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.
It’s a question I want an answer to as well. For now I know it’s an AI but has a different approach than Anastrozole and Letrozole which are referred to as non steroidal. I’m learning more about it when I meet onco again.
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.
I am really curious on this matter, so I asked my medical Oncologist regarding the pros and cons of taking these 2 AIs; and was told that both Anastrozole and Exemestane are equally effective AIs, and have the same incidence of side effects. According to him: they just have different structures; for that reason if cancer becomes resistant to one it can still respond to another.
I am still curious to know the explanation of Anjalima's Oncologist when seeing her in person for discussion of future treatment plan. Thanks in advance for keeping us updated!
@anjalima
Hello,
I can’t get in for my MRI until August 30th. I’m nervous that since the ultrasound couldn’t see the palpable lump, what if the MRI shows nothing, as well, and they say it’s fine, even though we can clearly feel it.
It scares me because the only reason they found my rare invasive cancer was because I felt a lump. The initial needle biopsy came back as ADH, so they said I should have it removed. It ended up being “grade 2, extensive” DCIS and during the lumpectomy, the surgeon noticed an area that “looked strange” so she removed that also and that was what came back as the rare cancer. It hadn’t been seen on mammo or ultrasound.
I am hoping the MRI can tell 100% that it’s scar tissue or something benign but what if that doesn’t happen? What should I ask my next steps to be so that I feel confident nothing further is needed?
@anjalima
Hello,
I can’t get in for my MRI until August 30th. I’m nervous that since the ultrasound couldn’t see the palpable lump, what if the MRI shows nothing, as well, and they say it’s fine, even though we can clearly feel it.
It scares me because the only reason they found my rare invasive cancer was because I felt a lump. The initial needle biopsy came back as ADH, so they said I should have it removed. It ended up being “grade 2, extensive” DCIS and during the lumpectomy, the surgeon noticed an area that “looked strange” so she removed that also and that was what came back as the rare cancer. It hadn’t been seen on mammo or ultrasound.
I am hoping the MRI can tell 100% that it’s scar tissue or something benign but what if that doesn’t happen? What should I ask my next steps to be so that I feel confident nothing further is needed?
My heart goes out to you. We’ve all experienced anxiety in this journey and it’s probably the worst part. I found walking and practicing breathing help calm me down. If the MRI finds nothing, would you consider mastectomy for your peace of mind? I’m a brca and planning to have DMX next year. Hugs.
My heart goes out to you. We’ve all experienced anxiety in this journey and it’s probably the worst part. I found walking and practicing breathing help calm me down. If the MRI finds nothing, would you consider mastectomy for your peace of mind? I’m a brca and planning to have DMX next year. Hugs.
@myoga
I have actually been thinking about a mastectomy but no one in my family has ever had BC and my genetic testing came back negative, so idk if a mastectomy would even be recommended. Especially if they don’t find anything on the MRI.
And to make matters worse, my oncologist, who I trusted completely, just moved to another state so now I have to find someone new.
Even though the doctor who did the ultrasound could feel the lump, she was so quick to say, “good news, it’s benign” because she couldn’t see it on the screen and she “didn’t see anything concerning.” She didn’t even suggest getting an MRI. I told my Rad Onc about the situation and asked if she would order one.
I have learned to listen to my gut and advocate for myself but I feel sometimes things get missed and then people don’t find out it’s something serious until it’s too late.
@anjalima
Hello,
I can’t get in for my MRI until August 30th. I’m nervous that since the ultrasound couldn’t see the palpable lump, what if the MRI shows nothing, as well, and they say it’s fine, even though we can clearly feel it.
It scares me because the only reason they found my rare invasive cancer was because I felt a lump. The initial needle biopsy came back as ADH, so they said I should have it removed. It ended up being “grade 2, extensive” DCIS and during the lumpectomy, the surgeon noticed an area that “looked strange” so she removed that also and that was what came back as the rare cancer. It hadn’t been seen on mammo or ultrasound.
I am hoping the MRI can tell 100% that it’s scar tissue or something benign but what if that doesn’t happen? What should I ask my next steps to be so that I feel confident nothing further is needed?
@mchler73
It’s all so frustrating. So sorry that you’re dealing with this!
One thing you might ask about is the differential diagnosis. If the consideration is that it might be scar, or it could be ADH, or it could be the rare cancer (missed in previous scans), or it could be DCIS - there are different features they consider to eliminate options. It might help to know what they’re basing their decision on, so you feel assured that they really are identifying what it is.
Have them talk through the features of what the MRI is showing differentiating it from what it is/not:
1) Your rare cancer had these features that would be visible in an MRI. What we’re seeing now is ___
Is it same or different, how?
2) DCIS, or ADH, has what features visible during an MRI? What we’re see now is ___
It is same or different, how?
3) A palpable, but not visible, non cancerous lump is expected to have these features seen on a MRI.
Your MRI shows ___
4) Scar tissue appears with what features on a MRI? If your MRI shows scar, how is this tissue different from any of the above? Is this scar just from manipulation of non cancerous breast tissue?
Or, it is scar where cancer tissue was removed? then how are they planning to monitor this as leftover cells could be present. A lump indicates cells are reproducing, they could be non cancerous, but may be an opportunity for any leftover cell.
@mchler73
It’s all so frustrating. So sorry that you’re dealing with this!
One thing you might ask about is the differential diagnosis. If the consideration is that it might be scar, or it could be ADH, or it could be the rare cancer (missed in previous scans), or it could be DCIS - there are different features they consider to eliminate options. It might help to know what they’re basing their decision on, so you feel assured that they really are identifying what it is.
Have them talk through the features of what the MRI is showing differentiating it from what it is/not:
1) Your rare cancer had these features that would be visible in an MRI. What we’re seeing now is ___
Is it same or different, how?
2) DCIS, or ADH, has what features visible during an MRI? What we’re see now is ___
It is same or different, how?
3) A palpable, but not visible, non cancerous lump is expected to have these features seen on a MRI.
Your MRI shows ___
4) Scar tissue appears with what features on a MRI? If your MRI shows scar, how is this tissue different from any of the above? Is this scar just from manipulation of non cancerous breast tissue?
Or, it is scar where cancer tissue was removed? then how are they planning to monitor this as leftover cells could be present. A lump indicates cells are reproducing, they could be non cancerous, but may be an opportunity for any leftover cell.
@triciaot
Thank you!! Those are great questions that I will definitely ask.
I just hope they see something! I have read that an MRI should be able to pick up scar tissue but I guess I don’t know that for sure.
It’s so strange to clearly feel something but not be able to see it!
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Thank you mchler73. I really appreciate it.
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1 ReactionIt’s a question I want an answer to as well. For now I know it’s an AI but has a different approach than Anastrozole and Letrozole which are referred to as non steroidal. I’m learning more about it when I meet onco again.
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1 ReactionHi! @myoga, @anjalima
I am really curious on this matter, so I asked my medical Oncologist regarding the pros and cons of taking these 2 AIs; and was told that both Anastrozole and Exemestane are equally effective AIs, and have the same incidence of side effects. According to him: they just have different structures; for that reason if cancer becomes resistant to one it can still respond to another.
I am still curious to know the explanation of Anjalima's Oncologist when seeing her in person for discussion of future treatment plan. Thanks in advance for keeping us updated!
Wishing you all the best!
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1 Reaction@anjalima
Hello,
I can’t get in for my MRI until August 30th. I’m nervous that since the ultrasound couldn’t see the palpable lump, what if the MRI shows nothing, as well, and they say it’s fine, even though we can clearly feel it.
It scares me because the only reason they found my rare invasive cancer was because I felt a lump. The initial needle biopsy came back as ADH, so they said I should have it removed. It ended up being “grade 2, extensive” DCIS and during the lumpectomy, the surgeon noticed an area that “looked strange” so she removed that also and that was what came back as the rare cancer. It hadn’t been seen on mammo or ultrasound.
I am hoping the MRI can tell 100% that it’s scar tissue or something benign but what if that doesn’t happen? What should I ask my next steps to be so that I feel confident nothing further is needed?
If the cancer cells use estrogen for fuel then it doesn’t matter which aromatase inhibitors that we take since they all inhibit production of estrogen. I saw this article a way back explaining why cancer cells develop resistance to AI. The article was published in 2017. I wonder if it’s still valid.
https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/#:~:text=These%20women's%20ovaries%20have%20stopped,around%20one%20in%20three%20patients.
@anjalima please come back and share your onco’s opinion on this. I pray that the new drug is working better for you. Thank you
@lifegetting thank you for sharing your finding.
I pray that we all get through this well.
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2 ReactionsMy heart goes out to you. We’ve all experienced anxiety in this journey and it’s probably the worst part. I found walking and practicing breathing help calm me down. If the MRI finds nothing, would you consider mastectomy for your peace of mind? I’m a brca and planning to have DMX next year. Hugs.
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Like -
Helpful -
Hug
1 Reaction@myoga
I have actually been thinking about a mastectomy but no one in my family has ever had BC and my genetic testing came back negative, so idk if a mastectomy would even be recommended. Especially if they don’t find anything on the MRI.
And to make matters worse, my oncologist, who I trusted completely, just moved to another state so now I have to find someone new.
Even though the doctor who did the ultrasound could feel the lump, she was so quick to say, “good news, it’s benign” because she couldn’t see it on the screen and she “didn’t see anything concerning.” She didn’t even suggest getting an MRI. I told my Rad Onc about the situation and asked if she would order one.
I have learned to listen to my gut and advocate for myself but I feel sometimes things get missed and then people don’t find out it’s something serious until it’s too late.
-
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Helpful -
Hug
5 Reactions@anjalima
Thank you dear 🌺
@mchler73
It’s all so frustrating. So sorry that you’re dealing with this!
One thing you might ask about is the differential diagnosis. If the consideration is that it might be scar, or it could be ADH, or it could be the rare cancer (missed in previous scans), or it could be DCIS - there are different features they consider to eliminate options. It might help to know what they’re basing their decision on, so you feel assured that they really are identifying what it is.
Have them talk through the features of what the MRI is showing differentiating it from what it is/not:
1) Your rare cancer had these features that would be visible in an MRI. What we’re seeing now is ___
Is it same or different, how?
2) DCIS, or ADH, has what features visible during an MRI? What we’re see now is ___
It is same or different, how?
3) A palpable, but not visible, non cancerous lump is expected to have these features seen on a MRI.
Your MRI shows ___
4) Scar tissue appears with what features on a MRI? If your MRI shows scar, how is this tissue different from any of the above? Is this scar just from manipulation of non cancerous breast tissue?
Or, it is scar where cancer tissue was removed? then how are they planning to monitor this as leftover cells could be present. A lump indicates cells are reproducing, they could be non cancerous, but may be an opportunity for any leftover cell.
-
Like -
Helpful -
Hug
2 Reactions@triciaot
Thank you!! Those are great questions that I will definitely ask.
I just hope they see something! I have read that an MRI should be able to pick up scar tissue but I guess I don’t know that for sure.
It’s so strange to clearly feel something but not be able to see it!