2011 Sisters

AnniN

Hello ladies!  Well, I would like to say I am glad to meet you all, but as I am sure you can understand, I really am not!  Sorry, nothing personal!

I met my oncologist for the first time yesterday.  She is sending me for MRI, bone scan and ECG on Sept. 21.  She tells me this is routine but now I am terrified of any spread!  She was asking about all sorts of symptoms such as vision changes and loss of balance, fatigue, etc.  I really did not have any of these symptoms but today I feel like hell!  My shoulders and neck are so tight, I am so tired I can barely find the energy to do anything and I am somewhat dizzy.  Of course, I am now convinced it has spread into my brain.....being an ex-nurse is not always a good thing.

The initial plan is for chemo to start Sept. 27th, for 8 rounds, then surgery, then 9 rounds of herceptin followed by radiation. 

I cannot control the tears today, and am absolutely devastated at losing what I feel to be my only good quality, my hair.

This sounds like I am a hypochondriac and a less than positive person.  In reality that is not the case.  Normally I am very strong, believe in putting positive thoughts out into the world and letting them happen, and in fact I was just like that until yesterday at the cancer clinic.  Now my husband feels more confident and I have lost all confidence.

Help me my new friends....I don't know what to do!

duckyb1

Hi new 2011 ladies........................Your not feeling anyting differently then all of us felt when yo got the new "you have cancer"..............it is all normal..............I was diagnosed on FEb 15th , followed by months of treatment.....biopsy, lumpectomy, Rads, and now Femara...........I did not have to do Chemo............I am 76, so I guess they think this old body is beat up enough..............seriously my oncotype score was very low, so it wasn't necessary.

I did well through Rads.......36 treatments which 8 of them were boosts............I had incidents of discomfort,but nothing I could not handle..................the Rad treatment itself is nothing..........it is quick, and over before you know it.............the travel takes longer then the procedure they do........my people were wonderful, and I can say "I actually miss them"............I had fantastic Dr.'s.

I get fatigued a lot easier then I did before cancer, but a nap now and then helps that........don't be discouraged............each person is different..............what causes one person trouble, may be a walk in the park for you, and what doesn't bother someone else, could be a problem for you, so take it "one day at a time" that is all you can do.

Come here often, these ladies are wonderful, and I owe getting through this tough time to my wonderful children, and the ladies here............................remember......you have cancer........it does not have you................hugs, and good luck

LovesChristmas-Barb

AnniN....welcome here though we all understand why you don't want to be here! Your symptoms today could be just plain old stress. My MO (medical oncologist) had me get all those scans also before my surgery. She told me that she wanted baseline scans in case I had other symptoms later on and then she could compare my baselines with new scans to see if there was a difference. This could also be why your oncologist is doing this.

And I definitely had days of tears falling freely...especially every time when I had to start a new phase in my treatment. I'm saying a prayer that you will know what to do...I've learned to take things one day at a time.

KRomanoFight

Welcome to all the new folks.  Hearing all the stories is helpful.

I finally have plans in place.  I got my port placed yesterday.  Chemo will be once every 3 weeks for 6 treatments.  Herceptin once every 3 weeks for a year.  After chemo it will be radiation for 6 1/2 weeks.  I guess we'll talk about hormone therapy after these treatments are over.  So, I'll call on Monday to set up the treatments.  Any advice on the best days to get chemo if you are working?  When will I feel the worst, lose hair etc?  The medical oncologist did give me some info, but just wanted to get advice on when to do it with working full time.

squeak

Hi, this is my first post.  Last Monday I had my mammogram.  On Tuesday I got a call that they found a spiculated mass in my left lateral breast and I needed to come in for an ultrasound and possible biopsy. 

On Thursday, I had the biopsy, they said the nodes looked ok.  The ultrasound tech and the radiologist both tried to feel the mass and they could not feel it, neither could I.  The technician looked at me and said, "thank God for mammograms." 

Friday afternoon at 2:20 the nurse from the breast center called and said that I had Infiltrating Ductal Carcinoma.  She said something about cribiform and angio-something.  She said that there is a high probability that there is invasion into the lymph nodes.  She would not answer any other questions about the pathology of the mass, such as hormone receptors or what stage, maybe they don't know at this point?  She said that she has set me up with an appointment with a surgeon that I do not know on Thursday of this week at 11:30.  When I asked if he was a breast surgeon, she just said that many surgeons operate on other body parts and that he was very good.  I was left wondering if I had a choice in the matter.

I'm still reeling, it's happening so fast.  I'm a mom of 4, two grown daughters and two son's in high school.   I feel as if I have to be strong for everyone.  I'm using humor a lot to cope and to try help my loved ones feel better, but when no one is looking, I cry.  The not knowing is the worst.  

Kimmer1975

Bumping this up for a new girl on the boards! Make it easier for her to find the threads she can relate to! 

Kymn

Hi ladies, sorry I havent been on in awhile, my DH left me,said cancer changed me and right now I am just dealing with a broken heart as well as getting through treatment.thank god I am almost done.So I can start dealing with the next crap that has been put in front of me.

Hugs Kymn

JeanneR

OMG Kymn...I just want to HUG you.

TinaT

Kymn - What an awful time to go through something like this.  We struggle as we go through this BC process and we'll never be the same physically, mentally, or emotionally.  Our loved ones obviously struggle with their own "stuff" as well.  So sorry your husband couldn't deal with it.

Sending you hugs.....

TinaT

squeak - Yes, the not knowing is really difficult, but hang in there!  I agree with Robo47.  Chances are that the general surgeon recommended for you would do a perfectly fine job.  However, I would still ask for a consult with a breast surgeon.  There are so many surgical and treatment options these days and a breast surgeon will likely be more knowledgeable and up-to-date.  Just my opinion...

Once you get more information and you know the whats and whens you'll feel a bit more in control and it will get a little easier.  Please hang in there - you can do this!!! 

TinaT

Just wanted to say - giant hugs to all!!!!!!!!

Danadane

Hi,

I'm a newbie to the club as well. Got my diagnosis of IDC on the 9th (although I got a glimpse of the tumor during my biopsy and knew then that the news was not going to be good). I meet with my breast surgeon on weds for my MRI results and to discuss surgery.



I feel like I've already been on a huge emotional roller coaster ride already, but finding you all has really brought me some peace. Reading all the posts and everyone is so supportive! The worst is walking around town and even with friends and family who just don't get it. It's awesome to find a place to belong through all of what is to come. So, thanks to all of you in advance!



One question (for now): how do I go about finding an oncologist? I'm sure my surgeon will suggest someone but I'd like to have some options. And, are there oncologists that just do breast cancer?



Thanks!

TinaT

Danadane - Welcome to the "club" .  Yep, you'll find it's quite a roller coaster ride, especially in the beginning.  If you have access to a breast cancer navigation program through your hospital, health system, or breast surgeon you should be able to get names of good oncologists available to you.  The navigator usually has feedback from other patients and can also help direct you to other services you might need.

Best wishes!

KittyGirl2011

Welcome all the newbies but sorry you have to be here because of BC.  Yes, it is a huge freaking roller coster ride, but you will get through it.  I never experienced such huge swings in emotions until my BC diagnosis.  Random crying for no upfront reason seems to be the norm even now after my active treatments.  It's only been 2 months since my surgery but I do feel better with the knowledge and support I have found here and on BCO in general.  So go ahead and come here to whine, cry, rant, or just talk, you will be listened to and supported.  HUGS all around to all the sisters!  Kitty

nancygv55

Kymn, I'm new here but just want to say my heart goes out to you and that I hope you have a strong support system nearby.  You are dealing with way too much.  Take care of yourself and stay strong.

auntienance

Squeak, you are at what I think is the worst stage in this journey. The terrible fear and anxiety can be debilitating and I've spent a lot of time crying in the shower. Everyone here has been exactly where you are now. They've been a tremendous help to me and I think they will be to you too. It does help to lean on someone. My dh took care of notifying my family which was a great help when I couldn't bear to talk about it. Once you get past the nearly unbearable waiting, it does get better. Hang in there!

KRomanoFight

Ugh Kymn, so sorry to hear it......wish you all the best and keep the healing going.  Don't even know what to say other then we all are here to support you.

Hello to all the newbies, and unfortunately welcome here.  You will find what you need here, guidance and support. 

duckyb1

Squeak........I would get a breast surgeon..............don't rush into anything, unless the people at the hospital know "all the best people".............I was lucky........from the time I got the dreaded phone call, to today, I had the best treatment.............excellent hospital (regional cancer center), the best breast surgeon (head of the Breast cancer center),,,,,,fantastic medical oncologist,and a wonderful Radiation Oncologist................I went through diagnosis, biopsy , surgery, RO visit, Radiation therapy (fantastic team of techs), and a wonderful Medical Oncologist..........I wish you luck, just don't take anyone..................pick the best............its your life.............this is the hard part, but hang in ther and take it one day at a time..............that is all you can do.   hugs.

DonnaKay

Hello again. Kymn, I am so sorry about your husband. I dont know what to say.



Just found out today that after all biopsy results were in, my lymph node did prove positive for cancer after being initially told it was clear. I am also estrogen positive. I have an appt with an oncologist on September 29, unless there is a cancellation before then. The doc that gave me this report told me to expect chemo before surgery, and after. That was her best guess, but of course have to wait to see the oncologist.



I am feeling normal to hear about the emotional roller coaster as I have been strong until last Friday. Had another episode today.



I have a big fear of having to work while going through all this. I keep reading about how stress plays a big role with this disease and I have had plenty of that for the last three years, and don't know how I will handle it all and work full time. Am I worried for nothing?



For mastectomy surgery, how long are you off work before you return?



Are there certain preparations that I need to do prior to surgery or chemo that you learned yourselves to make life easier? Things your doctors don't tell you?



Thank you in advance. This is going to be a long year.



Donna

squeak

Thank you all for your kind words.  This is so overwhelming.  The breast cancer coordinator called today with a bit of good news. The tumor is estrogen and progesterone positive and HER2 negative, so I guess I can celebrate that much.  She told me what I can expect in the coming days, sentinal node biopsy, surgery, radiation if I choose lumpectomy, probably not if I choose mastectomy, then an oncology consult.

Then she asked me if I knew which direction I was leaning toward.  I told her that I didn't feel qualified to make that kind of decision.  I have Dr. Susan Love's Breast Book, so I have some homework to do. She offered to go with me to the surgical consult and also said that she had a book that would guide me in helping my kids deal with all of this. My youngest keeps asking me, "they caught it early, right?" over and over again.  I try reassure him as best as I can.  

I'm looking into other hospitals/programs within our insurance system.  I have my eye on another hospital and surgical practice that I feel much better about. After the consult, I'll see how I feel and probably seek a second opinion there. 

I don't know the stage yet, or much else really, I don't have the pathology report in hand yet but it'll be mailed to me this week.

 Kymn, I'm new here, but I wanted to tell you how sorry I am! 

DonnaKay, I don't have any answers, but my pathology report says that there is probable invasion into the lymph nodes.  I see the surgeon on Thursday.  Just wanted you to know that I'm going through this now, too, and to hang in there.  This is uncharted territory for me as well.

nancygv55

Squeak you live just up the road from me!  Are you going to Park Nicollet by any chance?  We can talk offline as that is where I go and have had excellent treatment and care.  You are at the "scary" part right now but, as all the ladies here keep saying, having a plan helps tremendously and having a support system is critical.  I'm here for you!

KittyGirl2011

Squeak and nancygv55, we are all near neighbors!  When I spoke with my surgeon he said that finding someone with extensive experience with BC is the best route.  Even at the Mayo you are not promised to get the expertise you expect since they would have an intern do the surgery (with guidance from a BS).  That did not make me comfortable with that at all!  I was very happy with the Cobornn's Centra Care Cancer Center and the most up-to-date care I did get.  PM me if you need any more information.  This journey has been a real rollercoaster but the best part is having a plan and feeling confident in your choices.  This will come, just do your homework and you too can be happy.  Kitty

jenn333

Hi girls - haven't posted in a bit. Got home Sunday from UCLA after UMX and immediate DIEP reconstruction. So far, so good and the wretched drains are coming out TODAY!!!



Welcome to the newbies - you've come to the right place. We'll all get through this together.

ingoodcompany

Hi everyone.

DX 3/07/11 IDC stage 1b grade 1 100% ER postive neg PR neg HER no node involvement

I am 47 years old and the mother of two wonderfu kids........... hardest thing at first was telling the kids and calming their fears. I am BRCA neg, although my mom has had BC twice over 25 years and my sister at 28 ( 20 years ago)  had BC. ( both are fine since)

I had bilateral macestomies 22 days after DX I had been watched closely for many years and had had annual mamograms and most recently in the past 2 1/2 years had had 5 MRI's ...... I was done being tested so I decided to have both removed after consulting with my BS. I choose TE delayed and am about half way through the process.

It is nice to have a place to communicate with others who are sharing the experience and know we are here for eachother.

I agree with other's on the site that this has to be the most surreal experience ever!!!

TinaT

It's been 4 weeks today since my exchange surgery and I'm still a happy camper!  I just posted an update in the photo forum...

squeak

Today was a little rough.  Broke down and cried some,  I've been trying to stay strong for my family, mostly my kids but it's hard.  I'm going to have to take some time and just cry it out, but I don't want them to see me do it.  I got the pathology report and found out a little more, I hate this information coming in bits and pieces.  The Nottingham grade and score,  the contradictory IDC, DCIS thing.  Ah well. 

Nancygv55, I'm in the Allina system, I wish I could go with Park Nicollett.  Are you with the Jane Brattain Breast Center?  I wanted to go there, but I don't think I can. 

Kitty, I haven't heard of Centra Care Cancer Center.  St. Cloud might be a bit far, though.  I'm glad that you're happy with the care you've gotten!  I'm slogging through the books and web sites and trying to learn all this stuff.  I wish I didn't have to, but here I am.  What can you do?

I'm so glad I found this place, I don't feel so alone!  Thanks so much!!

Jenn, I'm sending you healing thoughts and wishes!

TinaT

squeak - The waiting is difficult.  We were all once where you are now, wondering and waiting and speculating about everything.  The mind gets overwhelmed and starts to race with all the "what ifs".  I'm sure you've heard this ten times before, but it will get easier once you have all your information and a plan is in place.  Cry all you want and try to take it one day and one step at a time.  Please take care......

Knicastro2

Dear 2011 Sisters,

I think of you all often. Today I finished my radiation treatments. I will now start the Anastrozole (arimidex). Any feedback concerning Se will be greatly appreciated. My rads went

Very well with very little skin problems and tiredness. I keep you all in my prayers and thank you all for listening and supporting others.

Kathy

TinaT

Knicastro2 - Congrats on finishing radiation!  Onward and upward!!!  There are a number of threads on hormone therapy, but here's a pretty active one specifically for Arimidex:

http://community.breastcancer.org/forum/78/topic/755969?page=108#idx_3217

See you over there!!!

Merlinda

Checking in... life is still hectic, I am busy driving the 55 miles each to and from my radiation treatments (half way thru).  I begin Arimedex in December.  I hope all of my fellow sisters on this forum are doing well, given the circumstances.

Merlinda