New and Confused

profbee

Hi, everyone.  I've been on the waiting for test results boards for over a week or so.  I've been diagnosed with IDC...grade 3.  No news on the hormone stuff yet--pathology still out.  I've got a lump of about an inch.  I'm just so tired of getting info and then needing more, needing more.  I can't wait to know the whole story and have a plan for treatment.  I'm heading down to Dana Farber in Boston next Tuesday, and I am really hoping that will bring some answers.  At first, we thought lumpectomy and radiation, but now waiting on the hormone results, and depending on sentinal node biopsy and what that says for the invasion, I guess chemo may be recommended since I'm 39.  I don't know what to expect, and I have such high hopes for Tuesday's visit, but I know that even then  we won't know the whole picture until after surgery.  Gosh, this is tiring.  

I just wanted to introduce myself and say hello.  I found the other board to be so supportive, and I'm sure that I'll find that here too.    

Best wishes to everyone,

Cristy 

KELL414240

Hang in there Cristy!!! That's the hardest thing to me about this is waiting for all the results. When you get the hormone receptor info, lymph node info, etc, it will help you make the decision.

 Praying for you!!!

Rennasus

Welcome Cristy! Yes, the beginning of this journey is the hardest part.

I was diagnosed in early DEC and had BMX in early FEB and I am STILL waiting for my oncotype score! The waiting never seems to end; there is always a 'next' decision to be made. I try to look at the waiting as extra time for me and my family to get used to whatever my next treatment phase might be. Hope that helps a little!

Sagita

Hello!

Same here with me, waiting patiently. Change physicians for referral and have been waiting for 3 weeks just to find out there's miscommunications happened & all my lab test were'nt forwarded to my new physician but glad all settled this week. Don't know what stage i am yet, still no idea what possible treatment i'm about to face. It's been a month now since i found out I have BC, each day trying to keep my head busy to get me by w/o thinking BC. It's really tiring & depressing. The good thing is they are settling my Health Insurance now & checking my pathology result. Hopefully next call i will have is telling me my appointment date to my new physician.

slinky

Welcome Cristy,

Sorry you have to be here, but you will find a wealth of information to help you through this hard time.  Not knowing is the hardest, but once you get your results, you can start putting a game plan together.  I found out at the start if the New Year and it came as a complete shock to me and everyone around me.  I am just now getting out of bed and becoming more active - 7 weeks post BMX with some minor complications.  I can't wait to get back to the life I knew before breast cancer....although I know it will always be different.

curecx2011

Cristy- As sad as it may sound..WELCOME to this Club.

 A scary club to be in however, you will get through it! BC is emotionally draining and at times can be depressing. However, you can make it. I am 7 months out from being diagnosed and I still suffer from depression about my "NEW" life, as life will never be the same. Hang in there. BC is survivable and DO ABLE...Just take it each day at a time.....Praying for you. 

profbee

Thanks so much, everyone.  It IS so wonderful to have this place to go to.  It's kept me sane--a place I can rely on correct information, while people remind me to take it one day at a time.  So far, they've been talking to me about lumpectomy and radiation (although now that we know it's invasive, they've prepared me to hear that I'll need chemo), and I keep seeing everyone here--and it seems like a lot of people have had mastectomies.  I guess I'm still fooling myself that I've just got this one trouble spot, when I really have cancer.  Y'know?  It's going to be a long week waiting for my Tuesday appointments.  Thanks so much for welcoming me!

djls

Hi profbee,

I'm sorry you ended up testing positive for IDC. I was so hoping it would turn out to be nothing for you. I just got diagnosed with IDC, stage 2, hormone positive, Her2 negative (just got that news today!).  I start my chemo on Monday to shrink the tumor so we can have clear margins when I have my mastectomy.

Take it one day at a time.  All the ladies around here keep telling me that chemo is doable, breast cancer is doable and I believe them.   Waiting really is the worse, as you already know from waiting for your diagnosis!  Once I got a game plan, it really helped me to focus.  I know what I need to do to get better and that's my goal.  Hopefully it will be easier for you too when you have a game plan.

 Hang in there...and again, I'm so sorry it ended up being positive!  I really, really, was hoping it was benign!  You seem like a strong, intelligent woman from your posts on the waiting board.  You're going to get through this and come out the other side!

 djls

mdg

I just wanted to wish you luck.  I started my journey in December...I am a few months ahead of you.  I am 45 with a 4 year old son so this has been quite a ride.  So far I am doing great and I had lumpectomy/SNB, bilateral mastectomy and started chemo 2 weeks ago.  It is doable...not neccissarily fun, but doable.  Hang in there....hugs!  PM me if I can help in any way

profbee

Thanks, Djls.   I can't wait for my game plan.  I know I'll be really glad that we slowed down and got a second opinion down in Boston before jumping into anything, but I'm SUCH a planner.  This is driving me batty.  

Mdg--I have a 4 1/2 year old!  I'm 39...and a half.    I'm reclaiming that as part of the better prognosis for older women.    I'll have to PM you...part of what I'm wondering is why so many go to the mastectomy.  Did you have to?  I don't know my ER, PR, HER stuff yet, but my tumor is 1 inch or so and it's a grade 3.  I guess I'm just getting antsy that the treatment options are going to be more intense than I expected already, and I am guessing that will be one of my decisions after I hear all the options on Tuesday.  Oooh...you have a blog!    Must hit that.

Thanks women. 

shannonW

Welcome to a club you never wanted to join! I'm 40 and was diagnosed with extensive DCIS(right breast) on 2/8/11 and had BMX on 2/25/11 with TE's. The hardest part is the waiting and if this journey taught me anything was patience and priorities! I was always going, doing something, 2 part-time jobs, a hubby,  2 kids, a dog, lessons for the kids, congregation, family, friends...always something. First I had to realize I'm not the doctors only cancer patient. Next I learned I just have to wait and in the mean time focus on the more important and forget about that less important. I think I'm a better person for this journey I'm on~that's me focusing on the positive. The third and final thing I learned is TOO MUCH reading on the net can make you crazy! Often all the worst case scenarios are written about and can leave you feeling worse than better. My radiologist recommended I get the book "Breast cancer for Dummies" from Barnes & Nobles. This was a huge help on knowing what to expect. Hang in there!

DCIS with Paget's disease, stage 0, 3cm, 0/2, grade 2-3, ER+/PR-

momand2kids

Hi

I wanted to reach out and let you know that I had my treatement (chemo and radiation) at the Farber and it was great.  I had a lumpectomy at mass general then moved to DF for treatment.... if it is invasive, make sure to discuss the oncotype dx test with your dr.  It will help you make an informed decision about chemo--they usually recommend it..... 

 you will feel better with a plan--- step by step you will walk through it..... chemo, while not fun, is not horrible either--- I did it with two small kids and a full time job--not saying that is how you have to do it, but it can be done if necessary...... there are wonderful docs and physician assistants at the farber and this is what they do all day every day.. you will be in good hands.  If you don't like the first onc, there is always another one around......

 if you need it, I have a great salon for human hair wigs.... not too far from the Farber...

 keep us posed. PM me if you would like any more information

profbee

Well, it looks like I am ER positive (40% stain), PR negative and the HER isn't in yet.  So, that's not great from what I hear.  Doc said that makes chemo more likely.  Anything else I should know?  Any other insights?  I'm really not all that put out by it.  Again, I think they've been prepping me for this--saying I was young and that they treat more aggressively.  At the moment, I'm more caught up in my coughing boy's 102.4 fever--he gets febrile seizures, so I'm really hoping today doesn't end with an ambulance trip to the ER for him.  Mommy has other stuff to do today.  Sheesh.

edwards750

profbee..welcome..none of us wanted to have a reason to be on this forum but thank God for it. I was Stage 1 Grade 1 until the Path report came back after my lumpectomy. It showed a micromet in the SN so mine became Stage 2.  My BS said that would get me chemo but the oncologist decided I should have the oncotype test done because she said she didnt not want to overtreat me. She also said a positive node is NOT automatic chemo. The oncotype test was done and mine was back in 9 days which included a weekend! I cant understand why some of you guys have had to wait so long. Mine was actually sooner than the estimated 10-14 days. My score was low and the micromet was small so my onc said no chemo - radiation and Arimidex for 5 years so there is so slam dunk treatment anymore thankfully. Whatever happens just know it is treatable and you have a lot of support to help you get through this...hope your son gets better! Diane

profbee

The oncotype test is one of my questions for my appts on Tuesday.  This is a second opinion of sorts--met with a surgeon already up here in NH, but haven't seen an oncologist yet.  So, the wait for me is really on my end because I wanted to go down to Dana Farber and get some world class opinions.    It feels like a long wait, but I figure a week or two now won't mean much, but going without expert opinions really could.  I'm lucky to live close enough to Boston, so why not take advantage?  I'm expecting things to speed up quickly after my initial appointments on Tuesday.  sigh...if Tuesday EVER gets here!!!!    -Cristy 

AnewBeginning

Cristy welcome to the club we never planned on joining!  I too am fairly new here and am more or less in the same boat as you. WAITING!  I was Dx in December, worst Christmas present I have ever gotten.  My first surgeon told me if you were going to get cancer this is the best one to get......OMG!  He dx me with DCIS stage 0.  He then sent me for an MRI and the MRI showed some othe nearby thing suspicious of residual disease.  I really like my Surgeon but the office staff left alot to be desired such as not returning phone calls, not calling for authorizations to my health insurance, etc. so I decided to see another Surgeon in NY.  This surgeon had my film, Stereotactic Biopsy and my MRI and also gave me same dx.  I was a bit relieved since I had read alot about DCIS and it being contained in the duct.  I had my surgery (Lumpectomy and Radio Frequency Ablation)  in place of radiation.  My doctor told me he got clear margins and it sounded good until my pathology report came back 10 day later.  I was then told there was a  single mass of micro invasion.  I asked how that changes my treatment (which I thought was over) and he said it doesnt.  After coming to this forum I have to say I have learned alot.  I have not had the sentinal nodes tested (both doctors thought it not necessary) and now I am scared because of the MI.  He never told me if my dx has changed as I imagine now it would and also I dont know the Oncotype or the HER, whatever that is.  I only know I am ER/PR- so I cannot take Tamoxifan.  I decided I will see an Oncologist due to the many woman here who had similar situation.  I am trying to get a recommendation to an Oncologist rather than just pick one from the internet or the yellow pages.  Hope your appt goes well for you on Tuesday!