Finally ready to reach out........I think.

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dove967
dove967 Member Posts: 23
edited June 2014 in IBC (Inflammatory Breast Cancer)

This is my first post on any board regarding my diagnosis. I am 45yrs old and was diagnosed with IBC stage IV with bone mets on Jan 7th 2013. I am under the care of Dr John Pippen at the Baylor Sammons Cancer center in Dallas, Tx. To be honest, this all started about a year ago. Enlargement of left breast, nipple inversion. Inflammation, skin changes. I did self exams every month so I thought it was something related to perimenapause or my breast fibroids so waited 3 mos to see if it would go away. In the mean time, I did research on my symptoms and self diagnosed IBC pretty much. The Dr confirmed my conclusions. It was my surgeon who discovered the bone mets via bone scan and MRI. I recieved 6 rounds of Taxotere and Cytoxin over 5 mos and hormone therapy. On June 17th I had a simple propholactic masectomy of right breast and radical modified masectomy with lat dorsal flap to close wound of my left breast. Now waiting to start radiation-7 weeks, 5 days a week. Taking Tamoxafin daily, also (with onc approval) 1 tblspoon manuka honey, 1 tsp ceylon cinammon three times a day, and 500mg Tumeric twice a day. So, far God has kept me strong. No pain and bloodwork always comes back normal. with the help of chemo, my original tumor almost shrunk to "near resolution"-it took over my entire left breast-and surgeon was able to obtain clean margins of original tumor in my left breast. Despite all the good progress, I'm pissed! Pissed I now have more medical knowledge than I ever wanted. Pissed my life Will always include this stupid cancer- we named original tumor "George" and my breasts "Gracie" and would say "George and Gracie gotta go". I'm pissed I have to quit smoking before I was ready! But, I'm still here, and could really use some friends who understand the unique battle of IBC. Thanks for reading such a long intro.but it's been a busy year.....dove.



"Better stay positive....what you speak, you breathe life to."

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2013

    Hello dove, and welcome to Breastcancer.org. We're so pleased that you decided to reach out, although it's too bad that you have a reason to.

    You might also want to post in the Stage IV and Metastatic Breast Cancer ONLY forum to connect with other members who are also dealing with a Stage IV diagnosis.

    Best wishes,

    • The Mods

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited August 2013

    Welcome Dove,

    I'm sorry about your diagnosis.  I had same diagnosis ibc with bone mets from the start in 6/09.  I went through much of the same treatment except I did not do radiation.  I had 8 months of chemo (tac) & bi-lateral mastectomy a year later.  I've also been on Zometa & Femara for 4 years.  So far, so good.  I'm doing yearly PET scans now and have been clear the last 3 years.

    There is still life after bc, even stage IV bc.  I wish you well with continued treatments.

    Terri

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  • dove967
    dove967 Member Posts: 23
    edited August 2013

    Good to read your reply. I think I'm experiencing some of that good 'ol "anger" in my grief process. I go in and out of different stages. Just don't want to supress a healthy process. The scary part is when I'm having what I affectionately call "crying time". After my 7yrold son is asleep, I let my hubby know and he holds me while I fall apart for a bit. I'm a bit of a control freak when it comes to emotions so "crying time" is frightening for me , but, I feel safe letting go with my husband. I'm very blessed that way. dove







    "Stay positive....what you speak you breathe life to."





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  • Elsie0203
    Elsie0203 Member Posts: 30
    edited August 2013

    Hi Dove

    I haven't been formally diagnosed - appointment with doc on 28th Aug - long time to wait - but I have more or less elf-diagnosed myself.  Have ALL the classic symptoms and believe that whatever is happening to me is moving fast as the other breast is also swollen with a rash when it wasnt to begin with and my left arm is puffy which suggests that the lympathic flow is blocked.  I wish I could feel angry but at the moment I am on the floor and grieving for what I will be losing.  I want to be positive and be glad to be alive but at the moment all I can think of is putting my affairs in order and not being around for my kids.  The bloody UK health system can be so brilliant but when it comes to something like this, when there is urgency, the bureaucracy kicks in and it is a case of get in line. Sorry but I just wanted to let you know that it's good to see that you are coping, I know how yo feel and hope I can be strong too.

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  • alicki
    alicki Member Posts: 661
    edited August 2013

    Hello Dove, 

    Just one question, how do you deal with the wait? from the moment, you went to see the doctor to the moment you knew for sure, how did you deal with the wait?

    Thx

    Alicki

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited August 2013

    Alicki,

    Waiting is hard.  I've gone from life being "normal" on last Sunday, to a doctor's appointment on Wednesday, to mammograms/ultrasounds on Thursday with the Radiologist staying late to talk to me about next steps, to biopsies on Friday (they made room for me quickly... ominous), and now WAITING until Tuesday for the results and an action plan.

    One 'lightbulb' moment came on Thursday, though, that helped me with my fears and gave me a little patience (not much, but a little)... I arrived at the Milgard Breast Center for the mammogram, they gave me a nice robe to change into, and I sat down with several other ladies of various ages.  As I was passing the time with texting a couple of good friends and chatting quietly with the lady next to me, it suddenly dawned on me that every woman in that room was worried too.  Knowing that I am not alone made it easier.  The next day, when I came back for the biopsies, it was a little easier to walk through the doors.

    Waiting is hard.  But you are not alone. Cool  Plus, you are strong and will find a way!  Life is good.  Find the good in the detour. 

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  • alicki
    alicki Member Posts: 661
    edited September 2013

    Dear kjsimpson. 

    Thanks of that reply. My problem, I have only biopsy they took, they didn't want to do more. THey took it on an affected area and it came back with inflammed tissue but no cancer - they are  still checking it out. 

    At least you were taken on board fast, I've been battling 8 weeks to get the tests done, (US neg; MRI; neg; mammo neg and this core biopsy with skin with too many lymctoytes. 

    I'm going in tomorrow to find out more about this inflammed tissue and skin but then will ask for the US and MRI to be re-done again-

    If they refuse, I will go and get the tests done in London. In the US, you have IBC clinics, we don't. And it has taken 5 doctors to take this on properly. Not full blown, one breast slightly bigger than the other and fuller (not usual with me)

    Did you get the results?

    Alicki

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