Topic: Newly diagnosed and don't know how to navigate this site

Thank you for responding Cheryl.  How was the TC regimen?  Did you lose all of your hair (including eyelashes and eyebrows)?  Did you you lose or have any major impact on your fingernails or toenails? 

Lori 

Hi Lori,

 Sorry you have had to join us.  I was diagnosed at age 41, also stage IIb with er/pr+, her- and a 4 cm tumour in October 05.  So I am an oldie here.

My treatment was 4 a/c and 4 taxol.  I had 3 out of 23 positive nodes thus the extra 4 treatments of chemo.  I also had a lumpectomy with radiation, had my ovaries removed last May and am on Armidex (hormonal) drug to help prevent reoccurance for 3 years now.

 Most women do loose their hair during chemo, for me it was the most traumatic part of chemo.  But it is only TEMPORARY for a good part of about 9 months and it grows back in alot of cases curly and thick, thick.  I had long curly ringlets past my shoulders before I lost my hair, got it cut short in preparation for loosing it.  I cried my eyes out when it started to fall out but then my husband shaved it off for me so it wouldnt all just come out on Christmas Day in the shower.

 I did loose my eyelashes and eyebrows.  I got really good at drawing fake eyebrows and well the eyelashes just let it be.  My eyebrows and lashes came back fairly quickly about 3 weeks after the end of chemo finished.  I didnt have any problems with my nails, except my little one turned black but never fell off. 

Everyone is different in how they handle this disease, the emotional impact is the hardest...it is similar to going through the grieving process.  You are grieving the loss of your old carefree life prior to bc, denial and anger are the first steps of it.  At a much later date the acceptance will come...be kind to yourself...baby steps will get your through this...one day at a time.

You will soon learn how to navigate this board, it is fairly easy.  Click on the topic that you want to see and there are different subjects within those main threads.  You have figured out how to post a question and then you can also receive private emails.  If you have a private message it will show up highlighted as New under the Private Messages Tag at the top of the page.  Just click on that and you will be able to read the message and respond back to someone if you want to.

All the best in your journey, it is a tough one physically and emotionally but life does return to a new normal afterwards.  I am proof that you can come out the other side of this nasty disease!

 Michele

Hi Lori,

yes, i noticed that your stats were similar to mine.  we thought my tumor was smaller than it ended up being..  once my surgeon went in for the lumpectomy it was bigger than she expected.  she removed it but didn't get clean margins.  at that point, she could have done more surgery, but like you i was a big b, small c and it would have been too noticeable.

as well, i've been pretty agressive about my decision making and i wanted a bilateral.  my surgeon talked me out of it but when the margins didn't come back, we did it my way!

i am being treated by amazing doctors at ucla!  and, i've done tons of research on my own.  so, i feel very confident in my treatment.  i just finished rads yesterday and now i'm moving on to a hysterctomy to rid my body of estrogen (i'm premenopausal).  then, i'll need a bit more breast surgery to finish my reconscruction.

if it helps, you're welcome to read my caring bridge:   http://caringbridge.org/visit/lisamittleman  a few others that have been diagnosed after me have read it.  while long, you can skip to the parts that pertain to you. 

good luck!
Lisa

p.s.  yes, the hair loss is a SCARY and EMOTIONAL thing.  to be honest, i never thought about it not coming back.  my biggest issue was that my daughter (then 5) FREAKED when i lost my hair.  it was bad!

Hi Michele:

I really appreciate your response.  You also had a large tumor.  One of the things that has been an issue for me has been how did I not notice this mass until it was so large?  Even though my mother had breast cancer, I neglected doing BSE.

Thank you for sharing your experience with hair loss including eyelashes and eyebrows.  Like most women I suppose, my hair has been part of my identity -- in my case since high school when I had near waist-long blonde "Marcia Brady" hair (I'm 51 so perhaps you can't relate to that era since you're so much younger).  One of the 2 women undergoing tx I've been in touch with chose to shave off her hair so she wouldn't wake up with it all over her pillow.

As you said, the emotional impact can be difficult.  Being single,never married with no kids, I have a pattern of trying to bear my own emotional burdens, but I am realizing this one is too much for me to bear alone.  Because I have been on an emotional roller coaster since being diagnosed, I know that I need support from other women who understand -- both online and in person.

Glad to hear how well you are doing.

Hi Lori:

I've been diagnosed with multifocal IDC a week before you but am still waiting for surgery but dithering on whether to have a lumpectomy or a mastectomy. My biopsied lump is 1.5 x 1.6 x 1.3 cm. An MRI found a second spiculated mass adjacent to this 1.2 x 0.7 cm.

When did you have surgery and how come they didn't do the SNB at that time? 

BS says I'm still a candidate for a lumpectomy as although she'll have to remove a sizeable chunk, she says there is enough spare tissue in the breast that could be moved around during reconstruction.

Mary

Hi Lisa, I am being treated by physicians associated with Hoag Hospital in Newport Beach. 

Although Hoag has a dedicated Breast Care Center, because I have an HMO (Blue Shield Access Plus) with Greater Newport Physicians as my IPA, I am not able to go to any of the surgeons or oncologists who are part of Hoag's BCC as none of them are part of the GNP IPA. 

For most of my career prior to my recent focus on real estate, I was in either hospital administration or management consulting to hospitals and healthcare organizations.  I have an MPH in Health Services Management from UCLA.  In my opinion, it is a shame that the 100,000 HMO patients capitated to GNP do not have access to any of Hoag's BCC surgeons or oncologists.  Fortunately, the GNP surgeon to whom I was referred seems to be very well qualified.

Additionally, the plastic surgeon to whom I was referred and who is part of my HMO network also seems to be well qualified. 

HI Lori,  I'm sorry you hit a posting limit.  I didn't even know there was such a thing.  I don't have IDC, but there are some other things that are similar about our situations.  I was a little older than you are, I was 57 when diagnosed. (I'm 61 now.)  My multifocal tumors covered an 8 cm area.  I wanted to be treated at UCLA but my insurance wasn't accepted by them.  I did go there to get an evaluation and second opinion from a surgeon, Dr. Chang, and an oncologist, Dr. Glasby, and then took their recommendations to my treating doctors.  That gave me confidence in my decisions.  I also had neoadjuvant therapy and bilateral mast.  I had a SNB before chemo. I had AC not TC.