Just Diagnosed, Cancer has spread. What to expect?

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mrs_X_Sunneedazee
mrs_X_Sunneedazee Member Posts: 541
edited June 2014 in IBC (Inflammatory Breast Cancer)
I am a 28 year old who has been diagnosed with IBC. It has spread to my lymph nodes, and my bones. I am still waiting to do my PET-CT scan to check organs.

I have tried to remain positive this last week, but I am wondering if there is any hope for me or if it is too late. Is it possible to survive this form of breast cancer if it has spread like this.

I have young children, and I need to know what I am facing.
Please help!
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  • maryannecb
    maryannecb Member Posts: 1,453
    edited May 2007
    Wow, you have been hit hard. There are many women here with IBC and mets. Each has a different story to tell. You will find tables and estimates about survival but remember you are an individual with your own strengths.

    You will soon have a plan in place for treatment. This will help you focus your thoughts.

    Be hopeful that your treatment will allow lots more time with your young family.

    Fists up!
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  • lexi4
    lexi4 Member Posts: 1,074
    edited May 2007
    I am so sorry that you have been diagnosed. IBC is really aggresive. I was diagnosed in August 05 w/ IBC at 35. Please know that your docs will treat you aggresively. Probably chemo first, then mast, and radiation txs to follow. Have you found out your pathology? Her2+ would allow you to have hercetpin or tykerb which have some really positive news on IBC. If you are hormone positive there are options there,too.

    Please know that you are not alone. Tx is tough, but you will be tougher. You are in my prayers.

    HUgs,
    Lexi
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  • alberta
    alberta Member Posts: 7
    edited May 2007
    I am so sorry to hear about your diagnosis. I was diagnosed in October 06 and have done a lot of reading and questioning about IBC. One of the wisest people I have talked to was a researcher from Harvard who was speaking at a conference in Towson, Maryland. He cautioned me against looking at all of the statistics that are published on the internet. He said that most of them are old data and that the outlook for IBC patients is much brighter now with new medications such as herceptin and tykerb and because more doctors know about IBC at this time and can treat it more aggressively than in the past. It really stinks to be in this "club", but know that brighter days are ahead and you will be sharing them with your kids.
    Let us know how your PET scan turns out, okay?
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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited May 2007

    Thanks for your responses. I am still trying to come to terms with all of this. I will get the pathology results this afternoon. I have been praying lots and received lots of support from my family. I know it will be hard, but I need to be here for my children so I will beat this thing!

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  • Squeaker
    Squeaker Member Posts: 87
    edited May 2007

    Baby steps first lead to dailey routines while you get on your tx plan. There is great comfort in that alone. You're perhaps in the hardest part of the journey ... knowing what's going on but waiting for the fight to start while all these scarey things about chemo, tests, surgery, radiation are being lobbed your way. Be gentle with yourself and those you love, build a strong medical team around you that has experience in IBC and trust that we're here to help you along the way! You CAN do this, we're your proof. Good luck w/that path report this afternoon and hang in there.

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  • RobinTN
    RobinTN Member Posts: 654
    edited August 2007

    Have you gotten the PET scan results I am sure you have by now.Please post and let us know how you are and how your treatment is going.we are here for you if you need us.Dont hesitate to post ok?

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2007
    I am still here. I don't post often, but I lurk and read lots! My cancer had spread to one spot on my lung, and throughout my bones including hips, pelvis, back, and ribs. Luckily, it hasn't spread to any other organs.

    I started Chemo on May 24th. I have weekly Taxol and Herceptin, with a break every 3 weeks. I also receive Zometa to help with the bone mets.

    I had a follow up PET-CT scan on August 9th, and the results were good. The cancer has shrunk, but it still has a ways to go.
    I am feeling lots better about things. When I was first diagnosed I felt like my life was over. But after reading lots and starting treatment, I am optimistic that I will still be around for a while. My friends and family have been TERRIFIC in all of their help with child care, housework and meals.
    I will still have at least 1-2 months of the Taxol and Herceptin, and then a Mastectomoy and then 5-6 weeks of radiation. Then I have to have my ovaries removed and/or be on Tamoxifen. I will have to be on Herceptin the rest of my life, but at least there is treatment out there that is working.

    I am just grateful for everyday that I am still here and able to interact with my family. I may not be able to do what I used to do, but at least I am here!

    Thank you everyone for all of your well wishes and sharing your stories. It has really helped me come to terms with my cancer!!
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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2007
    Sunneedazee,

    I am sorry that you have joined our IBC club. I am sorry that your dr didn't take your symptoms seriously sooner. But, your attitude sounds awesome! It sounds like you have many weapons in your arsenal to beat this cancer back. Stay strong sister! We are here for you!

    Hugs and Prayers,
    Lexi
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  • Sierra
    Sierra Member Posts: 1,638
    edited August 2007
    Hello:

    I just wanted to send out
    some hugs and very positive
    thoughts for you tonight

    Breaks my heart to read this
    you so young and with children

    There are some wonderful sisters
    here, Lexi and all the others


    Hang tight..

    YOU have a wonderful outlook
    and attitude.. and gotcha at
    the top of my prayer list
    tonight
    Lots of white light for you
    and a rainbow..


    Hugs
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  • jan125
    jan125 Member Posts: 411
    edited August 2007
    You sound just like me, only I was 29. I did Taxol, Carboplatin, and Hercptin. I am coming up on my yearfrom my first clean PET/CT scan.
    I am on herceptin for lofe too. My onc. says if it ain't broken, don't fix it.
    I know one lady who is 3 years NED with liver mets (like 80% of the liver). She has been on herceptin the whole time.
    Post on the HER-2 section. You might get some info. there too as well as on the mets section.

    Jan
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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited September 2007

    I just had my 29th birthday.  I thought when I was diagnosed that I wouldn't make it to 29, but I did.  My DH says that we will have a rager for my 30th.  It has been 4 months since I was diangosed, and I am finally starting to feel better.  The pain in my bones is feeling better as the Zometa helps the bone heal.  I am so tired from the Chemo, and I look forward to the day when I am in remission.  I have a lot of hope, and thank everyone for all of their help and support.  It helps so much to read about others experiences. 

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  • Shannon410
    Shannon410 Member Posts: 5
    edited September 2007

    Bless you on your 29th. Stay strong, keep posting.

    Your 30th will tear down the house!

    Huge hugs to you.

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited October 2007

    Just another update.  I finished 17 treatments of weekly Taxol and Herceptin, and I am scheduled to have a Modified Radical Mastectomy tomorrow, along with a supracervial laprascopic hysterectomy and oophorectomy.  My Drs are extremely pleased with how well the chemo shrunk the cancer, and they are hopeful that I will no longer need radiation.  I will know more once they see how much cancer is left in the breast, but I am glad to have hope.

    It has been 5 months since I was diagnosed.  I remember reading online about women being dead 6 months after diagnosis, but here I am, better (and BALDER) than I was.  It has been a hard road, but I am grateful for the knowledge and blessings I have received.

    Wish me luck on surgery!   

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    I wished you luck about an hour ago but my post hasn't shown up.  Anyway, it can't hurt to wish you more and many cyber hugs.  I'll be thinking of you tomorrow.

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2007

    I wish you luck on your surgery. 

    Laura

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited October 2007

    Thank you thank you!

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  • lexi4
    lexi4 Member Posts: 1,074
    edited October 2007

    Sunneedazee,

    I will be thinking of you tomorrow. Prayers for a smooth and uncomplicated surgery and complete healing.

    Hugs,

    Lexi

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  • kimmie39
    kimmie39 Member Posts: 319
    edited October 2007

    Luck  Luck  Luck

    Positive feelings and energy sent across the way to sunneedazee 

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  • Calico
    Calico Member Posts: 1,108
    edited October 2007

    Sunneedazee,

    I hope your surgery went well and you are resting comfortably.

    Sending prayers your way!!!

    God Bless

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  • nevaeh
    nevaeh Member Posts: 85
    edited October 2007

    "What to Expect?"  I am sure you will find, as I did, is the one thing you can expect and count on is the goodness of other people.  There is so much kindness and caring out there that I was not even aware of.

    We, on this list are here for you!  Please know that and keep your spirits up.  Do your best and God will do the rest.

    My prayers and best to you.

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  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited October 2007

    Sunnedazze,  Hope the surgery went well.  Take it easy, and don't try to do anything.  Let other peole take care of you.  Lay back and enjoy life.

    God bless you,

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  • divineintervention
    divineintervention Member Posts: 1
    edited November 2007

    Wow, you are all such amazing people. What an inspiration. I was just looking for some information for my friend Divine, who was recently diagnosed with IBC.  She had her 32 Birthday yesterday.  I am going to let her know about this website.  I think this will be very helpful for her.  Since unfortunatly know one we know has any answers.  God Bless you all... and thank you for educating us.  "Thru our suffering we are made perfect". My prayers are with you all and your family's.

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited November 2007

    Thank you, all for your prayers and well wishes.  Divine, be sure to refer your friend to this site.  The support is amazing.  Thank you for sharing that beautiful scripture with us.  It is a good reminder. 

    I am recovering well from surgery.  I can't believe it was 3 weeks ago already.  Everything went well on the surgeries, and every day I feel better.

     I will indeed need radiation.  Cry  There is a high chance of local recurrence because it was in the skin and lymph nodes. 

    I have my radiation consult on Nov. 27, and my simulation on the 28th. One step after another on this hard journey, but the support from the women on this site help me keep on putting one foot in front of the other on this long hard road we travel.   

    Thank you all for your well wishes and prayers.  It makes all the difference!!!! 

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  • kimmie39
    kimmie39 Member Posts: 319
    edited November 2007

    Hi gal -

    Great to here you are doing so well after surgery. (mine is 11/28) 

    Keep me informed.

    And take good care of yourself.

    Kim 

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  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited November 2007

    Sunnedazzee,

    I had to do rads previously.  For me it was a walk in the park.  Just go in talk to the technicans, expose yourself, and leave after 5 more minutes.  I had very little redness.  I probably was fatigued in that I did not want to start any new projects at night, but it was not debilitating at all.  Getting set up with the simulation, etc. is a bit of a hassle.  Mine was wrong, and when I went in for the first treatment, they started all over with another CT scan.  But once it got going it was really easy.

    I am still in limbo land as far as my diagnosis.  Breast is still a little pink, there are still some orange skin areas (Not as turgid as when it was firey red).  Between lumpectomy scars and radiation, I cannot tell what is a lump and what is normal.  I have my repeat MRI next week.  I wonder if they will find something to biopsy!  I sometimes say that my poor, estrogen deprived, postmenpausal skin just doesn't have the elasticity to return to normal and that it was just mastitis.  However, I know I am probably just fooling myself.  Patience is a virtue they say.

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