Just can't believe it...

Options
deborrob
deborrob Member Posts: 37
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi ladies,

 Well, here's my story, which I must say, I am still having a hard time believing.  I was diagnosed with Triple Negative, Stage 2B breast cancer with 3 lymph nodes involved last year.  Had lumpectomy, another surgery for lymph node removal and finished 8 treatments of dose dense chemo and 35 radiation treatments in November last year.  Had a follow up with Oncologist and Radiologist in December - everything fine.  In late Dec/early Jan, I got a rash right over the radiated/surgery area.  It spread, but stayed in the radiated area, so I thought it was to do with radiation and my skin healing and so on.  In mid or late Jan, it had spread some more so I went back to the Radiologist.  He treated me for an infection and told me to call in two weeks if it was still there.  It was, so he told me to go see my surgeon.  Got an appointment, but surgeon's office closed for a week due to bad weather.  Finally saw surgeon on Monday this week, he did a biopsy and said I have IBC.  I have only been out of treatment for original cancer less than three months. Also, can't believe that the radiologist didn't do a biopsy just to be on the safe side.  He delayed my diagnosis by 3 weeks.  Now I am waiting on PET scan, MRI etc. to determine how far this has spread, and have to start chemo all over again next week.  I am staggered, and still can't quite believe this.

· Share on FacebookShare on Twitter
«1

Comments

  • heatherbless
    heatherbless Member Posts: 295
    edited February 2011

    So sorry about this timeline:  but it seems there are a lot of success stories with IBC.  I think you will find quite a few members on this website--have they recommended a mastectomy?  I wish you the best--please tell us your name and I will pray for you.  Love, heather

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Hi Heather,  my name is Deborah.  Yes, my oncologist has recommended mastectomy after the chemo is over.  Still to speak to the surgeon about that - he doesn't like to do mastectomy unless absolutely necessary.  I would obviously prefer not to, but if that is what it takes to keep it gone, then what choice do you have. 

    · Share on FacebookShare on Twitter
  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited February 2011

    Oh Deborah, I am so sorry. What a tough break to have it back so soon! All I can say is my prayers are with you and I can offer {{{HUGS}}}.

    · Share on FacebookShare on Twitter
  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    I feel sometimes that the doctors are playing catch up with BC treatment.  

    · Share on FacebookShare on Twitter
  • Teka
    Teka Member Posts: 10,052
    edited February 2011

    I feel sometimes that the doctors are  playing catch up with BC treatment.  

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    deborrob --- Your story is much like mine.

    I was originally dx with IDC in April 2008.  Had lumpectomy, 2 of 8 nodes malignant, did 6 months of chemo (AC and T) and then stayed on Herceptin.  Took 30 rads tx and in the midst of the rads and while still on Herceptin (Jan. 2009), had a rash start in the area of my original surgery along with hot swollen breast, peau d'orange, etc.  Everyone thought it was side effects of radiation and nobody thought it could be IBC.  (I was the one that kept saying I think this is IBC.)  Finally, they biopsied it (June 2009) and I was right.  It was IBC.  Went to MD Anderson in July 2009.  My onc there stopped the Herceptin and switched me to Xeloda and Tykerb.  I went back one month later and had another PET/CT and it was all clear.  I stayed on the Xeloda and Tykerb for 6 months (until Jan. 2010) and then had a mastectomy in Feb. 2010.  Also more nodes removed which were all clear.  The pathology showed no cancer left at the time of my mx.  I stopped Xeloda but continue on Tykerb to this day.  Have now been on Tykerb for a year and a half.  I continue to be NED and have been NED since August 2009.

    I hope you will take some encouragement from my story which is very much like yours.  Stay positive.  You can beat this second diagnosis, too.  (BTW -- I am ER-,PR-, HER2+.  Originally IDC stage IIB.  Then IBC stage III.  Now in remission, praise God!)

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2011

    As a sister to a patient with IBC, I have found that most medical providers have no (or at best very little) genuine experience in caring for actual IBC patients. Without that opportunity for developing good judgement in actually working with some IBC patients, most providers stumble around with it. I would like to see my sister at least have one solid on-site evaluation and opinion from MD Anderson, where they specialize in IBC, and if I had IBC that is where I would go.

    AlaskaAngel

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Thank you Faith316 for your story.  It does give me hope, which I am not feeling a lot of right now.  This is the first time I have felt like this might get me.  Up to now I have always felt like I could conquer it.  I have thought about MD Anderson, but at this stage I don't want to delay my treatment.  My oncologist wants to start chemo next week, and I want to start asap too.  The rash is spreading, so I just want some chemo in me soon.  I don't know if MD Anderson will give a second opinion once I am started on a chemo treatment.  Anyone know?

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    I don't know the answer to your question about MDA.  Why don't you call them?  You can get their number from their webpage.  At any rate, let us know how things are going for you and what you decide to do.  Prayers for you.

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    I didn't go to MD Anderson, but there are some other ladies on here who have. I do believe that someone  else on here did go and get a second opinion after they started treatment. Hopefully they will come along soon and help you out. I'm so sorry you got this dx it sucks. Yes they are doing so much better that before about treatment. Do be aware of the fact that IBC never really goes away. Ther is no cure. HOWEVER, it can be put at bay for years & years & years. There are some 15-20 & 25 year survivors. Good Luck & God Bless. Leisa

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011
    Leisa, I'm not sure I agree with you about your statement that IBC never really goes away.  Where is that information from?  I have done a lot of reading from many different sources and have never read that before.  I don't think my oncologist would agree with that as he tells me that he thinks there is a very good chance that my cancer is gone.  I'm also not sure that statement is very encouraging for our sister here who started this thread.
    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2011

    Whether one believes cancer does actually "go away" (which would be wonderful if it did) or one believes otherwise, even doctors can't garantee any one that it has gone or will go away for any particular person. (If any of them could, they'd be able to sell the cure and make megabucks.) What are you going to actually do differently if you think it can't come back? Keeping careful about making efforts to avoid a return of cancer through diet, exercise, etc. is what can make a difference one way or the other.

    AlaskaAngel

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    FAITH316:I never intended to upset anyone. I was just relaying the information I received from another IBC patient. They made a video. I will include the link in which Dr.C (I think, I would have to go back and watch the video again to be sure it is him) from MD Anderson says there is no cure YET. I intend on being one of the 25 year survivors. I'm not going to let this disease get the best of me. I do wish I would have been told this in the beginning. This is why I have decided to take a mini vacation every year. Rather I can afford it or not. I'm going to start doing some of the things I want to do and that make me happy. I have always been the one to wait and put others needs ahead of mine. If by chance I don't get to stay around that long at least I will have done something for me. I am sorry if this upset anyone.

    Here is the link to the video.  

    http://www.vimeo.com/15550223

    Terry in the video is the Terry who started the IBC map.   Leisa

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    Leisa,

    Thank you for sharing the link.  I will have to take a look at the video.

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    The video was the second time I had heard @ no cure. I just saw it again on the middle age women(40-60)ish with breast cancer thread, page 289, posted toward the bottom of the page by NM(Native Mariner). This is not just for IBC, it is for all cancers, apparently. According to NM, anyway.

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    Just watched the video and it is excellent.  I encourage anyone who hasn't seen it to take a look.  It is kind of long, about 29 minutes, but very informative. 

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    That's what I thought, glad you liked it. Terry is on facebook. They have a link they would like everyone to go to and comment on the video. They are trying to get it added to the MD Anderson web sight  & the Susan G. Comer sight for informational purposes. Here's the link to that.

    http://www.facebook.com/?ref=home#!/event.php?eid=147402326727"

    I have been telling everyone in my address book & my fb friends list to go and watch it and comment. There is so little information on IBC. I think this would be a great addition to both sights.

    Leisa

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    Have a HAPPY VALENTINES DAY everyone......

    · Share on FacebookShare on Twitter
  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited February 2011

    Looove the post above mine! Happy Valentines Day to all!

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Hi ladies,

    I got my PET scan and estrogen receptor reports back today.  Good news is they IBC is only in the breast, hasn't spread anywhere else.  Slightly less good news is it is Triple Negative.  That is what my original IDC was, so it doesn't leave as many treatment options.  Definitely thinking about contacting MD Anderson, but I am being seen at Baylor in Dallas which is not a bad cancer center (I think).  Thanks for all of your responses ladies.  Support during this time is wonderful.  Has anyone on here had IBC Triple Negative?

    Thanks,

    Deborah

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    Deb....Mine is not, but I think if you look under the forum pull down menu at the top of the page you will find a section for triple neg. It is right under the STAGE IV BREAST CANCER SURVIVORS forum.There are many women on here who are triple negative. Some I believe do have IBC. I don't know how old you are but in the Middies age 40-60(ish) group there are some triple negative women. Even if you're not in that age group, you can still come there and ask them questions. Anything we can do to help..... Leisa

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2011

    I'm glad the tests showed it has so far been confined to the breast. The most recent hopes for triple negatives seem to be focused a lot on the PARP inhibitors as  a possible solution. My sister also has had IBC (only in the breasts so far) after having had IDC 10 years ago, although hers happens to be HR+ and HER2-.

    Let us know how it goes,

    AlaskaAngel

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Well,  I start chemo tomorrow.  My doc is giving me an infusion of Xiempra (sp?) and then Zeloda in pill form.  My boob is uncomfortable because of the swelling, and I am soooo tired.  Anyone else have bad fatigue from this, or is it just my emotional reaction to everything?

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    Start really taking care of your hands and feet.  Lots of moisturizers multiple times throughout the day when you can.  The Xeloda can cause pretty significant and uncomfortable hand and foot syndrome.  Good luck. 

    · Share on FacebookShare on Twitter
  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    I wasn't on either one of those, but the cancer just draines you IMHO(in my humble opinion), I was dx 16 months ago and am still tired all the time. I take vitamines & stuff, but just can't seem to get enough sleep these days. Maybe someday it will get better.

    · Share on FacebookShare on Twitter
  • anonymice
    anonymice Member Posts: 532
    edited February 2011

    Deb, I would bet the tiredness is mostly from the stress of it all - my breast was hurting before chemo but you just have really been knocked back.   The chemo did make me feel better within two weeks though and there was no more pain.   

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Thanks ladies, I hope so.  I'm tired of being tired all the time.  Had my first Ixempra chemo yesterday and starting taking Zeloda.  Don't feel too bad so far, but I know it's probably too early to tell.  My worst days on A/C and T was day 3 and 4.  I hope this chemo works quickly.  Being able to see the rash spreading over my breast is really scary.

    · Share on FacebookShare on Twitter
  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2011

    Honestly, I could see some slight improvement after the first dose of Xeloda and Tykerb.  When I told my family that I could, they were all like, sure you can.  They thought it was wishful thinking on my part, but I really could.  Within 3 weeks, my rash was totally gone.  I had another PET/CT after one month of being on Xeloda and Tykerb which showed no signs of any more cancer.  That was in July 2009.  I have remained NED since that time.  (Only took the Xeloda for 6 months but I am still on Tykerb.)  Hoping you have just as quick a response as I did!

    · Share on FacebookShare on Twitter
  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    Thanks Faith, that gives me hope.  I had my first Ixempra infusion on Friday, and she gave me 4 Xeloda tablets twice a day (total of 8 tabs a day).  Yesterday I had a pretty big dip in blood pressure (80/60) and ended up getting an IV infusion.  That's odd for me because I actually have high blood pressure.  Blood pressure is still low today although not as bad.  Doc told me to stop taking the Xeloda for now.  Funny thing is, my breast has been very painful since stopping the Xeloda.  My rash is not going away yet, but I can tell a reduction in inflammation and the hard skin has softened - at least until I stopped Xeloda anyway.  My breast is really painful now.  See the doc tomorrow, so will see what happens now. 

    · Share on FacebookShare on Twitter
  • Danni1
    Danni1 Member Posts: 57
    edited February 2011

    Deborrob -  I was searching for threads on Parp inhibitors and found this thread.  I remember your name from my thread on IBC and triple negative.  I just wanted to let you know that I'm sending you positive thoughts as you go through chemo. 

    · Share on FacebookShare on Twitter

Categories