Newly diagnosed with IDC

My loss started with a few strands here and there... I cut it short in preparation.  Check out the Sept group...a lot of us posted pix.  Then on about day 19 after the first treatment I was taking a bath in the morning and handfuls of hair were coming out.  I came to my husband crying and he buzz cut it for me.  Felt alot better once it was done.  I have enjoyed playing with my scarves and hats as well as a couple of wigs.  You can get a free wig at your local American cancer society office.  My insurance would not cover.  I also signed up for a free scarf at gaila and good wishes.  I know how difficult it is emotionally to be hairless.  {{{HUGS}}} to you as you start it.  You will get used to it though..it takes me no time to get out the door now and showers are a breeze as I do not have to shave my armpits or legs anymore. 

Maggie

Mine started 12 days after my first tx. I immediately went to my "wig lady" since I had already selected and ordered my wig. She buzzed it all off, helped me fit the wig properly, and that was that. I was so terrified and in shock at the prospect of losing my hair that I almost refused chemo (actually, I did refuse, but changed my mind when I came to the realization that it was my hair or my life ). But once I took that step and got rid of the hair myself, I felt amazingly empowered. There are so many things that aren't under our control in this journey that it feels really good to take charge of the things that we can control. And I know that it's hard to believe, but after it's gone, you just focus on other things. Another thing that's hard to believe...it DOES come back. As stupid as it sounds for me to say that, I couldn't imagine/remember what hair on my head felt like after awhile, so I tried to forget about being bald. But once the sprouting starts, you would think that you were the recipient of a freakin' miracle!

Good luck, Laurie. Anticipating the loss is far worse than the actuality of it.

Marin

laurieloomis-you will get through this.  I look back (it will be 3 years on 11/14 since i received that call confirming my worst nightmare) and can't believe everything I have been through.  It's funny, when I had no hair and would come home from work, I would take my scarf off and be bald.  My daughter (at the time she was 16) said" mom, you look good bald.  My husband would smile at me and tell me I look beautiful.    The hair comes back!

I am so sorry you have to be here. 

I didn't have to have chemo either, so you never know you may not need chemo. I had 16 treatments of radiation and it wasn't that bad. 

I did notice that some of you had the same diagnosis as I did, and you had chemo and a full masectomy. I wonder how a doctor determins if we have radiation or chemo? Is it the oncotype test or just what?

Good luck tomorrow, are you bringing someone with you?

Laurie:

Just to let you know, I'm a middle school librarian and went through the whole scarf/hat thing with 950 11 - 15 year-olds.I did not wear wigs; I just find them too uncomfortable.  They'll be curious, but probably very accepting.  And, having worked in elementary, I'll bet they'll be even more accepting.  The kids will probably surprise you with how wonderful they'll be.

My hair (all over my body) began coming out at about 14 or 15 days after the first treatment.  I, too, shaved my hair completely once it started -- that was one thing I had control over.  In truth, I did NOT miss shaving my underarms or my legs for the 4 months I went through treatment. 

My diagnosis just came in today.  It is IDC...low grade 1, stage 1.  It's 5 mm (about the size of a pea) and doctor said he could do a lumpectomy and we'll talk about radiation.  I would want to know the percent of recurrance if I do or don't do radiation.  Anyone have any idea on that?

laurieloomis:  I have an app't monday with my bs to go over final results of my pathology report.  He will give me this information at that time.  I'm hoping for the best news.

kaara I beleve if you have a lumpectomy,  radiation will follow.  There is a test done called  Oncotype Dx .  Here is the site http://www.genomichealth.com/en-US/OncotypeDX.aspx

About the Oncotype DX Breast Cancer Assay and Early Stage Breast Cancer

The Oncotype DX breast cancer assay, is a test that examines a breast cancer patient's tumor tissue at a molecular level, and gives information about a patient's individual disease. This information can help individualize breast cancer treatment planning and identify options. The Oncotype DX breast cancer test is the only multigene expression test commercially available that has clinical evidence validating its ability to predict the likelihood of chemotherapy benefit as well as recurrence in early-stage breast cancer. The Oncotype DX gene expression assay is intended to be used by women with early-stage (stage I or II), node-negative, estrogen receptor-positive (ER+) invasive breast cancer who will be treated with hormone therapy.

marlenet:  I know about the oncotype test, and I will definitely be asking my doctor about it...thanks for the link.

Morning everyone!  If there could be any good news in any of this, I guess I got some late yesterday when I met with my BS.  I am IDC grade 1, stage 1, HR+(89%) PR+(75) HER2-.  The tumor is very small, 0.8 cm, so lumpectomy and sentinel node biopsy and depending on outcome of that, some rads.  I meet with the remainder of the team (dr., nurse coordinator, onc) next Wednesday to go over everything and come up with a final plan for treatment.  The patient gets input into this process.  It's a program modeled after the one at Mass General and my boyfriend and I were very impressed, so much so, that I'm not even going to get a second opinion.

 I left yesterday feeling very confident that I'm in the right place to have this surgery, and that my decisions will matter with regard to treatment and follow up.  The only other thing I will do is meet with a naturopathic doctor to do some complementary therapy in coordination with the radiation treatments if I need them, and to put me on a program to prevent recurrance.

Having this information at Thanksgiving is timely.  I can certainly count my blessings that this was caught in the early phases.

Wishing everyone a very happy Thanksgiving, and sending lots of prayers andpositive energy!