Another scared new member of IDC

Sorry to see you here, so stressed, Rockcity. Consider securing a prescription for anxiolytics from your primary care doctor, to tide you over through this horrible period.

I personally would prefer to just wait and do the mastectomies in one sitting if my genetics were bad rather than two surgeries, it does not grow that fast and women often feel a sense of exigency when not needed medically. How long a wait for bilateral are we talking about? Are you in Canada?

Rockcity, I am going to welcome you to a group where no one expected to be in. We are here to encourage you and offer you information as much as we possibly can. Having been recently diagnosed myself, this cancer is now my new best friend I love to dislike. I can't say help because it is going to help me grow, mature, enrich my life and strengthen me in ways I never imagined!!! I'm looking forward to a new outlook on life and growing deeper in my faith.

As for treatments, Everyone medical oncologist and breast surgeon will offer different plans depending on your cancers behavior. I personally want a bilateral mastectomy and reconstruction. They have found another mass in my right breast that has yet to be diagnosed and it has just appeared out of the blue. Wasn't present on my annual exam last May.

Keep us posted and good luck!!! I was diagnosed 12/11 and still don't have a treatment plan. Hopefully I'll know more Thursday, 1/11/18

Take a deep breath and once you get your surgery you will feel so relieved. I just had my lumpectomy and sentinel node at 4 others done last Friday. My pain has been a 0 I feel super great the pain was more like I had been socked in the boob.

I hope to get my pathology report in the next two days. We have to take this one step at a time and I can tell you waiting for the pathology reports is the worst part for me so far.

Hey there, Rockcity...Just wanted to give you a virtual hug. Like you, my surgery options were also pending BRCA. My mom had BC, too (survivor!) and we have the same MO. I'm so happy mine came back negative because I really wasn't looking forward to a double mastectomy and ovary removal, too. Geesh. I've just had my second round of chemo and could tell that my lump has shrunk since the first treatment. For that, I'm grateful to have been able to feel it. If your treatment plan indicates lumpectomy, there certainly is no reason to not do it and proceed later as needed. In my case, it was chemo first regardless due to the HER2+++

Rockcity, I did it exactly the same way. I had two genetic tests. The first one came back negative for all the BRCAs and more common gene mutations, so we went ahead with lumpectomy. Then the second, bigger panel results came in and turns out I have TWO gene mutations which cause BC. By that time I had already had re-excision for margins and had my dastardly tumor change from ER+ PR+ to ER+ PR-,  a more aggressive cancer. Weeks were clicking by and my MO was eager to get chemo started. She told me at my first meeting with her that my breasts had to go. So I finished up my chemo in Dec 2015 and had BMX in Feb 2016. 

Oh my. Where to begin...I did pretty well all through chemo. I got septic after the first dose and ended up in the hospital for about 5-6 days (which I barely remember--I was so sick.) I had fevers 2 other times and ended up in the ER, but for the most part I did okay.  I had my BMX about 6 weeks after chemo ended and my energy was great. I went into it full bore, no plans for reconstruction. I am woman, hear me roar!

Well, it all fell apart for me in the 7 days post-op. My PS did a one-step sorta recon that failed in numerous ways. I had massive necrosis on the right and a huge 6cm seroma on the right. It looked like a German Shepard had taken a bite out of my chest. I guess it's good that I didn't have traditional recon because I would have lost it all. Anyway, it was just a mess and I became terribly depressed. My DH recognized that something was really wrong and got me off to a doctor who diagnosed me with PTSD.  She put me on Lexapro, which helped tremendously. But healing was slow. Very slow. I had to wear a wound vac for 7 weeks, followed by special dressings for another 9 weeks. The seroma had to be packed with medicated string for 15 weeks. I wasn't allowed to sleep on my side for months. I was bald.I couldn't sleep. It was a very difficult time for me. 

One thing that truly shocked me was how much I would miss my breasts. I really thought I would be okay flat, but I'm not. I was unable to wear any breast forms or bras for about 8 months due to the healing issues and it really messed with my mind.  When I finally was able to wear the forms I was totally surprised at how much better I felt about myself. I knew right then that reconstruction would have to be in my future. In fact, I had planned to do it last Feb, but my mother got really sick and I ended up taking care of her instead. So, for now the recon is on hold and I'm wearing my fake boobs (which look and feel amazingly natural--if you didn't know, you'd never guess!)

So that's my long sordid tale. I do NOT regret having BMX.  As my MO said, my breasts were going to continue to cause trouble for the rest of my life. Better for them to go. 

Rockcity and all, everyone of us who undergoes treatment for breast cancer is at risk for lymphedema, and the risk extends throughout the remainder of our (long! cancer-free!) lives. That's the bad news. The good news is there are steps we can take to reduce our risk, but it's up to each of us to decide what we're willing to live with.

Ask any member of your care team to write you a referral to a well-qualified lymphedema therapist. S/he will be able to take baseline arm measurements for future reference, give you personalized risk reduction tips, teach you a simple (and pleasant!) self-massage for moving lymph fluid and, if advised, fit you for a compression sleeve and glove or gauntlet (fingerless glove) that you can wear when exercising, doing heavy work or traveling.

Blood pressure, IVs and injections on your at-risk arm have been noted to trigger lymphedema swelling, though our medical professionals are often unaware of the extent of that risk. You decide how you want to handle that risk moving forward. The odds are in your favor for avoiding lymphedema altogether, since less than half of us do, no matter how many arm sticks and blood pressures they allow, but it's our call what we want to risk. Using a wrist blood pressure cuff rather than an arm one seems to be less of a problem, or blood pressure can be done on your leg (though readings will be higher there). IVs and injections can be done in other spots (I have bilateral lymphedema in my arms and trunk and use foot or neck for IVs and hip or thigh for injections).

More lymphedema risk-reduction tips here:

http://www.stepup-speakout.org/riskreduction_for_l...

Lymphedema is a nasty side effect, sure, but it's important to keep your focus on beating the breast cancer beast, whatever that takes. The Lymphedema discussion group here at BreastCancer.org is a great place to ask any questions you might have, as there's a great bunch of gals there ready to help and support.

I'm sharing your hopes for smooth sailing through all your treatments, and no "swell" surprises ever!

Gentle hugs,
Binney