Young with IDC, needing Chemo

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sb1999
sb1999 Member Posts: 9
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi all, my very first time to post on this board.  A little nervous, but I would really like the input and someone to talk to that has/is/will be going through this. 

I'm 32 years old, diagnosed on August 1 with IDC. I had a single mastectomy(left) done on August 9th and I thought the worst was over.  I was wrong.  Just got done with my oncologist appointment and got the news that I will need chemotherapy (TCH).  Receiving this news was far worse than the surgery or receiving the news that I have breast cancer.  I am with mixed emotions over all of this.  Scared of the side effects: scared of losing my hair -I have always had long, thick hair and the thought of losing it makes me so angry.  I am constantly asking "WHY ME?" "What have I done to deserve this"...I know that there is no true answer and I am sure that all of you beauties have/will have/had the same question.

I am scheduled to recieve a bone scan, port for easy blood/iv draws, and echocardiogram before my chemo treatment begins.  I was told that I will be given 1 dose every 3 weeks for 6 treatments.  Anyone out there going through the same process?

Anything encouraging or to share your stories will be so helpful to me...just looking for people that understand what I am going through.  I love my family and friends, but none of them know or understand how I am feeling.  Its hard to discuss with them because they don't have to face what I do.

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  • Annie54
    Annie54 Member Posts: 247
    edited September 2013

    Hello sb1999,

    Sorry you have had to join us...but we are all in this together and are great support for each other. I just finished 6 rounds of TCH a couple of weeks ago. Yes, I lost my hair - which sucked but I found a wig that was very close to my hair color and style and honestly, few people could tell it was a wig! I did have to try on a lot of wigs that looked comical before I found the right one though. I also wore hats, mainly fedoras, which are in style these days so it really wasn't so bad.

    I was fortunate not to have very bad side effects from the chemo....wasn't a walk in the park but was doable. I worked all the way through but am self employed so could take naps or days off when I needed. The meds they give you now keep nausea at bay, I was never sick  - the worst SE I had was indigestion which Previcide took care of. The fatigue and chemo brain got worse as the treatments went along but you adjust to it. Now at two weeks after my last chemo (pcf), my hair is growing back and I have energy again. The 18 weeks of TCH seemed long and very short at the same time. You'll get through it. I looked at chemo as my personal army that went through my body wiping out the enemy. And I can't say enough about Herceptin....liquid gold in my book. For us Her2+ gals it is the magic bullet.

    Check out some of the other threads - especially the Chemo one. There is usually a new thread for women starting chemo each month - gives a smaller support group of people going through it the same time as you so you can compare notes. There is also a thread for "younger women with bc" and one for TCH. They will all give you a ton of information - which at the beginning of this journey can be overwhelming! Take a deep breath and know that once you have a treatment plan in place...it's not so scary. You know what to do and get on with it! Good luck and feel free to ask any questions.

    Annie

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited September 2013

    Hi sb1999 and welcome to BCO. When we hear the word chemo and it is being directed at us we all feel that overwhelming fear of the side effects and hair loss. It is truly a daunting thing to have to face.



    I will be honest and say yes, there are side effects and yes you will most likely lose your hair but the bottom line is, because for a little while you will feel terrible and in your eyes look terrible you will more than likely be able to live for many more years with no problems.......is that not worth it?



    It's not easy but it is doable and there are many meds available to you to alleviate the side effects so they are also tolerable. Every treatment you have is one less treatment you need.



    Good luck!



    Love n hugs. Chrissy

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  • sb1999
    sb1999 Member Posts: 9
    edited September 2013

    Thank you so much for your replies.  It truly helps talking and hearing of others that have gone through this horrible disease. My husband and best friend took me wig shopping today.  Was successful.  My son said that I didn't look any different to him! YAY! It will be the longest 18 weeks of my life, but I will tough this out as each one of you have. 

    Annie54, I love the analogy of using chemo as a "personal army" to the enemy.  That's a great way of looking at it.  THANK YOU!

    chrissyb, thank you for being honest with me and not sugar coating anything.  I would rather lose my hair for the 1 year than to not see my 5 year old grow up.  I would never be able to forgive myself for giving up because of fear.

    I'll definately check out the other threads on chemo! Thank you ladies for the support!

    XOXOXO!

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  • mdg
    mdg Member Posts: 3,571
    edited September 2013

    I am sorry you have to go through this.  Chemo was the hardest part for me.  There are options though. I used Penguin Cold Caps and was able to keep my hair.  It allowed me to feel "normal" during chemo when everything else in my life was so NOT normal.  Whether you use caps or not, soon chemo will be in the past and life will slowly return to normal.  It is a long process, but it will get better. I am almost three years out from my dx and life is good.

    Hugs!!!

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  • Annie54
    Annie54 Member Posts: 247
    edited September 2013

    Another thing.... I have a friend that was diagnosed in 1995 in her mid 30's, at a time when they didn't have all the arsenal of drugs there are now. She went through chemo and rads - and is alive and well today 18 years later. So focus on that and keep the faith!

    Annie

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2013

    Welcome to  BC.org. Sorry to hear of your Dx, but I'm glad you found this website. I've received a lot of support and good information here and hope you will too.

    I also know someone else who was Dx'd at 32 and now is in her mid-60s. It's the wife of one my coworkers, and I had no idea that she'd had BC. But when she heard I was diagnosed, she emailed me, told her history, and then said she was planning to throw a big party on her 90th bday and said she expected me to be there, dancing with her. (and just think, medical has advanced so much in the last three decades!)  

    For me, the WHY ME question was more "What caused me to get this???" (was it the food, water, chemicals, etc?)  I ate a mostly vegetarian diet, exercised, etc. (and have plenty of relatives with worse health habits and similar genes, so why me instead of them?) That line of questioning never got me anywhere, but maybe it's a phase we all need to go through. Anyway, at some point I did make some changes, like reducing my exposure to certain chemicals like BPA. But overall, based on the stories I've heard here and elsewhere, and the research I've done, cancer is a great big crapshoot.

    I agree--family and friends mean well but my experience is that, unless someone has gone through this, they will never completely understand.  Do you have a cancer support center nearby? I wasn't up for doing a full-on support group but I joined a Guided Imagery group (it's like meditation). I love it and still go now from time-to-time since I made good friends. (and sometimes I still get the cancerland heebie-jeebies, like in the weeks that precede my mammograms).  Also, my support center has free private sessions with professional counselors. I spoke to mine just twice during Tx but it was at crucial junctures and really helpful. (and my counselor had a wicked sense of humor. I also found it helpful to have one person I could be perfectly honest with not freak them out.) Anyway, I just wanted to pass this along in case there are support services nearby. I'm sure the last thing you need is one more thing to research but maybe you can keep this mind. If a friend says "Let me know if there is anything I can do" you can ask them to research the support services nearby. Good luck. I'll be thinking of you as you begin this journey. (((hugs)))

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  • Rockym
    Rockym Member Posts: 1,261
    edited September 2013

    sb, sorry to hear you have joined us, but I can say this is a darn good group of  ladies who probably know more than many of the doctors.  32 is very young to deal with this crap and the chemo recommendation is more than likely due to your age (if you didn't have positive nodes, etc.).  It appears you went from dx to mx pretty quick.  Unfortunately, you are right in that the worst isn't over.  This will be more than likely an uncomfortable end to 2013 and 2014 will also be rough.  I recall the last half of 2011 having many ups and downs and then 2012 for me was like climbing out of a deep hole where I kept sliding back.  Now that I am 2 years out, life is normal once again.  You will get there too :-).  I am glad to hear you have a supportive husband and your child can keep you grounded as did my 2 kids.

    My long thick hair bid me farewell, but I had a rocking wig and enjoyed the look.  Growing the hair back is a pain in the ass, but there are threads here to help you when you get to that.  On the bright side, I would have NEVER cut my locks, but I did give my hair to Locks of Love and felt better for it.  I now have shoulder length hair and have tried many hair styles along the way.  I haven't decided if I will keep growing it back to the old length, but for now it's kinda fun.  Something fun out of cancer???

    I never did a port since I wanted the least amount of scars on my body.  They did the IV chemo in my hand.  I also said no to the tats for radiation.  One thing that is important for you to know... you make the choices with the doctors guidance.  Do not do anything that you feel isn't right.  Too many ladies blindly follow what their BS, MO, RO, etc. say and when things don't turn out they wonder why they didn't follow their gut.  I did a few things different and I don't regret anything.  I made the choices and therefore, I deal with the consequence.  Quality of life is important when all is said and done.

    There is a thread called "get prepared" that can help you with tidbits about keeping track of paperwork, etc.  I was very big on using a computer pen during all my office visits where I was recording the doctor's recommendations so I could listen later and figure things out.  Oh, and NO, I never asked the docs if I could record.  Let us know how you're doing and good luck

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2013

    Sorry you have to join us here. I was diagnosed August 5th...I had my mammo August 1st. I will be undergoing 6 treatments of TC, starting Sept 20. I am on the Sept 13 chemo board, and hope you will stop over there as well so we can all see each other through this...one day at a time. I am 43 and I have 3 kids...9, 11, and 13.

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  • Sminns
    Sminns Member Posts: 5
    edited September 2013

    Hi sb,

    I am new here too and terrified of what's to come. I am 36 and have 3 kids. It may sound vain, but my hair, breast and physical appearance has been a huge part of my life. I'm mourning the loss of all these things. On the other hand, I know that I need to be alive for my kids and I have to have chemo to assure the best prognosis.

    I am having a really nice human hair wig made that looks like my real hair. I have awesome thick hair too. When I go to my appts at the cancer center, people working there always comment on my hair...like I need a reminder:(. But I guess they are trying to be nice.

    I will have 4 treatments of AC, followed by weekly Taxol and Herceptin x 12, then another 9 months of Herceptin. I start Sept. 12th. I will have my port placed that same morning. My surgeon is putting my port in my bicep so I won't have a scar on my chest that would be visible with a V-neck shirt.

    I understand what you're going through. I have no known risk factors for breast cancer. Even my teenager asked me "How did YOU get cancer?" I've exercised, eaten healthy and tried to do the right things. I don't know why. However, as bad as it sounds there has been some positive things that have happened around my diagnosis. My marriage is stronger than ever, my family is closer, I have realized how blessed I am with the friends I have around me. You learn to appreciate the small things and not rush through life. As hard as it may seem...try to focus on the positives in your life. It is those things that will help you find the courage to get through this mess :)

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  • Rockym
    Rockym Member Posts: 1,261
    edited September 2013

    Sorry Sminns that you have found yourself here too.  I can't tell you how many jokes I've made about the loss of my hair and what I went through with my breasts.  These were my favorite parts (physical) of myself and to have both areas messed with was tough.

    My kids are now 11 and 15, but had just turned 9 and 13 at the time.  I kept feeling like my illness was some weird way of showing them how to persevere and that they would have some life lessons.  My daughter used to like to talk to her friends of teachers and was very expressive thoughout.  She was actually the one who shaved my head in the end.  She was gentle and I think it helped her.  I had a beautiful long brown wig with beautiful red and blonde streaks.  When I wasn't wearing that one, I had a shoulder length blonde halo wig that I wore with a hat.  I never tried to hide or pretend that I wasn't going through a loss, but changing hair from time to time, made it fun.

    I promised myself I would get those same colors in my hair when I had hair again, but for now I'm just rocking the Clariol look :-).  Good luck beginning chemo.  Read up on what to expect.  I know that I was only wiped out on day 3 and 4 I believe.  I gave myself those days to chill and the other days I was biking, hiking, etc.  I would also enjoy a good meal for the day or so before chemo because after treatment, everything tasted disgusting.  There's tons I could pass on, but for now just remember... this will all be just a crappy blip in your life and you'll move on tougher and stronger when it's over.

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  • sb1999
    sb1999 Member Posts: 9
    edited September 2013

    THANK YOU ALL!!! Every single one of you have made such a positive impact on my soon to be treatment.  For those of you that is out of treatment...you have all given me hope and Faith! I cannot wait to be out and getting on with my life without this ugly disease.  I must say that I am grateful that there is a treatment for me.  Some women that I have talked to in the clinic/hospital say that I need to count my blessings when given, some of them...their only hope was that they get 2 years of life left before they leave this earth.  My heart sank for them that I was complaining about a treatment when they would have taken that over losing their life.  I too am thankful for the treatments out there and that is how I should continue to feel.  I know that I will have my good and bad days, but like you all, I will overcome!

    Sminns, I too am getting a wig out of human hair. Kiss  I also got one that is out of my norm in case there is a day that I totally want to rock something different.  I am totally with you on the "enjoying the small things, the simple things in life".  Its what I treasure the most right now.  My life was starting to get consumed by my work and forgot about what was important...my FAMILY and friends.  My husband has been so supportive and I cannot ask for a better one.  Our son is really by medicine and reason to stay alive!  I don't want him growing up without me around, therefore I need to fight this every day with all my might!

    XOXOXO!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2013

    Here is the link to the TCH thread:

    http://community.breastcancer.org/forum/69/topic/578284?page=545#idx_16323

    I had a hairpiece made from my own long hair that I cut off prior to chemo.  It had a soft top made of fabric and my hair was attached just above the ear.  I had to wear a hat, I wore ball caps or fedoras, but you could also wear a scarf.  I liked that it was my own hair, and it was the best money I spent during the chemo process.  The product is called an underhair and here is the link:

    http://www.hatswithhair.com/

    Also, have your oncologists write a prescription for a "cranial prosthesis" and many insurance companies will reimburse you for part, or all, of the cost of your wig.

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  • Sminns
    Sminns Member Posts: 5
    edited September 2013

    Sb,

    We will be fabulous in spite of our cancer! 😘 You are awesome and we will get through this!

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