IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters

stage1

Mary Beth, You came to the right place for some insight on BC.  I have learned so much and share what I find out.  Let us know how you are doing.  (((hugs)))

fredntan

Hi all,

Guess I belong here. just finished 4 rounds of AC. starting Taxol on dec 14. Had rt mast sept8th with TE, kept theleft. radiation will start after chemo. currently not working due to chemo. this is such a lonely disease. seems like my friends are going on with there lives. I'll catch up wtih them.

Have been reading about removal of my other stuff- ovaries etc. considering that when they do my TE exchange-guess in the fall.

It seems like BC has become my life for now. sucks

odie16

Fredntan - I am sorry you have to join us but assure you that you will find support & comfort in these boards. It does seem lonely when everyone else seems happy & going on with their lives while we are scared and hurting but please know that you are never alone. We have all been there and are here for each other. Doesn't make it suck any less but helps the sanity. Please feel free to reach out to me whenever you need a friend.

Just fyi, I notice you are in VA.. I am in northern VA..

Kaara

Fredntan:  Welcome...I'm new here as well, getting my surgery (lumpectomy) on the 12th of this month.  My friends and family have been wonderful and supportive, they each have their own way of showing it, but I know they care.  You will find a lot of caring and comfort on this site...it is the best!

Went for all of my pre op tests today, seemed pretty routine, so next step is surgery.  I want to get this over with so I can enjoy the holidays. 

Joan811

Wave - How true that here we can be honest if we are having a bad day.  Our fears are real and here they are understood and treated with acceptance.  It is an amazing experience.
I have spent most of my last 5 months convincing everyone around me that I am "FINE"  (whatever that means).  Then, some days it hits me and I realize that it is not fine to have BC.  So many ladies are suffering and undergoing life-interrupting treatments....and there is nothing fine about that.
So, I am grateful to be able to express my fears and ask questions.  There is just so much I can share with friends and colleagues....nobody wants to hear about BC every day.
Thanks, my friends.
Joan

LDi

MardiBra, First of all how are you doing? And why did they not anesthetize you? That does sound brutal! My Lumpectomy and node dissection was 11/15/11. They did not prepare me for the wire in the breast to guide the surgeon. It was a surgery-day "surprise." It was tolerable...i would have liked to know what to expect.  But, to me surgery was the easy part.  Now soon to begin treatment...Radiation. And my personal decision NOT to take Arimidex is scary. I have very good reasons for opting not to take Armdx. and my Rad. Onco supports my decision; although I am certain she would not reccommend it. I looking for alternative ways to block estrogen/progesterone production. There are some new and promising meds on the horizon. So how are you after surgery and have you began treatment?

LDi

Joan, I just posted a message on very similar to yours in the alternative therapies section. It sounds very much like what I am feeling. I already had my meltdowns with friends...and I do not want to be a burden. And really, after the diagnosis and prognosis...there is not much more they can say; and usually friends/family don't know what to say after a certain point. So my point is that I am so glad...so, so glad that I found this community:) I look forward to giving & receiving support. I finally feel a part of a community that understands. Thanks to all, Hugs & Prayers!

stage1

LDi, I, too, was surprised with the wire localization.  Why the **** did they not give us a sedative??!! I passed out and had to do it laying down, took an extra hour adjusting all the equiptment.  I had warned them that I am a fainterand they paid not attention to me.  Since then, I know we are not alone in thinking this is brutal treatment.

WaveWhisperer

My surgeon warned me about the wire insertion, but it still was rougher than I expected. First, they said they would do one final mammogram to pinpoint the tumor the morning of surgery. My breast already was bruised and sore from the biopsy, and, during the mammogram, they kept the compression on for what seemed like hours while they debated among themselves. I was crying, and the nurse was patting me on the back, telling me it would be over soon.

Then they moved me to another room for another ultrasound while they once again tried to devise the best route for the wire. (My tumor was near the chest wall.) The local anesthestic hurt and burned, only to be followed by another injection, this one of the dye for the SNB, and in an area near the nipple where there was no numbing.

So, like some of you, the surgery was the easy part. 

Kaara

I remember during the biopsy when they did the wire insertion, it pinched a lot, but before I could protest, it was over.  The wire is already in there so I shouldn't have to have anything like that done again on the day of surgery.  I am going to be injected with dye to locate the SN for removal, or so I was told.

Wonder if I should take another ativan on the day of surgery or will they give me something to calm me down before they start all the procedures. 

auntienance

kaara, I about came unglued when they injected the dye near the nipple. They can't anesthetize it or so I was told. That was the worst pain of the whole ordeal. If you can be sedated, go for it.

Kaara

antienance:  I was told by my BS that they would numb the breast before injecting the dye, so I hope he is telling me the truth.  Thanks for the tip...I will be asking again to make sure they are doing that!

stage1

The dye part did not bother me, as long as I am lying down.  The dye part was quick and the doctor was great.  I am not sure Kaara, that we are talking about the same procedure.  The wire localization is right before surgery.  In my case two wires so the surgeon could take between the wires. They called that bracketing. So, you already have a wire in you?  You must be uncomfortable...

stage1

FYI, There is a seperate thread for wire insertion.  Before during and after sugery, Wire localization. So, some get it inserted before day of surgery...

fredntan

Just blows me away sometimes what they out us through. I woke up from my rt mast as they were getting me off operating table. Ordered out that I needed 1mg of ativan.I had just lost my breast.they ignored me.got to recovery asked when my PCA was.said it was reserved for bilaterals .needless to say it was long horrible night. Towards the morning my nurse had balls to saythat nurses make the worst patients. Right bitch. Try being my patient advocate .

Kayce234

Just found you and thought I should join my 2011 sisters.  I was diagnosed on Nov. 10th and will be having my surgery tomorrow - lumpectomy with SNB.  I've been in some of the other postings and find it so helpful to speak to those who have been through this, but it will be nice to speak with those who are in the thick of it.

 Prayers and good thoughts for everyone!

fredntan

good luck Kayce and hope your surgery is going well. My worst part was getting the bowels going again after sx.

Juni

Hello everyone! Wow. How happy I am that you are all here. I have read the posts, and am overwhelmed by this website and the love and support that is here. I was diagnosed 2 days ago with I DC. I have a couple of questions. Only part of my pathology report is back, and I am wondering if anyone can explain to me what the nuclear grade 3 means. Also the architecture grade of 3 and a mitosis grade of 2. I have a grade 3 tumor, and a B-R score of 8/9. I know in this case the high score definitely is not better but am having trouble with the other numbers and what they mean. I hope someone can shed some light. I have looked at a few websites but still am not finding much info on these exact items. You are all in my prayers, and I look forward to developing some wonderful friendships on this board. I am scheduled to go to a primary care physician today to refer me to oncologist and surgeon. I am in shock over the news but am keeping a sense of humor and I know God is comforting me so much through the love of these message boards, friends and family. Thank you for being here and any help you can provide. Xox

barsco1963

Sorry to have to welcome you here Juni. Good to hear that you are keeping your sense of humour up.

www.breastcancer.org has a lot of resources to access. For cell grade go to "symptoms&diagnosis" > "your diagnosis" > "cell grade"   It explains a bit about what you are looking for as well as other topics. There is so much to learn about this disease. You have definately come to the right spot - everyone here is extremely supportive, helpful and informative.

Good luck - let us know how everything is progressing for you.

((Hugs)) for you.

Kaara

kayce234:   Good luck on your surgery tomorrow!  I will be doing pretty much the same thing next Monday, so I will pray for you and then you can pray for me.  It's terrible to have to be in this place, but this is a wonderful site with so many caring supportive people.  I've been dealing with this since Sept, and I don't know what I would have done if not for BCO!

Juni:  Welcome to the site...so sorry for your situation.  Make sure that you get referred to a breast surgeon, not a general surgeon.  You want the best possible outcome.  Don't be afraid to get a second opinion if you don't feel comfortable.  Be your own advocate and do lots of research on your own.  Sending you prayers and positive energy!  Keep us posted on your progress. 

jody0918

Haven't been on here much.  Have had mother in ICU out of state but went to the Onco today.  Found i am Triple Negative... sorta blew me away.  Hope this is not a really really bad thing, but something they can deal with and is somehow treatable ?  Any words of wisdom or anyone else been down this road ??

Kaara

jody0918:  Welcome and so sorry you have to join us.  Hope your mother is better.  You will find comfort and support here.  I don't know much about triple negative, as I'm fairly new to this site as well.  There are many wonderful people who will direct you to the right place.

One thing I do know....all bc is treatable.  It is important to find the right doctor, one that specializes in treating bc, and to do your own research on treatment options so you will know exactly how to manage your treatment plan.  You are near Duke University Hospital....a good place to start.  We spend the summers outside of Asheville, NC and I have heard nothing but great things about Duke.  One of the ladies in our community was dx and treated for brain cancer there and she is still alive and doing well about two years out from the time she was given initially.

Sending you prayers and positive energy.  Please keep us posted on your progress. 

kal21

 Stage one... The percent probably does not mean alot in its self.. only the positive or negitive. I am surprised you did not have onco .. if you did chem(i forgot if you did) than no point but if you did not from what I know.. you would have benifited from it.

Always get copies and ask ? . You have to take care of YOU. I have learned that.

stage1

bar63, thanks for the reply.  I did not have chemo.  I asked why I did not get the oncotype test so I can learn my recurrance...MO said that they already ruled out chemo for me.  Since I was Stage 1.  MY concern was and is my grade 3.  Reason I even wanted that test was to help me decide if I really wanted rads.  I struggled with that decision, worst time of my life just stuggling with that decision.  No one can tell you what to do, I was so "on the fence", one day I decided to do rads and before i could finish the last thought, I would change my mind, nearly drove me nuts!!! Do these drs know what we go thru...NOI did have rads.  I am not sure that was the best decision, because none of us really know what might come from it in the future.  Thanks for hearing meLove you gals

Joan811

Hi ladies,
I am so glad this thread keeps going - but sad that some of you have been added to our group.
To those who just had surgery, I hope you find peace in being closer to cancer free.
To those who are having surgery next week, you are in the thoughts and prayers of many.
Kaara, best wishes for your surgery day - hope it goes well and you will be feeling well soon after.

Stage 1 - the Oncotype score isn't of much help in deciding on rads.  It measures activity of cells and the likelihood of the BC leaving the primary site.
I am in radiation right now (10 down) and I view it as my insurance policy against the unseen.
The biopsy, surgery and pathology look at a relatively small portion of the breast.  If there were any micro cells lurking, the radiation should take care of them.  Recurrence is relatively high w/o rads. 
{(((HUGS))) tonight!

stage1

Thanks, Joan for helping me understand the oncotype. 

Kaara

Friday was the day from he!! for me.  I was up in W. Palm about 50 miles from my home visiting my DGD who is 2.  We went to the mall for photo with Santa, who she took an instant dislike to, and right in the middle of that, my PCP's office called and said they couldn't clear me for surgery on Monday because my EKG was not normal.  They wanted me to come in for a consult with cardio dr.  I was 50 miles away and it was 3:00 PM on Friday!  Luckily they got me into the clinic in W. Palm so I had to run around like a maniac looking for that, and the cardio dr. checked me over and finally cleared me for surgery but with the understanding that I would need a cardio workup after because I have an abnormally slow heartbeat that needs attention.  I always thought that was healthy...go figure!

I have been so calm through this entire process, but this was the last straw!  I got the pre op tests on Monday, so they had the entire week to review and they wait until the eleventh hour and then put me through the wringer to get my clearance.  I was so upset and stressed that I had a complete meltdown when I got home.

 Cleveland Clinic is going to hear from me on this one!  What a contrast to my BS's office that is so on top of things!  I even have his cell phone number to call, as well as the nurse's in case of an emergency, or just if I have a question.  I am so grateful that I had the good sense to be selective and go with this BS, even though he isn't connected to CC.  I feel so confident knowing that he is going to do my surgery, and that is what I need right now, to be able to trust the doctor that is going to be working on me.  I'm praying that this is the worst of it, and Monday's surgery is going to go without a hitch! 

odie16

Kaara ,

I am sorry you had to go thru all of that and hope that is your only complication. Praying for a smooth surgery & speedy recovery Monday......hugs

Likeachickadee

I just got my call a few days ago and am in the information gathering mode...actually that's what I've been doing during all the waiting for the biopsies and results.

Had a stereotactic core on 11/2 and then the wire guided excisional with 2 wires on 11/29.  I fainted during the wire part....not something I ever want to go through again!  I had a breast MRI on Friday and have a postop from the biopsy and consult with my BS on Monday.  Not sure what to expect at this point on a timeline, especially with the holidays approaching.  My DD who is a nurse will be home from grad school for a month and I would love to take care of the surgery with her here.

Sorry to have made this team, but the positive vibes and wealth of information and support is wonderful.

Kaara

odie16...Thanks!...Me too!

Likeachikadee:  That wire insertion thing is freaking me out!  I'm sure my BS said it was done when they did my stereotactic biopsy so that they could pinpoint the place to do surgery.  I know it pinched and hurt when it was inserted.  Monday they are going to numb the breast and do the dye thing to find the SN, and so if they do another wire they failed to advise me of that.

 Will they give you something to make it hurt less, or should I take some ativan like I did before the biopsy?  I wasn't sure whether to mix that with the anesthesia...I do want to wake up!:)   Good luck on your app't and surgery.