Heterogeneous Metastases?: I was first... - SHARE Metastatic ...

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Heterogeneous Metastases?

Faith999 profile image
22 Replies

I was first diagnosed Stage3 in Aug. 2014, ER+PR+Her2-. Found metastases in bones and lymph nodes in Dec. 2023, bioposied one node, same biomarkers. I was put on Tamoxifen which shrank many lesions, except for one. After that, I went through Tamoxifen, Letrozole + Kisqali, Faslodex + Kisqali, have scan every 3 months. Every time, there are lesions shrinking and others growing. I start to think the metastases are heterogenous -- the responding lesions are ER+PR+Her2-, the non-responding lesions might be Her2+ or triple negative. I did a quick online research, apparently heterogenous metastases is a well-documented, common phenomenon. So, my questions is: has anyone had similar experience? what's the treatment strategy for those patients who have different biomarkers from different sites?

I received my PET scan result today, seeing my onc tomorrow. Praying for strength and guidance from God...

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Faith999
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22 Replies
Faith999 profile image
Faith999

Sorry about a typo: diagnosed metastases in Dec. 2022

Hopeful4Cure profile image
Hopeful4Cure

Hang in there Faith T9 and be strong. I remember a response to one of my posts ans she also had 2 different dx's. I am sure you will receive replies from others in the same situation. Blessings

Faith999 profile image
Faith999 in reply toHopeful4Cure

Thank you for your encouraging words!

Best521 profile image
Best521

Excellent question and the same one I asked my own Oncologist recently. My oncologist confirmed yes there can simultaneously be two subtypes of breast cancer present together. This is why, due to the heterogeneity of breast cancer, it can be difficult to treat. Thankfully there are new treatments, such as the Antibody Drug Conjugates, that are simultaneously effective against both Triple Negative and HR+ breast cancers. The ADC , Trodelvy/Sacituzamab Govitican, has been a very effective treatment for me; fingers crossed it will continue to be. Do I have two types of breast cancer? Impossible to know right now without a biopsy of each tumor which is not practical. While all treatments come with side effects, the good news is I am on a treatment that is controlling the cancer. I am confident more new treatments are on the way. It will be interesting to learn what your Oncologists says.

Faith999 profile image
Faith999 in reply toBest521

Thanks for the info about Trodelvy! I have not heard about it before. Happy for you that the medication is controlling tumor! Is it gentler than chemo in terms of side effects?

Best521 profile image
Best521 in reply toFaith999

Trodelvy is my first experience with chemo. It was a rough start, however my dose has been lowered and the infusion is given slowly over two hours. Low and slow has helped with side effects.

Faith999 profile image
Faith999 in reply toBest521

Glad to know "low and slow" has helped with side effects. Praying you'll continue to do well on this combo.

HelenWi profile image
HelenWi

Dear Faith,

I’ve been on Piqray for a year and my bone mets are considered stable .. some shrink and some grow. After one scan with a couple new mets, the new ones were radiated. Then I was stable again. My onco didn’t say anything about heterogeneous; rather, the drug is working well enough to keep things under control. So I’m used to accepting that stable is ok. I just had a scan with one met’s SUV having doubled but the rest are stable. I’m wondering if he’ll decide to radiate that one. The goal is to stay as long as possible on one therapy.

Question: did you get the date wrong in your post? You said you were diagnosed in 2023 but then you mention many different treatments.

Hope your visit with onc goes well. Best to you,

Helen

Faith999 profile image
Faith999 in reply toHelenWi

You are right. I made a typo. The MBC diagnosis was given in Dec. 2022 (not 2023). Since then none of the hormone treatment targeted at HR+ status can be clearly declared successful. Hence the restlessness. Thanks for you reply and wishes!

Lilywallytootsie profile image
Lilywallytootsie

Praying for strength and guidance from God for our friend Faith. Lord, you know that Faith needs to feel your love and presence right now. She needs to know that she has friends and family praying for her. Please let her feel the love. Amen. Blessings, Hannah

Faith999 profile image
Faith999 in reply toLilywallytootsie

I really need and appreciate your prayer! Thank you my dear sister!

RLN-overcomer profile image
RLN-overcomer in reply toLilywallytootsie

Sister/Warrior, and yesss Over-comer😇 Faith I pray our healer LORD/JESUS will restore you to optimal health. I know as your name connotates you will continue to keep the Faith.🙏😇

Faith999 profile image
Faith999 in reply toRLN-overcomer

I love your ID - Overcomer! Our spirit is victorious and triumphant because our LORD is victorious and triumphant. Thank you for your prayer!

Ycats277 profile image
Ycats277

hi , this is Stacy . In 2015 I had a double mastectomy because of ER PR+ HR~. I had micro met in one lymph . I had six rounds of chemotherapy. I forgot what it was called carboplatin or something. I was on letrozole and it spread by 2017 my ribs had Mets . I was put on Verzenio pills twice daily , Xgeva, and faslodex injections monthly . My PET scan got better and better until in 2019. There was no sign except for scar tissue of where the cancer was. And since 2019, I’ve been in remission on that mixture of medication. So it’s my fifth year in my mission and still on that same group of medicines I just had my pet scan results a week ago and I am Clean and clear . I’m wishing you the best of luck write me anytime I’d like to hear what happens and if you could switch medication, maybe❤️🥰🩷

Faith999 profile image
Faith999 in reply toYcats277

Wow! That's wonderful! Hope you'll remain clean and clear for a long long time.

Kcap430 profile image
Kcap430

Hi Faith

My first mets were in my bones and biopsied to be ER/PR+ HER2 - I was stable with little to no activity on Letrozole and Ibrance for 2 years. Last October my scans showed a single 2cm lesion on my liver. Biopsy showed it to be ER/PR + HER2 +. My doctor explained that MBC is not like a loaf of bread where all the slices are cut the same. She told me you can certainly have different types at the same time and they treat according to which is showing to be more active/aggressive. I am now on Taxol with Herceptin and Perjeta . My bone Mets are still not showing any activity and my liver lesion has shrunk in half

Hoping this helps in some way.

May your faith keep your mind and heart open and your soul at peace I lean into it every day ❤️🙏🏻❤️

Faith999 profile image
Faith999 in reply toKcap430

Congrats! So happy for you that the new combo is working well. Very helpful info. I do ponder the need to biopsy one of the lesions that are growing. I might get a second opinion on that.

CTGirl1962 profile image
CTGirl1962

I haven’t heard of that phenomenon, but I’m curious now. I’m praying for you and I hope everything works out with your treatment. It gets crazy sometimes. 🙏🏻🙏🏻🙏🏻🙏🏻

Everything is in God’s hands.

Faith999 profile image
Faith999 in reply toCTGirl1962

Yes, we are in God's hands and His love sustains us!

Faith999 profile image
Faith999

Dear Sister Warriors, thanks for your kind words, prayers and helpful advice! I'm here to give you an update. My oncologist suggested Afinitor+Exemestane as next course of treatment. The response rate to this combo is around 10%. My oncologist said that my situation, while frustrating, is not urgent. If this combo doesn't work, she will move on to chemo, with Xelodo as the first choice.

I thought about seeking second opinion and getting a biopsy. But then if the biopsy confirmed heterogeneity, the likely treatment will be chemo.

After lots of prayers, I've decided to try alternative treatment for 3 months, while still being monitored by my oncologist. During this period, I'll still be taking Tamoxifen, but this time increase the dose from 20mg to 40mg.

Thanks again for your love!!!

Kcap430 profile image
Kcap430

Prayers going up for the best outcome. You are being closely monitored which is key. So glad you are doing what feels right for yourself. Please keep us posted 💗🙏🏻💗

Faith999 profile image
Faith999 in reply toKcap430

Thank you Kcap!

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