I had lymphovascular invasion. It was in the lymph vessels, not blood vessels, and was close to the cancer, not distant. Apparently distance from the tumor is important.
I had two mastectomies and hormonal treatment. I was told that one out of five radiologists would have recommended radiation. I did not have it.
My Oncotype Dx was low at 8 but I had grade 3 (one hospital said grade 2), LVI, high ki67% and equivocal HER2 that had to be retested and was kind of borderline but considered, ultimately, to be negative.
So just letrozole (Femara) and just for 5 years. I am 7 1/2 years out.
None of my doctors expressed a lot of concern about the LVI, and my treatment plan was affirmed by a tumor board at a major cancer center. My research initially indicated it was equivalent to one lymph node being positive, but I later read that it is better if the LVI is, as I said, closer to the tumor. Nothing made it to the lymph node.
Hope my story provides some reassurance.
I was just looking up my BC details again from 2013, looking for oncotype. Don't see one. I was just very surprised to find IVC on the pathology report and then read the same as what windyshores just said, that's it's the same as one node being positive. It also mentions it's a key step in metastasis. No one mentioned that or any concern at the time. I had IDC ER/PR+ HER2-, medium grade 7 mm tumor. 6-7 lymph nodes all negative, clear margins. I do have both the BRCA2 mutation and the CHEK2 mutation (although we didn't know about CHEK2 at the time).
My surgeon's notes to me say 1-3% chance of recurrence if I opt for the double mastectomy. Higher if lumpectomy. There was a question about hormone therapy (tamoxifen) because I'm a CYP2D6 poor metabolizer, but was told there was an alternate med. I was concerned about side effects and he told me I had about a 99.6% chance of survival with hormone therapy and 99.2% without so I shouldn't even bother. Later I saw in his portal notes that I had declined HT. No, I accepted his recommendation. I often find doctor's online notes do not accurately reflect what we each said in the visit. Radiation and chemo were not suggested since it was not in the lymph nodes.
Fast forward 7 years to 2020 and I discovered recurrent breast cancer in my chest wall an inch from the original deep tumor. It's now highly aggressive at Ki-67 50%. My original surgeon then told me if I had taken hormone therapy that would have reduced my chances of recurrence by 50%. She knew I wasn't taking it and saw me 15 times in the past 7 years. The oncologist was her partner. She seemed to be pointing the finger at me. I wasn't pointing the finger at her, but she seemed very defensive about my recurrent cancer. How frustrating.
A different surgeon removed my new 1.2 cm tumor and a small part of my pectoral muscle, but there was a positive margin. She said she didn't want to go back in for more surgery, just let radiation take care of it (we hope!). I had 37 radiation treatments, 28 regular and 9 boost, but the first 4 boosts were off target since the surgeon reopened my old incision (long story). Another error, but I discussed this with the radiation oncologist before treatment and he said he would check with my surgeon.
My current oncologist told me in the beginning he disagreed with what I was told by the 2013 oncologist. The new one thinks cells likely already got away from the recurrent chest wall tumor before surgery because it's so aggressive now. So we wonder about those and if radiation took care of the positive margin. I didn't have chemo because of my pre-x neuropathy (would be in pain forever and can't take pain meds) and he doubts it would work on my recurrent cancer anyway. So I've been on Kisqali and Letrozole for over 2 years now and so far so good. This all supports getting a second opinion on everything which I didn't do, but highly recommend. I hope to be a cautionary tale for others. Thanks for listening.
I was just looking up my BC details again from 2013, looking for oncotype. Don't see one. I was just very surprised to find IVC on the pathology report and then read the same as what windyshores just said, that's it's the same as one node being positive. It also mentions it's a key step in metastasis. No one mentioned that or any concern at the time. I had IDC ER/PR+ HER2-, medium grade 7 mm tumor. 6-7 lymph nodes all negative, clear margins. I do have both the BRCA2 mutation and the CHEK2 mutation (although we didn't know about CHEK2 at the time).
My surgeon's notes to me say 1-3% chance of recurrence if I opt for the double mastectomy. Higher if lumpectomy. There was a question about hormone therapy (tamoxifen) because I'm a CYP2D6 poor metabolizer, but was told there was an alternate med. I was concerned about side effects and he told me I had about a 99.6% chance of survival with hormone therapy and 99.2% without so I shouldn't even bother. Later I saw in his portal notes that I had declined HT. No, I accepted his recommendation. I often find doctor's online notes do not accurately reflect what we each said in the visit. Radiation and chemo were not suggested since it was not in the lymph nodes.
Fast forward 7 years to 2020 and I discovered recurrent breast cancer in my chest wall an inch from the original deep tumor. It's now highly aggressive at Ki-67 50%. My original surgeon then told me if I had taken hormone therapy that would have reduced my chances of recurrence by 50%. She knew I wasn't taking it and saw me 15 times in the past 7 years. The oncologist was her partner. She seemed to be pointing the finger at me. I wasn't pointing the finger at her, but she seemed very defensive about my recurrent cancer. How frustrating.
A different surgeon removed my new 1.2 cm tumor and a small part of my pectoral muscle, but there was a positive margin. She said she didn't want to go back in for more surgery, just let radiation take care of it (we hope!). I had 37 radiation treatments, 28 regular and 9 boost, but the first 4 boosts were off target since the surgeon reopened my old incision (long story). Another error, but I discussed this with the radiation oncologist before treatment and he said he would check with my surgeon.
My current oncologist told me in the beginning he disagreed with what I was told by the 2013 oncologist. The new one thinks cells likely already got away from the recurrent chest wall tumor before surgery because it's so aggressive now. So we wonder about those and if radiation took care of the positive margin. I didn't have chemo because of my pre-x neuropathy (would be in pain forever and can't take pain meds) and he doubts it would work on my recurrent cancer anyway. So I've been on Kisqali and Letrozole for over 2 years now and so far so good. This all supports getting a second opinion on everything which I didn't do, but highly recommend. I hope to be a cautionary tale for others. Thanks for listening.
@californiazebra so generous of you to tell your story. It will help others for sure.
I believe the Oncotype was relatively new even in 2015 when I had my diagnosis.
Lymphovascular invasion can be "focal" or "extensive and noone even told us then which it was. I had to ask. Docs never mentioned LVI at all, in fact, nor did they mention ki67%
Are you dealing with a recurrence locally of the original cancer, or metastasis?
I am so sorry. Nowadays even without the Oncotype I think people are told that hormonal meds reduce risk 50%, when ER is positive enough. You were maybe a victim of the guidelines for practice being behind the research.
I have been upset about medical notes, my own, my kids, my mother- totally get that. You did NOT decline, you complied.
@californiazebra so generous of you to tell your story. It will help others for sure.
I believe the Oncotype was relatively new even in 2015 when I had my diagnosis.
Lymphovascular invasion can be "focal" or "extensive and noone even told us then which it was. I had to ask. Docs never mentioned LVI at all, in fact, nor did they mention ki67%
Are you dealing with a recurrence locally of the original cancer, or metastasis?
I am so sorry. Nowadays even without the Oncotype I think people are told that hormonal meds reduce risk 50%, when ER is positive enough. You were maybe a victim of the guidelines for practice being behind the research.
I have been upset about medical notes, my own, my kids, my mother- totally get that. You did NOT decline, you complied.
@windyshores -- Thanks for your response. They have diagnosed it as advanced breast cancer, metastasis, since it came back in my chest and muscle. That's why I'm on Kisqali (and letrozole this time). But at least I found the lump on my bony chest before it spread to all my organs or I had symptoms. They likely would have caught it in the ultrasound I already had scheduled for two days later. I'm better off than many women with MBC as far as advancement, but the big concern is how aggressive it is this time (triple what it was last time).
When we discussed MBC treatment, I said, "Just for the sake of argument, what would happen if I did nothing?" He said, "It's so aggressive, it would be everywhere in months." Yikes. Kisqali isn't expected to work forever, but it all does make you cherish every day more than you ever did. So, like others have said, it's a blessing and a curse. We'll focus on the blessing part. 🙂
I think you may be right about them not being caught up on everything. It was a breast center, but my current oncologist is part of UCLA, but local to me. The oncology world changes rapidly for sure.
I'm betting we're not the only ones surprised by the notes. When I read the doctor's notes, any doctor, I see, "We discussed x, y, and z." I think, "We did? When?" Or I tell them I'm having a problem with x and their notes say, denies any issues with x. What? I think sometimes they don't do their charting till night after they've seen 20 patients that now all blur together. Once I read about all the vaccines I just had and it turns out they logged notes for the patient after me under my file. That's scary. Portals are convenient and eye opening!
@windyshores -- Thanks for your response. They have diagnosed it as advanced breast cancer, metastasis, since it came back in my chest and muscle. That's why I'm on Kisqali (and letrozole this time). But at least I found the lump on my bony chest before it spread to all my organs or I had symptoms. They likely would have caught it in the ultrasound I already had scheduled for two days later. I'm better off than many women with MBC as far as advancement, but the big concern is how aggressive it is this time (triple what it was last time).
When we discussed MBC treatment, I said, "Just for the sake of argument, what would happen if I did nothing?" He said, "It's so aggressive, it would be everywhere in months." Yikes. Kisqali isn't expected to work forever, but it all does make you cherish every day more than you ever did. So, like others have said, it's a blessing and a curse. We'll focus on the blessing part. 🙂
I think you may be right about them not being caught up on everything. It was a breast center, but my current oncologist is part of UCLA, but local to me. The oncology world changes rapidly for sure.
I'm betting we're not the only ones surprised by the notes. When I read the doctor's notes, any doctor, I see, "We discussed x, y, and z." I think, "We did? When?" Or I tell them I'm having a problem with x and their notes say, denies any issues with x. What? I think sometimes they don't do their charting till night after they've seen 20 patients that now all blur together. Once I read about all the vaccines I just had and it turns out they logged notes for the patient after me under my file. That's scary. Portals are convenient and eye opening!
Doctor's seem to spend some language in their notes on their own CYA. As far as the LVI, my oncologist and surgeon hardly mentioned it, and even the second opinion MO didn't point it out except to say that it was a negative.
However, given my concern I chose to have radiation after lumpectomy, which the literature said is more effective than hormone blocking if you had to chose one or the other. I am taking anastrozole every other day but am considering stopping after 2 years, which will be in September. My OncoDX was an 8 so my recurrence risk may be low, but in the end it is a bit of a crap shoot. We just have to make our best choices in lifestyle and medical treatment. Sorry to hear that you have had to experience this awful disease again. Fortunately, and kudos to you, you found it early enough to halt its progression. Thank you for sharing your story. Be well.
Wow, I am always amazed at how much information is available to newly diagnosed patients now. I am so grateful that these tests are all available to you.
My surgeon said it was high grade cancer, (grade 3 of 3) er+, pr-, and her2+. I am not looking at the path report, but I remember (I think😂) it was between 2 and 3 centimeters and anchored to the chest wall.
I also asked my doctor what would happen if I did nothing. He said you will have a real irreversible problem in a few short months. He said the problem was, that he had to scrape it off of the rib bones already, and it drained right to the internal mammary nodes.
Funny thing, patient portals were also not a thing until later, and I am definitely not comfortable using one. I will go in and look at test results since they no longer call with anything. I won’t log in again until there are more tests. Lol. I will say I question a fair amount of information in that portal, I just never had any real reason to try and correct it.
Thank you for sharing your story, it will impact many who read these pages, even if they never post a word.💕
Doctor's seem to spend some language in their notes on their own CYA. As far as the LVI, my oncologist and surgeon hardly mentioned it, and even the second opinion MO didn't point it out except to say that it was a negative.
However, given my concern I chose to have radiation after lumpectomy, which the literature said is more effective than hormone blocking if you had to chose one or the other. I am taking anastrozole every other day but am considering stopping after 2 years, which will be in September. My OncoDX was an 8 so my recurrence risk may be low, but in the end it is a bit of a crap shoot. We just have to make our best choices in lifestyle and medical treatment. Sorry to hear that you have had to experience this awful disease again. Fortunately, and kudos to you, you found it early enough to halt its progression. Thank you for sharing your story. Be well.
Wow, I am always amazed at how much information is available to newly diagnosed patients now. I am so grateful that these tests are all available to you.
My surgeon said it was high grade cancer, (grade 3 of 3) er+, pr-, and her2+. I am not looking at the path report, but I remember (I think😂) it was between 2 and 3 centimeters and anchored to the chest wall.
I also asked my doctor what would happen if I did nothing. He said you will have a real irreversible problem in a few short months. He said the problem was, that he had to scrape it off of the rib bones already, and it drained right to the internal mammary nodes.
Funny thing, patient portals were also not a thing until later, and I am definitely not comfortable using one. I will go in and look at test results since they no longer call with anything. I won’t log in again until there are more tests. Lol. I will say I question a fair amount of information in that portal, I just never had any real reason to try and correct it.
Thank you for sharing your story, it will impact many who read these pages, even if they never post a word.💕
@auntieoakley -- eek at scraping it off your ribs. That hurt just reading that.
I don't try to correct bad info in my portal notes except the one about the vaccines for another patient or something else critical like wrong meds listed. Like you, I mainly go in to look at test results or send the doctor a note when needed, but sparingly to respect their time. Sometimes I have to open the doctor's visit notes to get them off my new message board. I do like to see how accurate each doctor is though. 😉
@auntieoakley -- eek at scraping it off your ribs. That hurt just reading that.
I don't try to correct bad info in my portal notes except the one about the vaccines for another patient or something else critical like wrong meds listed. Like you, I mainly go in to look at test results or send the doctor a note when needed, but sparingly to respect their time. Sometimes I have to open the doctor's visit notes to get them off my new message board. I do like to see how accurate each doctor is though. 😉
I am still struggling to enter this new tech world in very many ways. I don’t do any financial business, or banking. I don’t even like to buy over the internet unless I absolutely can’t find it elsewhere.
I do work online but everything is done on one platform so I don’t have to fuss much about that. I didn’t really like it when all the medical records starting being electronic, but I have completely given in to that now.
How are you feeling?
I am still struggling to enter this new tech world in very many ways. I don’t do any financial business, or banking. I don’t even like to buy over the internet unless I absolutely can’t find it elsewhere.
I do work online but everything is done on one platform so I don’t have to fuss much about that. I didn’t really like it when all the medical records starting being electronic, but I have completely given in to that now.
How are you feeling?
@auntieoakley
I'm sort of hit and miss with the electronic world. Like you, sometimes I'm slow to get onboard with new stuff too. I'm finally into scanning my own purchases at the store unless there is produce involved. All the online stuff makes me a little apprehensive due to privacy, hackers, etc. I still prefer to type on a computer rather than off my phone -- too small and my quivering neuropathy fingers and thumbs don't work very well on a phone screen...snail. I've never done any social media before this message board and I landed here by accident after querying a rare lung condition I have. Little by little we adapt to and try to keep up with this ever-changing world. If you don't know how to do something, ask your grandkids. 🙂
I do love Amazon though! It's like having a genie in a bottle...I wish I had...poof!
I'm doing well. Everything is stable right now. I've been on the same treatment plan for my breast cancer and unrelated lung NETS/DIPNECH for over 2 years so ailments and side effects just become part of the new normal until something changes drastically. Thanks for asking. And you?
@auntieoakley
I'm sort of hit and miss with the electronic world. Like you, sometimes I'm slow to get onboard with new stuff too. I'm finally into scanning my own purchases at the store unless there is produce involved. All the online stuff makes me a little apprehensive due to privacy, hackers, etc. I still prefer to type on a computer rather than off my phone -- too small and my quivering neuropathy fingers and thumbs don't work very well on a phone screen...snail. I've never done any social media before this message board and I landed here by accident after querying a rare lung condition I have. Little by little we adapt to and try to keep up with this ever-changing world. If you don't know how to do something, ask your grandkids. 🙂
I do love Amazon though! It's like having a genie in a bottle...I wish I had...poof!
I'm doing well. Everything is stable right now. I've been on the same treatment plan for my breast cancer and unrelated lung NETS/DIPNECH for over 2 years so ailments and side effects just become part of the new normal until something changes drastically. Thanks for asking. And you?
I would say about the same. I am currently on limited medications, and minimal side effects most days. Some day I get a little whiny about the nausea or the long-standing neuropathy, but most days I can just focus on something else and keep moving.
Today I took a break from the whining and went and rode my horse with the other old girls at the barn.
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@windyshores @annkitz @auntieoakley @vivi1
I was just looking up my BC details again from 2013, looking for oncotype. Don't see one. I was just very surprised to find IVC on the pathology report and then read the same as what windyshores just said, that's it's the same as one node being positive. It also mentions it's a key step in metastasis. No one mentioned that or any concern at the time. I had IDC ER/PR+ HER2-, medium grade 7 mm tumor. 6-7 lymph nodes all negative, clear margins. I do have both the BRCA2 mutation and the CHEK2 mutation (although we didn't know about CHEK2 at the time).
My surgeon's notes to me say 1-3% chance of recurrence if I opt for the double mastectomy. Higher if lumpectomy. There was a question about hormone therapy (tamoxifen) because I'm a CYP2D6 poor metabolizer, but was told there was an alternate med. I was concerned about side effects and he told me I had about a 99.6% chance of survival with hormone therapy and 99.2% without so I shouldn't even bother. Later I saw in his portal notes that I had declined HT. No, I accepted his recommendation. I often find doctor's online notes do not accurately reflect what we each said in the visit. Radiation and chemo were not suggested since it was not in the lymph nodes.
Fast forward 7 years to 2020 and I discovered recurrent breast cancer in my chest wall an inch from the original deep tumor. It's now highly aggressive at Ki-67 50%. My original surgeon then told me if I had taken hormone therapy that would have reduced my chances of recurrence by 50%. She knew I wasn't taking it and saw me 15 times in the past 7 years. The oncologist was her partner. She seemed to be pointing the finger at me. I wasn't pointing the finger at her, but she seemed very defensive about my recurrent cancer. How frustrating.
A different surgeon removed my new 1.2 cm tumor and a small part of my pectoral muscle, but there was a positive margin. She said she didn't want to go back in for more surgery, just let radiation take care of it (we hope!). I had 37 radiation treatments, 28 regular and 9 boost, but the first 4 boosts were off target since the surgeon reopened my old incision (long story). Another error, but I discussed this with the radiation oncologist before treatment and he said he would check with my surgeon.
My current oncologist told me in the beginning he disagreed with what I was told by the 2013 oncologist. The new one thinks cells likely already got away from the recurrent chest wall tumor before surgery because it's so aggressive now. So we wonder about those and if radiation took care of the positive margin. I didn't have chemo because of my pre-x neuropathy (would be in pain forever and can't take pain meds) and he doubts it would work on my recurrent cancer anyway. So I've been on Kisqali and Letrozole for over 2 years now and so far so good. This all supports getting a second opinion on everything which I didn't do, but highly recommend. I hope to be a cautionary tale for others. Thanks for listening.
-
Like -
Helpful -
Hug
1 Reaction@californiazebra so generous of you to tell your story. It will help others for sure.
I believe the Oncotype was relatively new even in 2015 when I had my diagnosis.
Lymphovascular invasion can be "focal" or "extensive and noone even told us then which it was. I had to ask. Docs never mentioned LVI at all, in fact, nor did they mention ki67%
Are you dealing with a recurrence locally of the original cancer, or metastasis?
I am so sorry. Nowadays even without the Oncotype I think people are told that hormonal meds reduce risk 50%, when ER is positive enough. You were maybe a victim of the guidelines for practice being behind the research.
I have been upset about medical notes, my own, my kids, my mother- totally get that. You did NOT decline, you complied.
-
Like -
Helpful -
Hug
2 Reactions@windyshores -- Thanks for your response. They have diagnosed it as advanced breast cancer, metastasis, since it came back in my chest and muscle. That's why I'm on Kisqali (and letrozole this time). But at least I found the lump on my bony chest before it spread to all my organs or I had symptoms. They likely would have caught it in the ultrasound I already had scheduled for two days later. I'm better off than many women with MBC as far as advancement, but the big concern is how aggressive it is this time (triple what it was last time).
When we discussed MBC treatment, I said, "Just for the sake of argument, what would happen if I did nothing?" He said, "It's so aggressive, it would be everywhere in months." Yikes. Kisqali isn't expected to work forever, but it all does make you cherish every day more than you ever did. So, like others have said, it's a blessing and a curse. We'll focus on the blessing part. 🙂
I think you may be right about them not being caught up on everything. It was a breast center, but my current oncologist is part of UCLA, but local to me. The oncology world changes rapidly for sure.
I'm betting we're not the only ones surprised by the notes. When I read the doctor's notes, any doctor, I see, "We discussed x, y, and z." I think, "We did? When?" Or I tell them I'm having a problem with x and their notes say, denies any issues with x. What? I think sometimes they don't do their charting till night after they've seen 20 patients that now all blur together. Once I read about all the vaccines I just had and it turns out they logged notes for the patient after me under my file. That's scary. Portals are convenient and eye opening!
-
Like -
Helpful -
Hug
2 ReactionsDoctor's seem to spend some language in their notes on their own CYA. As far as the LVI, my oncologist and surgeon hardly mentioned it, and even the second opinion MO didn't point it out except to say that it was a negative.
However, given my concern I chose to have radiation after lumpectomy, which the literature said is more effective than hormone blocking if you had to chose one or the other. I am taking anastrozole every other day but am considering stopping after 2 years, which will be in September. My OncoDX was an 8 so my recurrence risk may be low, but in the end it is a bit of a crap shoot. We just have to make our best choices in lifestyle and medical treatment. Sorry to hear that you have had to experience this awful disease again. Fortunately, and kudos to you, you found it early enough to halt its progression. Thank you for sharing your story. Be well.
-
Like -
Helpful -
Hug
4 ReactionsWow, I am always amazed at how much information is available to newly diagnosed patients now. I am so grateful that these tests are all available to you.
My surgeon said it was high grade cancer, (grade 3 of 3) er+, pr-, and her2+. I am not looking at the path report, but I remember (I think😂) it was between 2 and 3 centimeters and anchored to the chest wall.
I also asked my doctor what would happen if I did nothing. He said you will have a real irreversible problem in a few short months. He said the problem was, that he had to scrape it off of the rib bones already, and it drained right to the internal mammary nodes.
Funny thing, patient portals were also not a thing until later, and I am definitely not comfortable using one. I will go in and look at test results since they no longer call with anything. I won’t log in again until there are more tests. Lol. I will say I question a fair amount of information in that portal, I just never had any real reason to try and correct it.
Thank you for sharing your story, it will impact many who read these pages, even if they never post a word.💕
Wishing you all good health as well. I hope you’re all cancer free forever. 🥰
-
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Helpful -
Hug
3 Reactions@auntieoakley -- eek at scraping it off your ribs. That hurt just reading that.
I don't try to correct bad info in my portal notes except the one about the vaccines for another patient or something else critical like wrong meds listed. Like you, I mainly go in to look at test results or send the doctor a note when needed, but sparingly to respect their time. Sometimes I have to open the doctor's visit notes to get them off my new message board. I do like to see how accurate each doctor is though. 😉
-
Like -
Helpful -
Hug
1 ReactionI am still struggling to enter this new tech world in very many ways. I don’t do any financial business, or banking. I don’t even like to buy over the internet unless I absolutely can’t find it elsewhere.
I do work online but everything is done on one platform so I don’t have to fuss much about that. I didn’t really like it when all the medical records starting being electronic, but I have completely given in to that now.
How are you feeling?
-
Like -
Helpful -
Hug
2 Reactions@auntieoakley
I'm sort of hit and miss with the electronic world. Like you, sometimes I'm slow to get onboard with new stuff too. I'm finally into scanning my own purchases at the store unless there is produce involved. All the online stuff makes me a little apprehensive due to privacy, hackers, etc. I still prefer to type on a computer rather than off my phone -- too small and my quivering neuropathy fingers and thumbs don't work very well on a phone screen...snail. I've never done any social media before this message board and I landed here by accident after querying a rare lung condition I have. Little by little we adapt to and try to keep up with this ever-changing world. If you don't know how to do something, ask your grandkids. 🙂
I do love Amazon though! It's like having a genie in a bottle...I wish I had...poof!
I'm doing well. Everything is stable right now. I've been on the same treatment plan for my breast cancer and unrelated lung NETS/DIPNECH for over 2 years so ailments and side effects just become part of the new normal until something changes drastically. Thanks for asking. And you?
-
Like -
Helpful -
Hug
2 ReactionsI would say about the same. I am currently on limited medications, and minimal side effects most days. Some day I get a little whiny about the nausea or the long-standing neuropathy, but most days I can just focus on something else and keep moving.
Today I took a break from the whining and went and rode my horse with the other old girls at the barn.
-
Like -
Helpful -
Hug
3 Reactions