HELP!!! PLEASE HELP!!!!

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seraphim143
seraphim143 Member Posts: 3
edited June 2014 in IDC (Invasive Ductal Carcinoma)
I am starting this post to find the help/support that I know is out there... My Sister-in-Law Lisa is so scared and I am desperate to get her some help for her questions, fears, anxieties, etc.  She is a mother to four beautiful little girls all under the age of 8 and this past August, she felt a lump in her breast while holding her youngest during a nap.  She quickly went to the doctor and the process began in a whirlwind.  Now she's a few months in and due to begin chemo next week.  She's had 2 surgeries and to the best of my knowledge, she has Stage III ductal carcinoma with node involvement.  Her doctors at Sloan Kettering in NYC say they are confident the cancerous nodes and tissues have been surgically removed but due to the possibility that just one cancer cell could have migrated elsewhere in her body, she will be given the most aggressive chemo available and it's been up'd to 6 months of chemo from 3.5 months originally, to be followed by radiation.  The problem is this-- my poor, sweet Lisa is suffering tremendously.  She has so many questions and fears, all completely normal and appropriate for what she is going through, but she has no source of encouragement from women currently going through the same thing.  Of course the family is supportive in many ways but without any one going through cancer before, she is really going it alone in this area so to speak.  With 4 girls there is little time to surf the internet and I don't think she knows where to begin.  So I am desperate to find a strong online support system for her to answer all these things that are eating her up.  To compound the stress of all this, she still has the surgical drain in several weeks after her second surgery so driving to support groups in the area is not an option.  She is due to begin the 6 month regimen of the most aggressive chemo next week and on Nov 9th she went for blood work, etc and was given 9 different Rx's to fill and take throughout.  Now she is scheduled on Monday for a PET scan to detect any wandering cancer cells that may have gone elsewhere.  The two main problems I am need urgent help for is this: first of all, she has mentioned on two separate occasions that she is considering not doing chemo. I suspect it is likely due to her fear of the unknown and anxiety. I am hopeful that getting her onto this message board will take care of this part at least. We need encouragement and an idea what to expect from women who've endured chemo. The doctors can only answer so many questions, ya know? I think if she can read other women's experiences with chemo she can better cope with the anxiety that comes with a new treatment.  She had tremendous anxiety before the first surgery and was a "Pro" by the second surgery so I know it will be the same with chemo; if we could just get her there!!!   Now she says that she wants to delay chemo until after the PET scan results are back and if there is no cancer on the scan then she won't do the chemo.  I am so afraid that she might give into her fears and it could have disastrous results.  Her thinking is that she's already getting the strongest chemo out there, & since there is nowhere else to go from the top, she thinks delaying it until there is definite proof the cancer is elsewhere in her body and chemo is mandatory will do no harm.   I don't think she is equating the reason why the doctors are ordering this regimen... which brings me to my second problem we need help with:  maybe it's denial, maybe it's just plain anxiety, I don't know, but Lisa is suffering tremendously with all of the emotions that come with this bag of tricks. She is definitely depressed, scared out of her mind (hell, we all are!!!) and crippled with anxiety. She is not at fault for it, who could blame her?!? But the 5 stages of grief (denial, anger, bargaining, depression, and acceptance) are not flowing smoothly and I know when you get stuck in any one stage you need help to get through. I hope this forum can be a help to get her to the other side. The goal is to get through treatment so she can become a "survivor" and I think encouragement and personal stories of strength will help so much. I am going to visit with her this morning and sit down at the computer to show her this forum. I hope to have some responses to share with her- so if anyone has the time today to reply with your experience, strength & hope, it would be so very much appreciated.  Naturally, all of the side effects of chemo have her afraid- losing white cells, medication regimen, hair loss, pain, sickness, nausea, infection etc etc etc. Also, how to not scare her girls with the effects of it all. She is the ultimate SuperMom, always putting her girls first, being more worried about what they will experience then herself. We can't take care of our kids if we don't take care of ourselves first though and I need help to get her to acknowledge and do this.  Of course, it is her body and she is the ultimate decision maker.  I just hate for her to make decisions based on fear.  Fear of the unknown... So through this I hope to take some of the fear out.  Thank you ahead of time and God Bless to all the women getting through this.
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  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2011

    Hi StrengthforLisa and welcome.  You have found a great site for support and learning and I would encourage your friend to join.  There are many women here who have been through the same thing and others going throught the same thing so we know just how she feels.

    Her cancer is a tough one to deal with but I'm sure her docs are going to do all in their power to help her get through this.  This site has a tremendous amount of information available to all of us and it is here that she can find all the information she requires to make the good decisions for herself.

    I look forward to welcoming her.

    Love n hugs.  Chrissy

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  • marlenet
    marlenet Member Posts: 345
    edited November 2011

    StrengthForLisa-I remember the fear all too well.  I did go through chemo and it wasn't as bad as I was thinking.  I worked full time(except chemo day ) the entire time.  I rested when my body was tired.  I ate very healthy foods and before you know it,,,, it was over.

    I lost my hair but hair grows back... and boy did my hair come back nice! 

    a co-worker who is stage lllA and is over half way done with  chemo (she too is getting 6 months of chemo)  She is doing very well on the chemo.  She has been working too.

    Today's medicines are not like they were years ago....

    You should have her go on this site or the Susan G Komen site for support and very good information.

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  • dogeyed
    dogeyed Member Posts: 884
    edited November 2011

    Your friend can go to a specific part of this forum and get LOTS of precise support for chemo.  Whatever month her chemo began, be it October or November 2011, she goes to the main forum list and goes into the one called, "Chemo, before, during, after," and then when she goes to that sublist, she finds her month and year, and in that thread will be all the women from everywhere who are also undergoing chemo treatment for the first time right now.  I joined that kind of group waaaaay back in February of this year, and they are truly my cancer sisters now, it was the longest and most difficult part of treatment, and all of us experienced exactly what your friend is going thru.  This online support group is invaluable in helping us thru such things.  Some people check in when they can, others post every day, some have more weeks behind them, others will be newer than your friend is. 

    On the not doing chemo thing right now, I can offer this support:  After just the second chemo, I was in a lot of discomfort, to say the least, and I told my cancer doc I was done with the whole program, and this was a meeting with me, my doc, his nurse, and another coordinator type person who took notes.  My doctor, with great wisdom for so young a man, was able to say exactly the right things to get me back on track.  But the biggest one was the high probability of RECURRENCE.  While it may not spread and all that jazz, chemo is essential for cancer not to come back ALL OVER AGAIN in the very same spot!  I cannot imagine a worse scenario.  The original site is where all the cancer is/was.  So, he offered better pain control, gave me a week to get over what had been a very rough few weeks with the side effects of chemo, and within days I got over my little fit and was back on board.

    In addition, my last point is this:  Nowhere near as many women die of cancer as they did during our mother's time.  And this is because of endless research, studies, trials, all focused on one thing:  To keep us ALIVE.  And far be it from me to doubt what protocols have been accepted as being the most successful ways to go at this thing.  We might THINK we know what is going on, but WE DO NOT.  Sometimes I think back on how much attitude I had that was entirely baseless, for I simply did not know all the ins and outs of cancer.  That's why we have specialists in breast cancer, to lead us safely out of the terrible darkness that we unexpectedly find ourselves in.  We cannot think straight, either, whilst in the throws of the shock of cancer breaking down the door and coming into our lives.  We must find trust in our doctors and do exactly what they say, period.  And any delay... only makes it harder to defeat cancer.  The earlier it is treated, the chances of survival are vastly improved.  Hope this helps your friend.  She needs to get in her month's chemo bunch.  Let us know.  GG

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  • caaclark
    caaclark Member Posts: 936
    edited November 2011

    Send her over to the stage III forum.  There are many of us who have been treated and are doing well. 

    When I was diagnosed my daughters were 4, 6 and 8.  I remember well the fear she is feeling.  I was terrified of chemo but as it turns out I got through it way better than I thought I would. 

    I'm not sure how old Lisa is, or her children, but I remember not knowing how to explain it to my children.  I looked for children's books and could not find many that fit my need.  I wanted to explain it without scaring my kids.  I ended up writing my own after treatment (see my tag line).  Besides mine that is currently out, there are others that have been published within the last several years which may help her.  Tell her to do an online search (or you do it for her).

    Stage III is scary but treatable.  I agree with what others said about chemo.  It is not what it used to be.  I also lost my hair, as most do, but I got through it fine and it grew back quickly.  I was never sick-not even one day because the meds given for nausea work really well.  I did not work through chemo because I was a stay at home mom at the time but I could have. 

    Additionally, if she is as anxious as it sounds her dr. should know this.  They have meds to take the edge off the anxiety.  These meds are typically used temporarily.

    And, finally...I was diagnosed at age 40-scary, scary path. report-even had cancer coming out of one of my lymph nodes.  That was over 5 years ago.  I am now working full time as a second grade teacher, my husband and I recently made a life style change and he is working from home(rather than commuting to NYC-1 1/2 hours each way) and my children are now 10, 12 and 14!!! 

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  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    Sometimes things are as bad as they seem and this is one of them.

    Having said that, it's also time to choose courage.

    You've found an excellent resource in this web site.

    Hold your friend's hand as she walks through the maze of her diagnosis and treatment choices, knowing your presence in her life is the greatest gift you can give to her.

    Know many people, friends and strangers (this site) love you and your friend.

    Please read "What do I do now? Choices!" below.  Take what you like and leave the rest.

    Knowledge is power!  You have choices to make, listen to your friends or family, your doctor(s).  Then make choices for your body, your life!  Control may be an illusion; however, take control of the power you possess.  

    Every female breast cancer patient must ask herself some hard questions such as these:

    • What kinds of side effects are you willing to accept? 
    • What will you go through for a small chance to live longer? 

    http://qualitycareguide.stopbreastcancer.org/choice/decision.html

    • Read cure (Cancer Updates, Research & Education; curetoday.com) 2011 Edition CANCER RESOURCE GUIDE written in association with the American Cancer Society (ACS).  Call the ACS at 800.227.2345 for a copy (free or $4.99)
    • Read Dr. Susan B. Love's Breast Book, available at Amazon.com (new or used), "the bible" for information.   My surgeon gave a copy to me.

    Beware of  "Choices according to the Bible of the Most Recent Clinical Study."   When researching the net for help, review clinical study participant number, who did a study, and specifics; when a study was done and by whom~look for a trend (3 studies with similar results) in results/credibility.

    Pray, invite people to add you to their prayer groups.  God loves you because you are breathing.  If you do not believe in God, that's okay...remember many people love you. 

    Realize that treatment choices are in your hands.   Ask yourself about practical considerations, your age, your priorities to name just a few.

    • Consider the free web site CaringBridge.com, a private communication web site, to be supported in love and support your friends and relatives in love.  Studies show people who express themselves and receive moral support fair 2 to 4 times better (healthier) than those who do not.

    Bottom line:  do your research, talk with people you trust, listen to your wisdom ~ then make YOUR healthy choices for you!

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  • Miles2Go
    Miles2Go Member Posts: 120
    edited November 2011

    My husband just retired from an exceptionally stressful job.  Congratulations to your dear husband for what I consider a very wise choice.

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  • badger
    badger Member Posts: 34,614
    edited November 2011

    hi StrengthForLisa, this is a really scary time and bless you for being concerned.  I was diagnosed two years ago.  Had surgery and chemo and am doing really well now.  I worked throughout chemo, only took off infusion day and the day after.  Breastcancer.org is a fantastic resource and I would highly encourage your SIL to come here for information and support.  {{hugs}}

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    StrengthforLisa - please let Lisa know that PET scanning will only show established distant spread.  Having a clear PET scan does not mean that she should not go forward with chemo.  The surgery she had removed the known cancer, the chemo that is planned is to eliminate any stray cells that have not yet established themselves.  Tell her to think of chemo kind of like an insurance policy.  While chemo is not fun, it is temporarily unpleasant.  There are medications to offset side effects and this discussion board is full of testimony from women who managed to live their lives during chemo.  Anticipation prior to beginning chemo is ridden with anxiety, but most of us found that chemo was not nearly as bad as we thought it would be.  Best to you both, you are a good sister-in-law!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2011

    Hi StrengthForLisa,

    As you can already see, our boards are a fantastic resource for advice, comfort and support! We know the ladies here will take good care of you and your sister-in-law throughout this journey. The previous posters have provided some good resource information; the main Breastcancer.org site also offers a breadth of knowledge on the entire breast cancer experience, including information on Chemotherapy, What to Expect with Chemotherapy, Managing Treatment Side Effects, and also practical Day-to-Day Matters like Talking to Your Children about Breast Cancer.

    Also the ladies have mentioned other forums you might direct Lisa to. You might want to try:

    We hope you find all of this information helpful!

    --The Mods

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  • seraphim143
    seraphim143 Member Posts: 3
    edited November 2011

    Thank you all so much for the posts. I'm headed over to her house now to show her and hope she'll be on soon to get to the nitty gritty of her ?'s.  Your time and words mean so much.... I cannot express how grateful I am. 

    Laughing

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  • badger
    badger Member Posts: 34,614
    edited November 2011

    this is for you, and Lisa, and all of us really, it's the song in my sig line:

    I'm Gonna Love You Through It  http://www.youtube.com/watch?v=WxIt70j_SPk

    and while I'm at it, here's a video that helped me a lot when I was first diagnosed:

    The Pink Glove Dance  http://www.youtube.com/watch?v=OEdVfyt-mLw

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  • SheChirple
    SheChirple Member Posts: 954
    edited November 2011

    OMG that pink glove video, and all the realted sequals..they made me cry!  How awesome is that!

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  • khuja
    khuja Member Posts: 3
    edited November 2011

    StrengthforLisa...how wonderful that you are reaching out on behalf of Lisa. There is a wealth of information here on this site and on others. You described her as SuperMom and sometimes asking for help is the hardest in the midst of fear.  I am using a website www.lotsahelpinghands.com.  It has been a blessing and a great way to coordinate assistance and support. My friends and family leave me inspiration and strength in their mesages. 

    Best wishes to you...and Lisa. 

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  • Racy
    Racy Member Posts: 2,651
    edited November 2011

    dogeyed, you have a talent for 'telling it like it is' :-).

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  • ndandrea
    ndandrea Member Posts: 2
    edited November 2011

    Stacy, Thank you starting this post for my sister Lisa. Support is exactly what Lisa needs and exactly what everyone who loves her is commtited to deliver. It is comforting to know that the support group is growing by the day. Stay strong Lisa!                     

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  • ndandrea
    ndandrea Member Posts: 2
    edited November 2011

    For Lisa 

    We will walk with you
    When it is darkest before the dawn
    We will carry you
    When you feel you can't go on

    We will comfort you
    When you need someone to hold your hand
    We will pray for you
    When one set of footsteps are in the sand

    We will hear you
    When you need to share your fears
    We will cry with you
    When we see your face in tears

    And we will rejoice with you
    When nightmare leaves without a trace
    And we will dream with you
    When the light again adorns your face

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  • marlenet
    marlenet Member Posts: 345
    edited November 2011

    For Lisa

    what cancer cannot do:

    • invade the soul
    • suppress memories
    • kill friendship
    • destroy peace
    • shatter hope
    • cripple love
    • corrode faith
    • steal eternal life
    • silence courage
    • it cannot conquer the spirit

    Stay strong Lisa!

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