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Dec 12, 2008 09:59AM
, edited Dec 12, 2008 10:08AM
when i was diagnosed 10/3/08, i didn't know the first thing about cancer, much less ER this, PR that, HER2 whatever! in only 1.5 months after that, i had ultrasound, core-needle biopsy, MRI, and double mastectomy 11/20/08. my surgery was extremely easy and recovery has been a breeze. but i think it's because i was in great shape physically before surgery, and also because of the books i read (hours and hours of reading), questions i asked, and how fortunate i was to speak with many other women going through the same thing.
PLEASE get yourself a copy of www.amazon.com/Dr-Susan-Loves-... Susan Love's Breast Book. this will tell you everything you need to know about everything. get the latest copy, which might be 2005 - so that means the chemo info is sometimes outdated, but she explains everything so incredibly well about breast cancer, oncology, radiation, details about surgery and recovery, etc. it's an invaluable book and is always given to breast cancer patients at the hospital i went to in reno.
also, i found these websites absolutely life saving in terms of info, discussion, support:
community.breastcancer.org/ - fantastic forums to learn so much and ask questions from women who are experiencing breast cancer, treatment, and recovery
www.cancer.org/docroot/lrn/lrn... - American Cancer Society website
ww5.komen.org/ - Susan B.Komen for the Cure website
www.nlm.nih.gov/medlineplus/br... - Medline website with photos of women with lumpectomies and mastectomies
be sure to see the documentary www.crazysexycancer.com/ "Crazy Sexy Cancer" and then check out the website http://my.crazysexylife.com/
I can suggest many, many more sites if you want me to list them. They have saved my life during my experience. I also joined a support group at the hospital, and immediately got a nurse navigator (INVALUABLE!!) and dietitian, which are free services at our hospital.
if you read the Susan Love book, you will understand everything that's so confusing at first - when do they stage? how do they grade the tumor? why is chemo necessary? when is radiation necessary? why is tamoxifen given to pre-menopausal women after chemo?
please e-mail me if you want to connect off-forum - firstname.lastname@example.org
I've blogged my experience at www.ddlatt.blogspot.com/and published photos of my experience and my mastectomy at flickr.com/photos/oceanbornstu... i'm a professional photographer (www.deborahlattimore.com), and my form of therapy is to document what i've been going through. it was such a shock to be diagnosed. i had never been sick a day in my life, not even with flu. but i wouldn't trade this experience for anything - it's amazing how many wonderful women i have met and how much my heart has been opened.
re: chemo. chemo is used to kill any possible cancer cells that may have gone in your bloodstream, whether you have lumpectomy or mastectomy. during my double mastectomy surgery, it was determined that my lymph nodes were negative (sentinel lymph node biopsy), but i still have to have chemo. my tumor was grade 3, which means it is a very aggressive cancer, so that's another reason to have chemo.
re: radiation. radiation is a local treatment, meaning it affects the area where you had cancer, not the entire body. if after surgery it is determined your surgeon got clear margins, you may not need radiation. what i have found is that no two radiation oncologists agree on anything. i've had one that said i needed 36 treatments, and i've had one that said i need no radiation.
my advice would be to always get second (and third) opinons about everything! that has been the best thing i did for myself. it allowed me to see all sides of different recommendations, and after research and discussion, i was better educated and could make the best decision for myself. i am having three opinions for my chemo treatment, three opinions about radiation, and also the consensus of the tumor board at my hospital. see if your case is going before the tumor board - that's very important information, if your hospital has one.
DX age 54. IDC. Stage 1, 1.2cm tumor 1 millimeter from chest wall. Had ultrasound, MRI, core-needle biopsy. Sentinel node biopsy (nodes clear) and double mastectomy 11/20/08, no reconstruction. AC/ Taxol, 35 tomotherapy radiation treatments.
10/3/2008, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-