Hello,
I was just recently diagnosed with LGASC and also Ductal Carcinoma In Situ (DCIS).
Being that LGASC is so rare, it would be nice to chat with others who have been diagnosed with this too. I’m not really sure how to use this site so any help would be appreciated. Thank you!
Hello,
I was just recently diagnosed with LGASC and also Ductal Carcinoma In Situ (DCIS).
Being that LGASC is so rare, it would be nice to chat with others who have been diagnosed with this too. I’m not really sure how to use this site so any help would be appreciated. Thank you!
I also had Low Grade Adeno Squamous Metaplastic Carcinoma. Apparently, this is a difficult cancer to diagnose. Even the State University teaching hospital had to send my tumor specimen to Stanford University to get a diagnosis. From what I understand it is a combination of skin and glandular tissue. At first, I was told that I had a metaplastic carcinoma which is very fast growing and more likely to spread and is likely to recur. The 5-year survival rate for this is 55%. So, you can imagine how happy I was when my diagnosis was changed. I will never forget the 20 second hug that I received from my breast surgeon when she thought that I had the more serious diagnosis. I could just feel her concern for me. I am so glad that the original diagnosis was questioned, and they consequently sought out other opinions.
I had my surgery in January 2020. My surgeon recommended 4 weeks of radiation with a boost so that is what I did. So far, I am cancer free.
I am sorry that you had to get this diagnosis. What has your doctor recommended for you?
Hi Katrina,
Yes, I am so happy for you that they sent it out and got an accurate, much better diagnosis! And that you are cancer free!
My doc sent mine out to Mayo Clinic and it finally came back yesterday. At this point, I am supposed to be doing genetic testing and having sentinel node biopsy (SNB) surgery and then once those results are in, we will come up with a treatment plan.
I was prepared for it to come back as DCIS because my doc said it was highly likely, but I wasn’t prepared for the LGASC.
I am wondering if it is so rare, how they know the best way to treat it? I guess from past treatment experiences…..
What was Radiation like??
My doc said I would be doing that and also taking taking Tamoxifen, but I assume that will start after the genetic testing and SNB results are back. It’s all so confusing!
Have you had to do anything else since the radiation treatment?
Michelle,
My radiation began in April of 2020 so to be honest with you I was more afraid of catching covid. I went to a radiology center that had very kind radiologists. You just have to tell yourself that this is the best thing to do and take it one day at a time. I did have some burns but because I was diligent about using cream the burns did not get really severe. The radiology department recommended a cream called MY GIRLS. You can get this on the internet, or you can use whatever your radiologist recommends.
Because this cancer is so rare it is difficult to find very much information on it. I have read though that there is good long-term survival. So that's a good thing.
You asked if I have had to do anything else since radiation. I see my oncologist every 3 months. She has ordered an imaging test every 3 months. I go from having a 3D mammogram then an Ultrasound and then MRI's. I don't know if this is normal or not. I have a very rare immune disease so maybe she is taking this into consideration.
This is an odd question for you, but I am curious if you have ever had breast papilloma's? I had surgery in both breasts 28 years ago and it makes me wonder if there is any connection to this unusual cancer.
I know how scarry this can be but there are so many brilliant doctors out there. I am sure you will be in good hands.
Let us know what you find out from your doctor.
Katrina
Michelle,
My radiation began in April of 2020 so to be honest with you I was more afraid of catching covid. I went to a radiology center that had very kind radiologists. You just have to tell yourself that this is the best thing to do and take it one day at a time. I did have some burns but because I was diligent about using cream the burns did not get really severe. The radiology department recommended a cream called MY GIRLS. You can get this on the internet, or you can use whatever your radiologist recommends.
Because this cancer is so rare it is difficult to find very much information on it. I have read though that there is good long-term survival. So that's a good thing.
You asked if I have had to do anything else since radiation. I see my oncologist every 3 months. She has ordered an imaging test every 3 months. I go from having a 3D mammogram then an Ultrasound and then MRI's. I don't know if this is normal or not. I have a very rare immune disease so maybe she is taking this into consideration.
This is an odd question for you, but I am curious if you have ever had breast papilloma's? I had surgery in both breasts 28 years ago and it makes me wonder if there is any connection to this unusual cancer.
I know how scarry this can be but there are so many brilliant doctors out there. I am sure you will be in good hands.
Let us know what you find out from your doctor.
Katrina
Katrina,
No, I have not ever had Breast Papilloma’s before. I was also wondering since this is so rare, what similarities we could possibly have…? I also have a autoimmune condition. It’s called Hoshimoto’s Thyroiditis.
I have never had an abnormal mammogram before and no one in my family has had breast cancer. However, they did tell me I have very dense breasts and because of that, it is easier to miss things on a normal mammogram.
In May, I found a lump in the size of a walnut in my right breast. It seemed to appear out of nowhere. It had jagged edges but didn’t hurt at all.
Did you have a Sentinel Node Biopsy surgery?
Also, were you diagnosed with anything other than LGASC? I also have DCIS so I’m not sure if it’s rare to have both or not?
It is nice to chat with someone who has also gone through this.
Sorry for a million questions!
I will let you know what I find out.
Thank you,
Michelle
Michelle,
I had Graves disease when I was a young woman and I had a tumor grow around my windpipe, so I had to have a thyroidectomy. I have thyroid disease, but I have never been diagnosed with Hashimoto's. (My daughter has Hashimoto's)
I do have an immune disease called Common Variable Immune Deficiency or CVID. I am missing part of my immune system. I give myself daily infusions of immunoglobulin.
Like you I also have very dense breasts. I had a 3D Mammogram and 2 months later I could feel what turned out to be a 2 CM tumor in my breast. The tumor could be seen on an ultrasound.
Not sure why but my surgeon did not recommend that I have node biopsy surgery. The thing that worries me about my pathology report is that it says that I had striking perineural invasion of large nerves. I can't seem to find very much on this topic regarding breast perineural invasion. My only breast cancer diagnosis was Low Grade Adeno Squamous Metaplastic Carcinoma.
I have been on this sight for a long time, and you are the first person to come forward who had the same tumor diagnosis as me. I don't mind your questions in fact I am very interested in what you have to say.
Katrina
Katrina,
Wow, you have a lot going on. I’m sorry!
I read LGASC is less than 0.2% of all breast cancers, so extremely rare.
Did your doc explain to you what perineural invasion is? I would be worried about that too! I haven’t been able to access my pathology report yet, my patient portal says it’s pending until august 20th but I’m not sure why. I definitely want to read it. If I see that term, I will let you know.
The majority of my tumor was DCIS and only a small area was LGASC. My doc said my duct is packed with DCIS but I’ve heard if you have to have breast cancer, DCIS is the best case scenario.
My Sentinel Node Biopsy surgery is set for August 28th. I will let you know how it goes and also let you know once I can read my path report. Yeah, I am wondering why your surgeon didn’t recommend this for you?
But at least you are cancer free now and hopefully it stays that way!
Take care,
Michelle
Hi Katrina,
I was able to read my Path report that came back from Mayo. It does not mention perineural invasion. It said my LFASC is positive for CK5, Keratin AE1/AE3, and P63. I’m not exactly sure what that all means.
I do have a question, I have read a couple people say that cancer care is moving away from Radiation as treatment.
You said you had 4 weeks of Radiation. Did your doctor think Radiation was important for treating LGASC?
Thanks,
Michelle
Michelle.
Yes, both my breast surgeon and my breast oncologist recommended that I have the radiation. They decided that I should not have Chemotherapy because of my immune disease. In my case the Chemotherapy could do more harm than good.
A portion of my path report was similar to yours. Positive for CK7, pan keratin and expressing p40, CK5/6 and p63. My report says these features are consistent with squamous carcinoma.
You asked about the perineural invasion and all that I know is that my cancer invaded large nerves. I can't find much information on this because of the rarity of it. However, I did read that PNI could be used as an independent poor prognostic indicator in patients with invasive breast carcinoma. It's been almost 4 years since my lumpectomy surgery, and I have not had a metastasis so that's a good thing.
I have never heard that cancer care is moving away from radiation so maybe someone else who knows more than I do could respond to that question.
I can't find much information on perineural invasion in breast cancer. If anyone reading this knows of a site that has information on this, I would appreciate it if you would let me know.
Thanks
Katrina
Michelle.
Yes, both my breast surgeon and my breast oncologist recommended that I have the radiation. They decided that I should not have Chemotherapy because of my immune disease. In my case the Chemotherapy could do more harm than good.
A portion of my path report was similar to yours. Positive for CK7, pan keratin and expressing p40, CK5/6 and p63. My report says these features are consistent with squamous carcinoma.
You asked about the perineural invasion and all that I know is that my cancer invaded large nerves. I can't find much information on this because of the rarity of it. However, I did read that PNI could be used as an independent poor prognostic indicator in patients with invasive breast carcinoma. It's been almost 4 years since my lumpectomy surgery, and I have not had a metastasis so that's a good thing.
I have never heard that cancer care is moving away from radiation so maybe someone else who knows more than I do could respond to that question.
I can't find much information on perineural invasion in breast cancer. If anyone reading this knows of a site that has information on this, I would appreciate it if you would let me know.
Thanks
Katrina
Hi Katrina,
I had my Sentinel Node Biopsy surgery yesterday and surgeon took out 2 Lymph nodes. One was enlarged and pretty deep so my incision is a lot bigger than I was expecting. I am pretty tired and sore.
Now I wait for Pathology to test the nodes to see if any cancer spread. Hopefully will have results in about a week. I Am also still waiting on my genetic testing results.
I can’t remember, did you say you had genetic testing done?
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Hello,
I was just recently diagnosed with LGASC and also Ductal Carcinoma In Situ (DCIS).
Being that LGASC is so rare, it would be nice to chat with others who have been diagnosed with this too. I’m not really sure how to use this site so any help would be appreciated. Thank you!
mchler,
I also had Low Grade Adeno Squamous Metaplastic Carcinoma. Apparently, this is a difficult cancer to diagnose. Even the State University teaching hospital had to send my tumor specimen to Stanford University to get a diagnosis. From what I understand it is a combination of skin and glandular tissue. At first, I was told that I had a metaplastic carcinoma which is very fast growing and more likely to spread and is likely to recur. The 5-year survival rate for this is 55%. So, you can imagine how happy I was when my diagnosis was changed. I will never forget the 20 second hug that I received from my breast surgeon when she thought that I had the more serious diagnosis. I could just feel her concern for me. I am so glad that the original diagnosis was questioned, and they consequently sought out other opinions.
I had my surgery in January 2020. My surgeon recommended 4 weeks of radiation with a boost so that is what I did. So far, I am cancer free.
I am sorry that you had to get this diagnosis. What has your doctor recommended for you?
Katrina
-
Like -
Helpful -
Hug
1 ReactionHi Katrina,
Yes, I am so happy for you that they sent it out and got an accurate, much better diagnosis! And that you are cancer free!
My doc sent mine out to Mayo Clinic and it finally came back yesterday. At this point, I am supposed to be doing genetic testing and having sentinel node biopsy (SNB) surgery and then once those results are in, we will come up with a treatment plan.
I was prepared for it to come back as DCIS because my doc said it was highly likely, but I wasn’t prepared for the LGASC.
I am wondering if it is so rare, how they know the best way to treat it? I guess from past treatment experiences…..
What was Radiation like??
My doc said I would be doing that and also taking taking Tamoxifen, but I assume that will start after the genetic testing and SNB results are back. It’s all so confusing!
Have you had to do anything else since the radiation treatment?
Thanks so much for your response!
Michelle
Michelle,
My radiation began in April of 2020 so to be honest with you I was more afraid of catching covid. I went to a radiology center that had very kind radiologists. You just have to tell yourself that this is the best thing to do and take it one day at a time. I did have some burns but because I was diligent about using cream the burns did not get really severe. The radiology department recommended a cream called MY GIRLS. You can get this on the internet, or you can use whatever your radiologist recommends.
Because this cancer is so rare it is difficult to find very much information on it. I have read though that there is good long-term survival. So that's a good thing.
You asked if I have had to do anything else since radiation. I see my oncologist every 3 months. She has ordered an imaging test every 3 months. I go from having a 3D mammogram then an Ultrasound and then MRI's. I don't know if this is normal or not. I have a very rare immune disease so maybe she is taking this into consideration.
This is an odd question for you, but I am curious if you have ever had breast papilloma's? I had surgery in both breasts 28 years ago and it makes me wonder if there is any connection to this unusual cancer.
I know how scarry this can be but there are so many brilliant doctors out there. I am sure you will be in good hands.
Let us know what you find out from your doctor.
Katrina
Katrina,
No, I have not ever had Breast Papilloma’s before. I was also wondering since this is so rare, what similarities we could possibly have…? I also have a autoimmune condition. It’s called Hoshimoto’s Thyroiditis.
I have never had an abnormal mammogram before and no one in my family has had breast cancer. However, they did tell me I have very dense breasts and because of that, it is easier to miss things on a normal mammogram.
In May, I found a lump in the size of a walnut in my right breast. It seemed to appear out of nowhere. It had jagged edges but didn’t hurt at all.
Did you have a Sentinel Node Biopsy surgery?
Also, were you diagnosed with anything other than LGASC? I also have DCIS so I’m not sure if it’s rare to have both or not?
It is nice to chat with someone who has also gone through this.
Sorry for a million questions!
I will let you know what I find out.
Thank you,
Michelle
Michelle,
I had Graves disease when I was a young woman and I had a tumor grow around my windpipe, so I had to have a thyroidectomy. I have thyroid disease, but I have never been diagnosed with Hashimoto's. (My daughter has Hashimoto's)
I do have an immune disease called Common Variable Immune Deficiency or CVID. I am missing part of my immune system. I give myself daily infusions of immunoglobulin.
Like you I also have very dense breasts. I had a 3D Mammogram and 2 months later I could feel what turned out to be a 2 CM tumor in my breast. The tumor could be seen on an ultrasound.
Not sure why but my surgeon did not recommend that I have node biopsy surgery. The thing that worries me about my pathology report is that it says that I had striking perineural invasion of large nerves. I can't seem to find very much on this topic regarding breast perineural invasion. My only breast cancer diagnosis was Low Grade Adeno Squamous Metaplastic Carcinoma.
I have been on this sight for a long time, and you are the first person to come forward who had the same tumor diagnosis as me. I don't mind your questions in fact I am very interested in what you have to say.
Katrina
-
Like -
Helpful -
Hug
1 ReactionKatrina,
Wow, you have a lot going on. I’m sorry!
I read LGASC is less than 0.2% of all breast cancers, so extremely rare.
Did your doc explain to you what perineural invasion is? I would be worried about that too! I haven’t been able to access my pathology report yet, my patient portal says it’s pending until august 20th but I’m not sure why. I definitely want to read it. If I see that term, I will let you know.
The majority of my tumor was DCIS and only a small area was LGASC. My doc said my duct is packed with DCIS but I’ve heard if you have to have breast cancer, DCIS is the best case scenario.
My Sentinel Node Biopsy surgery is set for August 28th. I will let you know how it goes and also let you know once I can read my path report. Yeah, I am wondering why your surgeon didn’t recommend this for you?
But at least you are cancer free now and hopefully it stays that way!
Take care,
Michelle
Hi Katrina,
I was able to read my Path report that came back from Mayo. It does not mention perineural invasion. It said my LFASC is positive for CK5, Keratin AE1/AE3, and P63. I’m not exactly sure what that all means.
I do have a question, I have read a couple people say that cancer care is moving away from Radiation as treatment.
You said you had 4 weeks of Radiation. Did your doctor think Radiation was important for treating LGASC?
Thanks,
Michelle
Michelle.
Yes, both my breast surgeon and my breast oncologist recommended that I have the radiation. They decided that I should not have Chemotherapy because of my immune disease. In my case the Chemotherapy could do more harm than good.
A portion of my path report was similar to yours. Positive for CK7, pan keratin and expressing p40, CK5/6 and p63. My report says these features are consistent with squamous carcinoma.
You asked about the perineural invasion and all that I know is that my cancer invaded large nerves. I can't find much information on this because of the rarity of it. However, I did read that PNI could be used as an independent poor prognostic indicator in patients with invasive breast carcinoma. It's been almost 4 years since my lumpectomy surgery, and I have not had a metastasis so that's a good thing.
I have never heard that cancer care is moving away from radiation so maybe someone else who knows more than I do could respond to that question.
I can't find much information on perineural invasion in breast cancer. If anyone reading this knows of a site that has information on this, I would appreciate it if you would let me know.
Thanks
Katrina
Hi Katrina,
I had my Sentinel Node Biopsy surgery yesterday and surgeon took out 2 Lymph nodes. One was enlarged and pretty deep so my incision is a lot bigger than I was expecting. I am pretty tired and sore.
Now I wait for Pathology to test the nodes to see if any cancer spread. Hopefully will have results in about a week. I Am also still waiting on my genetic testing results.
I can’t remember, did you say you had genetic testing done?
Thanks,
Michelle