TRIPLE POSITIVE GROUP
Comments
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It's up to your friend, really. I was 46 and had a big lump (5 cm.+), plus one compromised node. After chemo, my active cancer was gone, according to an MRI and a PET scan. So, I felt comfortable with just a lumpectomy. I also didn't want to do reconstruction at that time.
For some women, two lumpectomies on the same breast might not produce the ideal cosmetic result. My breasts are C-cups, so when I had my lumpectomy, it didn't really make the right breast much smaller. If your friend is A-cup or B-cup, two lumpectomies will have a much more significant impact.
The survival rate for lumpectomy and mastectomy is the same.
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thank you ElaineTherese for your reply. Interesting points ...I will let my friend know.
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Hello,
so I've recently been diagnosed with HER2+, HR+ „triple positive“ breast cancer (G3), no lymph nodes affected, no metastases - guess that makes me new member of our little club!
My doctors suggested neoadjuvant chemotherapy (Four triweekly sessions of what in Germany is called Epirubicin+Cyclophosphamide; followed by 12 weekly sessions of Paclitaxel, Trastuzumab and Pertzumab).
I had my second of the first four chemo sessions six days ago, and today was the first ultrasound checkup. The doctor unfortunately did not see a change in the tumor's size, but said that at least it seems as though holes are starting to appear on it (which to me sounded like something she'd say so that the patients who don't show the desired outcomedon't freak out 🙈).
I know it's hard to generalize these things, but since my doctor was obviously expecting more (she scheduled the next ultrasound in three weeks time instead of six weeks as originally planned!), I was just wondering how soon after your neoadjuvant chemo began your doctors started noticing a change in size. It would be if some of you could share their experiences on this thread. Thank you!
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Hi Pethead57!
I did the same regimen as you're doing, but I didn't do ultrasound check-ups during chemo. I had an MRI and PET scan before chemo, and an MRI and PET scan after chemo. The last two scans showed that all of my active cancer was gone. During chemo, we could see that something was happening to my cancer because it was close to my skin, and my oncologist would use a ruler (yes, a ruler) to measure what was visible.
Do not be discouraged by your first ultrasound check-up -- as your doctor implied, cancer doesn't necessarily shrink, but loses its mass as though it were swiss cheese. Also, the active cancer may be gone, but a scan may still show the tumor bed, suggesting that nothing changed. Only the pathology after surgery can say -- for sure -- what chemo did to your tumor. ((Hugs))
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Hi
For a lot of reasons I won't go into I've been seeing different doctors in different countries.
I had a lumpectomy a few weeks ago. One margin was not clear. I started herceptin but am now being encouraged to have a re excision which I want to do.
Is there any reason I cant have surgery while on herceptin? I have huge communcation problems with both surgeon and medical oncologist. And no, I can't go elsewhere.
I am supposed to have herceptin this week and surgery next. Is this normal?
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donaji - you can definitely have surgery while on Herceptin only as long as your blood counts are ok - I had several surgeries while on it, no problem. Most Her2+ patients who have either multi step reconstructiono or surgery afterneoadjuvent chemo undergo surgery while on Herceptin.
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Donaji - hang in there and feel free to bring your questions here. Several people on this thread have done lots of research and all of us have experiences to share.
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when do you guys start hormone therapy? I'm finishing radiation tomorrow and I haven't heard from my medical oncologist at all. I have thought this whole time that hormone therapy starts right after radiation but my mom said maybe it's after herceptin? I feel like you can do both at the same time? I'm also waiting to hear what is recommended. Just tamoxifen? Tamoxifen and ovarian suppression?
I will call soon but just figured I would hear from him around now.
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i started mine while on Kadcyla and Radiation. I think each doctor does it different. Some don't like to overlap too many treatments
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It might vary by oncologist. I started OS + AI after I'd recovered from surgery and before I began radiation. I took it through radiation, and yep, six years later, I'm still doing it. As of now, I'm on the seven year plan.
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Thanks. That's very helpful. Information makes me stronger!
So fortunate I have found this great supportive community!
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How long are most triple positive people here on hormonal therapy? I've been on tamoxifen for 8 years. But the NP told me that 7 years was in my treatment plan. So I'm taking a break for a month and then will see my MO to decide whether or not to stop permanently. (I would like to, but I'm afraid). I'd love to hear what other MO's are recommending as there doesn't seem to be much research about triple positives and hormonal therapy duration.
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Hi redcanoe, I started hormone therapy a couple of weeks after radiation, my MO wanted to wait a month or so, but I preferred to start asap.
momwriter, I got my ovaries removed and I am therefore taking an aromatase inhibitor instead of Tamo. They told me probably 10 years; I am 3 years into it and have a new MO, I expect she will review this recco once I hit 5 years but I am not there yet. We seem to have a similar diagnosis. Are you pre-menopausal? I was told by a couple oncos that for me, an aggressive approach to hit the hormonal component of the cancer made sense, and they supported the ooph + AI plan (but I had additional reasons to want the ooph, beyond breast cancer).
Congrats on having made it to almost 9 years post-surgery
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My MO has me on a seven year plan unless new research comes out showing that some other length of time is more efficacious. I was originally on the ten year plan, but a study (I forget which one) showed that there was no additional benefit after seven years. I am a little nervous about stopping, but my oncologist says that my cancer was more driven by the overexpression of the HER2 protein than by estrogen. Another option she has proposed is having my ovaries removed. Of course, my body will continue to make some estrogen, but it would be less than if I left my ovaries in.
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My MO used the BCI (Breast Cancer Index) test at the five year point on anti-hormonals to try to help determine if I should continue. This test required a sample of my original tumor to be sent to Biotheranostics for genomic testing. The test has both a predictive and prognostic result in that it tells you how well the drug is working on your specific tumor material, and how high your risk of recurrence is going forward. So the combinations of result could be low/low, high/high, high/low meaning high benefit, low risk, or low/high, meaning low benefit and high risk. I fell into that last category which represents about 10% of those who test and have a low benefit from the medication, but a high recurrence risk. For that reason my MO wanted me to continue letrozole beyond five years. At the 7.5 year point I did discontinue because I needed an invasive dental surgery and the maxillofacial surgeon wanted me off all drugs that could impact bone - this included both letrozole and Prolia. If not for this surgery I would have continued most likely to the 10 year point, as I was highly ER+ at 96% in addition to being Her2+, and my side effects were tolerable. I am at 10 years now, having been off anti-hormonals for just over a couple of years, and I also believe that there is some protective benefit from anti-hormonal drugs after stopping - for an unknown period of time. For many TP patients I think the BCI test may not be useful if you have had neoadjuvent treatment as this would impact your tumor material prior to testing. Even though I would have qualified for neoadjuvent treatment based on my tumor size and nodal status, Perjeta was not yet in use and the majority of Her2+ patients had surgery first, chemo adjuvent.
redcanoe - I did not have rads as I had mastectomy and ALND, but my MO advocated a very short break between treatments. I started letrozole several weeks after last chemo and while on Herceptin.
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redcanoe - my MO waited until I was done with rads to put me on anastrozole + zoladex.
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I started AI's about 6 weeks after I finished Taxol. Stopped at 3 years but I was over 70 when diagnosed. Two years later, I'm still very comfortable with that choice for me. I think if MO had pushed me to continue, I would have reconsidered but she was sort of "oh. OK." BS said last week was my last expected visit with her.
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I had neoadjuvant and my MO wants to do the BCI. My insurance rejected the claim because of the HER2+ aspect, apparently they only approve for HR+/HER-
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morrigan - when I had the BCI test done my insurance denied the claim as well, claiming the test was “experimental" as it was fairly new then. Biotheranostics had a department that appealed the claim and when it was denied again they did not charge me. I had asked for an Assignment of Benefits form from them, which they faxed me. I signed it and faxed it back and they agreed to accept whatever insurance paid - which ended up only being the cost of taking my tumor out of frozen storage and sending material to them. I suspected at the time that they were in the process of building their database so were pretty flexible about the reimbursement - I don't know if that is still the case. For those who are uninsured they have a patient assistance program, but for insurance denials they didn't penalize the patient.
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My onc says I would start hormone therapy after Herceptin/Perjeta is done.
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@SpecialK - yeah they called me and told me they would bill my insurance and if the insurance didn't pay there were options. I make too much for the free or $100 tier/price but they said there were options available.
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Hi, Everyone, this is my first post in this Triple Positive forum. I was diagnosed in March and just finished 6 cycles of TCHP last week. It was such a difficult experience for me. I had tons of symptoms (nausea was the worst and it was pretty constant), including rare ones like my eyes tearing uncontrollably the whole 18 weeks. My surgery date is 7/27 and the plan is for radiation and continued HP targeted therapy after that.
I’d love a sense from the group of what questions I should be asking and what decisions I should expect to make. I know that the pathology report will dictate if I need more chemo, but I don’t know what possible treatments are considered if I do need more chemo. And what are the symptoms I should expect? BTW, what is it like to only have the HP targeted therapy in terms of symptoms?
I really appreciate hearing your thoughts and wisdom. Thank you for your support
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jam - sorry that you had difficulty during the chemo plus targeted therapy portion of treatment, hoping things ease up a bit now that the chemo drugs are complete. The eyes tearing is not really rare and you may continue to experience it for a bit longer, it took time to subside for me - probably within the first four weeks PFC, but it finally did. I did continue to have a runny nose on Herceptin though and a low grade headache towards the end which was eased with Tylenol, both cleared when I was done. I felt immensely better after chemo was over - but it did take the better part of 6-8 weeks to feel normalized, but that was also slowed by another surgery. My first Herceptin only was run faster at 30 mins and I did experience pretty intense bone pain when I hadn't during chemo. I requested the infusion be slowed to 90 minutes as it was when I received chemo with it, and never had that issue again. There are others on this site who had that same experience, which is anecdotal but there are enough of us that had this happen that it is worth pursuing if it happens to you. I believe if there is residual disease at the time of surgery most are on Kadcyla. I did not have it as I was treated so long ago that it was not available, but others on this thread have and can advise. I also did not have rads as I had bi-lateral mastectomy and ALND, so I can't address any of those questions, but I am aware that with left sided rads you may want to discuss positioning/duration, etc. to avoid cardiac or pulmonary issues down the line. Do you happen to have a regularly scheduled MUGA or echo prior to rads to check heart function? Good luck!
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"I believe if there is residual disease at the time of surgery most are on Kadcyla."
Yes, Special K is right the new protocol is to go to Kadcyla for residual disease. I really don't know why MOs don't discuss this in advance. Seems like most people are caught off guard by it.
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Hey Jam!
Glad you are done with TCHP. My eyes watered like mad too!
When I had surgery, I had 2mm of residual cancer and was switched from Herceptin only to Kadcyla. It was very doable. He did discuss this option before my very first TCHP so I was aware and comforted that there was an answer for that residual cancer.
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My first herceptin only infusion was run for 30 minutes. That just didn't feel good--it was strange so they ran it at 60 minutes for the remainder. Looking back I wish that I had had a 90 minute infusion as I think I would have had more energy and just feeling better, although I didn't have horrible effects. I had my herceptin only before SpecialK was on the boards here--that is where I learned about the 90 minute infusion. SpecialK, you are a source of invaluable information and have been ever since you have been posting on this board. I'll add, don't let the chemo people take charge of how long your infusion runs.
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Hi, Special K, thank you so much for your detailed response! So glad to know what to expect over these next few months. I’m really better when I have knowledge, even if I don’t like what I hear. I’m sure I’ll be back here as things unfold with me. Take good care. -
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Hi, Morrigan-25, Thanks so much. It’s nice to know what could be next. My team keeps saying to take things one stage at a time, which I understand too, but it’s hard to not know what’s coming up. I just think my question underneath everything is will I have to endure something again that makes me feel as bad as the TCHP! I know no one can tell me that, but I’m just trying to generate either hope or radical acceptance.
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So glad to hear that the eyes tearing is fairly typical. It has driven me crazy! Any suggestions for ways to reduce it or deal with it? And does it go away after TCHP
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Hi, Cowgirl113, thanks for the heads up about the 90 minute Herceptin infusion! I’ll definitely ask them to slow it down.
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