Dx at 34 and ready to fight!

PixieDust · September 2007

Hi Everyone! My husband signed me up on this board asked questions when I was first diagnosed. He was doing all the research since I was too scared at the time to see what I would have to go through. I'm finally at the point where I know my path and I have all the power to fight the battle and win this! I found the lump myself in May in the shower. It was only a couple weeks after my 34th birthday. I have two young boys, my youngest was only 20 months and my oldest 3 1/2 when I found out. I got a lumpecomy in June, got dx on June, 28th when they told me I had breast cancer - tumors 1.2 cm, .6cm and 1 inter mammary lymph node that was .5mm (LVI). I had a lat mastectomy on Aug 1st, they found 1 more lymph node totaling 2 out of 23. I'm triple positive ER/PR/Her2neu, Stage 2, Grade 3 which is pretty scary. Doctor's say I was lucky I found this when I did, even though not so lucky getting dx. I have no history at all in the family. I look to the positive side of everything. It could have been far worse if I found it months later. Anyway, I am keeping my chin up had my first session of Chemo was on 8/24, felt yucky day 3-6, dizzy, fatigue. Not as bad as I thought. I'm still able to keep my routine with the kids. I have to be strong for them. I'm having 4 DD (AC),12 weekly Taxol and the year of Herceptin and Lapatinib. My next chemo is Sept 10th and I'm ready to buy my wig this week. However, I'm not really prepared for it to fall out. Any tips to help prepare yourself would be appreciated. This really is a great site and so far it's really helped me ease into this and fight the big fight! Thanks so much to all of you for coming here and sharing your words of encouragement.

Thanks!
Stacey

EachDay · September 2007

You sound like you are on top of this and ready to do battle...which is a wonderful attitude to have and it will make you feel more "in control" and like you are not just letting this happen to you.

Being there for your kids is a huge incentive...it was for me. I kept that at the forefront of my thoughts all the time and it made a difference for me. For many of us who have children and have gone through this.

Even though I was "prepared" for hair loss with my wig, and bandanas, I wasn't really "ready" when it started to go. I remember it well...this weekend 2 years ago, a windy day, I was driving, pushed my hand through my hair and came away with a handful. It hit me then exactly what the chemo was doing to me. I still recall vividly how I felt that day.

So I did what I had promised myself I would do...called my hair dresser and she shaved me bald ~ she knew I would call when it started to fall out. I didn't want it to come out in dribs and drabs and have that feeling every time I saw more leave my head. I wanted to "own" this and control it and that was one of the best decisions I made.

Sending you many positive thoughts as you keep going on this journey. You will be fatigued at times and wonder how you've come as far as you have, but keep your head up ... it sounds like your husband is a wonderful support and that's a huge plus as well.

KimRI · September 2007

Hi Stacey,

I had a similar situation, was 33yrs. old, found lump myself, had daughter 2yrs. and daughter 4mths. It was the scariest day of my life when I heard the words in the Dr.'s office.

I had my hair cut short about a week before I knew I was going to lose it. Your scalp gets VERY tender. It happens to people at different times. Mine happened to be about day 15 after my first treatment. My husband then shaved my head. Once you do that, the tenderness goes away.

I prepared my daughter that was 2 1/2 by this time by showing her a girl's picture on one of these message boards every day. I would tell her, this is my friend Amy. She has no hair and mommy will be like that. When the day came, I put on a baseball hat. She was watching t.v. and I asked her if I could take off my hat. I told her I was going to look like Amy. I took it off, she looked at me, then she said..........Mommy you look silly!!!!! I don't think I have ever had a better moment in life. She wasn't scared. Now, my 10mth. old didn't recognize me until I talked and then she smiled!!!

Kim

mmcp · September 2007

I was diagnosed July 4 of this year. I'm 32 & have a 3 year old and a one year old, no family history of cancer at all. I understand how scared you are, I am too but we will all get through this together. Like someone else said, I look at my children when I need strength to fight this.

I cut my hair short about a week before I knew it would start falling out to ease into it. The first day I noticed it coming out I shaved it. It was hard to do but at least it felt to me like I was taking some sort of control over the situation which was important to me. With cancer there's not a lot you can control, kwim? Best of luck to you sweetie, stay strong!

LittleFlower · September 2007

Hi Stacey,
Sorry to hear about your diagnosis, but i am really impressed by your fighting spirit, it's an inspiration! I'm also Her2 posi. and have just about 1 month+ to go until i'm finished my herceptin. I was diagnosed last june at 29. I was just curious about your treatment cause you mentioned you're getting both herceptin and Lapatinib-- what is your dose for lapatinib (how often and how long is your treatment) i'm just curious because i hadn't had this offered for me? Thanks in advance for your response, and wish you all the comfort in the world as you go through treamtent.
LittleFLower

nash · September 2007

Hi, Stacey. I remember your husband posting here--what a sweetheart he is!

My kids are 5 1/2 and 9, so they're in school and not as labor intensive an age as yours. But the kids certainly keep one going, b/c we don't really have a choice otherwise.

I started chemo 13 days ago, and my hair is starting to come out today. I don't have any words of wisdom b/c quite frankly I don't know what the heck I'm going to do about it. Probably see what it does before I get it all chopped off.

My mom has Stage IV HER2+ bc and after 3 years on Herceptin just switched to Tykerb. I too was interested that you'll be getting them concurrently--our onc won't dose them together b/c they haven't done trials on the two together yet.

For both you and LittleFlower, there is a terrific website for HER2 women that you may want to check out if you're not familiar with it already--it's www.her2support.org. There is a tremendous wealth of knowledge over there about HER2 bc.

PixieDust · September 2007

Thanks for the welcome and the tips! I know we are going to beat this together! Actually, my whole family, work, friends can't believe how well I'm handling this and on top of it taking care of two little ones. Plus I'm working full time from home right now during treatment. The thing is I have too! I can't let it take over my life. I have to be strong for my kids and not let it change or stop me from living. It's going to be a rough year and I've had my breakdowns, but I know I'm ready to fight this and give it all I got! After all, we are young women and strong enough to handle anything, right?? I just think that life right now is a little more challenging, but there will be a light at the end and the hope to be cancer free. Whenever there is darkness, hope is all we can look to and strive for. We may have had real bad luck getting this, but it doesn't mean we have to fail and let it get to us. I think the shaving the head thing is a great idea and I might just do it before it falls out. Maybe have a shaving head party or something on the weekend. I just don't want to fall victim to this and do what I can to take some control back.

By the way, I am participating in a clinical trial for the herception and lapatinib (tykerb). Right now they are giving it to advance breast cancer patients, however they haven't really given it to women with Stage 2 and I will be part of a great study. I hope this will result in helping all the women that are HER 2 Neu pos. It supposedly also decreases the heart risks along with the herceptin. It's working great in shrinking tumors and hopeful that it will help prevent reacurrance or keep at bay. My husband actually told me if there is a clinical trial he is all for it and really encouraged me to get on board. It can only help me and other women fight this horrible disease.

I'm also at SK in NYC who is up on the latest trails and treatments. There may even be something else in a couple years and we just have to believe that one day even a cure.

EachDay · September 2007

Your attitude will definitely take you far Pixie. Not allowing the cancer to take over your life is a huge part of this journey. As well as remembering to live and that there is still good life to enjoy will we are going through this experience. You said you have to for your children and they are a key factor, but please remember and remind yourself that you are doing it for yourself as well. I applaud your spirit and the emotions you have gone through to get to this place. Lots of tears and bad days, but there are many good days too. There wouldn't be good days if we didn't have some of those bad ones.

Best of luck with the clinical trial. I did one for rads and am still being followed. So not only are you doing something that will possibly help others, you are helping yourself and the extra attention and extra time in follow up is a wonderful feeling after all treatments are finished.

Being her2 positive, I am also grateful that you are doing this clinical trial which somewhere down the road might help me and my thanks are boundless.

PixieDust · September 2007

EachDay- I hope that the her2nue study really has a great affect and will soon be available to everyone. It has been FDA approved, however the insurance companies are not yet backing it for early stages. I was fortunate to participate in the trial. I know that herceptin is only 50% affective and we need something even better to stop the gene mutation.
I'm happy to hear about the rads study. I don't know if I need it yet. I have to speak to my Radiologist to find out for sure. They said it's a grey area when you have 2 positive nodes so I have to make that decision. I also had smaller tumors which were all removed after my mastecomy. It's on my left side and I'm a little afraid how it would affect my heart. I'm kind of unclear if I should get rads. Any advice would be appreciated.

By the way, if any of you were once on baby boards and know about BabyDust, I'm sending you all PixieDust hence my name which means Good luck, good health and only good results (NED) Much much pixie dust for everyone here ****************************

Thanks,
Stacey

nash · September 2007

That's really exciting that you're in the Herceptin/Tykerb trial. I knew they were starting trials for Tykerb for early stage, but didn't realize they'd started one for H/T together, early stage. That's awesome that you were able to get in.

P.S. Thanks for the pixie dust!

EachDay · September 2007

Whatever happens with the trial on herceptin/tykerb will follow here in Canada. That seems to be the pattern. So far I'm NED and I intend to stay that way, but should there be other plans for me that I'm not aware of, future advances with drugs and the vaccine they are talking about might be something that would benefit me (and others like me). It's those who participate in trials that make the world of difference for all of us.

Rads...I had one node and it was a definite, according to my surgeon and oncologist, that I would have 30 hits of radiation. My margins were clear on a 2 cm. tumor, and I think they wanted to be absolutely sure I was clear. The trial I am part of was for whole breast and/or whole breast and underarm. Having had the 1 node and an axillary dissection I agreed to participate and was randomized to the latter trial. I felt comfortable having the extra rads to the node area. Time will tell if this makes a difference or not.

I understand your concern Stacey about having rads on the left side, but I think many women do and particular care and caution is taken when that is the case. If you have specific concerns about that, post a question in the rads section of the board...you'll get much feedback there I'm sure.

Love the description of pixiedust...and thank you for sharing some with all of us!!

PixieDust · September 2007

Each day...I'm really happy to hear you are NED and I wish you the best in staying that way. Sounds like you are doing everything possible to prevent reoccurance. Let's hope that the vaccine will be available in the next couple years and we have even more hope and less worry. Just wondering what your stats were....mast, tissue expander etc. I'll be getting the reconstruction sometime in March and I'm wondering if the rads delays the process.

EachDay · September 2007

I plan to stay NED...unless there are other plans for me that I don't know about...until then, it's one day at a time and making each one count. I'm also getting to the place where I don't "think" about cancer ~ it's not on my mind when I wake up and it's not on my mind when I go to sleep. But I give thanks every day and pray that it will no longer be part of my life. It's taken 2 years but I made it to this point.
Now, as for my dx...I had a 2 cm. tumor and a lumpectomy on the right side. Clear margins, but 1 node in the SNB...so I had an axillary dissection which showed no further node involvement. Scans showed nothing had travelled. I did 4 AC, 4 Taxol, 30 rads and 1 year of Herceptin. I'm stage IIb and er/pr -; her2 +
It's possible that because you are having reconstruction and because of the mast. that rads aren't part of the plan right now.
The women who have had mastectomies and radiation would be able to answer this much better than I can, so really, do check out the radiation forum because I'm sure you'll find much support and information there.

Dx at 34 and ready to fight!

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