had mastectomy in January, now Birad 5 in other breast

cat24

Hello:

 This is my first post to the message boards.  I am 53, but put off having my first mammogram until November of last year and guess what?  I had high grade DCIS and had a mastectomy with tram flap reconstruction in January.  I have had quarterly breast exams with my surgeon since then and was scheduled to have another mammogram in October.  I went to a new gynecologist last Wednesday and she found a small soft nodule so wanted me to have an ultrasound to check it out.  They did a mammogram and ultrasound on Friday and they found two small cysts and an area of architectural distortion that they want me to have biopsied on Monday.  My mammogram from last November showed nothing suspicious in my left breast and I had an MRI in December that showed nothing either.  They have me classified as a BIRAD 5 and I am absolutely terrified.  So, from nothing to this in 9 months.  I'm so afraid that this is something super aggressive and I am so scared.  I was not really scared when I had the DCIS and surgery, but this is so totally unexpected, I'm afraid I am dealing with something terrible.  Anyone have any experience with this?

farmerlucy

I don't have any experience with this, but just wanted to say sorry you have to go through this again. The only advice I have is not to go anywhere in your mind you don't have to go. Take it a day at a time, an hour at a time if you have to.

cat24

Thanks, I'm trying to take one thing at a time and not get ahead of myself, but it is hard.

NSJ2

So very sorry you find yourself here, Cat. Lucy had great advice to take it a day at a time.  But I know that can be very hard.

So you had a clear Bilat MRI in December 2011, and now in September 2012, 9 months later, there are irregularities seen in your left breast??

Do they want the biopsy on the architectural distortion, or the cysts too?

cat24

Yes, I had the MRI in December to see if it was possible to do a lumpectomy for the DCIS, but it was too widespread.  They were also looking to see if anything was missed, and I'm sure I was told they only saw the DCIS in the right breast and yes the left one was clear.

 Tomorrow's biopsy is just for the area of architectural distortion as far as I know.  

This is just so scary for me, I feel like a big baby.  But this is so unexpected, I was looking forward to having my reconstruction completed in November.  Now, I don't know where that will stand if I need to have more surgery.  My plastic surgeon was going to make my new nipple match my left nipple, now I'm thinking perhaps there will be nothing there to match it to, and I had tram flap surgery and that can't be done again if I need another mastectomy.  

NSJ2

Also, I'm wondering why your BS didn't find that nodule if she was giving you a breast exams every quarter?  I'd ask her/him.

cat24

This is a mystery to me, because I was just there three weeks ago and he presses really hard when doing the exam.  I don't know how anything could have been missed.  He is always very thorough.  Well, they're not worried about that anyways, I wish to God that was all that was going on.  I'm seeing a breast cancer specialist at the Ohio State University tomorrow and I have been told I could not be in better hands, so we will see what she has to say.

NSJ2

Do you happen to know if the architectural distortion is a lump (or spot) or something else like calcifications?

cat24

It is classifed  as a suspicious irregular mass which likely correlates with the area of architectural distortion seen on the mammogram. 

NSJ2

Please breathe Cat. Try not to worry about the "what ifs" if you can hon. Tomorrow you will know more. Maybe jot down some questions you want to ask the breast cancer specialist to keep your self busy.  Do you have anyone there with you you can talk to or maybe call for support so you won't worry yourself sick?

NSJ2

Does the report say approx how big the mass is?

cat24

It is 1.4 x 1.1 x 1 cm.  Why do you ask?

I think this is so hard, because it has been one thing after the other.  In December 2010, I faced possibly having ovarian cancer which turned out to be extensive endometriosis and I would up having a modified radical hysterectomy and lost my ovaries.  Being thrown into surgical menopause was probably the worst time of my life.  I couldn't eat, I couldn't sleep, I had severe anxiety and depression.  When that finally subsided then the DCIS and the mastectomy popped up and now this.  And if I want to go back a little ways more, my husband of 30 years ran off with an old biker woman four years ago on September 12, 2008.  He sent me an email at work to let me know he had moved out of the house.  That almost seems comical now lol.  I did get remarried last year to someone I went to high school with, we connected on Facebook of all places.  He is absolutely wonderful and the most supportive husband I could hope to have.  

My husband works nights, so my daughter is coming over and will take me in the morning.  I also talked things over with my other daughter, my mother, and my sister.  

OK, so going to just breath in and breath out, try to stay calm, read some Bible verses I find comforting and pray to God for strength.

NSJ2

Cat

Let us know how it goes at the breast disease specialist. You're in my thoughts.

I'm also wondering why your Bilat MRI 9 months ago didn't show anything (aka results were clean) on your left breast!  Why didn't it pick it up???

cat24

Had appointment with the new doctor today - I really liked her.  She examined me and said everything looked good from the outside, and to not get ahead of myself with worry.  It could be nothing - just need to get it checked out.  Biopsy went ok, I needed something to relax and had to sit for a little while to bring my blood pressure down.  I will not have the results for a few days.  My younger daughter went with me and we stopped to have a nice lunch befoe going home.  At home, put my nightgown on and got in bed with my husband (he works nights) and had a nice peaceful nap.

Just going to relax tonight and apply my ice packs and get to bed early so I can have a productive day at work tomorrow.  

cat24

Got my biopsy results back today after what seemed an eternity.  The doctor reported no cancer in the biopsy samples, but I do have atypical hyperplasia.  She wants to go in and remove more tissue to make sure they did not miss anything.  She did get my MRI from last December and my left breast was clear.  This is kind of freaking me out - what caused this to happen in such a short time?  I give thanks to God for today's good news.  One step at a time.  I was able to exhale after the doctor called.  I had so much nervous energy today I got tons of work done. 

farmerlucy

Cat24 - That is good news. I know you feel like you are still in limbo, but you are so far ahead of the curve. I had a breakdown after my surprise dx, and thanks to good drs, a supportive family, and my Stephen Minister, I am nearly 100%. If you need to,  you might check into that program. The United Methodists offer it, but so do many other denominations. It is confidential and the only role of the SM is to listen. I was so lucky that my SM was the cancer social worker for the local university medical center.

cat24

I have never heard of a Stephen Minister, but I may check into it.  I am thinking of looking into support groups at the Stefanie Spielman center.  I realize that I have it better than a lot of people, but this is still scary for me.  I see the doctor on Monday and I hope I can get scheduled for the procedure soon.  I'm supposed to have the rest of my reconstruction in November, so I'm hoping that can proceed as planned.