Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 06:30AM - edited Dec 10, 2012 07:55AM by TonLee

Posted on: Jan 31, 2011 06:30AM - edited Dec 10, 2012 07:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Jan 31, 2011 11:04PM pejkug3 wrote:

I'm trying to learn all I can about triple +.

I was diagnosed with IDC on 1/13.  I had my lumpectomy and axillary node dissection on 1/27.  I should receive final pathology on that tomorrow.  My surgeon believes he got clear margins and my initial SNB was clear.  My tumor was <1cm so I was very, very blessed to find it so early. 

I'm morbidly obese.  I could easily lose 100lbs.  I crigne everytime someone comes down hard on a fat girl with BC.  I've always struggled with weight but it really got out of control after my daughter's drowning death in 2003.  Having PCOS and hypothyroid has added to the mess.

I was walking EVERYDAY for 35 minutes before my diagnosis.  I'm getting back to walking tomorrow.  I guess I'm a wimp because I still feel a little weak after my surgery (4 days ago)

I'm not even sure what tripe + means.  My surgeon keeps telling me how positive all my news is and how my final pathology will determine the need for chemo.  But triple + pretty much guarantees chemo, right?

Dx 1/13/2011, IDC, <1cm, Stage IIA, Grade 3, 1/8 nodes, ER+/PR+, HER2+ Surgery 1/26/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Targeted Therapy 2/23/2011 Herceptin (trastuzumab) Chemotherapy 2/23/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/27/2011 Hormonal Therapy 8/31/2011
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Jan 31, 2011 11:20PM - edited Jan 31, 2011 11:22PM by AlaskaAngel


Just wanted to add one more to the group of +++'s


Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+, Surgery 1/3/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/12/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/10/2002 Breast Hormonal Therapy 11/15/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 31, 2011 11:29PM mmm5 wrote:

Hi Triple Positive here too.

Just getting ready to celebrate my 3 year mark in 2 months. I have hated this bc ride but have learned much and know you all can do it too. The outlook for Her2 gals is very bright! 

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Feb 1, 2011 01:46AM LouLou40 wrote:

I'm another triple pos girl, ER 30%, PR 20% Her2+++.

I was dx 2 yrs ago this week, I had a lumpectomy and auxiliary node clearance, my BS wouldn't do a sentinel node biopsy as I had multifocal BC.

I did AC TH went into Menopause with my third AC aged 39 and haven't seen a period since.

My Onc started me on Arimidex as this is his preference for Her2 once I had finished Rads, my baseline DEXA scan showed  osteopenia and while I tolerated the Arimidex well, it dropped my BMD by a further 10% in a year despite VitD, calcium and Zometa so I had to stop the Arimidex after one year.  

My blood estrogen level was undetectable on the Arimidex and remained low when I came off it so I'm not taking any hormonal therapy unless my period comes back. We discussed Taxox but my Onc thought it would only reduce my recurrence rate by a further about 2-3 % max so for now I'm comfortable not taking anything.

I had a bone scan and CT just after surgery for staging and will just have a Mammogram and Ultrasounds yearly. 

It took me a while to get over treatment and I went back to work full time during Rads and have 3 little kids so was exhausted for about a year post Chemo, but now feel great and back at the Gym most days and have heaps of energy. I don't have no long term SE's from treatment, which I'm very thankful for - well except Menopause and osteoporosis!!


Surgery 2/10/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Dx 2/11/2009, IDC, 2cm, Stage II, Grade 3, 2/10 nodes, ER+/PR+, HER2+ Chemotherapy 3/10/2009 AC + T (Taxol) Radiation Therapy Targeted Therapy Herceptin (trastuzumab)
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Feb 1, 2011 07:11AM sunflower71 wrote:

Just a quick tip for those suffering from hot flashes: Flaxseed!  I have been researching alleviating menopausal symptoms lately, specifically hot flashes and lack of mojo.  Typically, symptoms are alleviated with hormone therapys, aka estrogen, which is now our number one no-no.  I started eating ground flax seed on everything after reading that it would help with hot flashes (and it's good for you).  I do feel it is working, I am still getting them, but not as severe. 

Dx 9/23/2010, IDC, 3cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ Surgery 10/14/2010 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 12/2/2010 Herceptin (trastuzumab) Chemotherapy 12/2/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 4/3/2011 Breast, Lymph nodes
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Feb 1, 2011 07:13AM Omaz wrote:

Thanks sunflower, I was eating some in my oatmeal but forgot, now I will put it back in!
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Feb 1, 2011 07:21AM saralmom wrote:

Add me to the triple positive list!  I was diagnosed almost exactly a year ago, and had 2 lumpectomies - first one didn't have clear margins.  Due to 2 sentinel nodes positive (none after that) and the need for Herceptin, did ACx4 every 2 weeks, then Taxol every week and Herceptin every 3 weeks.  Will finish Herceptin in June.  Also had radiation Sept - Oct. Have been taking Tamoxifen since finishing rads, and also had a hysterectomy (laparoscopic) last week - I'm 44 and haven't had a period since May during chemo, but my onc wants me to stay menopausal and also decrease estrogen production, not to mention I have a history of uterine polyps, and Tamoxifen can have uterine cancer as a SE.  My onc says that she prefers to keep me on Tam for now rather than switch to an AI - so I'm interested to hear what others experience is with this.

I'm so happy to read about all of you out there diagnosed 2, 3, 4, 5 years and beyond.  You are my inspiration.  I am also keeping up with info about most likely recurrences for Her2 being in the first 2-3 years - I am a bit obsessed with recurrence fears at times.

I haven't had scans at all.  Just my diagnostic mammos, and MRI before surgery.  My onc insists that symptom monitoring and blood work are enough at my stage.  She says that if anything hurts for more that 2 weeks, we will look at it.  Of course I have aches and pains all the time and am constantly assuming its mets.  Even had a liver scare with blood work - but ultrasound showed nothing there - all normal.  So now I am starting a program at my cancer center focusing on relaxation and meditation as a way to cope and handle fears, moving forward etc.

For those of you who are just starting on treatment - you can do it!  I was so anxious about chemo and it was very manageable, and even seems so long ago at this point. I love hearing about how Her2 outlooks are so bright these days.  And feel very lucky about having Herceptin for my early stage BC.


Dx 2/3/2010, IDC, <1cm, Stage IIA, Grade 3, 2/16 nodes, ER+/PR+, HER2+
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Feb 1, 2011 08:30AM blondie45 wrote:

TonLee - I am currently on tamoxifen for about a year now and have been in full menopause since chemo in summer of 2009. My onc has told me they will do the blood test to make sure I am in full menopause in Oct of this year and if so he will switch me to an AI. I think tamoxifen is usually used in those that are not in full menopause but not always, my mom is taking it and she is in her 70s but she was also grade 1, stage 1 DCIS only with lumpectomy and rads only.

Dx 4/14/2009, IDC, 1cm, Stage IIIA, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Feb 1, 2011 08:51AM nora_az wrote:

Hi there!

Add me to your triple positive list!

I am just past number 4 of TCH

Had DIEP done and now looking at needing a hernia repair when I am done with chemo but still happy I did it.

DIEP with nipple sparing mastectomy on 10/13/10 TCH started 11/26/10 Anastrozole started 4/7/11 Hysterectomy/ooph and VATS (lung) surgery 5/22/12 diagnosis Coccidioidomycosis, not metastasis to the lungs as they thought. Yeahhh Dx 9/3/2010, IDC, 1cm, Stage IIA, Grade 3, 2/17 nodes, ER+/PR+, HER2+
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Feb 1, 2011 09:11AM TonLee wrote:

Herceptin canceled today because of the weather.

Geewhiz and Cindy I'm looking forward to the crosstalk information as well.  Please let us know what you learn.  I plan on asking my Onc next Tuesday.

KrisKat welcome!  Good news on the clear margins.  Will you be tested for the BRCA? 

Pejkug welcome!  I am so sorry about your daughter's death, and then a BC diagnosis on top of it.  I am also hypothyroid (and went undiagnosed for several years) so I know what a monster that can be as well.  In fact, imo, fatigue from being hypothyroid is 100 times worse than from chemo.  Learning to live and deal with that for so many years really prepared me for chemo (so far).

Fitness is one of my passions.  I think the reason people may "come down" on obesity during BC treatment is because it is one of the very few things we (the patient) actually has some control over.  But please do not be offended.  Our goal is survival.  Walking is an awesome way to start a fitness program.  If you can work up to an hour a day (an hour really is the gold standard for losing weight) and no more than two hours a day though, I believe you will not only feel better but start losing weight.  If you'd like to talk thyroid/BC/Fitness issues please feel free to PM me.  I've never been morbidly obese, but I did gain 30 pounds while undiagnosed and living in Alaska.  Hardest 30 pounds I ever lost!  Lol

Please let us know what your final path report says.  Maybe we can help you figure it all out. 

Triple positive means your tumor was positive for HER2, Estrogen, and Progesterone.  (Estrogen and Progesterone grow the cancer.)

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+

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