change in HER 2 twice since initial diagnosis

Mary0512

Hello,

I should start by thanking for all your contributions to this amazing place of worry-relief and huge support for all breast cancer patients.

I am curious if anybody has had this issue. My mom was diagnosed in 2019 with IDC stage 2 through a biopsy that showed HER-2 positive status. She was then treated with Herceptin and chemotherapy for several months before having a mastectomy. The biopsy report after the surgery showed an equivocal status of HER 2 and then it was confirmed by FISH that the status was HER 2 negative. In october 2020 she was diagnosed with bone mets after a PET CT and was treated with chemotherapy and Herceptin and Perjeta. In march 2021 she was diagnosed with liver mets by CT and she has been treated with two Kadcyla treatments. Her state is worse than ever, she had fever, chills and awful pain around the mid section for a month or two until one doctor prescribed her dexamethasone. Her TM are elevated and she finally had a liver biopsy, which showed HER 2 - negative. I saw that in the ESMO guides, one biopsy confirming HER 2 positive is enough for treating cancer with anti HER-2 therapies. Some doctors disagree and say that from now on she must switch to Ibrance. I am wondering if any of you has had this happened, is this result trustworthy after so many anti HER-2 therapies? Also she has multiple bone mets that are really painful, but they are manageable in comparison to the liver ones, that are covering her whole liver although for now these are not so large.

I am sorry for any errors but English is not my native language, I am wondering if this ever happened to anyone, if there is any chance for my mom?

helenlouise

Mary I am sorry your Mum is so unwell. My cancer morphed from HER - to +. This can happen. I believe you can also have tumours with different receptors at the same time. As for your mums treatment I cannot say. I do hope she gets some relief. Best wishes to you both,

Beesie

I know I'm not supposed to post in the Stage IV forum, but...

Mary, do you know the stage of your mother's initial diagnosis? You mention that she was diagnosed with DCIS, but DCIS is Stage 0 and non-invasive and is never treated with chemo and Herceptin (Herceptin is not even approved for DCIS). So I'm thinking her diagnosis must have included some DCIS along with invasive cancer - that's very common with about 80% of invasive cancers including a DCIS component. I wanted to clarify that because although this is the Stage IV forum, people of all stages do read here, and that includes some who are diagnosed with DCIS. A frequent comment on this discussion board is how so many patients with DCIS progress to Stage IV, but in situations like this, it's important to note that while the initial diagnosis included DCIS, the diagnosis could not have been pure DCIS, i.e. DCIS Stage 0.

Mary0512

Hi Bessie,

You are completely right, I'm still new to this and in my language the letters from the abbreviations are the complete opposite, I've now edited the post.

Thank you for your promot answers, both you and helenlouise.

Moderators

Hi Mary,

We're so sorry to hear about your mom. We thought maybe you might be interested in this Research News article we just posted:

Some Breast Cancers May Switch HER2 Status if They Come Back
May 18, 2021
If breast cancer comes back — called recurrence by doctors — the HER2 status of the recurrent cancer may change from HER2-positive or HER2-negative to a new classification of HER2 status, called HER2-low. Read more...

We hope this helps!

--The Mods

Anonymous

MODS - I just read this article. I think this might be a typo:

Quote - “They have IHC scores of 1+ or 2+ or a FISH score of negative. About half of breast cancers classified as HER2-negative have low HER2 expression.“

Shouldn't that be - “They have IHC scores of 1+ or 2+ AND a FISH score of negative." Since a low IHC score means the patient ALSO gets the FISH test

moth

Mary, yes, as has been posted above cancers can change and lose markers (or more rarely, gain them). Treatment changes are then necessary. You may want to have a look on the liver mets and bone mets threads as well for extra information. For the bone mets pain, has palliative radiation been explored? A few radiation treatments to areas causing pain often reduces or eliminates pain.

If I'm understanding you correctly, she has lots of little mets in the liver, rather than one or a few big tumors. That's often called "diffuse mets" and does need treatment with systemic therapy (such as Ibrance or later chemo). If there's a single or a few tumors, sometimes they can be treated with radiation or other local treatments, but lots of little ones need the systemic treatment.

liver mets thread: https://community.breastcancer.org/forum/8/topics/...

bone mets thread: https://community.breastcancer.org/forum/8/topics/...

Hang in there - sometimes you need to keep trying treatments until you find one that works and doesn't cause too many awful side effects. But once it starts working and mets start shrinking, you can get some breathing room and stability

Moderators

Hi Olma, we took your question to our editorial team. This was their response:

"The reason why "or" made sense was because although doctors tend to order an IHC test first, it doesn't necessarily mean that they do so always -- so it's possible for someone to only get a FISH test, however rare. An IHC score of 1+ wouldn't necessarily trigger a FISH test, only a score of 2+, which is considered borderline. What is written is how researchers define HER2 low."

We hope this makes sense and thanks for your question!

--The Mods

Anonymous

Thank you very much for that explanation!

Mary0512

Thank you so much for the reassurance, moth. Yes, she made an appointment already to start radiation. I am really hopeful, it's just that it can be really confusing when doctors have such different opinions. I am trying too convince my mom to switch teams because the previous one did not even answer her when she was feeling so unwell and to start Ibrance and hormone inhibitor as soon as possible and hopefully this treatment will make a difference!