Anyone like me?

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CakeLady21
CakeLady21 Member Posts: 24
edited July 2015 in Stage I Breast Cancer

Hi, my name is Becky and I'm 47 years old. I was just wondering if there's anyone out there with the same diagnosis as I have. Unfortunately, my doctors haven't been very explanatory about telling me anything, and I had no clue all I really need to know so I could ask. I'm finding out lots now. 

Here's what I know so far:  I was diagnosed with IDC on March 4, 2014. It was a hair smaller than 1cm. I opted for a right breast mastectomy on March 18, 2014 with immediate reconstruction....having an expander placed. I asked, and was told that it was estrogen positive and that no nodes were involved, although they removed 4 for biopsy. My surgeon released me at 1 week. I met with my oncologist 2 weeks after surgery and she sent off the tumor to be tested. (Onco testing?) It came back as an 18. She told me no chemo. I just needed to take Tamoxafin...she told me this by phone. Because of certain risks, I'm unsure whether it's worth it to take it....or if there's something else out there. I'm on the fence. I've called to speak with my oncologist, but only get the receptionist calling me back...2-3 days later. I finally scheduled another appt for the 28th of this month. 

Has anyone been where I am? Has anyone opted out of taking hormone blockers or AI's? 

Thanks for any answers. 

Blessings!!!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited May 2014

    Hello! I am 45 and I was diagnosed on March 27th with IDC Mucinous Type.  Stage 1 and grade 1. Mine was 1.2cm and I opted for a lx and rads (which start tomorrow!) I'm 100% ER and 100%PR positive. My oncotype was 12. So I'm going to happily take the tamoxifen to help prevent a reoccurrence or heaven forbid a met! I've also looked into having my ovaries removed as well to cut down my estrogen. My med onc says this isn't necessary. However, I haven't decided. I see you are also in KY. My docs are at Markey in Lexington which is about an hour from where I live.  I've been very pleased with my care.  If you're not getting the info you need then my suggestion is find another oncologist that'll listen to you.  I actually didn't care for my med onc the first time I met her but the 2nd time it was a much different experience.  Please feel free to message me if I can help you! 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    cakelady -  it is important for you to realize that your score of 18 on the Oncotype Dx testing of your tumor
    assumes that you will be taking hormonal therapy.  Oncotype Dx is formulated to determine how much chemotherapy will benefit you when added to hormonal therapy.  If you choose not to take hormonal therapy then your score on that test becomes meaningless.  When you go to your appointment on the 28th please ask your oncologist to give you estimates for risk reduction with hormonal therapy, and without, so that you have a more clear picture of what forgoing Tamoxifen, or an aromatase inhibitor if it is appropriate, really means for your specific situation.

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  • CakeLady21
    CakeLady21 Member Posts: 24
    edited May 2014

    Thank you Sunshineink and SpecialK!

    I live in Bowling Green, KY...so it sounds like we are not too far away from each other, Sunshine! I had opted to undergo a hysterectomy and oophorectomy, but cancelled the day before surgery 2 weeks ago. After researching and reading horror stories...I became very unsure. Honestly...I'm scared of the possible sexual side effects. I tried to talk to my oncologist, but she never returned my calls...just the receptionist called a couple days later and read off a paper that Tamoxafin was the drug of choice and protocol. The thing is, she doesn't know my history...stroke, my father died of massive stroke, and his mother died of what they called female cancer when he was young., and I have severe endometriosis and fibroid tumors. I had an endometrial ablation in 2005, but the lining has already grown back. I also have issues with depression...and almost all meds make me sick, or cause allergic reactions. I'm absorbing all comments and doing a lot of praying. :)

    SpecialK, thank you! I will definitely write that on my list of questions to discuss with her next week. I'm not totally against any form of treatment...but I want to know my options...and have them know my history before putting me on something that can make my life worse...or even cause me to die sooner. 

    Blessings on you both!! We will win this!! 

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited May 2014

    My daughter and her family live in BG I'm actually 2 hours from there, so I'm there atleast every 6 weeks! You really need to look at the benefit of the tamoxifen and try it if you can.  I keep telling myself that I'm going to try it but I can always call my onc if I have serious side effects.  As SpecialK said, your score includes taking some type of hormonal therapy so it's (to me) a very important part of my treatment.  

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  • CakeLady21
    CakeLady21 Member Posts: 24
    edited May 2014

    When you do come to BG, and if you have time, stop by my bakery...Milk and Honey Bakery. Just let me know if you can and I'll give you directions. :)

    I'll definitely check it all out! Thanks!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited May 2014

    I'll make time to come by your bakery! My grandson loves sweets so it'll be a great excuse to indulge him! 

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  • CakeLady21
    CakeLady21 Member Posts: 24
    edited May 2014

    That sounds great! I look forward to meeting you...and providing some treats for your grandson! :) We also have fresh made breakfasts and lunches...in case you're hungry. ;) 

    Hope to see you soon!

    Becky

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited May 2014

    CakeLady21 - your topic asked if there were anyone like you, and I think our similarities are only in the fact that my cancer was Stage 1. I had multifocal DCIS (non-invasive) and multifocal IDC (invasive) that was in several places. But the tumors themselves were small and caught early.

    Due to family history (Mom had BC) I opted for a Bilateral Mastectomy with Immediate Reconstruction. Since my tumors were 100% ER+, I was also prescribed an Aromatase Inhibitor, Arimidex, usually the drug of choice for post-menopausal women.

    The reason I am writing is that many times we come here to BCO for support, and find threads that are just terrifying. I know that when I read about all the side effects of Arimidex, I flatly told my MO that I would NOT take this drug. I already had many of the SEs, had a genetic disposition for more, and didn't want to take that chance.

    This is probably one of the most debated topics you'll find after a BC dx. Once you have decided on the type of surgery and treatment (chemo or rads if needed) then you must make the decision to take a pill for 5 - 10 years.

    Not being in your situation, I really can't advise you one way or another. But I can tell you that this is really the time to share your concerns with your MO.  I had to do some long, hard, thinking about this, and all I could hear was my mom's voice in my ear saying "You won't know unless you try."

    My MO and I came to an agreement that if the SEs were too bad, she would change drugs, and if they all had SEs, she would feel comfortable letting me stop. I had one year on Arimidex, and now almost one year on Femara.

    There are so many variables, and it sounds like right now you don't have enough information to make an informed choice.

    All I would do is caution you to not make your decision based on negative comments you have read on the forums. This is a support group, and women come here looking for answers to their challenges. There are also many women who do not have bad side effects with their medications, and those who do, may have other options.

    Like SpecialK said, come up with a good list of questions to ask your MO about YOUR particular situation.

    Wishing you the best.....

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  • CakeLady21
    CakeLady21 Member Posts: 24
    edited May 2014

    Thank you, Blessings2011! That is great advice, and I will definitely take it seriously. I have read horror stories for sure...but thankfully on this site, I've heard more encouragement than bad. I feel as if I now belong to a family who truly understands and cares about me. 

    I have been writing down questions and concerns to ask/share with my MO. I pray she makes time to listen and work with me. If not...there's always a second opinion. 

    Thank you so much for sharing your story and for all the positive comments!

    Many blessings on you!

    Becky

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  • sfpierre
    sfpierre Member Posts: 1
    edited June 2014

    I had a lumpectomy last friday and bs went after the sentinel node for analysis but did not find it.  the radioactive tracers nor the dye pointed to the sentinel node.  he knows the seeds were in the breast  from the lumpectomy but not in the node area.   has any one else had this happen?  he did take several nodes just because he could.  what is the next course of action to determine if cancer  has spread?

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  • Betty14
    Betty14 Member Posts: 89
    edited June 2014

    Hi cakelady,

                          my bc is IAC...invasive apocrine cancer. My lump was 8mm in size and I was ER+and PR+

    mine was stage 1 and grade 1. Mine is an invasive bc . My lump however was in situ...so still contained in the milk duct because they got it early.

    I had a mx on my right breast like yourself and I was offered tamoxifen but I refused because the sd's would have outweighed the coverage that they would have provided but it was purely my own personal choice as I do not do well with meds . To cut a very long story short, I have only been in contact with my onco once since my diagnosis and I was told that I was 99% cured but I'm in doubt about that prognosis. If this sounds confusing you can always read my biography as I explain things more clearly but until today I thought I had DCIS. My Dr assured me today that the treatment I had for IAC was ample. I made the best choice I could at the time . At the end of the day what I had was IDC....I just got it very early.

    So I opted out of taking tamoxifen or any other further treatment. I just had my mx . I was diagnosed Nov 2011 and I'm still here . I wish the best for all of us.

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  • CakeLady21
    CakeLady21 Member Posts: 24
    edited June 2014

    Thank you, bettylovestrees! It's so encouraging to hear positive stories! After much research, thoughts, and prayers, I chose not to take any blockers. After talking with my MO, she's actually in agreement that this choice was right for me, and said the Tamoxafin would only decrease risk of recurrence by 2-3%. Not worth the side effects or risks...for me. She will be doing follow up every 4 months for a while. I'm totally at peace with my decision...and am enjoying living life cancer-free. :) 

    Sfpierre, I don't know of another way, but I'm sure there are some great women on here that might be able to help you out with some info. I was fortunate that my sentinel nodes were pinpointed immediately. Praying someone here can offer some info for you. :)

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited June 2014

    Hi, sfpierre, and welcome to the forum!

    This particular thread is one started by CakeLady21, asking about some issues specific to her.

    You will probably get more responses from the ladies here if you start your own new topic, introduce yourself, and ask your question again. One place you might start is here:

    Surgery: Before, During, and After https://community.breastcancer.org/forum/91

    (Just click on the "Start A New Topic" button.)

    Wishing you the best!!!

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  • lorililly
    lorililly Member Posts: 10
    edited July 2015

    Hi, everyone. I am from lexington and has been told i had a phyllodes.. I have not meet anyone yet that also has it here in town.. only on the internet. i have had a mastectomy and iam doing breast Reconstruction . It is nice to have people around that know how you feel and you can talk with and share advice..

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  • Lagal1
    Lagal1 Member Posts: 2
    edited July 2015

    Hi Lorillily

    I had one too! I live in a different state, but when I was talking to my surgeon he said that he saw it a few times in his residency, but so far I was the first one that he's seen where we live! I had my first surgery on 7/10/15 and unfortunately the pathology report showed that they have to go back in.... Mine was a partial mastectomy, but I'm still healing and haven't really decided on reconstructive yet :(

    I really think that they are rare and I feel really thankful that I got off so easy! But it has been a long month and a half of inconclusive results.... I just want to fast forward time until it's all over and Iall healed from the surgeries

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  • bluepearl
    bluepearl Member Posts: 961
    edited July 2015

    You could also go on CancerMath and put in your scores and see the difference with or without treatments, Sometimes not very much difference, esp with small grade 1 tumours.

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