Young BC Survivors: Support questions

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    Here whenever U need to talk

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  • Tricia81
    Tricia81 Member Posts: 27
    edited March 2013

    Hi Everyone! So glad I found this thread. It will be nice to connect with others close to my age. Just like all of you I never thought I would be going through this in my early thirties. 

    1. I was 31 when diagnosed, 28 days shy of my 32nd birthday. Triple positive, Stage 2a. 

    2. Do you/did you have children during diagnosis/treatment? Two daughters. Ages 4 and 2. 

    3. What was most difficult for you physically during treatment? I start chemotherapy on April 12, 2013. I'm very nervous on how this will affect my girls. It already has been tough not being able to pick them up and carry them since my surgery on March 4th, 2013.

    4. What was/is the hardest part mentally and emotionally for you? Being a mom! I just want to see my girls grow up and I don't want this to have a negative affect on their childhood. We already had to take my 2 year out of her crib because I knew I wouldn't be able to lift her out once my husband returned to work after my surgery (I'm a stay at home mom). I just feel like she is being forced to grow up. 

    5. What do you wish was "out there" for young breast cancer patients/survivors? (i.e. what kind of support did you not get that you wish you could have had?) I know this may sound silly but I wish there was more resources for bating suits and hairwraps for women our age. I'm finding a hard time finding hairwraps (I'm not sure if I'm going to buy a wig at this point, especially with summer around the corner) and bating suits for thirty-somethings :)

    FYI I just finished the book Nordies at Noon and I would advise to stay away from the book. Although the first couple of chapters dealing with surgery and chemotherapy were helpful, it left me depressed at the end. 

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  • Bishops2003
    Bishops2003 Member Posts: 60
    edited April 2013

    Glad to have found this-

    I was 32 and pregnant with my 4 th when I was diagnosed. My oldest was 5. Fatigue, nausea and pain during reconstruction are tough but it is the lost time with my children and husband and worry about the future that I struggle with. I am triple negative and even though I got NED a few days after my BMX in March, I have not had much relief. I want to see my children grow up and see what kind of adults they become and how they bless this crazy world.....all that kind of stuff.

    A great resource I found is ReThink Breast Cancer. It is just for younger women and it helps but until a cure is discovered I doubt I will have real peace.

    :)

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  • hydeskate
    hydeskate Member Posts: 297
    edited April 2013

    1.  I was dx @ 29 in 2008 with Stage IV Triple Negative Breast Cancer Brac 1+, have been NED and off chemo since Sept 20092.  Single with no kids, however I do have 200+ college athlete's I work with on a daily basis, dress them, wash there clothes, give advice, no more about there personal life than there parents or coaches...

    3. Really was lucky that I didn't have symptons during chemo, but after I stoped and my immune system came back online I was smacked with an autoimmune disorder that is called Sjogren's Syndrome.  Bascially my immune system is attacking healthy cells in mositure making organs, aka mouth, nose, really I have side effects of chemo without being on chemo dry mouth, joint paint, rhynards syndrome etc.  Doctors think this disease is keeping my cancer in check, it is uncurable just like the cancer we have to treat the flare ups.  Meaning I have to take a bunch of expensive meds every month cause the only ones that work are the ones that don't have a generic brand..lol

    4. Tell the family I had Stage IV, when my mom had only passed away 2 years prior from Stage IV ovarian cancer and the extended family still hadn't got over her loss.  No one realized she had Stage IV she hide if from the entire family.  I knew only becasue she lived with my 2 hours away from home to recieve treatment and I typed up her questions and side effects.  It started a carebridge page for the family so they would stop calling me and my sister way too overbearing.

    5.  There needs to be more support programs to deal with finacial aspect and research in the last effects from throwing everything and the kitchen sink at the cancer like my doctors did.  Yeah I am stable NED whatever but my body feels like I am 80 and becasue the MEDs I am on I keep getting AARP flyers in the mail and others aimed at those over 60...umm I am like 34 now.

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  • kmadigan
    kmadigan Member Posts: 15
    edited May 2013

    I haven't posted for a while and i don't check here often, but I thought I'd stop by to see what is up.  I finished 16 cycles of chemo in April.  The adriamycin and cytoxan combo was tough but you will get through it if that is what you need to do.  Everyone is different, but for me I was nauseous most of the first week after each dose and very tired.  My daughter was 6-7 months during that period of time and I relied heavily on my husband and parents to help with her.  Don't feel guilty if you can't do it all.... I kept telling myself I needed to rest now so I could be with her later.

    Taxol with Herceptin was a cakewalk for me compared to the AC treatments, but towards the end of those treatments my white blood cell count dropped really low and I needed shots to boost my counts and finish treatment.  I was very tired during those weeks.  Again.... you CAN DO IT. 

    I now have started radiation and am continuing my Herceptin treatment.  The best advice I can give anyone who is going through this is please take advantage of any support groups and counseling you possibly can.  My husband and I do counseling together, which has been the best choice we ever made.  We have an excellent marriage, but being young with a baby and cancer is tough.  Counseling gave us a chance to talk openly about our fears and know we were actually concerned about a lot fo the same things.  If you are single, counseling on your own or with your family can really help you sort out all the ups and downs of this disease.

    I think one of the hardest parts is many people, even some of those closest to us, just want this to be over for us, so they don't get that this will be with us always.  The worry is there.  I can say that a few months ago I was literally on my knees, in tears, begging God to let me be here for my daughter.  I went through a few weeks there where I cried every day.  But I can tell you I'm so much stronger now.  It isn't that the worry doesn't come.... but it goes too.  I am able to smile and laugh and enjoy life.  I wasn't sure I'd find that again, but I have. 

    So I guess I'm writing to check in and say that if you are in one of those down moments, know that the up moments are not gone forever.  This is tough, and there will be moments when you are unsure, but you can get through this.  It may seem like a genuine smile will never cross your face again, but it is possible for you to be happy again -even with breast cancer.  Good luck to you all!

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  • Shari0707
    Shari0707 Member Posts: 448
    edited May 2013

    Kmadigan loved ur positive post

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  • ALCS97
    ALCS97 Member Posts: 14
    edited May 2013

    I am 33 with two children ages 3 and 7 months. Was diagnosed with DCIS last month and had lumpectomy and sentinal node dissection. I am fortunate that it was all DCIS so I'll do radiation but not chemo. The biggest challenge for me is to not let this diagnosis overtake each day. I've been given a renewed appreciation for the simple joys of being a wife and mom, and I am determined not to let fear and worry be the driving force in my thoughts. My faith and my community of friends and family are helping me stay focused and positive. It can be hard, though!

    Much love goes out to everyone who has shared their stories - I really did feel like I was the only nursing mom who was dealing with this, but that is cleary not the case and so it is encouraging to know that I'm not alone.

    What I would share with other young women is to be proactive - I went to the doctor a few months ago and they told me it was probably nothing and didn't recommend any further testing. After thinking on it for a couple months I persisted and requested a breast u/s and was diagnosed two days later. It's so easy to just breathe a sigh of relief and move on with life when a doctor says it's probably nothing, but when it's your life involved, listen to your instincts and get a second opinion if needed!

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