Anyone had cancer return while taking hormone therapy meds?

Posted by mchler73 @mchler73, Jul 14 2:02pm

Has anyone had their BC return even though they are taking Tamoxifen or an A1?

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@mssewest

Unfortunately yes. I had a double mastectomy in 2012 after having chemo. Was put on Tamoxifen 7.5 years. After I reached menopause my Oncologist switched me to Anastrozole and was on it for 6 months. I had back pain, discovered a painful lump in my clavicle shoulder area. PET scan later discovered breast cancer was found in my sternum, liver, bones, spine, abdomen and lymph nodes. A liver biopsy confirmed stage 4 ER+ Her2+ breast cancer had returned and spread in 2022. Did 6 Taxotere, Herceptin & Perjeta chemo infusions in 2022. Had slight progression and was switched to Enhertu Feb 2023. Completed 7 infusions but heart function declined and Enhertu was stopped. Scans showed stable from late 2023 and as recent as Feb 2024. I had a seizure in March 2024 and MRI showed I now have Mets to the brain and will be doing radiation to the brain next week.

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Thank you for sharing your story. I pray that God gives you strength to get through this. Please come back and share your journey. Hugs.

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@lautwell

I’m happy to answer any questions if it helps you. The deep itching was the same breast but further center than the lump under my arm. My nipple was also itchy. At the time, I didn’t connect it with breast cancer, but in hindsight I believe those were my cues. So many other things went ‘upside down’ in my life at that point, it’s kind of a blur, but yes…I’m quite certain we did some kind of biopsy because I clearly remember the surgeon telling me we caught it at stage 0 (which I didn’t even know existed). Later I had a sentinel node biopsy done…and then the bilateral mastectomies. Correct…no radiation (or chemo) this time…they said my skin/tissue was already ‘toast’. Mentally, intentionally fight against fear…but I do think your itching alone is something you need to get checked out. Sending you ((hugs)) of encouragement! 🩷

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I know my comment may sound silly and you may not know the answer but I'm going to ask anyway. I had IDC in my right nipple area which was not caught by mammogram, ultrasound and biopsy. My Dr knew something wasn't right, so she conducted a punch biopsy which showed cancer. I had partial mastectomy with removal of two lymph nodes which revealed I had very small amounts of cancer cells in them. I am now experiencing itching in both underarms which causes redness. I went to a dermatologist, and they didn't seem too concerned but they don't know my background. I tried to explain to them, but they didn't take time to listen. I am scheduled for mammogram and ultrasound in September. Do you think this could be related to BC? BTW I was ER/PR+. Thank you, Traci

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@traci999

I know my comment may sound silly and you may not know the answer but I'm going to ask anyway. I had IDC in my right nipple area which was not caught by mammogram, ultrasound and biopsy. My Dr knew something wasn't right, so she conducted a punch biopsy which showed cancer. I had partial mastectomy with removal of two lymph nodes which revealed I had very small amounts of cancer cells in them. I am now experiencing itching in both underarms which causes redness. I went to a dermatologist, and they didn't seem too concerned but they don't know my background. I tried to explain to them, but they didn't take time to listen. I am scheduled for mammogram and ultrasound in September. Do you think this could be related to BC? BTW I was ER/PR+. Thank you, Traci

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No question is silly. Based on my own experience with medical caregivers, I would encourage you to be persistent asking your question until you have peace of mind with their answers. Four doctors (following me for bronchitis) told me my lump (first round) was ‘probably nothing’ and I should just watch it. Keep asking until you’re satisfied you’ve been heard.

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@lautwell

No question is silly. Based on my own experience with medical caregivers, I would encourage you to be persistent asking your question until you have peace of mind with their answers. Four doctors (following me for bronchitis) told me my lump (first round) was ‘probably nothing’ and I should just watch it. Keep asking until you’re satisfied you’ve been heard.

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Thank you so much for your response. I have messaged my oncologist today and I am awaiting his response. Many thanks & prayers for you...

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@anjalima

GREAT NEWS!

PET was absolutely clean including nodes. Got results in a record 6 hours.

It’s 2.5 years since single mastectomy for IDC ER/PR+, HER2-, on Anastrozole basically since then.

This 4mm showed up 8 days ago , observed by me. A biopsy reveals ER + PR- ( HER2 not in yet) presumed to be - as KI is 3% ) which would support a negative but no guarantee).

It’s in the location of the original tumor so presumably a rogue cell that got away and just under the skin.

Plan presuming HER2- : I guess it’s a lumpectomy on a mastectomy? Switch AI to Examestane and radiation under consideration.

I’m so relieved that this is a local recurrence.

This was not picked up on MRI in February.

Please SELF EXAM!

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Hi! @anjalima

Great job on picking up that running away rogue cancerous cell that is hiding under the skin! Wow! You are better than the MRI machine! Thanks for sharing your success story to show us the way.

May I ask: why do you plan to switch from Anastrozole to Exemestane? Is Exemestane more effective or with less side effects?

Best wishes on your journey ahead with speedy and full recovery!

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@lifetraveler

Hi! @anjalima

Great job on picking up that running away rogue cancerous cell that is hiding under the skin! Wow! You are better than the MRI machine! Thanks for sharing your success story to show us the way.

May I ask: why do you plan to switch from Anastrozole to Exemestane? Is Exemestane more effective or with less side effects?

Best wishes on your journey ahead with speedy and full recovery!

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Hi Lifetraveler,

I also travel extensively in my life and this “sneaky b..ch” ( as my daughter just named it) caused me to just cancel a trip to Tanzania.

So an excision is happening within 2 weeks… then the tumor board weighs in on tissue. It’s 4mm and KI 3% ( very very very slow proliferation; only 3% of the cells are dividing) The onco opined that since I had a recurrence on Anastrozole she would switch to Examestane which she identified as “stronger” and less side effects. I’m exceptionally ok with my mild side effects once on Name Brand Arimidix… I’m not excited about switching because I’m ok on this one ( but not if it’s deemed not effective for me) . But it may have stunted its ability to divide ( 3%) . So this question is on the table for discussion.

But unfortunately it looks like radiation is in the cards for me something I wanted to avoid thus choosing mastectomy initially ( although size of 2 tumors would have made for a weird lumpectomy.

Looking for some reactions to radiation. If you have had radiation maybe you could share your experience?

Best to you.

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@anjalima

Hi Lifetraveler,

I also travel extensively in my life and this “sneaky b..ch” ( as my daughter just named it) caused me to just cancel a trip to Tanzania.

So an excision is happening within 2 weeks… then the tumor board weighs in on tissue. It’s 4mm and KI 3% ( very very very slow proliferation; only 3% of the cells are dividing) The onco opined that since I had a recurrence on Anastrozole she would switch to Examestane which she identified as “stronger” and less side effects. I’m exceptionally ok with my mild side effects once on Name Brand Arimidix… I’m not excited about switching because I’m ok on this one ( but not if it’s deemed not effective for me) . But it may have stunted its ability to divide ( 3%) . So this question is on the table for discussion.

But unfortunately it looks like radiation is in the cards for me something I wanted to avoid thus choosing mastectomy initially ( although size of 2 tumors would have made for a weird lumpectomy.

Looking for some reactions to radiation. If you have had radiation maybe you could share your experience?

Best to you.

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Dear @anjalima:

I am so sorry that this sneaky rogue cancerous cell disrupted your life and caused you to cancel a trip to Tanzania:( But I am truly grateful that you caught it in time before it gets the chance to spread to other parts of the body! Thank God! And thank you for reminding us the importance of the self exam! We'll pray for your upcoming excision surgery to get rid of all the cancerous cells, and you'll be back to normal life - including more foreign trips - soon!

Thanks for answering my question regarding the plan to switch AI medications. I chose not to have any radiation treatments to avoid the potential long term side effects such as: AML and RIA; this is the reason that I stick with Anastrozole in spite of all its awful side effects. So I have no personal experiences with radiation treatments.

Our prayers will be with you during your upcoming surgery, my friend. Pray for a successful surgery and a speedy full recovery!

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@lifetraveler

Dear @anjalima:

I am so sorry that this sneaky rogue cancerous cell disrupted your life and caused you to cancel a trip to Tanzania:( But I am truly grateful that you caught it in time before it gets the chance to spread to other parts of the body! Thank God! And thank you for reminding us the importance of the self exam! We'll pray for your upcoming excision surgery to get rid of all the cancerous cells, and you'll be back to normal life - including more foreign trips - soon!

Thanks for answering my question regarding the plan to switch AI medications. I chose not to have any radiation treatments to avoid the potential long term side effects such as: AML and RIA; this is the reason that I stick with Anastrozole in spite of all its awful side effects. So I have no personal experiences with radiation treatments.

Our prayers will be with you during your upcoming surgery, my friend. Pray for a successful surgery and a speedy full recovery!

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Yes, I too wanted to avoid radiation! And I stick with AI as well. It appears there is no guarantee for any of our treatments.

Thank you for your well wishes. 🌸

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@anjalima

GREAT NEWS!

PET was absolutely clean including nodes. Got results in a record 6 hours.

It’s 2.5 years since single mastectomy for IDC ER/PR+, HER2-, on Anastrozole basically since then.

This 4mm showed up 8 days ago , observed by me. A biopsy reveals ER + PR- ( HER2 not in yet) presumed to be - as KI is 3% ) which would support a negative but no guarantee).

It’s in the location of the original tumor so presumably a rogue cell that got away and just under the skin.

Plan presuming HER2- : I guess it’s a lumpectomy on a mastectomy? Switch AI to Examestane and radiation under consideration.

I’m so relieved that this is a local recurrence.

This was not picked up on MRI in February.

Please SELF EXAM!

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I’m curious as to why your onco put you on Examestane when Anastrozole failed to prevent bc from recurrence? Aren’t they both working on the same assumption that reducing estrogen will kill rogue cancer cells? And yes, self exam is important. Thank you.

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@mchler73

@mir123
Hello,
I had my ultrasound. The doc could feel the lump but said she did not see anything concerning on the ultrasound. I am getting scheduled for an MRI to double check.

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I hope it is nothing.

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