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Local Recurrence Chime In

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  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Thanks KBee. I will be following up with my MO next week and see where we go from there.

    I did find my lab results and the hilar lymph nodes are metastatic. The MO recommended Ibrance and Fulvestrant as a starting point, so expecting that l will be starting that next week. All this stacked on top of my husbands retirement from the military after 39 years, so will start treatment in the military system then swap across the country in August to a civilian provider. Also, we have missed much time together over the years and had hoped that retirement would be a great time. Now the uncertainty is devastating.

  • edwards750
    edwards750 Member Posts: 1,568
    edited May 2019
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    I took Arimidex for 1 year and then my MO switched me to Tamoxifen because Arimidex attacks the bones and I already had osteopenia. I took Tamoxifen for the remaining 4 years. It was no walk in the park but the SEs were manageable. I know a lot of women have had debilitating side effects from the drug so they cease and desist.

    A friend’s daughter opted not to take Tamoxifen because she would be thrown into early menopause. Her call. She’s 3 years out from her DX. She did have chemo and radiation.

    Frankly I was scared NOT to take something. I think it afforded me an extra insurance policy against a recurrence. My MO took me off Tamoxifen when I reached my 5 year milestone. I’ll be 8 years out this August God willing. Btw my Oncotype score was 11 with an 8% chance of recurrence. I had IDC, Stage 1b, Grade 1. Lumpectomy and 33 radiation treatments.

    I’m kind of surprised an oncologist would tell a patient that she shouldn’t worry about taking meds even with a low Oncotype score. The test results clearly state the recurrence score is based on taking, in my case, Tamoxifen for 5 years.

    Diane

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited May 2019
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    Edwards750/Diane. The side effects were crippling for me. Tamoxifen was not an option because my Mom is a stroke survivor. I am among the 20% for whom there were simply no options.

    All. I am trying to add my new diagnosis without editing the original. I could not see how to do that. Help!

    All the best

  • maureenb
    maureenb Member Posts: 47
    edited June 2019
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    Just diagnosed with local recurrence in the exact same spot as first cancer. Had double mast, chemo, herceptin, tamoxifen and arimidex as long as i could stand them but still got a recurrence. I am actually very thankful at this moment because it could have been worse. I was so worried that I would have distant mets but so far (PET scan) looks like it is just a local recurrence. Will start with lumpectomy, radiation, and some oral meds. Still a scary road, but thankful it hasn't spread. Praying for all of us to get through this together.

  • Astrid
    Astrid Member Posts: 1,033
    edited June 2019
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    so sorry to read of your recurrence

    But relieved for you that it is local.

    Wishing you a complication free process and many cancer free years ahead.

    Heart

  • KBeee
    KBeee Member Posts: 695
    edited July 2019
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    maureen, sorry you are dealing with this local recurrence. I'm thankful that it has not spread. Hoping your plan gets put into action soon.

  • maureenb
    maureenb Member Posts: 47
    edited July 2019
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    had my lumpectomy and they didn't get clear margins! this sucker is very aggressive. have to have a re-excision on the 5th and then radiation after that. also just had a bronchoscopy to check for lung mets and my throat is so sore, but so far looks like no lung mets. how's everyone else doing?

  • maureenb
    maureenb Member Posts: 47
    edited July 2019
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    moving soccer mom- so sorry to hear you had some lung nodes test positive. i just had that same bronchoscopy done and i am also praying for sarcoidosis. my mo said i was getting ibrance and femara either way though. i had a hard time with tamoxifen and arimidex the first time around and stopped after 3 years. i'm going to have to take them this time though. what were your worst side effects with the ais? i honestly can't remember why i couldn't tolerate them. i know the hot flashes were a big part, but i have them anyway even without the ais. tiredness, joint pain? i'm definitely not looking forward to hair loss from ibrance, but at least it's not total hair loss, i hope.

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited July 2019
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    Hi Maureenb. Welcome! But I am so sorry you are here. I had a horrific experience with Arimidex (over 2 weeks- 15lb weight gain, extreme vertigo, screaming nightmares, destructive joint pain and finally a 4 day headache unrelieved with NSAIDs and tylenol combined). When I was diagnosed with the recurrence and mets, I told the oncologist no AI's. On those drugs is not living for me. My mother is a stroke survivor, so no Tamoxifen. I cross my fingers daily that I am able to tolerate Faslodex and Ibrance for a really long time. I have had some hair thinning with Ibrance, but most of it is still in place, so I just grumble to myself. The disappointment to me is the continuing fatigue. I have been griping at my doctors for 3 years about crushing fatigue (could not even do dishes without sitting down), and the fatigue remains. Lots of folks are doing well though, with some even working, so everyone's experience is different. I hope you have a great experience with as few side effects as possible. There is a long Ibrance thread, with lots of folks and experience, so be sure to hop over there also!

    All the best!

  • maureenb
    maureenb Member Posts: 47
    edited August 2019
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    thanks so much moving soccer mom! i will check out the ibrance thread too. i am sorry you are having that horrible fatigue. that's miserable. i am going to try to keep working but who knows.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited October 2019
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    I also posted this in the "Fourth Recurrence" forum. So how do you keep your spirits up or confidence that treatment will work? I am close, but not there yet, to throwing in the towel. My energy is good, and I still enjoy the outdoors and walking my dog. The DR has not used the word recurrence or metastatic, she thinks each cancer is a "new one". ( 51 yrs at first Dx). 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery. Also contacting research clinic to see if they have other treatments available.

  • maureenb
    maureenb Member Posts: 47
    edited October 2019
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    I think it's very difficult sometimes to keep your spirits up. You have been through a LOT. The good news is that you're still here and there are still treatments you can get. I had a recurrence as well. Just had a (lumpectomy x2) after my BMX in 2013. Everyone says they can't believe my cancer came back, so rare, so unusual, etc, but it did. I thought I did everything I could. BMX, chemo, herceptin, tamoxifen (but only 2 years). Was having really bad SEs from tamoxifen so I asked if I could stop and my Dr. said I could. I wish I had stayed on it, but who knows, it may have come back anyway. I am supposed to start Femara and Ibrance too. I'm really scared about the SEs and quality of life stuff, but I guess this is what we have to do. Are there studies which show that these meds might keep you from getting cancer again but you wind up breaking bones and having heart problems? Cancer doctors seem like they just want to get rid of cancer. Then what if your cancer treatment gives you heart disease? Or constant bone pain/broken bones? It would be nice if you could have a "whole body" doctor who could balance everything out. There is still so much we need to learn about cancer. We need better medicines that don't have so many bad effects. Meds that only target cancer cells and not all of our healthy cells too. I fear I am going to have a terrible time taking these medicines. And I'll probably stop taking them. And next time it won't be a recurrence, it will be mets and stage 4. It's honestly very depressing so I understand when you ask "how do you keep your spirits up?"

    I did meet a very positive woman at my MOs office the other day. She had stage 4 disease but she was energetic and seemed happy and was talking and laughing with everyone. She has survived for 9 years with stage 4! She's had side effects and had to switch drugs many times, but wow she was very inspiring. She's kept working as a special ed teacher throughout it all, too! Probably positive people just approach everything with positivity-- even a horrible diagnosis like this one. And those of us who are "glass half empty" or pessimistic, have an added challenge to try to keep positive. I think you just have to hold on to what is most important to you. Even on bad days, I hope we can find things that bring joy to our lives.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited October 2019
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    thank you maureenb - I share those concerns and anxiety. Day 2 of the Arimidex/Ibrance. I might be farting a little more, but some days are like that. I'm hoping to see an ND who specializes in cancer patients. I don't expect her to have any cures, but she might have some ideas on nutrition/diet, supplements, support groups, that would help with cancer and SEs from treatment. As I read "Anti Cancer Living, Transform your life and Health with the Mix of Six" Lorenzo Cohen and Alison Jeffries, I find that "community" and support are what I lack in those six. I looked at "LiveStrong" at the local Y, but they required me to fill out extensive health information, which I was not willing to provide. The Oncologist has not used the word recurrence or metastatic, she thinks each cancer is a "new one". 51 yrs at first Dx, 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery

  • pesky904
    pesky904 Member Posts: 263
    edited October 2019
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    BGRS, I'm surprised the Livestrong program required so much medical info. I did the program at my local Y and it just required my oncologist to sign off that she had cleared me to attend, but that was really all.

    I really benefited from the Livestrong program and met some really lovely people in it, so I'm sorry to hear you had this experience.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited October 2019
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    Pesky904 - thank you for the suggestion that I ask my oncologist to sign off that it is ok to do the Livestrong. When I talked to her about the local Livestrong requirement (health, rx history etc), she was not surprised, since they need to know limitations/restrictions etc. But maybe jsut a note from her would help. I will check into that.

  • pesky904
    pesky904 Member Posts: 263
    edited October 2019
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    You're welcome! I hope you get to join and meet the same kind of wonderful people I did!!