2 tumors: HER2- and HER2 +
7 months in and yet another twist and turn with my cancer. Mastectomy done 4 weeks ago, doc ran HR/HER2 on the smaller of my tumors because he was trying to decide why I had littler response to chemo. (Originally ER+, PR+, HER2-). However, the smaller tumor hiding behind the much larger tumor is ER+, PR-, HER2+. My tumors don't show up well on any imaging and we learned the tumors were much larger than we had believed so we think the smaller of the two was never actually biopsied. So after 6 months of chemo and unknowingly ignoring my HER2+ tumor that I will start treating on the 4th with Herceptin and Perjeta every 3 weeks. I start radiation the 8th.
Anyone had two tumors at the same time with different HER2 statuses. Not sure if it matters but my 2 tumors were tethered together by cancer from the larger of the 2 tumors?
Thank yo
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I haven't had two different tumor types, but I did have IDC and DCIS in the same area - same biopsy sample. I wanted to comment regarding the HER2 positive one. Is there a reason why they aren't recommending chemo like Kadcyla for the HER2? Is it super small? I ask because I was told that the Herceptin regimen works better if it's combined with chemo. That's why some of us us get taxol then HP every three weeks or TCHP for 6 rounds. Perjeta is usually only added if it's 2cm and it's indicated for use with chemo for us HER2 positive patients. If they are classifying it as residual HER2, the standard of care in the US is Kadcyla unless it ended up being super small.
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Saw the problem on a June 26th, the following Monday the 28th I got a 3D Mammo and ultrasound, no one was concerned, I was biopsied July 6th, was diagnosed July 8th. Biopsy came back ER+, PR+, HER2- grade 3 stage 3, invasive and DCIS, the tumors were originally determined to be 5 cm (now they say probably was much larger), the DCIS originally determined to be 3 cm (again they now feel this was much larger). They didn’t find an axillary node involvement.
The Mammo only showed a small area of calcifications on a second look MRI that only only got done on the same day because I worked at the hospital and one of my good friends is a physician there that I listed as someone who was allowed to have full access to my records. She demanded the radiologist take a very close look because my entire bottom of my breast lifted flat then puckered in when I lifted my arm. Same day ultrasound barely shows the same small area of calcification picked up on the second look Mammo despite all of us feeling very large lumps in the same area. It was decided that it was just due to my very dense breasts. No axillary nodes were unusual.
I chose my surgeon who did my biopsy (stereotactic large-core breast biopsy) because it’s his specialty. He told me at the time he believed it was cancer so he was going to take many samples. My entire breast was bruised, the bottom all black/purple. All that digging and no cancer free tissue was identified. Although the pre chemo MRI only showed a 5cm and 3cm tumor. My chemo was delayed by 3 weeks due to insurance issues. During my pre chemo surgery visit just before starting chemo (the beginning of August) she felt a node. Same day ultrasound showed 1 large node. Biopsy was positive.
I did the 4 doses of dose dense red Devil then was supposed to do 12 doses of taxol. I had every symptom possible with both. Even tried to put me in the hospital the night of my first red Devil treatment and my doc couldn’t find a bed within our area due to the delta spike. By the second dose of taxol they had to reduce me to 80%, I was stopped at 8 doses due to chemo toxicity. My surgery was moved up. My Pre op MRI showed two 1cm tumors. Considering how aggressive they considered my cancer we were all relieved.
Then my mastectomy pathology held some surprises. The larger tumor was 6cm and the smaller tumor 3 cm.They now believed they were both much bigger. They could also tell how hidden the smaller tumor was and considering how big they were despite all that chemo and original and follow up sizes they decided to test the smaller tumor for its HR/HER2 status and it came back different, ER+/PR-/HER2+ also grade 3.
I had my double mastectomy 12/29, start Herceptin and Perjeta 2/4 (I was told my cancer is expected to come back so originally was supposed to take Arimidex for 10 years and also Verzenio to try to prevent Mets.) now no Verzenio and I’m told the Perjeta is also good for helping the cancer not to spread. I’ll do those for a year as well as the Arimidex still for 10 years. I also take a monthly injection to keep me in my chemo induced menopause until I’m healthy enough to have my ovaries out.
My onc did take my case to their on call tumor board the day the HER2+ came back. Only one recommended another chemo regimen and that was a sister to taxol it was decided because of my bodies reaction to both chemos and the severity of the chemo toxicity and the 6 month delay in any treatment to the HER2+ cancer that the Herceptin and Perjeta were my best bet.
We are sending all records to the Mayo Clinic for a second look. With my tumors being very elusive to all diagnostic imaging and my breast surgeon and oncologist do not agree on my long term prognosis I really just want to meet someone like me and hear their story. I’m “only 47”, I feel young, I have an 8 year old with Down syndrome and I really want to be sure I’ve done everything possible and left no stone unturned.
So this was so long. Didn’t know if the whole story would help find others like me. My vision is also crap since chemo so I apologize any typos.
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I think getting a second opinion is a good idea. My story is slightly different-I had one tumor plus a positive node. Both biopsies ER/PR+, Her2-. The residual cancer of the tumor at surgery, however, was ER/PR+, Her2+. The node tissue was still Her2-. So I had done all the chemo that you did-A.C./T- but my oncologist was quite emphatic that we needed to do more chemo to pair with the Herceptin. Their tumor board recommended Navelbine because it pairs well with Herceptin and has fewer side effects than some others. They also thought about Xeloda and Kadcyla. They did not use Perjeta because the node was Her2-.
Another thing to consider is Nerlynx after you finish Herceptin. It's a one-year pill regimen that is recommended for people that are triple positive and have a high risk of recurrence. There are some positive study results and it was just added to the NCCN guidelines as an adjuvant treatment. This is in addition to the hormone therapy.
Editing to add that I am 45 (43 at diagnosis) with two daughters, now 11 and 14. So I am with you on wanting to throw everything I can at this beast.
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