Declining Chemo?

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shireenkassam
shireenkassam Member Posts: 3
edited June 2014 in Chemotherapy - Before, During, and After


Hi there,


My mom was diagnosed with Breast Cancer a few months ago. She had IDC in one breast and DCIS in the other. She opted for a bilateral mastectomy. She is currently healing and now faces the post-surgery treatment dilemma.


She is ER/PR+, HER2- and had a grade 3 tumor that was <2cm in her left breast. There is also possible evidence for microscopic vascular cancer as some cancer cells were seen in the blood vessels of the tumor that was removed.


Our oncologist has recommended 4 doses of TC (Docetaxel and Cyclophosphamide) followed by Tamoxifen for 2 years then Aromatase Inhibitors for the next 2-3 years.


She is considering only taking the Tamoxifen instead of both the Chemo and Tamoxifen due to the undeniable side effects both long-term and short-term, that could arise from Chemotherapy. She has been told she will definitely lose all her hair and can expect nose bleeds, low white blood cell count etc.


Has anyone denied chemo and opted for only hormone therapy? Any thoughts on her situation?

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2013


    Hi Shireenkassam. Thank you for being such a comfort to your mother and seeking out information. Since your mother is hormone postitive and her2-, she may benefit from the Oncotype DX or Mammaprint test. Did her doctor discuss these tests with you? They will help her and her doctors understand the possible benefits of adding chemotherapy to her post surgery treatment by sampling her tumor's genetic make up. There are undeniable short and long term side effects from TC, however they may be worth it if it will reduce her recurrence rate.


    Good luck and hugs, MsP

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited November 2013


    Hi there!


    It is sweet of you to be by your mom's side through this!


    I did TC chemo and found it very easy. I was encouraged to do AC-T chemo and after much research and discussion went with the TC. I was terrified to do chemo and of the SEs and losing my hair. I did not have any really bad days and the SEs were mild and pretty easy to manage.


    I also did not lose my hair because I cold capped. It takes work and is an expense, but it made a HUGE difference in my outlook and attitude ;0)


    Has your mom had an oncotype test run? It predicts the chance of recurrence.


    I wish you and your mom the best of luck moving forward, no matter which path she decides on!

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  • shireenkassam
    shireenkassam Member Posts: 3
    edited November 2013


    Thank you so much MsPharoah.


    We are in Canada where the Oncotype DX and Mammaprint tests are not covered or readily recommended by Healthcare Providers. I have heard about them though, and we did ask our Oncologist about the Oncotype DX test. She said that because it does not take LVI into consideration, that it probably won't help with her recommendation for or against chemotherapy.


    Do you think it would be beneficial to go ahead with the tests anyways and then take them back to her to see if her recommendation changes?


    Thanks again for your support, you're an inspiration!

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited November 2013


    Hi Shireen,


    I am guessing they are going to stick with recommending chemo because of the grade 3 and the vascular invasion.


    I know how your mom feels. I would have done anything to get out of chemo. But when push came to shove, I had to do what gave me the best chance at coming out on too of this. Now that I am on the other side of chemo, it wasnt near as bad as the places my imagination took me.


    Give your mom some time to wrap her head around all of this! Make a list of questions for the doctors and go for there!


    Best of luck! Deciding on a game plan is one of the worst parts of all of this. Surgery is easy because we want it OUT. The other stuff is harder to figure out because you answer one question and it opens 3 more!

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  • shireenkassam
    shireenkassam Member Posts: 3
    edited November 2013


    Thanks 4sewwhat! Your experience is inspiring and we just looked into the cold caps which seem to be a great resource that will take away from a lot of my Mom's anxiety and fear. She just spent the last 2 years growing out her hair and I think it is a big deal for her!


    I checked out your blog, its nice to see you kept a positive attitude throughout your treatment! What brand of cold caps did you use? Was any of it covered by your insurance provider or other agencies?


    Thanks again for your support!!

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited November 2013


    I figured the hair might be a big thing for her and I have never heard of nose bleeds! Runny nose, yes! Many people think the hair is a vanity thing, but it is SO much more than that.


    Sorry about my blog it needs help! I put it out there really quick so a lady had access to the cap change vids before her chemo started. I really need to get back to work on it!


    I used ElastoGels. I rented them from a company that I will NOT recommend. You can buy the 6 you need on amazon for $510 with free shipping. Then you need to get dry ice for each treatment. I would be happy to help you with whatever info you need! The are also other companies that will provide the same caps and manage the ice and things for you. I think it is about $300 a treatment. It is pretty easy to do yourself and our mom already has a great helper!


    Here is a thread Cold Cap Users Past and Present I think is the title. It is in Getting Through Treatment. You can look in my posts and find it or it is usually near the top of the active threads. A lot of those ladies used Penguin Cold Caps. They rent for about $500 a month though and your mom would need 2-3 months depending on how her dates fell. My TC was 3 weeks apart so I had three months.


    Pm me if you would like and I will be happy to help with whatever I can! The hair was actually the scariest SE for me. I didn't care as much about feeling sick as I did about looking sick! I wanted to have some say/control in what was happening to me. I really think my outlook also helped with the lack of SEs. I just wasn't willing to let it take any more from me than it had to and only what I was willing to give.


    Your mom is going to get through this with flying colors and is lucky to have you by her side! My daughter is one of my biggest cheerleaders. She is 9 years old and puts up with 3 older brothers every day!M

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