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Topic: Recurrence risk for HER2 + with pCR?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Sep 2, 2017 11:23AM

NotVeryBrave wrote:

I'm wondering if anyone has any insight. I've looked at a few models online but can't seem to find info specific to me. The ones I've seen include stats and chemo and surgery but make no distinction for response to chemo or type of surgery.

I've spoken with my MO several times and he really either can't or won't give me any numbers. He wants me on Tamoxifen. I'm willing to try it, but I'm concerned because it seems like I always have SE's to drugs. Also - if there's minimal benefit, is it worth the risks?

There is no plan for surveillance for me - no scans, no blood marker tests, etc. Nothing beyond exams. I'll see my BS at the 6 month mark. I currently see my MO every 6 weeks while on Herceptin. I also would feel better with an assessment of uterus and ovaries before starting Tamoxifen and he won't order it.

I read on here about MO's that advise against treatments based on minimal benefit vs QOL to the patient. I wonder if I should seek a second opinion for oncology? I feel like mine just pushes all treatments - although he was very much against my BMX. Apparently that was too much treatment in his opinion.

What has been your experience? Anyone else with pCR willing to share their treatment plan? Anyone know of risk calculators that include these things?


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 2, 2017 08:59PM lily2 wrote:

Notverybrave, I also had neoadjuvant chemotherapy TCHP and had a pcr. I am on herceptin and perjeta for the remainder of the year. I am starting radiation treatments next week for 5 weeks.I don't believe I will have any scans or tumor marker tests either unless I have ongoing symptoms of something like dizziness,pain etc.I am not on Tamoxifen because I'm hormone negative so I can't help ya there but I see alot of hormone positive women receiving it on this site.I'm not a number or stat girl but I do know from what ive been told that having a pcr is very encouraging.I was very chemosensitive right off the bat nothing could be felt after my first treatment so that's enough for me to know that chemo kick the shit out of my tumor and then some so I don't need stats .I'm throwing everything at this crap that I can so if i did have a reoccurence god forbid. i wouldn't kick myself in the ass for not doing so.

Dx 2/27/2017, IDC, Right, 4cm, Stage IIIA, Grade 2, 0/2 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 3/21/2017 Herceptin (trastuzumab) Chemotherapy 3/22/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/31/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy
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Sep 3, 2017 08:01AM NotVeryBrave wrote:

Thanks for chiming in. I guess I just wish that there was a stopping point. It's hard to move on.

I have a new full time job that's freaking me out because it's so much stress. I'm still uncomfortable on a daily basis with my reconstructed breasts. My hair is taking forever to get any longer - although I'm glad it came back. I feel like I've aged at least several years through this crap.

I don't want to skip Tamoxifen if it's really needed. I'm just not sure that it is. I'll never be able to say that there is no risk of recurrence, but - with no cancer at time of surgery and a BMX - it seems more likely a possibility.


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 4, 2017 12:32PM larajv wrote:

I too was wondering about reoccurrence of HER2 positive cancer. (Me: er+ and HER2 +). What prevents the remaining normal HER2 cells from mutating and causing cancer? What are the chances that the other breast will develop cancer?

Dx 8/10/2017, IDC, Right, 3cm, Stage IIB, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 9/6/2017 AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Sep 4, 2017 05:10PM NotVeryBrave wrote:

My understanding is that all cells have HER2 markers - cancerous HER2 cells have an over abundance of them which causes them to grow without control.

Generally the risk of cancer in the other breast is very low for most types of tumors. I opted for BMX partly because they were "watching" areas on the other side. In my case, I was also able to avoid radiation by choosing MX.


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2017 09:04AM Tinyfrog wrote:

Hi NotVeryBrave - I just sent you a private message before I saw this post of yours, answering some of the questions I had already written you.
What is your ER+ percentage? Mine was 96%, and the surgeon I had a 2nd opinion with, said good - when she saw it, which confused me. I am led to believe that when your ER is really high and so responsive to estrogen, that when you take anti-hormone, they can essentially starve any cancer cells of what it uses to grow. The higher the percentage, the more influence it will have on those ER receptors. It's the same reason behind triple negative being hard to treat in that they can't starve it with anti-hormone, or use targeted therapy like herceptin. I had an anti-hormone consult with the Director of Pharmacology that went in the opposite way of your consult. He single handedly recommended that I not taking anti-hormone therapy because of SE, even though on UK Predict anti-hormone therapy increases my DFS by 8% - almost as much as the chemo/herceptin. That pissed me off because my preference is to be offered anything that will increase DFS, being that I'm in my 40's. Needless to say, I have completed 1 month of tamoxifen with absolutely no SE! Now there are women on this site, who have had bad SE on tamoxifen, and you won't know if it's going to happen to you until you try it. For me, it's such an easy thing to to take a pill for that much benefit. I'm taking all of these other more expensive multivitamins every day, and who even knows if there's any benefit from that. Also, I did not have neuropathy until after radiation because I was told to stop vitamins/antioxidants during radiation. Once I started back on B12 shots and B complex, almost all neuropathy went immediately away.

Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 09:23AM Tinyfrog wrote:

Like you, I've constantly had adverse reactions to drugs, and it seems as though doctors think I'm always complaining, and when it comes to anesthesia/painkillers, that I'm some kind of addict since they never work. I got a Kailos genetic test, which included CYP2D6 (liver enzyme that metabolizes tamoxifen), and I am a poor/intermediate metabolizer for several different classes of drugs, which was very validating - to know that it's not me over reacting, it's that I am truly getting no effect on opoids, and getting over dosed (over 4 times the drug) on other drugs. I finally convinced my doctor to order a tamoxifen and metabolites test at the 2 month mark to make sure I'm getting a therapeutic level to make sure it's working. The good news is that you only need a certain low level of tamoxifen to be protected, and if you're on the lower end, then it's probably not increasing estrogen in the uterus as much, so that risk and others are minimal. By the way, the woman after me in radiation had a mastectomy and did not have radiation, chemo or take hormone therapy because she was told she didn't have to, and she had recurrence 4 years later. Not that it will happen to you, if you do the same, you did get a strong chemo regimen.

Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 10:19AM Tinyfrog wrote:

I have not seen a proper gynecologist in almost 20 years. I had not had a pap smear in over 3 years. I was expecting like you had mentioned to have a full exam to assess gynecological health by a specialist especially since my mom had uterine cancer at 57, the exact cancer that tamoxifen increases risk for. But my insurance only allowed for a pap smear by a nurse practitioner, the level of health practitioner I had been seeing this whole time and to whom this job has been down graded to at the primary care's office, which doesn't make me feel at all confident since my cancer went undiagnosed for 5 years - that should tell you something. I think the only thing my oncologist wanted before tamoxifen was a pap smear, and a yearly one while on tamoxifen. If your insurance allows, make an appt with an ob/gyn and get everything checked out. I don't think you'd even need an oncologist referral because reproductive health is preventative well being.


Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 10:30AM Tinyfrog wrote:

You said, "The ones I've seen include stats and chemo and surgery but make no distinction for response to chemo or type of surgery." It appears that you had neo-adjuvant chemo (prior to surgery)? And you were able to assess how the chemo was working based on how your tumor shrank in response to chemo? I had my tumor out first, and then got chemo. So, for most of us that had adjuvant chemo (after surgery) there is nothing for us to measure how effective the chemo is working. We just have to assume that if there were any cells or micro mets anywhere in the body that it was killed off by the chemo. We have no evidence of it. I would feel very confident in your position if you got measurable results. I have genetic results that say I have another rare defect where herceptin is less effective. I'm not even going to bring it up to my oncologist because she's probably had it up to here with my questions. Right now, if you're HER2 positive, you get herceptin and nothing else. (Although amazing you got perjeeta, as least you got 2 different chemos for HER2.) Cancer treatment isn't really personalized yet - they just treat based on your stage, and ER and HER2 - not on any more detailed genetic tumor data. That might change in 10-20 years.

Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 10:42AM Tinyfrog wrote:

You said, "There is no plan for surveillance for me - no scans, no blood marker tests, etc. Nothing beyond exams. I'll see my BS at the 6 month mark. I currently see my MO every 6 weeks while on Herceptin. " I saw my oncologist yesterday for a 1 month checkup for tamoxifen, and she told me my next follow up is in 4 months - and I'm on herceptin. So, you're seeing you MO 3x more than I am. Although, I'm doing fine on hercpetin, so I don't really have any reason to see her, unless something happens. It seems as though surveillance is all over the board when it comes to tumors. While waiting for radiation, the 4 ladies on either side of my appointment, all of who were stage 1 with no chemo, had gotten CT/PETs. They all had different doctors from mine - doctors who had been practicing for a long time. Up until a few years ago, everyone with breast cancer no matter what stage was getting harsh chemo and CT/PET scans. In the past 2-3 years, the guidelines completely turned around, and now they're trying to avoid giving early breast cancer patients either of these. My doctor is only 34, so she was trained on these new guidelines. Supposedly, there were too many false positives on CT/PET for early stage, that they felt is wasn't worth doing. Although, I did meet someone who was node negative and went from stage 1 to 4 after her CT/PET 8 years ago. For me, I wanted a CT/PET for a baseline because I had my lump for 5 years before it was taken out, and I've been exhausted for years to th point of not being able to work - and I'm wondering if the cancer is all behind it Plus, I have a borderline phyllodes too, and that can mets. There are people even with fibroadenomas or fibrocystic breast lumps, who are getting more tests and more surgery than I am. I am as frustrated as you are. So car, my oncologist is only ordering yearly mammos - big whoop, can't see anything with my dense breasts on mammos.

Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 10:46AM Tinyfrog wrote:

My feeling about your treatment based on mine is that you had really strong chemo and a mastectomy - so you've had aggressive treatment with surgery and chemo. The mastectomy is more than I would opt to do, but you should feel very confident with what you've done. I don't think you could have done anymore than what you did. It seems as though annual mammo and 6-12 month doctor visit is what the guidelines are saying, because that's what my MO is doing. I will be meeting my surgeon tomorrow to discuss the new path report, and she may order additional imaging because she didn't get wide margins for me.

Surgery 12/13/2016 Lumpectomy: Right Dx 12/16/2016, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 1/2/2017 Lymph node removal: Sentinel Chemotherapy 2/1/2017 Taxol (paclitaxel) Targeted Therapy 2/1/2017 Herceptin (trastuzumab)
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Sep 13, 2017 11:55AM NotVeryBrave wrote:

As you can see in my signature now - I did start taking Tamoxifen recently. My ER percentage was >90%. I've always heard that even low responders should at least attempt to take anti-hormonals. We hear about all the SE's on here, but there are plenty of women without SE's or at least minimal ones. So far so good for me.

I've joked with my oncology nurse before that I must be either complaining too much or not enough! Either they're so sick of hearing me that they just tone me out or I'm not being dramatic enough for them to pay attention. I've always got something going on it seems.

I can't believe that your insurance would not cover a GYN exam! That's covered without a copay by my insurance as a "well woman" preventative care visit. I did have an annual visit with mine last month and she confirmed that no US assessment is done before starting Tamoxifen. They only check things out beyond the bimanual annual exam if you start to have bleeding or something else "wrong" happens.

I got Perjeta as well as Herceptin because the guidelines recommend it for tumors >2cm - which mine was. I know that some people are getting the rest of the year with both, but that seems to be somewhat controversial. It's super expensive and I'm not sure that it's been shown to yield a greater response adjuvantly than just Herceptin. I had an excellent response and couldn't feel the lump after the first round of chemo. Mammo and MRI after treatment and before surgery showed NO cancer! So that is very reassuring, but I still wish the models allowed for those differences.

With a BMX - I no longer get mammo's done. It seems like it will just be an exam by my BS every 6 months to begin with. I'd feel more confident by getting an MRI and am planning to discuss that with her at the 6 month visit. My MO doesn't do tumor marker blood tests or scans. I'm okay with not getting all those scans. I don't want the radiation and could use less anxiety as well. That said - if I start having symptoms of something weird going on, they'll be hearing from me.


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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