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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    Welcome YuYu,

    I hope surgery goes well.  If you can... ask to see someone else's scar.  Most will show you quickly theirs.  This will help you a lot with the first time seeing the one breast all alone.  I did one side and a year later had to do the other.  I found both gone much easier to deal with.

    You will be surprised how little pain you will have.  The drain bulbs are more of a pain than the surgery:) 

    Flalady

  • darlingdaughter
    darlingdaughter Member Posts: 1
    edited January 2009

    GOD BLESS YOU EVERYONE.  I HATE TO SAY THAT THE STATEMENT "MISERY LOVES COMPANY" IS TRUE, BUT IT IS.  WE FEEL BETTER WHEN WE KNOW WE'RE NOT ALONE. 

     I WANTED TO TALK ABOUT MY MOM.  I AM HER ONLY CAREGIVER AND SHE HAS IBC ON THE RIGHT AND DUCTAL ON THE LEFT.  SHE IS ER AND HER2+.  NODES INVOLVED. SHE NEEDS 1 MORE CHEMO (TAX,CARBO AND HERCEP) THEN WE'RE OFF TO SURGERY. 

    MY UNDERSTANDING IS THAT SHE WILL COMPLETE CHEMO, HAVE AT LEAST 1 REMOVED IF NOT BOTH, GET RADIATION AND HERCEPTIN FOR A YEAR AND THEN DO THIS AGAIN IF IT COMES BACK OR NEVER COMPLETLY GOES AWAY?  WHAT ABOUT DAMAGE TO THE BODY FROM THE CHEMO?

    PLEASE HELP.  THE ONC SAID 4MTHS TO 1YR WITHOUT THIS TREATMENT REGIMEN BUT COULD NOT GIVE AN ESTIMATE WITH THE TREATMENT.  JUST SAID WILL HAVE MORE TIME.

  • jadai
    jadai Member Posts: 33
    edited February 2009

    Hi Yuyu,

     When my mom was first diagnosed in late September I saw one of your posts.  I am so glad that you are doing well even with your ups and downs.  My mom had her last chemo today (she has responded beautifully), is expected to have 2 more herceptin treatments and then surgery.  Her 1st oncologist was gloom and doom so we are thrilled that we switched!  Now that I think about it, Ms Sunneedazee's post was the 1st I saw and I think yours was the 2nd.  I was so scared and confused then!  Anyway, please keep coming back, these wonderful ladies are a wealth of knowledge and support for those with BC and those of us who are caretakers!

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Saw my oncologist yesterday, and she is setting things up with the radiation oncologist. This will be the last treatment phase; then we watch and wait for recurrences for a while.

    If all goes well, next year I will have DiEP flap reconstruction. I was told that radiation makes me a poor candidate for implants.

    I just don't want this to come back. From the path report, it is a mean and aggressive cancer. I hope the radiation burns all remaining cancer cells totally out!

    How do you handle the waiting? 

    Bette 

  • hope09
    hope09 Member Posts: 3
    edited February 2009

    Hi to anyone this is hope09. I wrote to isccpouse and he was nice to write back in regardsto this but was unable to answeer the questions and said my report was very vague. It is. If anyone can understand this please explain. Because of rather dense breast tissue confidence level in being able to exclue malignancy is diminished. the 12 to 3 oclock position of the left brest was evaluated and no cysts or nodulesare identified. The p[atient has significant tenderness and therefore clinical managaement is neccessary regarding this breast apin an dthey say tests are normal. Yet on disc that came with my films today that i picke dup is a big black spot on my left breast. Sticks out like a sore thumb in the image. I still have pain and feels like someone is stabbing me. I do not htinkthis is a breast infection it is so localized but the pain is going up in my shoulder a bit. No discharge no orange peal and no puckering , but god this hurts. I have now for the past 2  nights sleep with a pillow under my left breast because it hurts so bad and can only sleep on that side. I go to breast surgeon next Wednesday 2-11-09 for the first time and unsure what she is going to try to tell me it sounds like the docs are really slow at dx this. Ihope it is not IBC. Any info would be great . thank You Hope09

  • hope09
    hope09 Member Posts: 3
    edited February 2009

    dear GGO8 Iam going to see abreat surgeon, i was not supposed to go until Feb25 and they called me yesterday and want  to see me Feb 11 next Wednesday, they would get me in sooner , but the breast surgeon I want to see is on vacation and wont be back until next Wednesday. These are the results from mammogram and ultrasound. Do you know what the black area on the ultrasound would have been. This is what bothers me because this is the area I am having trouble with . Let me know thanks for the response. It seems like coming here and listening to everyones stories just helps me get through this waiting game. Thanks Again Hope09

  • FloridaLady
    FloridaLady Member Posts: 158
    edited February 2009

    My thoughts....push for a biopsy...this is the only why to check that spot out.  I know a lot of doctor say cancer does not cause pain. Liars!  My cancer has been painful with each recurrence I've had. (9 al together). 

    I hopeful it is a infection and not bc.  I wish they would get you faster. Waitng sucks doesn't it?

    The only thing that helps waiting...is stay busy. 

    Praying that this is not bc.

    Flalady

  • hope09
    hope09 Member Posts: 3
    edited February 2009

    Thank you Florida Lady Ido my best to kee busy I am a waitress and now I have 3 days off in a row and rhis is the hardest time because it gives me time to think about it and when i am at work I am so bus i try to forget this is all happening. I was just telling my husband i will not be happy until I hear the word biopsy. I really appreciate all the support that this forum and sit has for the women struggling with this disease. Thank you all , and my thoughts are always with you. Hope09

  • LezlieB
    LezlieB Member Posts: 2
    edited February 2009
    Hi,

    I'm 55, married with two grown kids and three amazing grandsons, and the best parents in the world!

    In late June of 2008 and I noticed my left breast was a little tender and swollen, attributed it to a bruise or gaining a little weight, or my bra underwire pinching me. Symptoms increased and had some pinchy type pains and some itchyness, again I explained them away. Then I noticed the left breast looking positively perky under a tight PJ top (not my usual state! LOL!) Within a few days the nipple inverted and it was warmer than the other and a little redder, but never really got the orange peel look.

    I remembered stumbling upon a web site about Inflammatory Breast cancer back in 2001 when I had DCIS, did a quick Internet search and realised as I looked that I had almost all the symptoms. It was one of those....heart drops to the pit of your stomach.... moments.

    I made an appointment with my PCP, who I'd just seen for a yearly physical in May. How could something have developed from nothing noticeable in May to IBC in July? I told her my fears that it could be IBC and she made an appointment at the breast care center for a mammogram and wanted to surgeon to be there as well. The surgeon looked and immediately made an appointment for an MRI, and one to come back in for a sonogram guided biopsy. A few days later the results were back, it was indeed IBC. I've never wanted to be wrong so much in my life!

    Things moved very quickly after that, I met with an oncologist who scheduled a PET scan, CAT scan, bone scan, Echo cardiogram, and day surgery to have my port "installed" for chemo, which began the following Monday. Thank goodness everything moved so quickly!

    The Pet showed 8 cm+ on the left breast, a couple lymph nodes and a 2 cm spot on my liver.

    I had chemo scheduled for once every three weeks but since my blood work came back great after about a week and a half they switched me to chemo every other week, , Cytoxan, Andrimycin ( the red stuff) and Taxol.

    The two week schedule was pretty tough since I'd just begin to feel better and then ...WHAM, it was time to do it again, but I figured let's get this cancer with the "big guns" and hit it hard and fast.

    I was switched to weekly Herceptin at the end of October after they got the news that it was HER+ , then started Herceptin once every three weeks in Jan.

    I had a bi-lateral Mastectomy on Jan 8, 2009 and have an appointment next week with the oncologist to plan the next phase of treatment. I'm figuring from what I've read it'll be radiation and more Herceptin. I'm a little worried after reading here that so many people are on a combo of Herceptin plus something else and wondering about the reasons why, and if it might be something that would be more effective for me. One more thing to ask about!


    The Path came back showing the lymph nodes were clear! The chemo killed the cancer in the ones that had shown up on the Pet Scan!!

    Last Pet showed the spot on the liver is gone too, so that's good news. So far everything seems to be working great.

    I'm saying my prayers that the good news will continue till they find something else that will totally erradicate IBC so none of us will ever have to worry about it coming back again!!

    Lezlie B

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    My path report was good in that the margins were clean and there was no lymph, vascular, skin or nipple involvement. What has the docs concerned is the aggressiveness and other characteristics of the tissue was removed. There was an actual tumor that had grown through 5 months of chemo, although the surrounding inflammation did decrease. If there are any of those aggressive cancer cells still floating around, they need to be zapped ASAP.

    My incision is not pretty because of all the tissue they took out around the tumor. The top part is very tight, with a lot of loose skin gathered up from the bottom of the breast. The effect  is an S-curve  with a very puckered lower side. I guess this incision will now get fried. Goodness know what it will look like then.

    Appointment with radiation oncology in two weeks. We will see what they say about the path report.

    I changed my avatar because my hair is starting to grow a little, and I am trying to get up the nerve to go wigless. This was my first baby step toward showing my stubble to the world 

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Bette:

    You look great. 

    Laura

  • LezlieB
    LezlieB Member Posts: 2
    edited February 2009

    Bette,

     You look wonderful wigless! 

    I decided to forget about hats or scarves last month. The first time out in public was a little weird but I figure, this is how I look, take it or leave it!I'm also letting it come in in it's natural color and I kind of like it. It's really different than it was before, very silver with a little dark, where I used to be gery and dirty blond if I didn't color it.

    Now it's grown enough so that it's starting to have an Annie Lennox kind of look...just wish the rest of me looked like her!

    The info about how the mast scars look and how rads might change that is so helpful. I have an appointment with my onc next Wednesday and we'll discuss rads and what's next.  Right now I'm just on Herceptin and I'm a little worried that it might not be enough since I had mets on my liver before the I had the ACT rounds of chemo.  

    Guess we all worry, but hearing about others experiences gives me a little perspective and is such a big help!

     Lezlie

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Thanks, Laura!

    I went out to the mailbox today with a bare head. Unfortunately it was cold (18 F) so I quickly covered up with a hood.

    I bumped into a neighbor who commented that it looked like my hair is coming in brown instead of black. Privately, I think there is a mix of gray in it, but I thanked her. She also said that I look great in hats. Go figure.

    Bette 

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Gg08,

    Thanks for explaining about the scar and the changes with rads. I too, have a lot of puffiness under my arm. It is good to know that some of that may resolve.

    I am still messing with this pesky drain three weeks after surgery, and from the amount of drainage, have little hope that it will get pulled at my appointment next Tuesday. That means yet ANOTHER drive to Baltimore from PA to get it checked. My calendar is filling up with appointments between my wedding and the docs.

    I may have to go to my dress fitting with my surgical bra, but I am going nonetheless. This wedding is going to happen, IBC or not. I have found the man of my dreams, and we want to spend our lives, short or long, together. I am planning on long.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Bette:

    I know that the drain sucks since I had a tramp flap at the time of my mastectomy I had 4 drains to deal with.  Two drains were able to come out 1 week after surgery the other two took about 4 weeks.

    Good luck on Tuesday and praying that you can have the drain remove then.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Laura, the drain is out, but no as I expected it would come out.

    Last Sunday morning I started having chest pain at church an landed up in the ER where they were worried about blood clots in my lungs. Thank God my CAT scan was clear for that, but it showed a lung infection that kept me in the hospital for three days on IV antibiotics and respiratory therapy. As soon as the antibiotics were started, the drainage changed from pink to straw color and started to dry up. My PS in MD got in contact with my doc here in PA, and said since I had missed my appointment with him due to being in the hospital, could someone in PA please evaluate and remove the drain so it would not get infected. So a surgeon here pulled the drain.

    I am home now, drain less, but a little more sore than I was before the hospitalization. I am also on Levaquin for a week, so hope that will keep infection at bay.

    Next week is my appointment with the radiation oncologist.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Bette:

    Sorry to hear that you were in the hospital.  I am so glade that you CT scan was clear because blood clots in the lungs are very painful I had 3 clots in my lungs back in 2005. 

    Yeah! the drains are out!

    Good luck with the radiation oncologist.

    Hugs

    Laura

  • nowheregirl
    nowheregirl Member Posts: 55
    edited February 2009

                    

    Hi everyone,

                

    Well, I have never got IBC myself (mine was IDC) but wanted to share this story I heard from my onc. One woman came to see him, worried if anything was wrong with her boob. Turned out she had IBC and it had already spread to just about everywhere in her body. She was inoperable so my onc immediately put her on chemo but everybody thought it was too late.

    She did Taxol for 7 years. Now last month, she had follow-up scans and was confirmed that she was 100% NED. No cancer at all in her body. She started as "inoperable" and "body full of cancer" and now she's 100% cancer free. I saw her in the waiting room when I saw my onc last week and trust me, she didn't even look like she "used to" have cancer. Her future is bright and full of hope. Laughing

    So everyone, especially if you were newly dx'd, please know that you can be like her. Just because they say IBC is rare and aggressive does NOT mean in any way there's no hope. I wish each and everyone of you the very best.

                

    Hugs,

    Fumi

  • FloridaLady
    FloridaLady Member Posts: 158
    edited February 2009

    Great news...but will she have to continue to do chemo?  I'm almost NED's from my 2nd recurrences of IBC.  But I will still have to chemo on and off to maintain this status:(

    Flalady

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Fumi:

    Such a great story thanks for sharing this with us.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    It is slightly over a week since the removal of my drain, and fluid has been accumulating in my chest.

    Today I had a procedure at Hopkins to drain the fluid, all 200 cc´s. It waqs not too bad and they sent a volunteer in to hold my hand. I am now wearing a tight spnadex sports bra to compress the area, and hopefully keep the fluid from reaccumulating.

    There is the possibility that a new drain may have to be inserted.

    The radiation oncologist will not proceed with treatment until the fluid situation is resolved and my PS signs off on my condition.

    So, I am in a holding pattern. The only thing happening fast is the countdown to the wedding! Less than 6 weeks. I am now wearing Tom´s ring, and will hunt for a dress this weekend. Those are the bright things in my life that I must focus on.

    Bette

  • debralynb
    debralynb Member Posts: 2
    edited February 2009

    Hi, it has been awhile since my journey began so I hope it is ok to post.  In November 2007 I noticed changes in my left breast.  It became red, swollen, and I had the inverted nipple.  It was also warm to the touch and itchy.  After a few weeks of it getting no better I went to see my internists who thought (as I did) that it was an infection.  She did two things (one of which I am grateful for this very day) prescribed an antibiotic and scheduled an appt. with a breast specialist.  She said that I could cancel if the antibiotics worked.  Well the antibiotics didn't work so I kept the appt. and went to the breast specialist.  She too saw some subtle changes and referred me to get a mammogram (I just had my baseline in Sept. 07) and possibly U/S.  That was such a long day.  I had the Mammogram and U/S which didn't really show anything but some denseness.  The radiologist wanted to do an MRI and possibly a biopsy.  The MRI also showed patterns that were similar to infection but she wanted one more test.  The biopsy was done and I was sore but was sent home.  No I think I was nieve but I still didn't think I had cancer.  I never realized you could have cancer without a lump.  I was thinking it would show that it was in fact an infection and I would get a new prescription and be on my way. 

     On Jan. 18 (2 days later) I got a call that changed my life as I knew it.  I now had cancer and at that time I didn't know what kind of cancer.  I didn't e.ven know there were different kinds.  Boy did I have lots to learn.  I learned quickly that I had IBS and I was scheduled for PET scan and Port placement. I was also Her2+ and PET showed that it hadn't spread and the Port placement was pretty uneventful.  Jan 31 was my first Chemo - I was given Taxotere, Carboplatin, and Herceptin.  I had 6 rounds and tolerated pretty well.  I did get anemic around the 4th round which was rough but other than that I did pretty well.  Thank goodness for anti nausea drugs and Neulasta.  I continued with the Herceptin treatment until Jan 21, 2009 and handle well - all MUGA scans were good. 

     My Mastectomy was June 5, 2008 which was a little scary for me but I think I handled it better than losing my hair (I know that sounds crazy).  I only stayed in the hospital til the next day.  The best day ever was when the drains came out.  My rads started the first part of July and ended August 25.  The skin reacted great.  Just a little tan and no burning.  My last PET scan was Nov. 10 and it show No evidence of cancer. 

    I saw my Oncologist Feb. 6 with hopes for his ok to go ahead with recon.  He did bloodwork which included tumor markers.  They came out in normal range.  So it is time (finally) to do recon.  I am now decidiing between Lat and Tram Flap.  Other than very mild lymphedema and some cording I am feeling fairly normal.  My last PT is tmw and it will be nice not to have to be somewhere every week (at least for while). 

     Hugs,

    Debra

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Debra:

    Welcome and it is never to late to share your story.  I do not know a lot about Lat procedure I had a tram flap.  I am very pleased with how it turned out I was only on pain med for about a week.

    Bette:  What a bummer that you had to have fluid drained keeping my fingers crossed that you do have to have a drain again.  Have fun looking for a wedding dress.

    Hugs

    Laura 

  • debralynb
    debralynb Member Posts: 2
    edited February 2009

    Thanks Laura, I have decided on the lat flap and will remove the other breast at that time.  I am so glad that you are pleased with the results of your recon.  I can only hope that I will be pleased as well.  I love it here.  I have read posts often throughout my treatments and they have answered so many questions and help alot of my concerns.  I thought it was time I posted.

    Hugs,

    Debra

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Ladies, I found a dress! It is a halter neckline, but has an inset in front so that it does not go down very far. All my scars will be covered. My daughter(matron of honor) and niece (flower girl) also got very nice dresses. So the shopping is done for the ladies! My sister-in-law is lending me a necklace and earrings that look great with it, and all I need is a pair of shoes, and to decide what to wear on my head.

    There are only five weeks to go, and I fear my hair will not be long enough to style, so it is wig, hat or some kind of headband like baby girls with short hair wear. Any ideas?

    More fluid is accumulating in my chest. I am really hoping that they will just drain it on Tuesday when I go. If I get another surgical drain, it will definitely cramp my style!

    No radiation for me until the fluid problem is resolved. And recon is a long way off. Congratulations to all who have reached that point.

    Bette 

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    Got the news today that I need a new drain, so Tom and I are headed out early, 90 miles to Baltimore for two doc appointments, blood work, CAT scan and then the insertion of a new drain. It is done by the same department that puts in the ports,Interventional Radiology,  and I will be sedated for it. Thank God I have Tom to drive me home.

    I am praying that it does come out before the wedding, otherwise I will have to be inventive with hiding it under my gown. Also, it would mean no water activities of any kind for the honeymoonFrown

    I am trusting God in this, as in all other things. If He is letting it happen, it is for the best.

    Bette 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2009

    Bette:

    Good luck with you doctors appointments.  Praying that the drains come out before your wedding.

    Hugs

    Laura

  • bettelou68
    bettelou68 Member Posts: 151
    edited February 2009

    The appointments went well, and the new drain is in. Sigh. It needs to be there as it has been filling up today.

    Yesterday was long, with all the traveling a lots of waiting at the  hospital. One fun thing we did was to drop off a homemade birthday cake at DD's house on our way to Hopkins. She was 25 yesterday. She just called and thanked me for the cake.

    Rads simulation is put off until March 11, IF the drain is out by then. I see the medical oncologist tomorrow. Don't have to go back to BS for three months. See PS for drain management next week.

    Another result of all this is that I can't return to work until the drain is out, and then only part time. I don't know if I even have a job where I used to work.  Tom says I do not have to work until I am well, We can manage together. It is such a relief to have him tell me that. I am not in this struggle alone. I have God, and I have my man. 

    Bette 

  • reeniebabe
    reeniebabe Member Posts: 1
    edited February 2009

    Hi

    I have just posted my information in the New area.  Not terribly used to using these types of forums.

    It is great to read some positive stories and be able to so much relate to some of the things that people say.

    Thank you so much.  My diagnosis of IBC in Dec 2008 has changed my entire life - so much so, I am not really sure who I am at the moment.  I've given up work (could not continue through the treatments - I tried but with only 5 good days out of 21 there was no chance!).

    Certainly perserverance and insistence is what had my IBC diagnosed reasonably quickly - one radiologist tried to make me wait for one month over Xmas for the initial tests (after all there really wasn't any urgency was there!).  Luckily I insisted and commenced chemo within two weeks.

    Meeting with my surgeon next week to schedule surgery and r & h therapy.  Herceptin will continue for twelve months.

    Reenie

  • moodyk13
    moodyk13 Member Posts: 8
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!