1st time here , can use all the help I can get

stevie178
stevie178 Member Posts: 31
edited March 2014 in Breast Cancer #1
Well out of all the forums I have ever had to post in this was most certainly one I never thought I would have to frequent .As I am sure everyone else has felt as well , but since I am here I guess I will settle in , try to make myself comfortable and share and learn with all of you also in the same position. I am 40 yrs.old and my wife has been infected with "Inflammatory Breast Cancer" which from my reading is proving to be one nasty form of cancer. We have just entered the first stages of it with treatment just a couple of weeks out and are meeting with the Oncologist tomorrow as well as having a second biopsy done to determine the damage if any to the lymphatic system so as course of treatment can be carried out properly. We were both caregivers before to my grandmother for the last 5 years until her passing last July at the lovely age of 86 so I have somewhat the experience and mental preparation needed to see this through. Don't get me wrong , this is my wife and I would give all I have to see her healthy again and yes..........smile. We have been together almost 15 years and this by far is the hardest thing I've been faced with so that's why I'm here , to cope , share , learn , just try to make sense of all of it and possible someone to pick me up and brush me off every now & then . I look forward to hearing from all of you and teaching me what to expect and how to cope .

Best Wishes to all

Stevie
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Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    Welcome, Stevie
    I just want to welcome you and say how lucky your wife is to have such a caring, committed spouse. We are always glad to see caregivers here on this board, because we know better than anyone how important your support is to us -- and how necessary it is that *you* get some support, too!

    I don't have any experience with IBC myself, but others on this board have, and will weigh in soon. Please keep posting and asking questions -- and, at some point, if your wife would like to join us, too, let her know that we'd love to welcome her here anytime.

    Traci
  • MAJW
    MAJW Member Posts: 2,510 Member
    #3
    So Sorry.......
    that you had to "find us." My bc is not IBC but I am sure someone will answer, that has experience with that type. I understand the role of caregiver as well as the role of recipient......My husband read "Breast Cancer Husband." It gave him a real understanding of this life altering experience......he has been my rock and I don't think I could have done this, as well, without him. There are stages that you both will experience....All I can add is just be there for her at all times. She needs you now more than ever! She will be sad, angry, depressed, on information overload and most of all overwhelmed, you both will....but it's all doable, I promise. If possible go to every doctor's appointment with her or have a trusted family member or friend.....for she will only hear half of what is being told to her, she needs that second set of ears.
    Best wishes to you both
  • Tux
    Tux Member Posts: 544
    #4
    So sorry to hear of your
    So sorry to hear of your wife's dx. I am so glad that you will be at her side during this difficult time. I am truly fortunate to have a husband who is similarly supportive.
    I do not have IBC, so I can give you little information on this aspect of the disease.
    Just try to take it one day at a time & accept any help that is offered.

    Hugs & prayers sent your way...
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #5
    Hi Stevie!
    Welcome! This is the best site. The women here(and there is another caregiver on here as well-Aortus(Joe)-Moopy's(Lisa)husband.Are you confused already by that-they are just their usernames like outdoorgirl is mine(my name is really Patty)are really compassionate and full of a lot of advice from our experiences.
    Someone is usually on here 24/7 and if one can't really help you another will be able to.I didn't have IBC either,but I know there are ladies on here who have .
    I am sorry to hear that your wife has been diagnosed and unfortunately,it is a hard road,but you both will be able to make it to the other side.Just one step at a time and look at the here and now-if you try to look at the big picture it will be too overwhelming!
    Keep us posted and like some others on here have said,if she is interested she can always check out this site herself. And yes,Breast Cancer Husband is a great book-It was one of the first books I'd read after being dxed,my husband read it,and everyone we know who has had to go through it themselves gets a copy of it from us.Also a good book is Dr.Susan Love's Breast Book-very good and informative!
    One thing you should know is that everyone with bc may have the same story and treatments,but may also respond differently to things. Just because a drug has affected one person in a certain way,doesn't mean that the same drug will affect someone else the same. We all write out of our own experiences and what our onccologists say and what we've read.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #6
    outdoorgirl said:

    Hi Stevie!
    Welcome! This is the best site. The women here(and there is another caregiver on here as well-Aortus(Joe)-Moopy's(Lisa)husband.Are you confused already by that-they are just their usernames like outdoorgirl is mine(my name is really Patty)are really compassionate and full of a lot of advice from our experiences.
    Someone is usually on here 24/7 and if one can't really help you another will be able to.I didn't have IBC either,but I know there are ladies on here who have .
    I am sorry to hear that your wife has been diagnosed and unfortunately,it is a hard road,but you both will be able to make it to the other side.Just one step at a time and look at the here and now-if you try to look at the big picture it will be too overwhelming!
    Keep us posted and like some others on here have said,if she is interested she can always check out this site herself. And yes,Breast Cancer Husband is a great book-It was one of the first books I'd read after being dxed,my husband read it,and everyone we know who has had to go through it themselves gets a copy of it from us.Also a good book is Dr.Susan Love's Breast Book-very good and informative!
    One thing you should know is that everyone with bc may have the same story and treatments,but may also respond differently to things. Just because a drug has affected one person in a certain way,doesn't mean that the same drug will affect someone else the same. We all write out of our own experiences and what our onccologists say and what we've read.

    Welcome stevie to this site.
    Welcome stevie to this site. As you can see, you will get lots of support and encouragement. Post often and let us know how your wife and you are doing!
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #7
    You've come to the right
    You've come to the right place. Welcome and ask away and someone on here will have an answer that is a product of their experience. Much success on your journey with your wife. You're a wonderful and caring husband. We're here for you.
  • stevie178
    stevie178 Member Posts: 31
    #8
    survivorbc09 said:

    Welcome stevie to this site.
    Welcome stevie to this site. As you can see, you will get lots of support and encouragement. Post often and let us know how your wife and you are doing!

    Thank you all
    Well I must say that this is quite the place with some great people and just wanna say thank you to all for the warm welcomes . Looks likes it is time to look around more an ask a few more questions but once again .....Thank you all!!

    Stevie
  • meena1
    meena1 Member Posts: 1,003
    #9
    stevie178 said:

    Thank you all
    Well I must say that this is quite the place with some great people and just wanna say thank you to all for the warm welcomes . Looks likes it is time to look around more an ask a few more questions but once again .....Thank you all!!

    Stevie

    I was diagnosed with
    I was diagnosed with Inflammatory Breast Cancer on July 7, 2008!!! I Be careful of what you read, Inflammatory is the most aggessive form of breast cancer, so I know that you and your wife are terrified, my husband and i sobbed for 2 days. It was a very grim picture, but here I am!! I had chemo, then a masectomy (only 1 breast) then radiation. I am sure that will be the treatment they recommend for your wife also. I responded really well to the chemo, I was on Taxol and Herceptin since I was Her2-positive. I also met someone who is 38 yo and was diagnosed with IBC and she is also doing well. I hope that I can ease your fear, I am sure you are freaking out about this disease. I wish your wife the best on her journey, think positive. What city do you live in?
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #10
    Welcome!
    I can't help you with the specifics of IBC, but I wanted to say welcome, and I'm sure your wife will be very grateful for your support.

    My diagnosis is also pretty recent (September 2nd), and I go in for a lumpectomy on Monday, so I understand the feeling of being overwhelmed.

    As far as what to expect, I would just say to expect a roller coaster. You'll feel overwhelmed and tired some days, and then you'll get some encouraging news or just have a good day and feel on top of the world.

    My cousin, who has been battling a different form of cancer (succesfully - Yeah!!) advised us to plan a trip about a year from now to give us something to look forward to and to think about besides the cancer. I think I'm going to take her up on her suggestion!
  • chickad52
    chickad52 Member Posts: 497
    #11
    WELCOME STEVIE
    to the site. I'm sorry you had to be here , as we all are. You will find such knowledgable and caring people here. We are all in this together and we will fight together! Your wife is very lucky to have you.as I too with my husband. Hugs to you and your wife, Diane
  • stevie178
    stevie178 Member Posts: 31
    #12
    chickad52 said:

    WELCOME STEVIE
    to the site. I'm sorry you had to be here , as we all are. You will find such knowledgable and caring people here. We are all in this together and we will fight together! Your wife is very lucky to have you.as I too with my husband. Hugs to you and your wife, Diane

    Thank you Thank you & Thank you
    Meena , you are absolutely correct in that IBC is one of the most nasty thing as far as breast cancer for a woman goes . The aggressiveness of this strain is a fighter but I believe it has met its match . The wife has never backed down from no one or no thing so it will be quite a ride I'm sure for this thing to try to get a foothold over her. My wife will be flattered I'm sure to make all of your acquaintances and discuss with you things she has concerns about . Hey , maybe when they find a cure for this we can all get together an throw one big PARTY!!!!

    Best Wishes

    Stevie
  • Aortus
    Aortus Member Posts: 967
    #13
    meena1 said:

    I was diagnosed with
    I was diagnosed with Inflammatory Breast Cancer on July 7, 2008!!! I Be careful of what you read, Inflammatory is the most aggessive form of breast cancer, so I know that you and your wife are terrified, my husband and i sobbed for 2 days. It was a very grim picture, but here I am!! I had chemo, then a masectomy (only 1 breast) then radiation. I am sure that will be the treatment they recommend for your wife also. I responded really well to the chemo, I was on Taxol and Herceptin since I was Her2-positive. I also met someone who is 38 yo and was diagnosed with IBC and she is also doing well. I hope that I can ease your fear, I am sure you are freaking out about this disease. I wish your wife the best on her journey, think positive. What city do you live in?

    Be careful of what you read, indeed
    Hi Stevie - and welcome to the club. First and most importantly, you and your wife should do just as Meena says and BE CAREFUL OF WHAT YOU READ. Inflammatory breast cancer is, sad to say, aggressive. But it is anything but a death sentence. It doesn't take much surfing to find all sorts of terrifying statements about IBC, most of which are pure crap. If you want the facts, talk to your oncologist. Get a second opinion from a second oncologist (highly recommended), just because you want another opinion. Talk to the ladies here and at other online boards. Visit the Mayo and Johns Hopkins websites. But please, please, please DO NOT SURF RANDOM SITES. Because what you will get is random (and sometimes scary) crap.

    Second, both you and your wife will find wonderful support here. This discussion board has been a godsend to my beloved Moopy and me. You're both against up something very tough, but you have a lot of new and devoted friends to help see you through. Please drop me a private CSN email if ever you want to talk without any of the ladies around (ducks and runs).

    God bless you both!
    Joe
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #14
    Aortus said:

    Be careful of what you read, indeed
    Hi Stevie - and welcome to the club. First and most importantly, you and your wife should do just as Meena says and BE CAREFUL OF WHAT YOU READ. Inflammatory breast cancer is, sad to say, aggressive. But it is anything but a death sentence. It doesn't take much surfing to find all sorts of terrifying statements about IBC, most of which are pure crap. If you want the facts, talk to your oncologist. Get a second opinion from a second oncologist (highly recommended), just because you want another opinion. Talk to the ladies here and at other online boards. Visit the Mayo and Johns Hopkins websites. But please, please, please DO NOT SURF RANDOM SITES. Because what you will get is random (and sometimes scary) crap.

    Second, both you and your wife will find wonderful support here. This discussion board has been a godsend to my beloved Moopy and me. You're both against up something very tough, but you have a lot of new and devoted friends to help see you through. Please drop me a private CSN email if ever you want to talk without any of the ladies around (ducks and runs).

    God bless you both!
    Joe

    Welcome, Stevie
    Though sorry for the reason. We're all here to support and encourage each other.

    I strongly agree with several others: PLEASE, do not simply surf the 'net nor "google" IBC. Too much downright wrong mis-information out there (for all types of BC, not just IBC). Stick with reputable sites. My own onc team was adamant about this immediately at the time of my diagnosis, and actually supplied me with a list of sites they approved.

    Meena has already graciously stepped forward. There are a few more active IBC survivors/members within the group. One counts her survivorship into several years now.

    Joe (Aortus) should really write a book about how to be the very best possible husband/caregiver to a woman battling breast cancer, of any type. Which I've suggested to him here on the board once before.

    The board is here 24/7, each and every day. Visit often, whenever you need or would like to. Of course, your wife would be warmly welcomed, also - if she chooses to join us at some point in the future.

    My best wishes, and sincere hopes, to you both.
  • cristinec
    cristinec Member Posts: 4
    #15
    Hello Steve, I'm very sorry
    Hello Steve, I'm very sorry to hear your news all blessings to the both of you and your family. Keep talking , people you know and trust will be there for you, please don't do this alone. Reaching out to others is the best thing you can do for yourself and your wife. Best wishes. cristine
  • rjjj
    rjjj Member Posts: 1,822 Member
    #16
    stevie178 said:

    Thank you Thank you & Thank you
    Meena , you are absolutely correct in that IBC is one of the most nasty thing as far as breast cancer for a woman goes . The aggressiveness of this strain is a fighter but I believe it has met its match . The wife has never backed down from no one or no thing so it will be quite a ride I'm sure for this thing to try to get a foothold over her. My wife will be flattered I'm sure to make all of your acquaintances and discuss with you things she has concerns about . Hey , maybe when they find a cure for this we can all get together an throw one big PARTY!!!!

    Best Wishes

    Stevie

    Stevie
    It will be one Huge party when they do find a cure for BC that is for sure! I pray for that each day. I will be praying for you and your wife also. When she is ready we will be here for support and comfort. I do not have a clue what I would have done without all my amazing and courageous sisters in pink here on these boards. I am so glad you found us here. Keep in touch ad let us know how it is all going. Give your wife a extra hug from me tonight, and God bless you for being there for her...that is so important.
    jackie
  • ppurdin
    ppurdin Member Posts: 1,181
    #17
    Welcome stevie.
    You have come to the right place for support.This is the best support group you could find.They have got me through alot of hard days.I was dignosed with ductal BC.in Aug.2009.It has been a ruff road and I have a long way to go with treatments.Its great that you care so much.my husband doesn,t talk about it much.I suggest to do what your doing now,just support her,let her cry on your shoulder when she needs,listen when she needs and sometimes she may want to cry by herself.We go through alot of emotions beleive me.Sometimes we don,t understand them ourselfs.sometimes it is the little things that count the most.Take care,and let us know how it goes please.(Pat).
  • jennytwist
    jennytwist Member Posts: 896
    #18
    Welcome!
    Hello Stevie,
    Welcome! I'm new to this site as well and it's wonderful! Everyone has been so kind and supportive. I'm sorry about your wife's dx. Take it one day at a time! I'll keep you both in my prayers.
    -Jenny
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #19
    stevie178 said:

    Thank you Thank you & Thank you
    Meena , you are absolutely correct in that IBC is one of the most nasty thing as far as breast cancer for a woman goes . The aggressiveness of this strain is a fighter but I believe it has met its match . The wife has never backed down from no one or no thing so it will be quite a ride I'm sure for this thing to try to get a foothold over her. My wife will be flattered I'm sure to make all of your acquaintances and discuss with you things she has concerns about . Hey , maybe when they find a cure for this we can all get together an throw one big PARTY!!!!

    Best Wishes

    Stevie

    Yep,we will
    have a big party and Ned will definately have to be invited because he is No Evidence of Disease!
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #20
    jennytwist said:

    Welcome!
    Hello Stevie,
    Welcome! I'm new to this site as well and it's wonderful! Everyone has been so kind and supportive. I'm sorry about your wife's dx. Take it one day at a time! I'll keep you both in my prayers.
    -Jenny

    Welcome -- Stevie .. How kind and supportive
    I find you .. We breast cancer sister in PINK .. are here 24/7 -- . This is the very best site to locate information, research links, guidelines and unlimited emotional support.

    We are all fighting breast cancer, we may at different stages,or grade. Our common thread is the we are fighting bc. We are Warriors, and will not accept anything less than VICTORY.

    Your world will be changed forever just by the mention of breast cancer. Do not be alarmed or overwhelmed. Research, ask questions and as many of us here have done - go for a 2nd opinion.

    I am sorry about your wife and her diagnosis, however YOU found us .. and we are here for the two of you.

    Prayers for you both,

    VickiSam
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #21
    stevie178 said:

    Thank you Thank you & Thank you
    Meena , you are absolutely correct in that IBC is one of the most nasty thing as far as breast cancer for a woman goes . The aggressiveness of this strain is a fighter but I believe it has met its match . The wife has never backed down from no one or no thing so it will be quite a ride I'm sure for this thing to try to get a foothold over her. My wife will be flattered I'm sure to make all of your acquaintances and discuss with you things she has concerns about . Hey , maybe when they find a cure for this we can all get together an throw one big PARTY!!!!

    Best Wishes

    Stevie

    We look forward to meeting
    We look forward to meeting your wife on here Stevie, when she is ready.

    HUGS

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