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Did your doctor talk about your Ki67 %

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nilespark44
nilespark44 Member Posts: 34

Hello - I have IDC Stage 2 (++-), and I am one week out from my bilateral mastectomy.

My lymph Node pathology reports were posted online, and from what I can read, there is no cancer in my lymph nodes. However, my Ki67% - was reported at 43%. so I have a Ki67: 43%. Is that bad?

Did your doctor put much stock into your Ki67 number? I was just wondering what others have learned about their Ki67 number and how it might have impacted treatment.

Maybe now that I had a BMX it doesn't even matter what my Ki67 score is?

Thank you

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  • ebfitzy
    ebfitzy Member Posts: 69
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    I am still waiting on my bilateral mastectomy, but all the surgeon told me was that I still MAY need chemo because of the high grade and the high Ki-67. But im only stage 1 and doesn’t appear to be in my lymph nodes. My ki67 is 40%. But I wont know for sure of my treatment plan until I see my oncologist for the first time after my surgery. I’ll be interested in knowing how’s your oncologist treats you! I’m so anxious over here. My diagnosis was 2/1 but I still haven’t received a surgery date.

  • mandy23
    mandy23 Member Posts: 111
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    Hi @nilespark44 and @ebfitzy -

    Although KI67 is one indicator of the BC biology, I think it has to be looked at as only one piece. I had a Ki67 of 40% (considered high), but also high ER+, low PR+ and Grade 3. I had no positive lymph nodes and was Stage 1. The best thing to try and determine chemo needs is the Oncotype test. You might want to ask about that soon as it does take a week or 2 to come back. I was really resistant to doing chemo—-just hated the idea. However, my Oncotype test came back high, so really not much choice if I wanted to reduce my odds of recurrence.

    Know that if you do end up with chemo, you WILL get through it. It's another club no one wants to join, but you do what you gotta do.

    For now, take things one step at a time.

    Take care. You'll get through this whatever is your treatment plan!

  • nilespark44
    nilespark44 Member Posts: 34
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    mandy23, ebfitzy  - thank you both for your responses. I did hear from the doctor's office today, and they confirmed that the cancer has not progressed to my lymph nodes. When I asked about KI67, the nurse said the next step was to get the Oncotype report back and see an oncologist. It will take about 2 weeks to get the report back.

    Ebfitzy, I hope you are closer to a surgery date now. I just had my BMX last week, so if I can help answer any questions about the surgery or items I used to help me reover. Let me know!

  • nilespark44
    nilespark44 Member Posts: 34
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    I agree, I won't know anything till I see the Oncologist and get the OncoType report. Till then….I wait. I am now getting impatient….as I want to know what all this stuff means that I am reading about.

    My diagnosis was 2/11, and I had surgery last week. I had a skin-sparring mastectomy with expanders. So far, the recovery hasn't been bad at all. I've managed the pain with Tylenol and ibuprofen. They did give me something stronger for pain, and I've taken it 2x to help me at night with sleep.

    I've been walking a little bit each day since surgery and doing the arm exercises they told me to do, and I swear it helps. Please, if you can, get up and move around after mastectomy. Even if it's walking in your backyard or house, movement helps.

    If you have any questions about mastectomy, please let me know. I just went through it. Below are some items that have helped me this week!

    Some items that helped me from Amazon:

    Chest Pillow from Amazon: MOYOAMA Post Mastectomy Pillow with Cold Pack - Recovery After Breast Cancer Surgery, Breast Augmentation - Lightweight Post Surgery Pillow with 4 Built-in Pockets to Support Healing

    I slept in my bed with this from Amazon:

    Lunix LX5 4pcs Orthopedic Bed Wedge Pillow Set, Post Surgery Memory Foam for Back, Leg Pain Relief, Sitting Pillow, Adjustable Pillows Acid Reflux and GERD for Sleeping, with Hot Cold Pack, Brown

    Mastectomy Shirt From Amazon: I wore this shirt home from the hospital daily. I have a few. It's not as expensive as some other mastectomy shirts, and it's comfy, and the snap-buttons and inside pockets are excellent. Amazon: RENOVA MEDICAL WEAR Mastectomy Recovery Shirt with Drain Pockets

  • artwish
    artwish Member Posts: 9
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    Sept. 2022-Left breast. 1A, or stage 2, ER 100%, PR 70%,HR-2 Neg. (score +1), Ki-67 8%, 2 lymph nodes positive with cancer. They did not offer a mastectomy since it had entered my nodes. Anastrozole for 5 years, max radiation to left breast. DNA test -14%. So they say , I have a 85% chance to live 10 more years. Average for my diagnosis is 41 Months.

    Anasrozole has hit me hard. Weak, bone and joint pain, eating issues, weight down 10 pounds, night sweats and hot flashes, mood swings and sleep disruption. I am half the person I was , anger and frustration became the norm. Searching for hours on line to understand what was happening

    Nurse said I should not be having so much trouble with adjusting to Anastrozole and there must be something else was wrong. Spent time going to my GP looking for answers. nothing came out of that.

    Worked with a dietitian and have seen some improvement.

    Currently my left eye has been swollen for weeks, pressure and shots of pain radiating down nose and up head. Tried antibiotics for 10 days with no change. That was 2 weeks ago. They said to wait and see if things got better . Returning to GP this am, possibly more antibiotics.

    My situation is also compromised because I can not have a MRI which is recommended to find new cancers that might develop. I have 13 screws and a metal plate in my left arm that reacted during a MRI and caused nerve damage on my entire left side of my body.

    Water Fitness has helped more than anything for body pain. Spend 2 days a week for 1hour in a therapy pool working muscles and joints. Always feel better after that .

    Thanks for listening and I hope things get better for you.

  • mandy23
    mandy23 Member Posts: 111
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    Hi @artwish -

    Wow. Really sorry to hear that all this is happening to you. 😒

    Have you talked to your MO about switching to a different AI? There are 3 of them and some people have don't have as bad reactions to one or another. They are Anastrozole (Arimidex), Exemestane (Aromasin), and Letrozole (Femara). It seems like if this all started after the Anastrozole, it would be worth trying a different one? Are you able to see the MO if the the onc nurse isn't helping? Or is there a different nurse or MO that you could see to hope they will have a different perspective? If the oncology department isn't responding to your concerns, maybe your GP could help you find a different onc group?

    Sometimes you do need to advocate for yourself….unfair as it is. One would hope they would listen to your concerns. Good to hear that at least water fitness is helping. By all means keep doing that.

    Hang in there and I hope you find some relief soon.

  • nilespark44
    nilespark44 Member Posts: 34
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    I _ agree with Mandy23; please talk to your medical oncologist about all this. Advocate for yourself. This is not the way you should feel. I am thinking of you and hoping your days are getting better. Please respond if you need more advice or want to vent.

  • artwish
    artwish Member Posts: 9
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    Thank you, Might have put too much of the negative in my first post. Things are better than a year ago mostly due to water fitness. Last Spring, I tried Tie Chi & Yoga, but my left arm would hurt too much. Took a class called Water Walking and my arm felt better right away. It is also helping to keep my fast developing arthritis from getting worse. A good friend who is suffering from the side affects of chemo works out with me. We are both doing better. As for changing meds. not going to happen. Chemo is the other choice with no better out come. My research says this is the best choice foe my age, 72. I was very active kayaking, gardening and dancing, Not to mention caring 50# boxes of clay for my work. I just miss my old self ,but the new self is getting better.

  • tigglewinkle
    tigglewinkle Member Posts: 20
    edited May 11
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    Can someone tell me where this information is? Is it on the biopsy? I see this written on my report but I don't know what it means: "Primary antibodies (ER, PR Ki67) clone EP-1, clone PgR1294, clone MIBI, respectively."

    Does anyone know? Also—don't know why my signature says HER-. I haven't had those results yet.

  • nilespark44
    nilespark44 Member Posts: 34
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    Your Ki67 might be in biopsy, or you get that information from breast surgeon.

  • artwish
    artwish Member Posts: 9
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    All the other harmon therapies do not fit my prognosis so I can not switch to another one and chemo would be much worse than Anastrozole. I am feeling better this month but still can not do very much without getting very tired. I am hoping my diet changes will help. I have started putting some weight back on and that makes me feel better. The last talk with the nurse was helpful too. Thought I was doing all I can and things will get better which they have. I have stopped stressing about as much as well.

    thanks for your concern.

  • clars
    clars Member Posts: 46
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    My ki-67 score was 75%. Yes. I freaked out. But my oncologist said it’s not routinely measured and just an indication it is fast growing (which we knew anyway from the grade). They didn’t even measure it after chemo (I had surgery after chemo). They told me not to worry about it. It’s one part of a big picture.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,962
    edited May 26
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    clars ,

    Thank you for your post. We’ve had a few members concerned about this issue so it is worth restating that Ki67 is not used by all oncologists because it doesn’t result in anything actionable and may be meaningless for many.

    Everything you learn about your breast cancer is not of equal significance i.e. the Ki67 score is of minimal significance and not used by all MO’s. There is no reason to stress out over something whose importance is minor (and to some MO’s non-existent) .