Secretory Carcinoma

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eihtak
eihtak Member Posts: 1,473 Member
in Breast Cancer #1
Hi, I am new to this board, tho a year ago was diagnosed with Anal Cancer Stage3. I received protocall treatment of chemo and radiation and last week my PET scan showed NED of that area. Should be happy ( and I am )... but a lump that has been in my breast for several years was again biopsied and the pathology report (5 reports) came back low grade, rare, secretory carcinoma. I know so little, other than what I have found on line. It sounds as tho there is no standard treatment since this is a very rare breast cancer and more commonly found in children. I am a 53yr female. I meet with my doc in a couple days to discuss treatment, but he has already mentioned mastectomy. Im ok with that if needed, but feel that there is admittedly a lack of experience treating this since it comes along so seldom. Any advice specific to secretory carcinoma of the breast would be soooo appreciated. I am more frightened than I was with my previous cancer, so please help!!!

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  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #2
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    I feel so bad for you
    I feel so bad for you getting such a bugger of a breast cancer. And what a confusing one. I looked it up, too, and within the same article, it says it is slow growing, not prone to metastasis, fast growing and prone to metastasis. It also says treat it agressively. WOW. How confusing for you. Hopefully your oncologists can figure out the best treatment. Perhaps they could consult with oncologists in the U.S. (or where ever) that have dealt with it. If you don't find anyone here that could help you, you could post this on another website called breastcancer.org.

    I wish you the best.
  • ssts01
    ssts01 Member Posts: 2
    #3
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    secretory breast cancer
    I was diagnosed with stage 2 secretory breast cancer 4 years ago at the age of 35. I did a lot of research also and like you found very little information because it is so rare. The conclusion that I came to was that it is a slow growing cancer and so they don't even know if chemo is beneficial because chemo destroys rapidly growing cells. Since there is so little known about it, the oncologists say that you should treat it like other breast cancers and treat with chemo. I am a nurse and not an oncologist but most days I believe that I went through chemo for nothing.

    The other research that I found suggested that it was best to treat with a mastectomy versus a lumpectomy because it does have a high chance of local recurrence with lumpectomies. Also I found that it is very treatable if there is no metastasis. I opted for the double mastectomies.

    I hope my information was helpful. Feel free to ask more questions if you have any.

    ts
  • eihtak
    eihtak Member Posts: 1,473 Member
    #4
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    ssts01 said:

    secretory breast cancer
    I was diagnosed with stage 2 secretory breast cancer 4 years ago at the age of 35. I did a lot of research also and like you found very little information because it is so rare. The conclusion that I came to was that it is a slow growing cancer and so they don't even know if chemo is beneficial because chemo destroys rapidly growing cells. Since there is so little known about it, the oncologists say that you should treat it like other breast cancers and treat with chemo. I am a nurse and not an oncologist but most days I believe that I went through chemo for nothing.

    The other research that I found suggested that it was best to treat with a mastectomy versus a lumpectomy because it does have a high chance of local recurrence with lumpectomies. Also I found that it is very treatable if there is no metastasis. I opted for the double mastectomies.

    I hope my information was helpful. Feel free to ask more questions if you have any.

    ts

    Thank you soooo much
    Thank you so much for the info. It helps just to know I'm not alone in this. I will always wonder about the chemo no matter which way I go. The part that is so hard is that I trust my docs but I think because of it being so rare they truely don't know what route to take. I know I have to trust that God leads them in the right direction and be at peace with that. I will keep in touch as things progress.....thankyou again.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #5
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    eihtak said:

    Thank you soooo much
    Thank you so much for the info. It helps just to know I'm not alone in this. I will always wonder about the chemo no matter which way I go. The part that is so hard is that I trust my docs but I think because of it being so rare they truely don't know what route to take. I know I have to trust that God leads them in the right direction and be at peace with that. I will keep in touch as things progress.....thankyou again.

    You are never alone! You
    You are never alone! You have all of the pink sisters here supporting you and helping in anyway that we can.


    Hugs!
  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
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    Kylez said:

    You are never alone! You
    You are never alone! You have all of the pink sisters here supporting you and helping in anyway that we can.


    Hugs!

    Pink sisters
    Thankyou for being there...funny, even tho cancer has been a part of my life in some way for some time, (my mom died of ovarian cancer, my own previous anal cancer, and my husband had a bone marrow transplant for multiple myeloma,) I feel more anxious and scared about this part of my journey than ever before. Maybe I am just so tired of always having this be part of my daily conversation and was so close to hearing cancer free, like it just slipped through my hands. It is a help to have people like you....hugs back at ya!!!
  • ssts01
    ssts01 Member Posts: 2
    #7
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    eihtak said:

    Pink sisters
    Thankyou for being there...funny, even tho cancer has been a part of my life in some way for some time, (my mom died of ovarian cancer, my own previous anal cancer, and my husband had a bone marrow transplant for multiple myeloma,) I feel more anxious and scared about this part of my journey than ever before. Maybe I am just so tired of always having this be part of my daily conversation and was so close to hearing cancer free, like it just slipped through my hands. It is a help to have people like you....hugs back at ya!!!

    Yes, I think the docs don't
    Yes, I think the docs don't know how to treat it so they treat it like any other breast cancer. The positive thing is that it is slow growing and so not as aggressive. Of the cases that I saw online, everyone that had no cancer in lymph nodes has stayed cancer free except 1 person if I remember correctly. So that is very good news. So many people are affected by cancer. I also have read that once you have had cancer you are more likely to develop another type of cancer. I have also had skin cancer about 2 years ago. You do have to trust in God that he knows what is best for you and is allowing you to experience this for a reason even though it doesn't make sense and maybe you will never know the reason until you meet him someday. Hope this gives you comfort.
  • eihtak
    eihtak Member Posts: 1,473 Member
    #8
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    ssts01 said:

    Yes, I think the docs don't
    Yes, I think the docs don't know how to treat it so they treat it like any other breast cancer. The positive thing is that it is slow growing and so not as aggressive. Of the cases that I saw online, everyone that had no cancer in lymph nodes has stayed cancer free except 1 person if I remember correctly. So that is very good news. So many people are affected by cancer. I also have read that once you have had cancer you are more likely to develop another type of cancer. I have also had skin cancer about 2 years ago. You do have to trust in God that he knows what is best for you and is allowing you to experience this for a reason even though it doesn't make sense and maybe you will never know the reason until you meet him someday. Hope this gives you comfort.

    Thankyou
    Its a funny thing....I like all have up days and down days, but on the up days I sometimes feel blessed as in the things I have gained in this experience greatly out weigh what I have lost, and maybe God has chosen me above others to carry this load for some greater purpose.(again thats on the up days) LOL
  • Alexis F
    Alexis F Member Posts: 3,598
    #9
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    eihtak said:

    Pink sisters
    Thankyou for being there...funny, even tho cancer has been a part of my life in some way for some time, (my mom died of ovarian cancer, my own previous anal cancer, and my husband had a bone marrow transplant for multiple myeloma,) I feel more anxious and scared about this part of my journey than ever before. Maybe I am just so tired of always having this be part of my daily conversation and was so close to hearing cancer free, like it just slipped through my hands. It is a help to have people like you....hugs back at ya!!!

    I've never heard of this
    I've never heard of this cancer and I am so sorry that you have it. Sending positive thoughts and prayers.


    Lex
  • Megan M
    Megan M Member Posts: 3,000
    #10
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    eihtak said:

    Pink sisters
    Thankyou for being there...funny, even tho cancer has been a part of my life in some way for some time, (my mom died of ovarian cancer, my own previous anal cancer, and my husband had a bone marrow transplant for multiple myeloma,) I feel more anxious and scared about this part of my journey than ever before. Maybe I am just so tired of always having this be part of my daily conversation and was so close to hearing cancer free, like it just slipped through my hands. It is a help to have people like you....hugs back at ya!!!

    I am so sorry that this is
    I am so sorry that this is your second time of fighting cancer. I am sending positive thoughts and I will be praying for you.


    Hugs, Megan
  • kbsss
    kbsss Member Posts: 4
    #11
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    Secretory carcinoma
    Secretory carcinoma is extremely rare. There is no consensus in the literature about treatment and each patient must be evaluated individually. In general, the older the age at diagnosis, the closer the treatment regimen follows that of invasive ductal carcinomas. This could mean radiation and chemo (in addition to surgery) for some patients. Hormonal therapies are likely not an option because the tumors do not typicall express ER/PR. Given that you're body has already gone through a radiation and chemo protocol for anal cancer, your doctors may not want to administer more. But again, your team of doctors should be able to assess this complex situation to come up with an optimal treatment plan. The best step you can take now is to make sure that you're comfortable with your team of providers. Are they current with the literature on this topic or are you educating them? You've been through a lot and you're understandably scared, so trust is critical and you deserve to be cared for by people who are creative, sharp and on top of their game.
  • eihtak
    eihtak Member Posts: 1,473 Member
    #12
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    kbsss said:

    Secretory carcinoma
    Secretory carcinoma is extremely rare. There is no consensus in the literature about treatment and each patient must be evaluated individually. In general, the older the age at diagnosis, the closer the treatment regimen follows that of invasive ductal carcinomas. This could mean radiation and chemo (in addition to surgery) for some patients. Hormonal therapies are likely not an option because the tumors do not typicall express ER/PR. Given that you're body has already gone through a radiation and chemo protocol for anal cancer, your doctors may not want to administer more. But again, your team of doctors should be able to assess this complex situation to come up with an optimal treatment plan. The best step you can take now is to make sure that you're comfortable with your team of providers. Are they current with the literature on this topic or are you educating them? You've been through a lot and you're understandably scared, so trust is critical and you deserve to be cared for by people who are creative, sharp and on top of their game.

    "Rare" Secretory Carcinoma
    Thankyou so much. I do trust my team of doctors a great deal, but they admit that this spcecific type of cancer is new to them. When I met with my doc just yesterday ,the plan he discussed was surgery (matectomy) in order to most fully get it all. He said he would take only 1 or 2 lymph nodes. Unless something showed up in the nodes to proove otherwise he felt chemo and radiation would not be needed at this time. He said not doing chemo or rad. had nothing to do with my past treatment, just not needed to treat this. My gut tells me to continue trusting them, but I welcome any info out there and will not have surgery for 2wks so have time to do some searching. Again thankyou!!
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    #13
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    eihtak said:

    "Rare" Secretory Carcinoma
    Thankyou so much. I do trust my team of doctors a great deal, but they admit that this spcecific type of cancer is new to them. When I met with my doc just yesterday ,the plan he discussed was surgery (matectomy) in order to most fully get it all. He said he would take only 1 or 2 lymph nodes. Unless something showed up in the nodes to proove otherwise he felt chemo and radiation would not be needed at this time. He said not doing chemo or rad. had nothing to do with my past treatment, just not needed to treat this. My gut tells me to continue trusting them, but I welcome any info out there and will not have surgery for 2wks so have time to do some searching. Again thankyou!!

    This is also a cancer that I
    This is also a cancer that I was not aware of. Just want the best treatment for you! Good luck and keep posting!

    ♥ Kristin ♥

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