Topic: TRIPLE POSITIVE GROUP

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

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM 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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Jul 1, 2022 05:02PM elainetherese wrote:

jh40,

In my experience, different imaging can produce different results. The ultrasound said that my tumor was 3.9 cm; an MRI said it was 5 cm with a lovely satellite tumor. Because my lump was close to the skin and could be measured with a ruler (so high tech!), my MO assumed it was closer to the 5 cm size. I will never know for sure what the actual size was because I then did chemo before surgery.

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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Jul 5, 2022 08:29AM jh40 wrote:

joules44 & elainetherese thanks for sharing. It's unreal to me that imaging and tests performed so often can be so inaccurate. We can send astronauts into space but somehow we can't manage to get this right? It really is frustrating.

It's comforting to know that I'm not alone in this sort of experience, with everything coming down to millimeters. I'm supposed to follow up with my original oncologist tomorrow, and my surgeon recommended a 2nd opinion, so I'll see what they have to say.

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Jul 6, 2022 03:15PM laughinggull wrote:

Hi jh40,

What you are going through is extremely common, imaging is only indicative, and the final staging is determined by the results of surgery. I understand your shock and frustration. I had a lot more cancer than the imaging predicted, so I can relate. Very, very common.

Please take solace in knowing that your tumour is still small, early stage, and your nodes clear, which is excellent news, and indicative of a very good prognosis!

Keep us posted of your next steps -and if you share the details of diagnosis and treatment, that would help others give advice.

Best Heart

LaughingGull

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2-
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Jul 8, 2022 11:10AM specialk wrote:

jh40 - my regularly scheduled mammogram showed no masses and no DCIS, but I did always have multiple palpable lumps, so often my mammo was followed by US. The US a few minutes later showed something with a slightly irregular border, along with the usual multiple smooth bordered cysts that had been seen and monitored for many years. Biopsy showed DCIS and IDC, with the measurements during the US backed up by MRI later. MRI indicated cancer only in the right breast, clear nodes. Because I image so poorly, and had a 20-year history of problematic cysts, I elected a bi-lateral mastectomy. Surgical pathology showed DCIS/IDC in the right breast with cancerization of the lobules also, and surprise ADH/ALH in the left breast. Cancer side SNB was initially clear in the OR, but later in the more thorough exam in the lab I had isolated tumor cells. My surgeon and oncologist insisted on ALND surgery five weeks after BMX (because of the Her2+) and that showed a much larger tumor in the additional nodes removed. It is indeed frustrating that we do not have better tools, but progress is always being made. Not particularly helpful in the now, but hopeful for future patients. Hang in there!

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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Jul 12, 2022 03:49PM jh40 wrote:

laughinggull- thank you for sharing your story. It does make me feel better that I’m not alone. I do still wish imaging was better but I guess if imaging was faulty enough we wouldn’t have such good survival rates. My oncologist said the same thing: keep your focus on the fact that it’s small still, and the prognosis isn’t any different.

specialK - it concerned me about the single isolated tumor cell in the one lymph on an IHC stain. Nothing in the second lymph. Should I have asked them to dig deeper? I know your situation is different to mine but is yours unusual? My surgeon took a conservative approach - which I appreciate - but I certainly wouldn’t want to miss anything.

My path showed IDC (no special type) clear margins (distance to closest margin 3mm), mentioned multiple benign cysts and mentioned uninvolved skin. DCIS present but negative for EIC and didn’t involve the nipple, and had clear margins. No microcalcifications. ER 70%, PR 75%, Her2 80%. Ki-67 40%. Grade 3. My left breast (which was not taken off) was noted as “unremarkable” on earlier imaging.

My Oncologist didn’t seem too concerned about the path. He said that if there were any cells floating around in there that the Taxol would kill them. He also said it was up to me if I wanted Carboplatin or not. He said that with the size of the tumor it technically still qualifies for weekly Taxol and Herceptin as a treatment plan, and he was fine with it because studies show it’s effective, but he said if I wanted to throw the kitchen sink at it he would support me. Not sure what road is best with that?

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Jul 12, 2022 05:24PM laughinggull wrote:

I know I would go kitchen sink -but I am not you Winking

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2-
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Jul 12, 2022 07:53PM - edited Jul 12, 2022 07:54PM by elainetherese

jh40,

I did a harsher chemo regimen than you (Adriamycin + Cytoxan then Taxol X 12 + Herceptin + Perjeta). However, my tumor shrank the most from the Taxol + Herceptin + Perjeta. Your tumor is small; studies show that Taxol is effective for small tumors; I'd do it.

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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Jul 13, 2022 08:10AM jh40 wrote:

laughinggull & elainetherese - thank you for the input. I’m also getting a 2nd opinion on the 18th just to be sure. I’m curious what she has to say

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Jul 13, 2022 04:55PM - edited Jul 13, 2022 05:29PM by maggiehopley

jh40,

I am triple positive and have two tumors in my left breast, the larger is 2.3 cm. My MO said that TCHP was standard of care, but I was eligible for the COMPASS study, which is investigating de-escalating the chemo part of Her2 positive treatment, and if I did it I would get Taxol weekly x 12 plus herceptin and perjeta. This is the standard of care for tumors under 2 cm. She strongly encouraged me to do the study, as both herceptin and carboplatin are hard on the heart. I took her advice, and just today finished week 8 of 12. Last week my MO did an exam and said my tumors have shrunk considerably and she can barely feel them. I am hopeful for pCR, but even if not, this regimen has been very effective and I have had very few side effects. ( I actually get Kanjinti, which is an herceptin biosimilar- basically the same drug by a different manufacturer). My hair has been shedding since week 4 but I still have enough that nobody notices that it is very thin. On TCHP there is the rare possibility that the hair loss will be permanent.

Chemotherapy 5/25/2022 Taxol (paclitaxel) Targeted Therapy 5/25/2022 Kanjinti Targeted Therapy 5/25/2022 Perjeta (pertuzumab) Dx IDC, Left, 2cm, Stage IIA, Grade 1, ER+/PR+, HER2+, IHC Dx IDC, Left, 1cm, Stage IIA, Grade 1, ER+/PR-, HER2+, IHC
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Jul 14, 2022 08:58AM specialk wrote:

jh40 - I am inclined to think that your single nodal cell may have been an artifact from biopsy, with the node doing its job of catching it if it was dislodged from the tumor during the biopsy process - as long as there was due diligence done by the pathologist in looking for more cells in the material provided post-surgically. In light of finding only one I would assume it prompted a thorough exam to find any additional. And, yes, my situation was indeed unusual - I believe in only about 10% of cases do you see my example, so the odds are definitely in your favor. My tumor was strongly ER+ and Her2+, but weakly PR+, which is potentially more aggressive, and it was 2.6cm so it had been there for a while, and this was possibly responsible for the nodal situation. It is a hard call as far as removing more nodes, but the sentinel node biopsy process has been around now for many years and the data collected guides surgeons on how to proceed if ITC are found. Removing more nodes increases the odds that you could develop lymphedema, which you don't want. Since you will now move to systemic treatment it will hopefully provide remedy if there are any additional rogue cells remaining in the axilla.

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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