Does ER+ HER2- mutate to triple negative?

[HbbM]

I’m new here and loving the kind support in all of your comments. So thankful for groups like this. I’m not even sure how to ask this question so hopefully you understand what I mean but if someone has been diagnosed with ER+ HER2- do they need to be concerned it could mutate to triple negative?

[stardust1965]

Hi NbbM and welcome to this group.

We can drive ourselves crazy with the what-ifs of this disease so I have learnt to live in the moment and from one hospital appointment to the next (and I am a frequent flyer atm)! You should not be too concerned about your cancer mutating as I think that it is uncommon.

Having said that I have a second primary that is different to my first Er+ HER2- BC. It is triple negative and grew aggressively while I was on Capecitabine. I had a total mastectomy in August and am currently having radiotherapy for this. I was initially diagnosed occult denovo in 2018 with my first BC so this is all new to me.

My situation is unusual so I had genetic testing done for the BRCA mutation etc which showed no mutations. It took a couple of months for the results which arrived on Friday. I tried not to worry about what the results would be as worrying only takes away the joy and peace of today. I try to deal with one day at a time and that works for me and keeps anxiety at bay - mostly.

[8576 in reply to stardust1965]

You are right in saying we can drive ourselves crazy with what if's. So why do that. Just listen to your oncologist and/or second opinion. If it is happening for real, it will be posted on the John Hopkins or your national Cancer centre. Save yourself time for other things.

Cheers, June S.

[stardust1965 in reply to 8576]

Hi June, I’m not sure if you were replying to me or to HbbM. Wise words from you as ever. Here in the U.K. we don’t have access to any on-line portal and usually have to wait until the next oncology appointment for scan results. In my case it will be a three week wait since my scan on 21 October! I had the same wait after my biopsy to discover I had a new TNBC! It does mess with my head but I’ve learnt to be very patient as a patient! Vicki

[Ursula_I in reply to stardust1965]

yes, UK here too; my oncologist was astonished to hear that people in the US access their scan results online. He thought it a bad idea! 'What, before the appointment?' he asked, horrified.

[Best521 in reply to Ursula_I]

The differences in the care process are so interesting. I am about to leave to have a Pet Scan done this morning. I will probably have the results tonight on my Patient Portal. I don’t get scanxiety, however I think it would be very difficult for me to wait. Having the information ahead helps to have a more productive discussion at the doctor appointment. I have time to think it over and form good questions. I think of my scans in the same way I think of my blood tests. The scan is a tool that will help me monitor my disease and adjust treatment if needed. It is the not knowing I would find anxiety producing.

[AvidBooklover in reply to stardust1965]

You have the best advice...stay in the moment!

[HbbM in reply to stardust1965]

thank you so much for the reminder! I needed it!

[8576]

Forgot to say you are right, in finding this site and the support and info it gives. I know I have found it to be great.

Cheers, June S.

[Ursula_I]

hello

Just to say I don't know, but in my case my original primary cancer mutated from ER+ Her2+, to ER- Her2+ when it metastasised. (That was why the treatment I was on, Exemestane, no longer worked to contain it).

Has a biopsy been suggested to check?

Try not to worry.

Lucy x

[HbbM in reply to Ursula_I]

no biopsy has been recommended. Trying not to worry and live in the moment. It’s harder some days than others.

[stardust1965 in reply to Ursula_I]

Lucy, how did you learn of the mutation? Did you have a bone biopsy? Was it painful? I don’t know if my original has mutated but my treatments haven’t been working for nearly a year until I landed on Capecitabine, but that’s when my second primary appeared. Vicki

[Ursula_I in reply to stardust1965]

Hi Vicky

When MBC was discovered - in multiple places - they said they couldn't assume it was the same as before so I had a liver biopsy which was a really horrible experience. (Ended up being blue-lighted back to hospital... another story...). But it was worth it, I guess, as it gave the info needed about the cancer (and explained why the exemestane was no longer holding it at bay).

Afterwards I did wonder why they couldn't biopsy another of the affected areas rather than the liver which was in a dreadful state. But I just went with what they recommended.

All the best to you

Lucy x

[Granny333 in reply to Ursula_I]

my experience with liver biopsy was no fun either but it was extremely necessary to help in diagnosis. Don’t want to go there again

[mariootsi]

So true!

[Best521]

Hi HbbM, My cancer mutated from triple negative to ER+ HER2- Thanks to Genomic Testing and my very wise Oncologist who ordered the test, I was able to receive the correct targeted therapy. Had the genomic test not been done and had it been assumed my cancer had not mutated, I would have received the wrong treatment. My oncologist told me we will do another Genomic Test to see if it has mutated again. He explained oncologists are learning breast cancer mutates. It is concerning if the treatment is not working because the cancer has mutated but the mutation was not caught. Especially if another effective treatment is available. Maybe your cancer will mutate maybe it won’t, however if it does then the treatment plan will change. There are many new life prolonging treatments for triple negative available if your cancer does mutate. Never be afraid to ask questions or review what is happening with your treatment. Asking questions and looking back is how science moves forward. It is how we all move forward. Best of luck to you on your journey. Know there are a lot of successful life prolonging treatments available at each and every turn.

[HbbM in reply to Best521]

thank you so much for this encouraging reply!

[Granny333 in reply to Best521]

I am having this same testing done and waiting on results.

[Best521 in reply to Granny333]

Wishing you good luck and great results with lots of treatment opportunities.

[TammyCross]

As others have said, the time to look for a mutation is when a treatment that worked stopped working.

I had a liquid biopsy (better than liver biopsy as described by Ursula!) when that happened to me. They did FoundationOne, which I understand can be expensive thus hard to get, but I paid nothing. It showed no mutations at all (I was wondering if it had mutated to ESR1).

As I understand it, though, you have no reason to think your mbc has mutated.

[Best521 in reply to TammyCross]

My Genomic Test was the liquid biopsy through Foundation One as well. My oncologist also ordered a liver biopsy. Both the liver biopsy and the liquid biopsy confirmed the mutation from Triple Negative to ER+ HER2-. The liquid biopsy also picked up on other proteins that were present or not present such as PDL1. No Triple Negative and No PDL1 so no immunotherapy at this time. The tests were done last year. At the time my oncologist said we will do a liquid biopsy test again in a couple of years. Having the facts is so important in knowing what to treat and how to treat. My oncologist said he needs to know exactly what type of cancer he has. I agree 😊.

[TammyCross in reply to Best521]

So for the liver the liquid biopsy is insufficient?

[Best521 in reply to TammyCross]

Back from the Doctor. Yep he will do both tissue and liquid biopsies as needed. Tissue is overall more reliable however they both have their pluses and minuses. Scan looked great. SUV continues to drop. We will keep doing what we are doing until we need to pivot. When we do there are plenty of tools in the tool box ☺️ . It was one year ago that my MBC journey started and I am in a place I didn’t think was possible at the outset. Busy Living a big happy life and loving it 🥰

[Best521]

He ordered both last year at the start of my recurrence diagnosis. He wanted to confirm it was breast cancer he was dealing with and not another cancer. He also wanted to confirm if breast cancer then what kind, was it the same, had it mutated, how fast was it growing etc. thus the liver biopsy. If I had still been Triple Negative we were hoping to find the PdL1 protein through the liquid biopsy. If the PdL1 protein, which is found in a percentage of Triple Negative breast cancers, was there we could have started immunotherapy. When it came back ER+ 30% HER2- we set off on another treatment plan;Ibrance and Letrozole which as of now is working beautifully with minor side effects. Overall SUV on scans is down. He did say we would test again for mutations. I took him to mean a liver biopsy and a liquid biopsy. I will ask him at our next visit.