Who else had Bilateral BC at time of diagnosis?

So far all my tests on my left side indicate DCIS with possible micro-invasion (4 CM, laying on top of another 4cm tumor that appears to be malignant for now). While at an MRI I just had they found a 1.2 cm tumor in the right side that is IDC that never showed up on anything else. They can't tell me more until I have the BMX that I already planned on having anyhow. I didn't know it was rare! I guess I figured it was normal to have it at the same time?! I did have an Aunt that passed away in her early 40's from BC when I was a kid...which was back in the 80's. But now I want to have the BRCA test done as I was diagnosed the day before I turned 40!

Was diagnosed with bi lateral cancer one in each breast Halloween 2012. It close to Xmas I still have not had surgery partially because I was asked to take part in a gene therapy program. After 2 very long weeks it was determined this was not genetically based. In the meantime it was suggested that I have an MRI and another tumor was discovered! All tumors are less than 2 cm. but because there will be significant tissue removed a plastic surgeon will be on board for reconstruction of both breasts so i will be "even" on both sides. it has been like a merry go round. Doctors, tests another doctor more tests. I hate seeing the caller ID on my phone as it is once more another doctor or another negative test report. Scheduled for surgery dec 31. What a way to end the year? (And move on)

Dec 31 2012 I had surgery to remove both cancers.  When they looked closely at the lymph nodes biopsies both showed cancer.  The doctors weren't expecting this as one tumor was small and the other was a slow growing type.  I did not have a masectomy so I am in for a round of chemo then radiation.  My case has been bizzare from day one.  Bilateral cancer with two separate types of cancer one of them very rare along with the lymph node envolvment that wasn't expected..   I am going with chemo no doubt.  I want to get rid of these monsters inside of me.  I have opted to join a clinical trial.  Everything has been so "abnormal" what can it hurt.  Someone might learn something from it. 

Good luck Beth. Is the trial regarding bilateral BCs? Thank you doing so.

Gd2- hugs to you. Bilateral is unique, but treatments are same. Good luck.

Gd2, hope you are healing well. I too had IDC right and DCIS left. I had BMX in August with no regrets. Just curious, did you elect bilateral mastectomy?



Jojo, So glad you had BMX. I went the route of bilat lumpectomies at first. I have always felt so strong that I wanted BMX and eventually did so. It makes me wonder why the body would grow 2 different types of BC, such as in yours where one is grade 2 and the other grade 1. I was negative for all genetic testing so it remains a mystery. I know they treat us based on the most aggressive cancer. Still something tells me it's not that simple.

Stay the course until you have the full picture. Swing with the biggest bat you have and take the best care of yourself. Good luck.

Jody

I'm newly diagnosed, on Jan 30, 2013. Right IDC found on annual mammogram and US. Then when pre-op MRI was done, left IDC found as well, which was a game changer.

Pretty much stunned right now. No family history, never thought about being at risk for BC. Now know more about Breast CA than I ever wanted to know, but feel strongly that knowledge is power.

Glad to have found this forum! Having BMX with DIEP in San Antonio on March 4th with PRMA's Dr Chrysopoulo. 

Beckers-- you're right, our situations do sound similar! I do hope that I'm as fortunate as you with the nodes, though. I'm worried about the SNB and what that may show.

A couple of questions, were you able to sleep in your bed, or did you use a recliner? I have a recliner but am concerned that I won't be able to get in and out of it without help. I also wonder if I might sleep better using a wedge/pillows in my own bed. 

Were you able to get in and out of the shower without assistance? 

Also....dumb question here...how do I post both breasts' diagnoses? I only see space to put one breast's info.

Iron magnolia, I rented a power lift recliner from RentACenter and it was a lifesaver. I was not able to pull the lever in my regular recliner. I also had a wedge the I graduated to after 6-8 weeks. ( I was afraid too, if I slept in my bed, my husband might bump me.) I pretty much lived in oversized v-next t-shirts because they were easy to get in and out of. I also used a reacher and something called a dressing stick (you can look them up on Amazon.com) and they greatly increased my independence. I also had two small pillows like real small for car ride home (and many car rides later) to put between me and seat belts. Also recommend having supplies on hand before surgery: alcohol pads for drains, thermometer to watch for fever, small cup with cc/mm measurements for logging drain fluid output, safety pins for drains, shower chair, ( I was ok on standard toilet, only used walker in hospital) I bought white bath towels, hand towels, and wash cloths so we could bleach them to avoid infection, clorox wipes. Also a heads up that your arms will be strapped down and may be very sore in the recovery room. That shocked me. I was wondering what the heck they did to my arms! Maybe you can talk your OR nurse into moving them for you every couple hours. :-) doesn't hurt to ask!



Feel free to private message me if you have any further questions. I know you are down to the wire. I wish you the best!

I found the power recliner a life saver too. I have bad knees. And going upstairs was too hard, and I couldn't use my arms to pull myself up. Try this: cross your arms across your chest and try to get out of a chair or off the couch without using your arms. This will give you a very good idea of how hard it can be to get up. Because no one can pull you up by your arms either. Also, because of my knees, I used a raised toilet seat. And the shower chair was important. good luck ladies.

LKSHR, I had bilateral sentinel node biopsies. So far no LE. I have two sleeves and gauntlets for flying, etc, I have blood pressure and blood draws/IVs on lower extremities. I went for a two hour hike and my hands felt tight and looked like they were swollen some. Not sure if a result from Tamoxifen though. Are you having both done?

I got real nervous when I noticed my hands felt tight. I put arms above my head and also did some massage and movement of my arms. It resolved after I rested. I do take pretty warm showers. Honestly, I went to PT for education. I underestimated it though. This was a wake up call that I need to research more. it happened about a week and a half ago.

Bilateral sentinel nodes taken here during BMX. I do BP on my calf. Always have to remind nurses. Blood draws through my port. Otherwise I don't let them use the turniquet. They really don't like that.