Chemo after negative lymph nodes and negative genetic test?

Thess MF
Thess MF Member Posts: 4
in Breast Cancer #1

Hello everyone! Im new in this community and I hope you can help me.

 

i am total shock that after Bilateral Mastectomy (last Oct 14, 2020) of a stage 1 cancer (only on the left), and a negative lymph nodes, and negative BRCA1 and BRCA2 genetic test, my Oncologist called  this December 18, suggesting Chemo! my Oncology surgeon said, I dont need chemo, and my oncologist said the same thing. But then, this November 20, he submitted a sample to Oncotype DX, and came with my numbers: 37, 25% possibility of recurrence within 9years and 15% most likely will benefit on Chemo. im not ready for it. Is there any Chemo that will not affect my final Implant procedure for Breast reconstruction on Feb 2021? Is there a Chemo that I will not lose hair? Ive been keeping my sickness to my mother and family, and for them to see me bald, will disheartened me and them as well.  Also, is it possible to request a petscan first, before undergoing the chemo? Please help. ???

Comments

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    edited January 2021 #2
    Hi Thess

    I'm a long way out from diagnosis and treatment. They didn't have the oncotype test in my time. I did go through chemo. Unless there are new chemo treatments now I think the ACT and taxol both cause hair loss. Maybe you can get a second opinion?

  • Kristen0630
    Kristen0630 Member Posts: 15 Member
    edited January 2021 #3
    Hi Thess

    Thess,

    im sorry you are dealing with all of this. it truly is a scary time and hearing you need chemo is a tough thing to hear. By all means, I'm not saying to go for a second opinion. You need to be 100% comfortable with your treatment plan. But, I'll share something my MO toand me. She said that I would only have one chance to take an aggressive first treatment. i don't know your hormon receptor status, but I was triple negative so a very aggressive cancer. I chose to fight it aggressivel, and I have not regretted that. I was diagnosed May 1 and had neoadjuvant chemo, surgery and radiation. I've had the best possible results, with pCR status after surgery. That meant that no residual cancer was found either in my breast or lymph nodes.

    Chemo is not easy, but it is also not what you have seen on TV and movies. Remember, Hollywood doesn't depict reality. I did 4 months of Ac+ Taxol. It was hard, but doable. Yes, I did lose my hair. Looking back, it was what I dreaded most. But a good wig did wonders. Just like you, I wanted to keep my diagnosis private. And a wig helped me with that. I even got compliments on how nice my hair looked from coworkers who had no idea I was wearing a wig. I did not cold cap, but you may want to look into that. some people have success keeping their hair, or some of their hair through cold capping.

    I just finished the last of my treatments last week. It has t been an easy year, but it also wasn't as horrible as I thought it would be. You can do this. I'm not on this board as often as I used to be, but i will check back. Please don't hesitate to reach out to me with any questions. I would be happy to help you. I know how scared you are feeling right now.

     

  • Kristen0630
    Kristen0630 Member Posts: 15 Member
    edited January 2021 #4
    PET Scans

    Thess,

    I forgot to add, PET Scans are not  standard of care for breast cancer treatment. You generally only get approval for a PET scan if you're doctor has strong reason to believe there has been a spread of your cancer. CT is more common, and more often approved by insurance. 

  • Thess MF
    Thess MF Member Posts: 4
    edited January 2021 #5
    Kristen0630 said:

    Hi Thess

    Thess,

    im sorry you are dealing with all of this. it truly is a scary time and hearing you need chemo is a tough thing to hear. By all means, I'm not saying to go for a second opinion. You need to be 100% comfortable with your treatment plan. But, I'll share something my MO toand me. She said that I would only have one chance to take an aggressive first treatment. i don't know your hormon receptor status, but I was triple negative so a very aggressive cancer. I chose to fight it aggressivel, and I have not regretted that. I was diagnosed May 1 and had neoadjuvant chemo, surgery and radiation. I've had the best possible results, with pCR status after surgery. That meant that no residual cancer was found either in my breast or lymph nodes.

    Chemo is not easy, but it is also not what you have seen on TV and movies. Remember, Hollywood doesn't depict reality. I did 4 months of Ac+ Taxol. It was hard, but doable. Yes, I did lose my hair. Looking back, it was what I dreaded most. But a good wig did wonders. Just like you, I wanted to keep my diagnosis private. And a wig helped me with that. I even got compliments on how nice my hair looked from coworkers who had no idea I was wearing a wig. I did not cold cap, but you may want to look into that. some people have success keeping their hair, or some of their hair through cold capping.

    I just finished the last of my treatments last week. It has t been an easy year, but it also wasn't as horrible as I thought it would be. You can do this. I'm not on this board as often as I used to be, but i will check back. Please don't hesitate to reach out to me with any questions. I would be happy to help you. I know how scared you are feeling right now.

     

    Thank you Kristen0630! Since

    Thank you Kristen0630! Since June, I felt so alone, until I saw this Discussion Board. And to see your comment, made me cry. Now, Im not alone in this battle. 

    Regarding my BC, Im Estrogen Progestone Positive. My Genomic result number is 37, and 25% possibility of a recurrence within 9 years, if treatment only is Tamoxifen without Chemo.  I will meet my Onco on Jan 5th, but Im working on having a 2nd opinion. Thank you so much. Ill keep you guys updated.

     

     

     

     

  • Kristen0630
    Kristen0630 Member Posts: 15 Member
    edited January 2021 #6
    Not alone

    Thess--you are not alone, and if you ever have questions or need a friendly ear to listen, don't histiate to PM me. It's a soriority nobody wants to join, but once you are in ti we stick together. Sending you virtual hugs. 

  • Thess MF
    Thess MF Member Posts: 4
    edited January 2021 #7
    Deanie0916 said:

    Hi Thess

    I'm a long way out from diagnosis and treatment. They didn't have the oncotype test in my time. I did go through chemo. Unless there are new chemo treatments now I think the ACT and taxol both cause hair loss. Maybe you can get a second opinion?

    THANK YOU

    Thanks Deanie0916. I will meet up my oncologist on Jan 5th, and hopefully she has good news. I will also waiting for a second opinion approval from my Insurance. But I have a question which hopefully, you can provide:

    1. How long have you had the chemo treatment? How many sessions? Is it strong? Did you have it when you are menopause or not yet?

    2.  Hoe are you now? How long has it been that you have no ca?

  • Thess MF
    Thess MF Member Posts: 4
    edited January 2021 #8
    Kristen0630 said:

    Hi Thess

    Thess,

    im sorry you are dealing with all of this. it truly is a scary time and hearing you need chemo is a tough thing to hear. By all means, I'm not saying to go for a second opinion. You need to be 100% comfortable with your treatment plan. But, I'll share something my MO toand me. She said that I would only have one chance to take an aggressive first treatment. i don't know your hormon receptor status, but I was triple negative so a very aggressive cancer. I chose to fight it aggressivel, and I have not regretted that. I was diagnosed May 1 and had neoadjuvant chemo, surgery and radiation. I've had the best possible results, with pCR status after surgery. That meant that no residual cancer was found either in my breast or lymph nodes.

    Chemo is not easy, but it is also not what you have seen on TV and movies. Remember, Hollywood doesn't depict reality. I did 4 months of Ac+ Taxol. It was hard, but doable. Yes, I did lose my hair. Looking back, it was what I dreaded most. But a good wig did wonders. Just like you, I wanted to keep my diagnosis private. And a wig helped me with that. I even got compliments on how nice my hair looked from coworkers who had no idea I was wearing a wig. I did not cold cap, but you may want to look into that. some people have success keeping their hair, or some of their hair through cold capping.

    I just finished the last of my treatments last week. It has t been an easy year, but it also wasn't as horrible as I thought it would be. You can do this. I'm not on this board as often as I used to be, but i will check back. Please don't hesitate to reach out to me with any questions. I would be happy to help you. I know how scared you are feeling right now.

     

    What made you decide for Chemo?

    Hi KKristen0630. What made you decide for Chemo? did you have double mastectomy? Did you have Grade 3 tumor (which I did have). Here is the update. I reasoned to my Oncologist that I want to have a more defined reason to undergo a Chemo. So he gave me a blood test, and hopefully a CTScan. 

    Hope you can share your past situation and decision to undergo Chemo. Thanks

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