anxiety attacks as a result from a car accident I was in a couple of years ago.  I agree with you that these pills have been a blessing since all of this started to snowball.  I usually take one an hour before any of my appointments so my stomach settles down and I can concentrate on what I am being told without being too distracted or distraught.  So far, I haven't needed to take them at night.  It is definitely working for me.

    Hugs Ty

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    Hello all,

    It is official, I am done with rads.  When I heard the beam turn off on Friday and the techs came back in the room, it was an amazing feeling.  I couldn't help but think "man I do not want to be back here anytime again".  I am seeing my onc Monday for the Tamoxifen vs. something else decision.  Stay strong everyone.

    Diane

  • NONE
    NONE Member Posts: 10
    edited May 2008

    SHRINK,

    YOU GOT IBC AT 66?  WAS THAT THE FIRST TIME YOU EVER HAD BC? 

    I WAS DX IN 04 AND TREATED W/ GOOD RESULTS........ UNTIL THIS THING CROPPED UP...... STILL HOPING AND PRAYING IT IS JUST FROM THE TRAUMA TO MY BREAST.

    I WOULD BE INTERESTEN IN HEARING ABOUT YOURSELF.

    THANKS!

    JOAN

  • shrink
    shrink Member Posts: 131
    edited February 2008

    Joan - I had no previous cancers.  The only other person to have cancer in my family was my father who died at age 59 of pancreatic cancer.  You can check out my story earlier on this thread sometime in October. I'm done with treatment for now except for an AI (ER+) which I'll be taking for 5 years or so unless I have a recurrence.  At this moment I'm Stage IIIc.  I sure hope your bruise is just from an injury.

  • NONE
    NONE Member Posts: 10
    edited May 2008

    THANK YOU,

    I WILL TRY TO FIND YOUR THREAD ...... I AM FINDING IT HARD TO FIND WHAT I WANT ON THESE BOARDS. I HAVE BEEN ON ANOTHER MESSAGE BOARD AND IT IS MUCH EASIER TO NAVIGATE ----- BUT I WILL KEEP TRYING.

    THE REASON I ASKED IF YOU HAD ANOTHER TYPE OF BC BEFORE IS BECAUSE  I HAVE BEEN TOLD IT IS VERY RARE FOR SOMEONE MY AGE THAT HAS HAD IDC/ LUMPECTOMY W/CLEAR MARGINS - NO NODE INVOLVEMENT/ RADIATION AND ARIMIDEX..... IN FACT THE SITE WHERE I ASKED THAT QUESTION SAID THEY HAD NEVER HEARD OF SOMEONE W/ MY STATS GETTING IBC.

     THANKS AGAIN FOR ASWERING AND I AM GOING TO TRY TO FIND YOUR OTHER POSTS.

    JOAN

  • lexi4
    lexi4 Member Posts: 59
    edited February 2008

    Congratulations Diane on finishing your rads!! Yay!! It's a great feeling! I hope you do well on your follow-up tx and stay healthy from now on!!

    Hugs,

    Lexi

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2008

    Diane:

    Congratulations on finishing radiation therapy! Laughing

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    Caseysmom and Lexi,

    Thanks !  I am really tired this week so I still feel a bit like a patient even though the rads are done.  Went in to see the onc on Monday and that was a bit frustrating/annoying.  My classification of IBC came from a tumor board.  My onc told me I had the most aggressive chemo, surgery and rad I could have.  He went through tmt options for the tamoxifen vs going on a randomized 3 arm study for tamoxifen alone, tamoxifen with an AI or exemestane with an AI.  The kicker, IBC dx would make me ineligible for the study but he would talk to the research group about putting me on it since the IBC dx is controversial.  UGH!! I know this is a hard thing to dx, but the yo-yo is starting to really stress me out.  He added that even if they were to down grade me to "just a stage 3" (what?  I thought I was still a stage 3 with IBC) I still needed the tmt I had because of the lymphovascular invoement.  I told him I did not think I had that and he said, Yes , you do.  I came home and pulled out my path copies and it clearly state states "lymphatic vascular invasion is not identified."  I am going to bring these along next week when I see him.  Does anyone know if that is lymph node involvement and vascular involement?  I did have lymph node involement but I thought vascular was its own animal.  This is getting long, so thanks for reading.  I'll keep you posted with what I find out but would appreciate any help you have to offer.

    Thanks again,

    Diane

  • lexi4
    lexi4 Member Posts: 59
    edited February 2008

    Hi Diane,

    I am kind of in the same boat as you. I was originally diagnosed w/ IDC. I had a small rash that was biopsied right after my mast. that was positive for IDC. Therefore, I was re-diagnosed w/ IBC. After reading and others sharing their stories w/ me, I was told it may be skin involvemet NOT IBC. But, my onc is sticking with the IBC diagnosis. The tx I had would have been the same regardless, except I probably would have had chemo first. My path report doesn't detect lymphatic vascular invasion, I believe, because there was no bc in the skin that was examined after the surgery. I am sure someone else will have more knowledge to help with your question.

    Let us know what tx your doc decides.

    Hugs,

    Lexi

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    Just checking in on Annette to see if you have started chemo yet and how you are doing in general.  The first few weeks I found to be the most difficult and the phone rang off the hook with people so concerned and wanting to hear the story from start to finish. 

    So, when you are up to it, come on board and let us know how you are doing.  Remember to drink plenty of water.  I know it is hard but it makes a big difference in how you recover from each treatment.  Flush that stuff out of you!

    Diane

  • IBCSHELLY
    IBCSHELLY Member Posts: 5
    edited February 2008

    Here I am 4 months out from radiation, it has still been an emotional rollarcoaster.  I have not had any reconstruction, not sure when or if even ever.  I'm on tamoxifen, but I feel so big and bloated.  I know I should be happy I made it through, count my blessings, but I'm dealing with work issues, I feel FAT, no boobs, low energy -I'm tired of not being me.  I know these are small issues in the whole picture of IBC, and months ago during treatment I had bigger things to worry about, it is frustrating not to feel so happy I'm at this point, I'm joining a support group for women in NED and hope I can pull myself from this rut.  Anyone else suffer from post treatment blues, or is it the reality of this sinking in finally!!!!  I guess I just want an ending to the worry and I can't find it!  Sorry to blog such negative energy, I felt stronger more positive fighting this monster head on than waiting for the other shoe to drop and in this limbo land of where is the new me.  Also any comments on tamoxifen and weight gain/loss. 

  • DianeE
    DianeE Member Posts: 30
    edited February 2008

    IBCShelly,

    Thank you for your honest heartfelt blog.  I am 1 week out from being done with rads and I feel exactly the same.  I was to be starting tamoxifen next week, but my hormone levels are showing that I am menopausal so I do not know if that will change things.  I talked to my onc about the weight gain and he said that tamoxifen does not cause weight gain in itself.  He says it is caused by a change in eating/activity levels of the people taking it from either depression or inability to do their previous level of exercise.  I am not sure if I totally believe that, but it does make sense.  I have read so many positive posts here and have been trying to be positive myself but then I slip into a funk of "why can't I be negative when I want to.  I have no boobs, no hair, an uncertain future and I am ticked".  My surgeon told us on our last appointment to watch the 2-4 month time frame from the end of treatment as people do have issues with depression.  For me, I at least felt like during chemo, surgery and rads I was fighting this disease and could grasp that there was decrease in symptoms and see a change in my body that meant something was happening to make me well.  Now that I am done with that part, I am scared to death the cells are multiplying each minute and it will all be for nothing.  I went to a 50th birthday party last week and others were all discussing how they did not want to be 50 and I stood silently praying, its my goal, its what I need, 10 years to see my kids graduate.  Stop complaining already. 

    As far as reconstruction, I am not planning on doing it at this point as I do not want to give any more time to surgery.  I am tired of being touched.  Would I like breasts, yes I sure would.  I have not worn the prosthesis for six weeks to let radiation heal and now I have people asking me when I am going to stop wearing my wig.  My wig is really nice, looks like my own hair and quite frankly, I want to continue wearing it for awhile.  I have always been a hair person and it makes me crazy that others are anxious for me to lose this too.  I know it is them trying to be supportive, but it makes me crabby. 

    Shelly, I have made your post look like a field of flowers compared to my crabby patty post, but it does feel better to be honest about everything.  I know the days ahead are going to be hard, but I am planning things for fun and trying to let life go on but life has changed forever.  I'll be thinking of you and please feel free to post whatever you want.  You can pm me if you need to.  Take care.

    Your smile is beautiful,

    Diane

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    Hi everyone, 

    I have had a busy week going back and forth from the hospital for tests, getting dental work done, answering calls from everyone I know  and just trying to get ready for chemo.

    Good news so far.  My blood work, kidneys,liver and bone scan tests all came back cancer free.  I have to go for a CT scan on Monday.  My Dr. is still waiting for the rest of the biopsy results (Her2neu and hormone results).  He should have them by todays end.  He says I should be starting my chemo on Tuesday now.

    I will definitely take your advice Diane about the water, I have been busy figuring out what I need to do for the chemo part of my treatment.  I told my husband that even if I get mad and curse at him that he has to keep hounding me to drink my fluids as well as eat.  Also, I don't want to offend anyone who is offering support to me, does  anyone have any suggestions on how to diplomatically tell people that I have cancer but I can still do things for myself.  I know sometimes I may need extra help and I will ask for it then but many people seem to think I shouldn't be doing anything at all.  I would appreciate any advice on this matter.

    Take care everyone,

    Annette

  • Unknown
    edited May 2008

    Heck, I still worked full time during chemo but if someone had offered to come clean my house or cook dinner, do laundry, yardwork, I would have jumped on it in a new york minute.  People want to show they care and sometimes doing something they know they can do for you is the only way they know to help.

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    Hi DianeE and IBC Shelley,

    Honestly I cannot offer you any suggestions on how to overcome what you ladies are going through right now because I am just starting the process.  I want to thank you for being so honest and open about your feelings.  I find this site very uplifting with all of the positive comments but  I admire you and anyone else for not sugar coating what you are feeling and sharing it with us (me). This is also a big part of fight not just the treatments and surgery.  The emotional fight seems to be as big the cancer itself.  I believe from all of your previous posts of positive thinking, that both of you will find a way to overcome your present turmoil the same way you fought during your treatments.   Just remember, you are someone's daughter, wife, mother, best friend and co-worker; they are happy to have you in their lives no matter what.  When I reach this point, I promise to post to both of you so you can tell me what you did to help yourselves through this rough period. 

    I will be praying that you can find the way out and end up on top.

    Big Hugs, Annette

  • shrink
    shrink Member Posts: 131
    edited February 2008

    I finished rads 2 weeks ago and haven't started an AI yet.  I feel kind of lost.  I was going to the hospital every day not so long ago and now I go to the gym in the morning and have very little to do the rest of the day.  The TV shows are depressing.  I really don't want to return to my job since it was physically pretty demanding - lots of travel.  I do think about the other shoe dropping so I'm tempted to buy some more. I'm counting my blessings but I'm still crabby and edgy about the whole deal.

  • Unknown
    edited May 2008

    It is very hard when treatment is finished.  I found that just adding a few things I did before treatment to my routine each week helped me find my new 'normal'.  I know it feels like you will never have a life again but I am 4 years out now and I assure you that you will.  I think going to the gym is a great thing to do.  My hardest thing was forcing myself to get out of the house each day even if it was just to run an errand. 

    Maybe you can use some of your time to polish up your resume and find a job that you want to do.  Alot of people find that after a diagnosis and treatment for BC that they need a change in jobs to better fit their new priorities.

  • Tylenol
    Tylenol Member Posts: 7
    edited February 2008

    I liked your advice AlwaysHope. I would definitely love to have someone come and clean my house, too especially if I was working out of the house.  I am someone who doing the housework, making supper and doing some yardwork (laundry is my husband's job) is my job.  This is what I do and what I need to do to keep myself  feeling productive.  I will accept the help when I need it but not always.  However, I will take your suggestion to heart and try to think of other ways people can help like joining me for my walks, rides to and from chemo  and keeping me company on down days and good days for that matter.