Newly Dianosed and very confulsed

bizbeth,

The waiting and not knowing your treatment plan is the worst part, in my opinion.

You are going to be okay but you will have to wait for your Oncotype score.

I avoided chemo & rads, all because of my Oncotype score, (even with1 positive node) I waited a long time for the test results as at my BLMX my surgeon refused to do it- as I had 1 positive node yet my MO was fine with me having it, so that delayed it and the waiting was horrid.

Once you get your results you can get as many professional opinions as you feel you need. Then decide which treatment you feel comfortable with. Do what is right for you and your body, listen to others, but you must have the final word. I researched like a crazy person, I found Dr Susan's Love Breast book very good. I was going to wear Penguin Cold Caps if I was going to need chemo..I wanted to keep my hair.

Take your time and best wishes to you, you will get through this. And Tamoxifen isn't a big issue for me either, a few cramps in my legs now and again at night, but a tonic water at night seems to fix that! Minus the gin! lol

Hugs,

Ali 

bizbeth, you've gotten some excellent advice above. The only thing I want to add is that, when you have more information from Oncotype and such, you may wish to look at the Cancermath site to help you make a decision about radiation and chemo. Don't do it now -- you don't have enough information yet, for one thing -- but you might bookmark it for later.

http://cancer.lifemath.net/ 

What that site does is show you the various statistical outcomes for different treatments. It's quite helpful in understanding what the different therapies can do for you. 

The ladies on BCO will be here to help all along the way. 

bizbeth:

I'm so sorry for all you're going through.  Our stories sound similar:  I'm 48, was diagnosed on 11/22, after having an incisional biopsy on the 17th.  I am Stage 1 (1.3 cm), Grade 2, ER/PR positive and HER2 negative.  I had a lumpectomy on 12/5 and learned today that I am node-negative. I do not have a family history, but am also pre-menopausal.

So far, my tests are indicating no need for chemo - but my surgeon has set up an appointment with the hematology oncologist (the doctor who would do my chemo) to talk more about options, as well as the Oncotype test. Right now, we have to wait for those tests to be returned before we make final decisions - and as with every other aspect of this insidious disease, the waiting is the hardest part.  Learning to breathe (again!) while I wait to meet the new doctors and wait for the test results to come back and wait to make a decision that I really don't want to have to make.

My surgeon has been my only "point of contact" in my cancer journey so far - I have yet to meet any of the oncologists I will be working with.  Sometimes I feel like he's being too short with me.  If you don't feel your doctors are giving you the respect, time and energy you need and deserve, you have a right to seek a second opinion, or a new treatment specialist. 

For the first few days I felt like all of this was happening "to" me, and I felt completely helpless.  When I started reading these forums, doing reading online, talking with friends who are cancer survivors, and seeking out information I needed to answer my questions, I found myself empowered and far less helpless than before.  I have decided that this is my life, and as momand2kids pointed out, this is not a democracy, it's my decision!  Luckily, my husband has been by my side helping with research, but his first question is always, "What do you want to do?" 

You have found an incredibly warm, loving and supportive community of very knowledgeable individuals.  This is the first place I turn to when I have questions, need advice, or simply need to vent.  We are all here for you as you wait, and wait, and wait some more, and as you gather facts and information and prepare to make decisions. 

Take care of yourself, and remember to breathe deeply and hug yourself often.  In the meantime, here's a *hug* for you now,

Nancy

We have similar stats.  I was 45 last year when DX.  I am stage 1, grade 2 and was pre-menopausal.  The rest of my stats are below.  Tumor was 1.4cm.  I had an oncotype of 17.  I also had angiolymphatic invasion listed as present on my pathology report, but I don't have a strong family history.  I only had one aunt with BC and she got it in her 80's.  I got two opinions from two med oncs and one said no to chemo and the other one said she would recommend it.  I had to decide.  I chose the chemo because of the angiolymphatic invasion and the fact that I my son was so young.  I did 4 cycles of taxotere and cytoxan and it was not as bad as I thought it would be.  I used cold caps to keep my hair.  I did have a bmx with immedate reconstruction with TE's.  I just had my final surgery for nipples on Friday.  I am on tamoxifen too.  Feel free to PM if you have questions.  I am sorry about your diagnosis.  Hugs!

Bizbeth, I am cancer free today however I am still under my oncologist care 2011 due to lymphnode removal which they call total axilla removal which are located under your armpit and breast. These nodes are extremely important for immune system drainage and filtering out bacteria fungi virsues and when removed the whole area is backed out swollen and extremely painful and due to the lack of education in 2004 about lymphedema and how to get it treated and under control immediately my doctors left it undiagnosised until 2008 when i did research and asked them to get me to occupational therapy by this time my lymphedema is in stage two which means it is not curable and affects my daily life and I constanely have infections, and do every thing i can to manage this condition so  ask ask ask

dear sweetie, I know what you are going through, the questions, it,s all so overwhelming, please know that it will get better once your questions are answered, so I will tell you some of my story: I was diagnosed at 42 right in the middle of making plans for our wedding,so I didn,t want to get a mastectomy, but my fiancee, now husband and I opted for the mastectomy so my chances of survival would be better and also my concern about reoccurence,( idc, stage 2, 3 nodes involved, I had 3 months chemo before the total radical L mastectomy with reconstruction but expander removed because my body rejected it,3 months after mast. then we got married, then 7 wks of radiation, and 5 yrs on Tamoxifen.  I AM 17 yr cancer free SURVIVOR(Praise God) who I received my HOPE from and staying Positive, always saying to myself and out loud"I WILL Be A SURVIVOR.  Hang in there and come back here often we are here for you.  msphil

bizbeth, a couple of thoughts to add to the excellent suggestions and advice above...  Has anyone suggested that in addition to the Oncotype-DX, you should also have some genetic testing, since your sister also had bc?

Also, the fact that your surgeon has a very condescending attitude about your questions + you're not at all comfortable with either your med onc or your rad onc, makes me think you really need to find docs different docs.  Is your surgeon a breast surgeon, or (as I suspect), a general surgeon? Unless he has a very odd sense of humor, I can't imagine a breast surgeon making such a cavalier comment to a woman going through breast cancer -- which also makes me wonder if your med onc and rad onc are experts in breast cancer, or more general specialists, which may be why you aren't getting the right kind of communication from them to be comfortable with whatever it is they're telling you.

It's horrible to feel pulled in different directions by your DH and your kids when it comes to their thoughts about chemo. But neither one has all the facts yet as to whether or not chemo will even benefit you, so try to encourage them to wait until you have the results of your Oncotype.  I think you'll find that much less stressful -- one step @ a time.

One more question...  Did you have an MRI prior to your lumpectomy?   Hopefully, you did.    (((Hugs))) and glad you've found BCO...    Deanna