Topic: TRIPLE POSITIVE GROUP

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

Posted on: Jan 31, 2011 04:30AM - edited Dec 10, 2012 05:55AM by TonLee

Posted on: Jan 31, 2011 04:30AM - edited Dec 10, 2012 05:55AM 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."

http://community.breastcancer.org/forum/6/topic/797454



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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Jun 1, 2022 06:26PM jh40 wrote:

elainetherese - yea I think any knife to the brain sounds pretty horrific!

The entire treatment menu also sounds pretty horrific. I’ve known that menu is meant to prevent distant metastasis, but none of it sounds very appealing!

Hoping it will be a kinder path than I’ve imagined it to be.

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Jun 3, 2022 09:08AM specialk wrote:

jh40 - generally the chemo before surgery option is driven by tumor size and/or nodal involvement. About a decade ago almost everyone (myself included) had surgery first for Her2+ breast cancer, followed by chemo and Herceptin, and then radiation if needed. When Perjeta was introduced for early stage patients in late 2013 as an addition to Herceptin, neoadjuvent chemo became more the norm for those with tumors larger than 2cm, or nodal involvement, or some other constellation of high risk. In an effort to spare those with smaller tumors and no nodal involvement the potentially more damaging side effects of multi agent chemo regimens, Taxol and Herceptin given adjuvently is often done. Here is some study info about the success of this approach, and another link that discusses the longer term follow up of this study.

https://www.nejm.org/doi/full/10.1056/nejmoa1406281

https://pubmed.ncbi.nlm.nih.gov/30939096/

In my time on this site I have not seen quite that high a percentage of patients with surprise positive nodes, but that did actually happen to me. I have a history of faulty imaging, and it was one of the reasons I opted for a bi-lateral mastectomy. There are pros/cons to adjuvent vs neoadjuvent chemo - with adjuvent chemo you get the information from surgical pathology and have a clear staging picture. With neoadjuvent chemo you get to see how well chemotherapy reduces or eliminates your tumor, but the extent of staging can be muddy waters. If you have the option of either choice it can become which provides you more peace of mind.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Jun 5, 2022 02:42PM fluffqueen01 wrote:

jh40 -like special k, I didn't have the chemo option first, but it does make sense as far as showing if your body will respond. It would probably have made me nervous that something else was going on while I was getting the chemo, lol, but that's how my mind works. I chose mastectomy for many of the same reasons as you did. Had I been younger, I might have done something differently. One thing I really miss is the nerve sensation. That was kind of the hot spot for me and with it gone it has ben challenging in the romantic side of things.

Because I chose mastectomy, I did not require radiation. Had I not, based on my size, I was on the edge of needing it. Taxol was a pretty easy chemo to tolerate as things go. They took two lymph nodes to test on mine, which were clear.

On my ovarian side of things, there was no mass, so that is great news. I do have some calcifications in my right ovary, so they ordered a ca-125 test. based on those results, they may decide on hysterectomy. Currently both the oncologist and the ob/gyn say it isnt needed. But I have to hav another pelvic ultrasound in 2 months. I've decided to be patient until then, which isnt in my nature lol.


JH (I think)-keep a list of all your questions to take with you. I taped a couple of my conversations early on. It is amazing what you miss or forget.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jun 10, 2022 12:42PM joules44 wrote:

Happy Friday all! My oncologist is pushing me to get a Reclast infusion. I had my first bone scan a year ago and I was diagnosed with osteopenia in my hips and parts of my spine. I am on Arimidex and honestly I have a good deal of joint pain and some arthritis now. I am 55 years old. I'm curious if any of you have taken Reclast and what your experience has been. I am so tired of chasing side effects with other drugs that create new side effects. It's never ending!

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+
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Jun 10, 2022 01:46PM elainetherese wrote:

Isn't Reclast a biophosphonate? I was on Fosamax, but it was taken orally rather than via an injection. I had no side-effects from Fosamax

After six months on Fosamax, my oncologist prescribed Prolia, which is a shot every six months. I have no side-effects from Prolia. My bone density has improved from full-blown osteoporosis to osteopenia.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jun 21, 2022 06:17PM gamzu710 wrote:

Last August I was in LA visiting family when the pathology report with triple-positive IDC popped into my patient portal. The trip was ruined and I spent the rest of the time in a fog of alternating panic and numbness. Tomorrow we are leaving for LA again, to visit the newest addition to the family, my 2-month-old niece. Seeing the same people and spending a couple days at the same hotel where I opened up my patient portal and the ceiling fell in. 10 months later and I've got a buzz cut and a port and had to schedule the trip around my Herceptin and Zoladex injections and have all kinds of lovely joint pain from the exemestane. But I'm in a sweet spot between scans (MRI in May, f/u diagnostic mammo in August) where the ceiling can't fall in again for at least another month and I am determined to replace last year's bad memories with good ones in the same places.

I'm also determined to argue for a year of Nerlynx but that's a conversation for September.

Surgery 7/1/2021 Lumpectomy (Right) Hormonal Therapy 8/3/2021 Aromasin (exemestane) Targeted Therapy 10/1/2021 Kanjinti Chemotherapy 10/20/2021 Taxol (paclitaxel), Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 1/30/2022 Whole breast, Radiation boost: Right breast Dx IDC, Right, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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Jun 23, 2022 07:08AM cardplayer wrote:

gamzu710 - glad you’re replacing bad memories with good. I’m at the beach with my family Two years ago, they went without me. I was preparing to start chemo the following week. It’s always good to have something to look forward to. Enjoy your trip!

Targeted Therapy 6/30/2020 Perjeta (pertuzumab) Chemotherapy 6/30/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/30/2020 Herceptin (trastuzumab) Surgery 11/19/2020 Mastectomy (Right) Hormonal Therapy 12/3/2020 Arimidex (anastrozole) Surgery 12/9/2021 Prophylactic mastectomy (Left) Dx IDC, Right, 6cm+, Stage IIB, ER+/PR+, HER2+
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Jun 23, 2022 08:45AM jh40 wrote:

Hi again All

I had surgery on 6/13, single mastectomy. Recovery is going really well. I have a lot more fatigue then I ever expected but I'm still in good shape.

My surgeon called me yesterday and told me that the final path says the tumor was only 1.9mm and both lymph nodes were clear. This is obviously excellent news, but I'm shocked at how it could go from 11mm down to 1.9mm. My surgeon suspects that the radiologist got it wrong to begin with and that the tissue surrounding the tumor was not cancerous but appeared to be, and thinks it wasn't 11mm to begin with.

I remember also asking prior to surgery if there was a chance the tumor could be smaller because of what was removed during biopsy, but both my surgeon and oncologist said biopsy tissue isn't very consequential to the overall size, and if anything I should expect for it to be slightly bigger. The biopsy sample sizes were noted in the report and the math isn't there for 9.1mm of tissue.

This is a significant difference in size, and I'm just wondering at this point if anyone else out there has had this experience before? Should I ask for the images to be reviewed again by different radiologists?


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Jun 30, 2022 08:50AM jh40 wrote:

I've gone from great news to unexpected news. Met with my surgeon yesterday to be told there was a typo in the final pathology and the tumor was not 1.9mm but 19mm. There was DCIS in there as well but it was negative for EIC. So it went from 11mm to 19mm. 1 single cell isolated cell in 1 lymph node, nothing in the 2nd, which my surgeon says means that they're still classed as negative.

Is there anyone else out there with this sort of experience with imaging? Should I be asking for multiple opinions? I know imaging is not perfect but it's surprising that it could be this far off the mark.


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Jul 1, 2022 01:52PM joules44 wrote:

I did not have an experience like this with imaging but I did with pathology. I was initially told my tumor was HER2- but my oncologist insisted I send my sample to a second lab which came back with a portion of the tumor being HER2+. My tissue sample was passed around for so long, like weeks and weeks if not months, that I'm not even sure that the tissue pathology didn't change in the lab. It's frustrating to have to shift gears emotionally during a really stressful time. I'm sorry you're going through this. I don't know what advice to give about second opinions on the imaging but I feel you on the frustration. Wanting concrete answers around your health is a pretty basic need.

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+

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