My old doctor who retired would have said, let’s hit with everything, just in case. I think the doctor I have now would have a more measured approach. I can’t say what it will be but with all the targeted treatments they have now I just know you are going to come through this.
I would be for asking “if I was triple positive before and only double positive now, does that mean a third less treatment this time?”. That is for levity, but seriously I would ask if it possible this was there and they missed it, or is it a fast growing cancer because from May until now doesn’t seem like a lot of time to grow a tumor. Because of my own history, if this were me, I would be asking for a pet scan to make sure there isn’t any more hanging around.
This has to be a crushing blow, how are you doing?
I was originally diagnosed with her2 triple positive BC in May. I finished my 6 rounds of chemo and at a post chemo MRI i found a second tumor that is HER2 negative and estrogen positive.
i am curious what the treatment is under this scenario.
Ask for an ONCOTYPE before taking anti estrogen therapy ( tamoxifen or aromatase inhibitors. But you will definitely be a candidate for hormone therapy ( meds) .
I’m sorry you have to go this just when you were thinking you were done with treatment. 🌸
I was diagnosed Jan 30 2024 with invasive lobular breast cancer (missed in yearly mammograms due to very dense tissue- easily detected with a side view type of camera that I wish would have been used sooner but that is my advocacy effort now for others) with one tumor 5 cm and spread into multiple lymph nodes. The biopsy showed ++-
I have my team at Mayo that has helped guide my chemo team closer to home with aggressive weekly chemo starting in Feb and then last 8 weeks biweekly even harsher chemo. The chemo has been hard on body - went from osteopenia to osteoporosis at 54-fractured two vertebra sneezing and cracked a rib standing up too fast at the end of that chemo. The rib was a week before my double mastectomy and lymph node removal surgery at Mayo end of July so made things a little more difficult to figure out on my end. First three lymph nodes removed had cancer so took 23- 4 were positive for cancer. The plan was then to briefly start recovery and do 3 weeks of daily radiation at Mayo and started on estrogen blocker pill for 10 years. Unfortunately, post-surgical pathology showed that the big tumor had both ++- AND Her 2+. Chemo Dr was surprised and said this was “rare and remarkable”. Had we known, we would have added the Her2+ treatments to the chemo on front end- likely done surgery sooner - and then continued treatment, but this was when we knew. I am thankful that Mayo does test post surgical tumors as that is not common practice I have learned- I hope it becomes common practice. So we had to adjust plan- still radiation and pill I was on but last week of radiation I started 54 weeks of Her2+ infusions - Zometa injections for bones- and then giving me a few weeks to somewhat heal (and briefly meet a new grand baby out of state) , another chemo was going to be added also to target Her 2+. My chemo Dr asked that the nodes from surgery be tested with assumption Her2+, but those were Her++-. I was supposed to get port back in day after I got home, but the pathology tests again changed plan, and I started oral chemo (Verzenio). I only lasted four days on that with extreme side effects requiring 2 weeks of antibiotics and many sick days- nails bleeding- everyone reacts differently. I continued the infusions triweekly and a new option Kasqali was then an option. I have been on that twice daily now along with the rest of my treatments for two weeks and doing okay managing much more manageable side effects for me. I take it three weeks daily with week off and back on- up to 2 years. I get echo test for infusion treatments and labs and ekg biweekly for oral chemo- in my last echo before Thanksgiving it showed that my heart function had worsened and issue with valve- so to cardiology I went and started two new heart pills the day before Thanksgiving that will hopefully allow me to continue the treatment plan I’m on- next echo is end of Dec so we will know then. On a plus note I have continued to work full time, though more from home, and I feel thankful for that to keep me busy. I have three adult kids and 7 grandchildren (1 in Heaven) that I want to be here for as much as possible. My husband has done alot - he is supposed to retire next year - which hopefully he still can. I have not talked to anyone else who has both ++- and Her2+ so this caught my interest- first time I have been in any group discussions so apologies for length, but I like to have details and I appreciate information even though I know that no two people are the same. The research on this is more for those that knew from beginning that they had both, so my treatment plan has been somewhat different. Thank you for letting me share and I hope to learn more through others’ experiences.
I was diagnosed Jan 30 2024 with invasive lobular breast cancer (missed in yearly mammograms due to very dense tissue- easily detected with a side view type of camera that I wish would have been used sooner but that is my advocacy effort now for others) with one tumor 5 cm and spread into multiple lymph nodes. The biopsy showed ++-
I have my team at Mayo that has helped guide my chemo team closer to home with aggressive weekly chemo starting in Feb and then last 8 weeks biweekly even harsher chemo. The chemo has been hard on body - went from osteopenia to osteoporosis at 54-fractured two vertebra sneezing and cracked a rib standing up too fast at the end of that chemo. The rib was a week before my double mastectomy and lymph node removal surgery at Mayo end of July so made things a little more difficult to figure out on my end. First three lymph nodes removed had cancer so took 23- 4 were positive for cancer. The plan was then to briefly start recovery and do 3 weeks of daily radiation at Mayo and started on estrogen blocker pill for 10 years. Unfortunately, post-surgical pathology showed that the big tumor had both ++- AND Her 2+. Chemo Dr was surprised and said this was “rare and remarkable”. Had we known, we would have added the Her2+ treatments to the chemo on front end- likely done surgery sooner - and then continued treatment, but this was when we knew. I am thankful that Mayo does test post surgical tumors as that is not common practice I have learned- I hope it becomes common practice. So we had to adjust plan- still radiation and pill I was on but last week of radiation I started 54 weeks of Her2+ infusions - Zometa injections for bones- and then giving me a few weeks to somewhat heal (and briefly meet a new grand baby out of state) , another chemo was going to be added also to target Her 2+. My chemo Dr asked that the nodes from surgery be tested with assumption Her2+, but those were Her++-. I was supposed to get port back in day after I got home, but the pathology tests again changed plan, and I started oral chemo (Verzenio). I only lasted four days on that with extreme side effects requiring 2 weeks of antibiotics and many sick days- nails bleeding- everyone reacts differently. I continued the infusions triweekly and a new option Kasqali was then an option. I have been on that twice daily now along with the rest of my treatments for two weeks and doing okay managing much more manageable side effects for me. I take it three weeks daily with week off and back on- up to 2 years. I get echo test for infusion treatments and labs and ekg biweekly for oral chemo- in my last echo before Thanksgiving it showed that my heart function had worsened and issue with valve- so to cardiology I went and started two new heart pills the day before Thanksgiving that will hopefully allow me to continue the treatment plan I’m on- next echo is end of Dec so we will know then. On a plus note I have continued to work full time, though more from home, and I feel thankful for that to keep me busy. I have three adult kids and 7 grandchildren (1 in Heaven) that I want to be here for as much as possible. My husband has done alot - he is supposed to retire next year - which hopefully he still can. I have not talked to anyone else who has both ++- and Her2+ so this caught my interest- first time I have been in any group discussions so apologies for length, but I like to have details and I appreciate information even though I know that no two people are the same. The research on this is more for those that knew from beginning that they had both, so my treatment plan has been somewhat different. Thank you for letting me share and I hope to learn more through others’ experiences.
@ksmiley70 Hi there. Thanks for taking the time to so thoughtfully and precisely describe your diagnosis and treatment plan. I have found the Mayo platform helpful and impressively maintained/monitored, even though I’m not a Mayo patient.
You’ve been through so much. Being told anything is “rare” or “remarkable” (that is my situation) can sometimes add another murky layer to an already challenging situation.
But your sharing here will likely be of help to other patients.
I only had HER2 low (1+) but thank you for sharing - this is very informative. Interestingly, I had asked at my hospital if they would test HER2 in both the breast lesion and any cancer found in the nodes and they told me they would not test any receptors in the nodes because the cancer in the nodes would be the same as that in the breast lesion. I personally didn't agree with that but they were a top hospital following NCCN guidelines and said thats what they do. When you were first diagnosed, was all of the HER2 testing with both IHC and FISH? My understanding is that the FISH is the most accurate and definitely should be done if IHC shows HER2 as 2 or higher. I've often wondered if the reason that some women end up having recurrences / showing 'resistance' to the primary treatment is because the pathology only looks at a tiny slice of the tumor - who's to say that other parts of the primary tumor didn't have other mutations or receptors?
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My old doctor who retired would have said, let’s hit with everything, just in case. I think the doctor I have now would have a more measured approach. I can’t say what it will be but with all the targeted treatments they have now I just know you are going to come through this.
I would be for asking “if I was triple positive before and only double positive now, does that mean a third less treatment this time?”. That is for levity, but seriously I would ask if it possible this was there and they missed it, or is it a fast growing cancer because from May until now doesn’t seem like a lot of time to grow a tumor. Because of my own history, if this were me, I would be asking for a pet scan to make sure there isn’t any more hanging around.
This has to be a crushing blow, how are you doing?
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Helpful -
Hug
2 ReactionsAsk for an ONCOTYPE before taking anti estrogen therapy ( tamoxifen or aromatase inhibitors. But you will definitely be a candidate for hormone therapy ( meds) .
I’m sorry you have to go this just when you were thinking you were done with treatment. 🌸
-
Like -
Helpful -
Hug
3 ReactionsI was diagnosed Jan 30 2024 with invasive lobular breast cancer (missed in yearly mammograms due to very dense tissue- easily detected with a side view type of camera that I wish would have been used sooner but that is my advocacy effort now for others) with one tumor 5 cm and spread into multiple lymph nodes. The biopsy showed ++-
I have my team at Mayo that has helped guide my chemo team closer to home with aggressive weekly chemo starting in Feb and then last 8 weeks biweekly even harsher chemo. The chemo has been hard on body - went from osteopenia to osteoporosis at 54-fractured two vertebra sneezing and cracked a rib standing up too fast at the end of that chemo. The rib was a week before my double mastectomy and lymph node removal surgery at Mayo end of July so made things a little more difficult to figure out on my end. First three lymph nodes removed had cancer so took 23- 4 were positive for cancer. The plan was then to briefly start recovery and do 3 weeks of daily radiation at Mayo and started on estrogen blocker pill for 10 years. Unfortunately, post-surgical pathology showed that the big tumor had both ++- AND Her 2+. Chemo Dr was surprised and said this was “rare and remarkable”. Had we known, we would have added the Her2+ treatments to the chemo on front end- likely done surgery sooner - and then continued treatment, but this was when we knew. I am thankful that Mayo does test post surgical tumors as that is not common practice I have learned- I hope it becomes common practice. So we had to adjust plan- still radiation and pill I was on but last week of radiation I started 54 weeks of Her2+ infusions - Zometa injections for bones- and then giving me a few weeks to somewhat heal (and briefly meet a new grand baby out of state) , another chemo was going to be added also to target Her 2+. My chemo Dr asked that the nodes from surgery be tested with assumption Her2+, but those were Her++-. I was supposed to get port back in day after I got home, but the pathology tests again changed plan, and I started oral chemo (Verzenio). I only lasted four days on that with extreme side effects requiring 2 weeks of antibiotics and many sick days- nails bleeding- everyone reacts differently. I continued the infusions triweekly and a new option Kasqali was then an option. I have been on that twice daily now along with the rest of my treatments for two weeks and doing okay managing much more manageable side effects for me. I take it three weeks daily with week off and back on- up to 2 years. I get echo test for infusion treatments and labs and ekg biweekly for oral chemo- in my last echo before Thanksgiving it showed that my heart function had worsened and issue with valve- so to cardiology I went and started two new heart pills the day before Thanksgiving that will hopefully allow me to continue the treatment plan I’m on- next echo is end of Dec so we will know then. On a plus note I have continued to work full time, though more from home, and I feel thankful for that to keep me busy. I have three adult kids and 7 grandchildren (1 in Heaven) that I want to be here for as much as possible. My husband has done alot - he is supposed to retire next year - which hopefully he still can. I have not talked to anyone else who has both ++- and Her2+ so this caught my interest- first time I have been in any group discussions so apologies for length, but I like to have details and I appreciate information even though I know that no two people are the same. The research on this is more for those that knew from beginning that they had both, so my treatment plan has been somewhat different. Thank you for letting me share and I hope to learn more through others’ experiences.
-
Like -
Helpful -
Hug
4 Reactions@ksmiley70 Hi there. Thanks for taking the time to so thoughtfully and precisely describe your diagnosis and treatment plan. I have found the Mayo platform helpful and impressively maintained/monitored, even though I’m not a Mayo patient.
You’ve been through so much. Being told anything is “rare” or “remarkable” (that is my situation) can sometimes add another murky layer to an already challenging situation.
But your sharing here will likely be of help to other patients.
Wishing you strength and resilience,
Susan
Thank you for the support.
I only had HER2 low (1+) but thank you for sharing - this is very informative. Interestingly, I had asked at my hospital if they would test HER2 in both the breast lesion and any cancer found in the nodes and they told me they would not test any receptors in the nodes because the cancer in the nodes would be the same as that in the breast lesion. I personally didn't agree with that but they were a top hospital following NCCN guidelines and said thats what they do. When you were first diagnosed, was all of the HER2 testing with both IHC and FISH? My understanding is that the FISH is the most accurate and definitely should be done if IHC shows HER2 as 2 or higher. I've often wondered if the reason that some women end up having recurrences / showing 'resistance' to the primary treatment is because the pathology only looks at a tiny slice of the tumor - who's to say that other parts of the primary tumor didn't have other mutations or receptors?