2011 Sisters

Rennasus

Birdy-Robin, you have had your surgery by now so you made it through that rough night prior. Yea! Let us know how you are doing! 

The night before my BMX I went to a Jay Leno taping. We had gotten the tickets before I knew when my surgery date would be. I took it as a sign. My sister was visiting from out of town and we took my mom and you know what? It was the best decision I could have made. We laughed all afternoon and it took ALL our minds off "it." I couldn't have relaxed if I had just been sitting at home, waiting.  

Welcome kks_rd! as Tina said, this is a great thread to start in!

Kymn, continued good luck with chemo.

vivirasselena

Hi everyone....I too,was diagnosed in November...2 weeks after my little brother passed away from a brain tumor.  I am finished with chemo (8 rounds) and just had surgery a week ago.  Even though I only had it in one breast, I chose to have both removed as well.  All I can say is, if you have the offer to remove them both....I would opt for it.  I just wanted it ALL GONE. Post surgery is going very well...sore, but as to be expected.

Hang in there...you are certainly NOT ALONE...and keep your eye on the prize. We love and support you here.

vivirasselena

Hey Carolyn...I JUST came from surgery a week ago...I didn't bring anything but a toothbrush and paste.  I was in for only one night, and had a bi-lateral MX.  They will keep you in a gown the whole time.  As for at home, silky open fronted PJs are great as you have to slide in and out of bed. Safety pins to pin up your drains (big ones, like diaper pins)

My mom went to the Goodwill and got me tons of button up gowns and pjs that are satin, and they're easy to get off and on. (I think she spent $4.00 total)  Hang in there...I was terrified of the surgery, but am glad it's over, and I'm on my way to being whole again.  You are too. 

julianna51

Hello 2011 Sisters...

I was diagnosed with DCIS on April 25th (and LCIS in 2002) and have opted for the BMX with immediate reconstruction (TE/Implants).   My surgery is scheduled for May 24th...a rapidly approaching date.   Some days I feel just fine and then other days I am overwhelmed with it all.  Today is more of an overwhelmed day.   I know in my heart that it will all be okay but at times it is just hard to see that.  

Right now, my BS says no radiation or chemo and I am hoping that holds true.   He'll be doing a SNB at the time of surgery.   I just pray that the DCIS is still contained.

I'm thankful for such a wonderful place to find others to learn from.

Juls

TinaT

A warm welcome to the new 2011 sisters.  It is overwhelming, especially in the beginning.  Just know that you will have good days and bad - perfectly normal!  I am a "what if" person and I really have to work at taking it one day, one step, one bite at a time.  It takes a lot of discipline for me, but it has really helped me cope to not let my brain jump too far into the future right now.  Give yourself permission to have a bad, emotional day now and then.  Recognize it and know that it's just a low point on the breast cancer roller coaster.  If you find yourself stuck at a low spot for too long please ask for help, talk with a counselor or local support group.  Also, your health system likely offers cancer navigation services which is a wonderful source of help.

Something else to consider in the early phases is who to let into your breast cancer world.  I chose to only share with family and close friends and have asked those who know to please respect my privacy by not sharing with the world.  Some women find comfort in sharing with everyone; that's just not me.  Once the cat is out of the bag, so to speak, there's no getting it back in there.  I have dealt better with keeping parts of my life as "cancer free zones".  At first I thought I must be weird and the only woman on the planet who thought this way, but I've found on this discussion board many women who feel the same.

kll22

What I have found absolutely amazing about this site is that everyone offers their own perspectives and experiences so easily AND respects the choices that we make as individuals.

Carolyn-I'm about a week ahead of you -- diagnosed May 6, surgery on May 23 also IDC.  I've had three biopsies and can't wait to move on to the next step of surgery.  I so desperately want to feel like I am moving forward toward resolution.  Personally, we have shared my DX with all our close friends.  For once in my life I am going to accept all the help I can get!

Kristin 

TinaT

kll22:  You will likely find that your friends want desperately to help you, but they might not know how.  Mine actually seemed excited when I gave them something specific to do, like pick up a prescription, drive me to my bone density test, or stop by the post office for me.  I know they're all busy ladies so I didn't want to lock anybody into any real time-consuming favors, but they all seemed so happy to be able to run quick errands like these.  My husband was able to take care of getting me to the major appointments, but it really helped him out a lot also when he didn't have to run these extra little errands.  And, some extra comfort foods in the first weeks really did help...homemade soup, chicken pot pie,etc. 

So, if it's a friend or family member whom you know isn't just saying "if you need anything....", but really means it - give them a job and they will be overjoyed to know exactly how they can help!

yaya42

Hi all- I am in this group too.  Had nipple drainage on left side, GYN found lump, mammogram on 4/11, diagnosed with IDC on 4/15, had bilateral MX left side on 4/28, port put in on 5/10-starting chemo 6/2.  And of course as I type that damn song from Tim McGraw live like you're dying is on- ugh.  I'm 46, married for 27 years, 2 daughters, 2 new twin granddaughters.  I am not done yet!  I don't know that I am scared of the chemo, not looking forward to it but wouldn't say I am scared.  Just want to get thru it and beyond it.  I go a CT/Pet Scan/MRI/Brain and Echo on 5/26- I pray pray pray!  there are no other spots/tumors.  I am getting taxotere,caboplatin and herceptin- 6 rounds of chemo with herceptin every week first 18 weeks, then herceptin every 3 weeks for remainder of a year and rads sometime after the chemo.  Glad to find this website and very glad to finally find a thread I can belong to!  Good luck to all of you- you all inpsire me and give me hope. thank you

TinaT

yaya42:  Sorry we have to meet like this  but WELCOME! 

I had nipple-sparing mastectomies in February and am undergoing reconstruction (currently have tissue expanders and will ultimately have silicone implants).  I feel so fortunate that my cancers were found very early so no chemo or radiation for me, only hormone therapy. 

Sounds like you're well into your treatment.  Fingers and toes crossed for all your diagnostic tests. 

Best wishes!!!

TwoHobbies

Hello all,  I just found this thread.  I was diagnosed in February with one tumor.  I was expecting to have a lumpectomy.  MRI found a second tumor and breast surgeon then recommended a mastectomy.  I elected BMX and am almost 5 weeks post-op. 

filrb - I too have dense breasts.  Neither of my tumors are seen on mammogram.  I decided on BMX because I didn't want to spend hours on the mamogram, ultrasound, MRIs every six months.  It was too traumatic  I don't regret it.  Also if you don't want a foreign substance in you, you can do a tissue surgery.  Go visit the breast reconstruction board.  The one thing you should know up front is not all plastic surgeons do all surgeries. Many plastic surgeons only do ld flap, tram flap or implants.  So if you want to explore some of the others mentioned, you have to find a ps that does them.

TinaT you are so right about assiging specific tasks.  Let your relatives do the more personal things, friends can shop and pick up, neighbors can entertain your kids, take your dogs for a walk, mow your lawn, water your garden.  Everyone seems pleased to help and all those small things leave more time for your number 1 caretaker to help you  

TinaT

TwoHobbies:  Wow, your story reads just like mine...dense breasts, useless mammograms.  I ultimately had 5 biopsies in the same breast spread over a few weeks.  For a while we knew there was one cancer (lobular) and I had my mind wrapped around a lumpectomy/radiation/hormone tx.  Then a second cancer was found (DCIS) and lumpectomy was yanked out from under me.  I ultimately chose bilateral surgery over unilateral.  Turned out to be the best decision as more lobular neoplasia and multiple areas of ADH were discovered in that same breast.  I'm still puzzled how so much could be going on in one breast and nothing but dense fibrocystic disease in the other (although I had calcifications and ADH biopsied on the "good" side in 2009).

My PS is a microvascular breast and hand surgeon and has done many flap surgeries.  However, that didn't appeal to me so I opted for implant reconstruction.  It's wonderful that there are so many options out there.

Take care!

TwoHobbies

Tina, it is weird that one breast  goes cancerous and the other doesn't.  Well maybe over time the other might too.  The radiologist wanted me back in six months to look at the other one.  This was before the cancer diagnosis even, so I could see more hours on the table in my future.  It took 8 1/2 hours total to find these two and biopsied 3 locations in the end.  Had enough of that. 

TinaT

TwoHobbies:  I had 5 areas show up on MRI.  They were able to see and biopsy 3 with ultrasound, but I had to go back several weeks later to have the other 2 biopsied under MRI guidance.  The more I thought about the lobular CA the more I leaned to bilateral even though cancers were only found on one side.  I knew I wanted reconstruction and somehow having a "matched set" seemed less upsetting to me than having a "good" side and a reconstructed side.  It's like once I knew I couldn't have a lumpectomy I was willing to let them both go...

By the way - what ARE your two hobbies???

TwoHobbies

Clyn, That makes sense since my oncotype said 10% chance of distant recurrence, so I didn't think about it, but that probably applies to the remaining breast tissue.  I know people who went both ways and my unilateral friends never had a recurrance.  But I'm glad they are both gone.  

TinaT

Clyn:  They're going to fully check out the "good" breast AFTER your lumpectomy surgery?  So the lumpectomy is actually an excisional biopsy to confirm your diagnosis?  If they suspect something might show up in the other breast why wouldn't they want to know that before they do any surgery at all???  I'm confused (nothing new)......

TinaT

TwoHobbies:  OK, as in "like I need another hobby..."  I hear ya!

TinaT

Clyn:  Please forgive my curiosity, I don't mean to imply that you're not on track.  Of course, they don't do ultrasounds or diagnostic/second look mammograms unless it's warranted by the screening mammo or something palpable so they wouldn't do that on the other breast unless that was the case.  And the lumpectomy is basically the same as an excisional biopsy.  You're still in "information gathering" stage.  Every patient, every doctor, every situation is different.  Sorry to jump ahead, I was just curious about what they had planned for the other side...perhaps an MRI?  Keep us posted! 

It sounds like you've learned a lot in a short time and are going into this with a positive attitude.  You're going to do great!!!

TinaT

Clyn:  I had to wait so long for my surgery that I imagined my house all clean and organized by then with a freezer full of meals.  NOT!  Found out I'm definitely not the "clean house to burn off energy" type and I instead chose to have fun, work in the garden, take lots of walks, etc. 

Best wishes!!!

TinaT

Clyn:  Yup, surgery day will pretty much be a blur.  I kept saying to my husband, "A month from now I'll know so much more", "A week from now I'll know so much more", then "By this time tomorrow it'll all be over."  Funny how the clock seems to speed up and slow down depending on where the head is at.

duckyb1

Clyn.............Just hang in there............this is probably the worst of all times........not knowing is, I found, enougy to send you goofy..............I am now 3 1/2 months from diagnosis...........I have 10 more Rad treatments and I am through with that phase..................I found each one got a little bit easier to deal with...............I asked questions till there were no more left to ask, and then I would remember "one" more to ask...........that is the clue, and the secret..............be your own advocate, ask questions till you get the answer you want.................not the one you want to hear..............the one that is true.....................I asked about my diagnosis, my biopsy, my SNB, my surgery, and many other questions in between,.............I dealt with the RO, the MO, and compared what they had to say, and looked for differences in their answers, and when I found a diference I asked "why"...................I will be going on hormone therapy since I am ER+, and I know they do a number on the body..(already researched that)....................so my question right off the bat will be "do I really have to take this, and what are my chances if I don't".

Qualty of life is important, not how long you live.................what is life if its not "quality of life"............I don't want to be here, just to be here, and be unwell.....................Just remember to ask all the questions.

Your gonna do fine, and you already seem ahead of things.........good luck, and hugs to you.

suebak

Sad to say, I too and one of you.  That sounds terrible, but I really don't want to be here, as I am sure none of you do.  I have been reading all of your post, very quietly.  I had a lumpectomy and sentinol node biopsy 5 weeks ago today. Clean margins, negative nodes.  I am now waiting for my oncotype to come back.  Dr also wants me to see my gyn, haven't been there in 2 years and have an MRI on my back, have had back issues for over a year.  Having both done tomorrow, then I just wait again.  I have found the hardest part of this horrible desease is the waiting.  Well, it was nice to meet all of you.  I too, am sorry we had to meet under these circumstances, but to have other people to vent too, who truely understand how you are feeling is awesome.  Good luck to all

duckyb1

Clyn....not sure if you noticed I am from Pa. too............what area are you from...........I'm from Delaware County....................Small town right outside of Philadelphia...........You have a good outlook.............keep that up............it will get you through the bad days, and there will be some of those................but remember and cherish the good ones.............hugs.

ssmith37

Hello sisters!  I am 37 years old and was diagnosed this past April with IDC, stage 1 (he thinks), grade 2.  I found the lump myself while sitting on my couch one night.  I was feeling some strange, shooting pains just below my armpit.  The pain kinda felt like cyst pain, so I went feeling around.  Sure enough, strange lump.  I went to my gyno and he felt around and didn't think it was anything.  Told me to come back next month.  Went back and it was still there.  Duh!  So I went for mammo, then biopsy, then meeting with BS (who is wonderful, by the way), and tada!  Here I am.  I had a breast MRI a couple of weeks ago.  BS ordered a PEM too, but the insurance company denied it (more than once), so that's out of the question for now, unless Onc orders it later.  Another small (6mm) suspicious mass showed up on the breast MRI.  But BS and radiologist aren't worried about it. (?)  So, after talking with BS in depth, I figured I'm not going to worry about it either.  However, after reading so many ladies' posts and experiences with recurrence in TNBC, I think I am worried.  I did my pre-op testing this morning; lumpectomy scheduled for this Tuesday.  Do you think it's too late to ask BS to go ahead and take out the small one too while he's in there?

 Thanks!

kll22

SSmith37 - I would push until you get the answers you want, even if it's just a satisfactory explanation as to why the docs aren't concerned about the area.  When I had my breast MRI, it showed another area of concern about 1 cm away from the original tumor.  After an MRI guided biopsy of that area, the path report showed b9 breast tissue.  Two radiologists doublechecked all of the information available and I feel confident that they did not miss anything.  One of the problems with breast MRI is that it sometimes shows more than is actually there.

What I really like about the practice that I'm with is that they review ALL cases as a group --BSs, MOs and radiologists.  Even though I only meet with one doc, I've got a whole "think tank" behind me!

Best of luck to you next week!

Rennasus

Hi ssmith37, welcome to our group. I had a breast MRI prior to what I thought was to going to be a lumpectomy but the cancerous tissue was 3.2 cm and right in the middle of my breast. So mastectomy it became. I opted for a bilateral. During pathology post-surgery, they discovered an area of DCIS that had been previously undetected by MRI. 

kll22: My surgeon also presented my case before our hospital's "tumor board" (made up of surgeons, oncologists and radiologists), so I felt assured when mastectomy was recommended over lumpectomy! 

kll22

SSmith37 - Hope things went well today!  Sending healing thoughts your direction.

DocBabs

My bilat  mastectomy was 5/13/11.Came home 3 days later. One drain was removed the following Thursday and the 2nd the next day. I was driving that afternoon so that's about 10 days post-op.I have been delighted to find that surgical pain has not been much however ,tissue expander "discomfort" has been major.Valium helps but then I can't drive feeling somewhat stoned.It seems to me that the expanders are now migrating sideways under my arms. The only fill I had was in the OR.Small complication, t I spent this last holiday weekend in the SICU with intense epigastric pain ,fever, and an increased white count.I was discharged yesterday with no real diagnosis but will be having several studies done in the next few days.I had just started taking Arimidex 1 week ago and stopped it immediately. I don't  think I want to go back on that or anything else.I seem to be more confused now than ever.Surgeon says the cancer is completely gone but oncologist wants the extra insurance. I just don't know.

Rennasus

DocBabs, sounds like you had an eventful holiday weekend! Yikes! Hopefully they will determine what the problem was. You are still fresh from BMX, it is a confusing time, so much to deal with and process! Try and rest. I wouldn't worry about the Arimidex right now. Give yourself a few weeks to absorb what has happened, and how you feel. Clarity will come. I started Tamox nearly 2 months after my BMX. I was ready. It would have been too much to wrap my head around if I had started it sooner. You might also consider a 2nd opinion with a different oncologist. Sometimes that helps greatly! Best of luck and sending good healing your way!

SSmith37, let us know how it went! 

ssmith37

kll22, thank you so much for your well wishes.  The surgery went great.  I didn't get to talk to my BS after surgery, but my family did.  They said he said he is 85% sure there is no cancer in the nodes.  I don't know why he's not 100% sure, but I have a follow-up appointment with him this Monday.

DocBabs

Rennasus, You're so right about being fresh from the surgery. I've had 3 joints replaced in the past few years and I seemed to "bounce" back so much faster than I am with this one.I'm going to do some hard thinking about the medication.Meanwhile, I walk around all hunched over fromm these TEs.I'm tall and I've never slouched and this is killing me. I have definately decided that I want to go even smaller with the implants.I just cannot stand them anymore.I had an imformal second opinion with another oncologist, a family friend, and her answer is that she puts all her patients on medication after surgery, again, the extra insurance stuff.

ssmith, your surgeon should know by your next visit the exact status of your node/nodes.I'll keep my fingers crossed for 100%.