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Stage 2 Sisters Club

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  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    I’m officially joining this club today. My internet research matched my MO’s staging. I’m Stage IIa. Was bummed that my OncoType DX hadn’t been ordered yet. The disadvantage of our community’s segmented medical system. BSO thought MO would order. MO thought BSO would order.

    MO thinks it’s pretty likely my OncoType will be high and that I will need chemo. In the meantime I’ll be able to have a week with no cancer appointments, and then go back the following week for OncoType results and my first Prolia injection. Yay. Apparently my bones were “terrible” even before starting anastrozole. So I’ll be joining the bone density forum too. I’ll see a radiologist on Friday for a first appointment.

    I have to say that my 4cm Grade 3 tumor has had me obsessing a lot over the past week. On the plus side, I’ve been exercising and working on my eating habits. I’ve lost 7 lbs. I’ve been wearing my Apple Watch and getting 30+ minutes of exercise daily. Current strength training is carrying my daughter’s 40 lb dog up and downstairs as he recovers from ACL surgery. Need to find something that is a bit safer for the long term.

    I have to say that I thought my stress level was better today, and then: my quiet waiting room area was interrupted by someone who turned up the volume on the game show that had been silently playing. Then, that same person started loudly filing their nails. Ugh.

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    serendi,

    Thanks! It is so precious that I have this place to talk

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Sarah,

    Sorry that you have to be here. Yeah, I also changed my life style totally, I wear tracker and do training, and learn swimming,.. I hope you got a good oncotype score.

  • ruthbru
    ruthbru Member Posts: 47,232
    edited April 2022
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    Sarah, if you need chemo (your stats look like mine, and I did); remember that chemo works best on fast growing grade 3 tumors....easier for the chemo to catch & kill them all.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    Cathy67, I’m glad to see I’m not the only one who ramped up healthier living in response to BC diagnosis. Thank you for welcoming me!

    Ruthbru, I have to say I’ve read many of your posts and am very encouraged to see your great response with our nearly identical tumor profiles. You are one of my most admired community members. I’m very willing to do chemo for long term survival.

    I can see what a great group we have, and also glad to be able to continue my sisterhood with Beginagain22. Here we are on the other side of surgery!

  • ruthbru
    ruthbru Member Posts: 47,232
    edited April 2022
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    Awww, that is sweet, Sarah, thank you. The positive thing for we who are Stage II is that after what will be a really crappy year (or so), we really should be okay and able to go back to our normal lives.....in some ways better if one makes needed lifestyle changes & really gains an appreciation of how great 'normal' is!

  • beginagain22
    beginagain22 Member Posts: 100
    edited April 2022
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    Hey Sisters,

    I saw my oncologist today and my Oncotype score of 15 got me a pass on chemo! I was very happy. Next steps: hysterectomy, lupron shots until the hysterectomy and Armidex. I will also be taking Effexor, I guess it’s supposed to help with menopausal symptoms and could help the nerve pain from my DMX. I will see the radiation oncologist as soon as they get my appointment set. My MO thinks at least some radiation is likely. I will take the no chemo pass and be happy tonight. I hope you all are feeling good and happy tonight too

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    beginagain22,

    Good news! My biopsy will be on May 4, if it is, I wish the same type as last time, so can avoid chemo.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    Beginagain22, hooray on the no chemo! I’m so happy for you.

  • katg
    katg Member Posts: 222
    edited April 2022
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    I too just found this one. and see sarahmaude on others i visit.

    This is a real community that can only be understood by those walking through it.

    Keeping it simple. I was diagnosed with Stage 2. From the start a mastectomy was listed as the choice as my tumor was 5cms. Stage 2 as it did not metastasize to my lymph nodes or anywhere. The tumor was too big and my "foobs" as others call breasts are just not big enough for a lumpectomy. It was just Dr. Ami Polverinis truth as a breast surgeon. She sent me to the oncologist who did suggest 4 rounds of chemo. Stage 2 is good, but 5cm is not. One day before my 1st chemo of Red Devil, I got the genetics test saying BRCA2!! Now 12 of carbo platin/taxol. That ended because my blood could not take it. The targeted pill of levonox(?) A chemo pill. Chemo done after 27 days.

    Mastectomy left for tumor removal Feb 9. Nothing bad found, but the tumor is HER2+ now. Herceptin and Perjeta now. Also, a blood clot diagnosed Friday. Doctor settled on Eliquis twice a day for at least 3 months, if not 6 months. Stage 2. There are so many stage 4 forums. Stage 2 feels good, yet it is still a road of twists and turns. I am grateful for all the truth here.

    My remaining breast will be with me from 3-6 more months. Today it does not have cancer. I prefer to let her go. My one barbie breast is not so bad. My same size, but as a gal at City of Hope said, yours will not sag till the day you leave this earth!



  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    katg, I’ve seen you around also. Yesterday, my reality that Stage II treatment and prognosis is more intense than I appreciated hit home. I found an OncoType simulator online and found that my tumor profile results in a high risk value 87% of the time. Heck, just the PR- is high risk 94% of the time.

    I was surprised that I had no post surgery follow up IHC for my tumor. I expect that if there is a discrepancy with OncoType results I will ask for a repeat.

    I can deal with my slightly deflated post surgery left breast. Honestly, in a bra or clothing I look great. I was go for radiation. I was thinking I had more like a 50/50 chance on chemo.

    I’m now counting on chemo, and have decided I’ll just let the hair go. I know chemo is hard. But why do the brand names for all the drugs sound like something in a mad scientist’s lab? Do they all have to sound like “toxin”? I think I’ll personally name whatever I get something like She Hulk. Or Wonder Woman. Oh, and when I lose my hair, I’m thinking I’m going to need a “Rocking My GI Jane Look” t shirt. And it won’t be pink

  • beginagain22
    beginagain22 Member Posts: 100
    edited April 2022
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    SarahMaude,

    it might not be high. I know the waiting just gives us time to spin and research. My surgeon and my MO were really surprised mine came back low. My fingers are crossed.imagewith a bra like this, won’t matter what we have to put in it, lol. Try not o worry. Hugs

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    Beginagain22, I think I need that bra. Unfortunately, I just don’t have the belly for it. Darn. It is surely a statement! And gave me an awesome grin too. Thanks. I needed that.

  • ruthbru
    ruthbru Member Posts: 47,232
    edited April 2022
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    If you need chemo, think of it as your Navy Seal friend, who is killing the terrorist cancer cells for you. That's what I visualized......I wasn't a 'spiritual journey' person (although there is absolutely nothing wrong people feeling that way). I went into warrior mode and was more of a 'fuck you cancer' person (excuse the profanity, but that is the truth).

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Sarah,

    Did they order oncotype dx for you? You are node negative, if you get under 25 score, you will skip chemo.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    cathy67, yes. It’s ordered. As of yesterday. We will move my upcoming appointment in 2 weeks if it’s not back. One other interesting journal article I found is that IHC PR- status flips to PR + when the do the genomic analysis about 15% of the time. It’s not clear that the IHC is wrong, but I’m thinking the data that shows how many high risk scores are PR- may have that as a factor. All I can do is wait and do my best to enjoy a few weeks of no treatments.

    I’m seeing a new talk therapist tomorrow. I’m hoping she can help me with some skills to balance my need forimmersion in research with enjoying life now.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    ruthbru, I’m right there with you on visualizing chemo as a bad ass bad guy killer. And frankly, I sometimes find great satisfaction in telling cancer and all it’s associated misery to fuck off. Not a huge user of that word, but this has been an experience that earns no polite words.

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Sarah,

    Yes, oncotype dx is more accurate, IHC data is just used to measure eligibility for oncotype dx. Enjoy these 2 weeks, when the score is back, if it is not low enough to avoid chemo, it re-verifies chemo's benefit that is also necessary in the whole journey. Me too, I wait for May 4 biopsy and its result, dreadful waiting again.

    Will pray for you.

  • katg
    katg Member Posts: 222
    edited April 2022
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    I understand all. I was told something the same about chemo. I took it well. 12 rounds of carboplatin/taxol every Friday and just one round of the RED DEVIL. Then 27 days of the chemo pill Talzanna. Chemo my blood to such low numbers i was hospitalized. After giving platelets for 25 years, I got 1 bag of platelets and two of blood. I had tears in my eyes knowing those people were me. I gave as long as i could and 1 years after treatment, I get to return. It has taken my body 3 months after to come back to somewhat normal. Chemo knocked my tumor out 1/2 its size. Your MO knows what chemo works for what you have. If they do not, get a 2nd opinion.

    Funny you were talking about super women type bras. I bought one sports bra front closure and it was tight!!!! I did not want to get fitted to bras till my left side was removed. Today i was taking back some "after surgery" pajamas i never really liked. And i found two front closure hook bras! They fit!!!!! Yahoo. I need a few different to rotate as i wait for my surgery. I still like the Dale bra we get after breast surgery. It is comfortable. My MO said do what feels good!!

    Lastly, i had long red hair since i was 20. 40 years. I never cut it. Trimmed. Naturally curly too. My MO talked to me about a cold cap, as did my breast surgeon. Both said it is really best to just let your hair go. It will grow back. It is painfully sad, but it is possible. Check out headcovers.com. I have bought a number of caps that hand wash well, and wear well. Bamboo and cotton. I also have a curly what i call "bozo the clown" wig and one that hits my shoulders. In the end I mostly wear my beanies. On some outings, wear the wig. I am still working from home and feel like a wig is what i will wear. I work at a college in an office, and people asking is not what i want. My hair has probably grown 1/2-1 inch. It is not the color o cut off, it does have wave and curl. Acceptance was the key. If you do not like a bald head, wear a pretty cap!!

    I always have things to share.................

  • beginagain22
    beginagain22 Member Posts: 100
    edited April 2022
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    SAramaude,


    You tell it to fuck off, hulk out or eat a vat of ice cream if it makes you feel better! This damn waiting is merciless. I picked up prescriptions today. I don’t think I will need breakfast anymore. I will just take pills, man I feel old. Gonna need one of those pill organizers. I was reading the warning labels and did get a chuckle out of the one with the stern recommendation against breast feeding, lol. No worries on that one

  • wondering44
    wondering44 Member Posts: 261
    edited April 2022
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    beginagain22,

    I didn't realize we could post the "f" bomb up here. Probably a good thing. :-)

    NICE INEED!!!

  • seagoddess2021_
    seagoddess2021_ Member Posts: 10
    edited April 2022
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    Katg,

    Everything you said is so true. Done with AC/Taxol. Lost all my hair but growing back crazy curly. I did wear beanies and wigs because I was so self-conscious. I really think I was wearing them so others would not be uncomfortable. Forget that now. This is me, accept it people. Whatever makes you comfortable, all so personal. Now all I need is that bra! Rita

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    My breast imaging center has framed bedazzled bras on some of the office walls. Most are artsy or pretty. I’m thinking that they definitely need some warrior goddess versions. Honestly, the more I learn about my, “really early stage” cancer and the fact that there is no outcome in which it doesn’t change my life forever, the more I’m aware that we need to be wearing battle gear, or at the very least, some great tennis wear. Cause every time something gets served at us, we need to be able to respond with a loud grunt and fiercely return that freaking yellow cancer ball and it’s treatment side effects too.


  • katg
    katg Member Posts: 222
    edited April 2022
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    sarahmaude....you and all are funny. Cancer is serious, and we must stay strong to fight it!! As i go in for Perjeta and Herceptin infusions, i go in with a "can do" attitude. I am not looking at this as a one year of every 3 weeks. My cancer gene says it is a lifetime a day at a time. Once that treatment ends, I may have another.

    There is also a PARP treatment. It blocks the PARP enzymes in cells. Helps repair DNA damage. One is for me targeting BRCA2. At City of Hope in Duarte and other Cancer Treatment centers across the country, it looks like if you are willing to be in on new treatments you will get to. I shall be open to anything as i age. Cancer will not win! Thinking of Katy Perry- I am a tiger- Your going to hear me ROAR!!!

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    Katg, I know you are fierce! I can read between your lines and it’s clear. I think we are all serious; that doesn’t mean I’m going to stop finding humor, absurdities, and even some joy in this oddly mixed lemonade that is my new constant drink. I’m in this game for as long as I’m able. I’m glad for you and all my BC sisters who are here to experience these emotions together. I’ll be watching for any opportunities to improve our odds, and as there are any chances to help advance our ability to be better, I’ll certainly consider how I can help. Roar!

  • katg
    katg Member Posts: 222
    edited April 2022
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    Yes. Let cancer hear our ROAR!!!!! We are here and we will do most any treatment that kills the cells. I am glad to have bc.org and fellow women like you all to share the journey.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited April 2022
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    I had a good visit today with my RO. Of all my providers, she and her nurse were the best at answering my questions and helping me feel less disoriented with my plans. In the unlikely event I don't need chemo, I'll have my radiation simulation in a month. It's scheduled, but can be changed. She also encouraged me to consider cold capping. She was more encouraging than MO. It makes sense with the order of treatments that she would have a good perspective on the success of the process. I've been in touch with Penguin Systems and I think I may be able to manage it. My biggest concerns are having a helper and getting the dry ice. My daughter in college will be home around May 12, and I've got a friend who might be willing to help if I have my first session before then.

    RO also assured me the delay in OncoType DX results isn't impacting radiation if I don't have chemo since they don't want to start until my surgery is well healed.

    I called OncoType today and confirmed that I'm in their system. MO did order it the day of my visit, but my pathology samples still hadn't arrived. OncoType rep said they will follow up with the hospital pathology today. I'll check again on Monday to see. I'd heard that they were really good talking to patients, and I agree.

    Overall, I'm feeling more settled today. Even though nothing has really changed, I can see lines being filled in on my most likely path, and the conversation with the RO was very helpful.

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    Sarah,

    It is so good to know that you are feeling better. Pray for your oncotype score!

  • beginagain22
    beginagain22 Member Posts: 100
    edited April 2022
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    SarahMaude,

    It’s so hard to wait. I have fingers and toes crossed for you. I meet my RO next week. I realized that my whole team is women. I can’t believe I hadn’t noticed it earlier. Kinda cool

  • katg
    katg Member Posts: 222
    edited April 2022
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    From my surgery I ended up with a blood clot 2 months later. My sister had just the Ovaries and fallopian tubes out and her surgeon gave her 30 days of blood thinner shots. I had those two removed and a left mastectomy. They only gave them at surgery for me. We are both at cancer hospitals on different coasts. This is important for anyone having surgery.

    My older sister, who has answers for all of us, ask if my blood clot swelling went down today. In a week. Really? This sister wants to take her chance on getting tested for BRCA2. I have it, her younger sister and her daughter were tested and they also have it? Not thinking my sister is realistic. I tried telling her about my mastectomy and why i have a barbie breast. She waved her hands and said she did not want to hear it. I told her in a gentler way.

    Also. during Covid she was one of my 2 to visit me in the hospital. She got in for my port being put in, but then she was banned. Refuses the vaccine!!

    I hope all of you relax this weekend.......