Decision Making is Difficult

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birdsndognow
birdsndognow Member Posts: 24
edited February 2020 in IDC (Invasive Ductal Carcinoma)

01.31.20

Hello all.

My breast cancer was dxd a few months ago.

So far I've had a lumpectomy in October, and last week started anti-estrogen medicine.

Here's my main data ---

mid sixties

lumpectomy in October 2019

invasive ductal carcinoma left breast 2.4 cm

carcinoma in situ mm size, left breast

fibroadenoma left breast

2 out of 2 sentinal nodes positive

margins not clear on one side of the larger tumor

grade 2

ER positive

PR positive

HER2 negative

KI67 30% (medium-high)

Cancer Antigen 13.8U/mL (low)

After lumpectomy I had a seroma in both my breast and axilla

cording all the way down my arm to my wrist and hand.

My surgeon thinks I will be ok with hormone stripping drugs and radiation.

My oncologist first suggested that longer survival after lumpectomy could be attained by node dissection, chemotherapy, radiation, and anti-estrogen therapy.

So finally, the plan (because I don't want any more surgery) is anti-estrogen therapy, (started last week) and radiation (to start late next week).

Aside from having BC, I am a Granny; I spin, crochet, and take care of my disabled husband and caged birds - a cockatoo, two 30 yo cockateils that I hand raised, and two parakeets.

Thank you for reading, and sorry it's so "clinical" but this is just to say hello and ask that if any of you have similar situations, good or bad, please reply. ''Watched many YouTubes, did a little white paper research, and talked to one ACS volunteer; now I don't really know what to think. :-)

Take Care, nice to meet you.

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Comments

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2020

    Are you saying you're trying to decide whether or not to do chemo? That would absolutely be the recommended treatment for positive nodes.

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  • birdsndognow
    birdsndognow Member Posts: 24
    edited January 2020

    Hi Ingerp! I should have said decision making was hard. The doctors had their planning and I guess ultimately they decided on everything but the chemo.

    The oncologist said that blood cancer antigen marker was very low, so was more confident that it wasn't needed, than at first. She wanted me to have lymph node dissection. I refused, b/c of the increased risk of lymphadema (I had bad cording, and big seromas/lymphoceles in breast and armpit) (NIH studies).

    Plus, I have acute chemical allergies, sensitivities; and sarcoidosis; so wasn't happy at the idea of chemo.

    With the radiation, I realize I may still get swollenness. The surgeon said there's a bigger combined risk for lymphadema. He felt survival rates weren't any different without the chemo.

    Thank you for your reply. I will read up more, after what you told me. I hope you're doing ok after two bouts with this monster.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    Yes, rads can cause or aggravate lymphadema just like surgery. But Ingerp is right. Since you already know that 2 nodes are positive, it's unusual not to have either node dissection or chemo. Yes, hard choices. I think I'd get a second opinion with a different MO. A surgeon cuts - that's what they're trained to do. An oncologist is the doc who should be assessing the future risk & possible treatment.

    For the cording - have you been referred to a certified, trained LE specialist? I would definitely get a baseline measurement and assessment. You may find this web site useful.

    https://www.stepup-speakout.org/


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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited February 2020

    I thought the TailorX study for no chemo included up to three positive nodes if the oncotype score was low? I had one positive node (only the sentinel was tested) and with a score of 17, didn't need chemo. But I was in my late 60s, which might be a factor, although my oncologist had me scheduled for a port before the oncotype results came back a few days before my re-excision.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    Good call Alice.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited February 2020

    Birdsndognow, welcome and thank you for joining our community. Because so few clinics provide written advice, I'm posting the radiation guidelines I received in hopes they are useful. What helped me a lot during RADS was having a posse, so you might want to check out the "starting radiation in January 2020" thread, or start one for February 2020. Please do let us know if you have any questions.

    image

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  • letsgogolf
    letsgogolf Member Posts: 263
    edited February 2020

    birdsndognow Did you have the Oncotype test? I believe that is pretty standard these days and will determine the possible need for chemo. It is used for up to 3 nodes in ER+, PR+, Her2- patients. Also, radiation to the node area can done if there are positive nodes. I had only 1 of 8 nodes with micromets and was advised to have radiation to the node areas. So far, so good.

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  • birdsndognow
    birdsndognow Member Posts: 24
    edited February 2020

    Hi Minus Two! Thx for your reply, and the link to the lymphadema topic, I bookmarked that for sure, b/c that cording was painful. It has gone away, and I'm happy that there's no swelling at this time, and hope it stays that way.

    The MO wanted to do the chemo, but she wouldn't do it unless I agreed to the LN dissection, but I wouldn't b/c I was so scared of more surgery and the lymphadema.

    Thanks again, hope you are well.


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  • birdsndognow
    birdsndognow Member Posts: 24
    edited February 2020

    Hello Ms Alice! Thx so much for your reply and that info about that TailorX study! I will look that up, it must have been their rationale. The oncotype I was told was very low. A Cancer Antigen 27.29-TOSOH was 13.8 U/ml was low (is that the same?). I'm 66.

    "Cancer's a bitch, but I'm a bigger one with more practice." Lol!!! That's great! I told my husband what you said and he laughed.

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  • birdsndognow
    birdsndognow Member Posts: 24
    edited February 2020

    Georgia1, Hello! Thanks very much for posting those RADS guidelines! It will be helpful come Wednesday, so I appreciate it. I will post in Starting Radiation in February very soon. Maybe we can help each other some how.

    Have a great day. Oh! "Cancer touched my breast so I kicked its ass." Hahahahah! Another great one! See Alice's ^^^^^ . My husband laughed at this too!!

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  • birdsndognow
    birdsndognow Member Posts: 24
    edited February 2020

    letsgogolf, I thank you for your nice reply to my post. My MO said their final plan was no chemo because the Oncotype was very low. A Cancer Antigen 27.29-TOSOH was 13.8 U/ml very low she said (is that the same?). It's weird, even they all said so, because that Ki67 was 30% for me (borderline high).

    I am very glad you have done well with S/R/H/T therapy, it gives me alot of hope. You all aresooo knowledgeable about this whole thing, and I look forward to reading your posts.

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