Worrying over possibility of needing chemo

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Tinkerbell14
Tinkerbell14 Member Posts: 29
edited October 2018 in Chemotherapy - Before, During, and After

Hello everyone,

You all seem so knowledgeable. Hoping you can help ease my worry a bit. I had lumpectomy with sentinel node biopsy on the 17th of this month (Oct). I got a rough review of the pathology report from the nurse but will see the BS on Nov 9 to discuss further.

I’m grateful that the node was clean and the margin was also clean. I had a 2.5 cm DCIS tumor with microinvasion less than 1 millimeter in ‘a few spots’. high grade. I haven’t seen the report myself yet but am told it was ER/ PR negative and HER2 positive.

I’m pretty sure I’ll be having radiation but wondering about chemo. Nurse said it’s a possibility but I need to speak to BS. I am horrified by the idea of it - scared really may be the best word for it.

Anyone in a similar situation who can tell if they needed chemo. The wait till my appointment is nerve wracking

Thank you so much. Wellness wishes to all on this site.

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Comments

  • Runrcrb
    Runrcrb Member Posts: 577
    edited October 2018

    most of us are not medical professionals and therefore should not be your key driver in decision making. Hopefully you like your breast surgeon and will be comfortable with his or her recommendation. I suggest seeing an oncologist specializing in breast cancer too. You should fellowship comfortable with the course of treatment you choose.

    If your subtype is as you describe (ERPR-, HER2+) and you have chemo it will be different from mine. But, chemo, while not my favorite thing, wad easier than radiation for me. Unusual but that seems to be the theme- no two people experience cancer in the same way even with the same course of treatment.

    Good luck



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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Hello

    Thank you for the reply. Yes I do have a good BS as well as Oncol at MD Anderson that I like. I will be going with their recommendation. I was just wondering what the standard course is for this since it seems my diagnosis may be (somewhat) rare and waiting until Nov 9 to hear what they have to say is getting to me. But no choice in the matter I guess.

    All the best to you🙂

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2018

    You are at the best cancer hospital in the country at MD Anderson. That is cause to know you will be getting wise advice.

    Unfortunately, no one can tell you if you will or not need chemo until your medical team does.

    Waiting is more than challenging. Chemo scares everyone, but if it is necessary, you will find a way to face it.

    All my best wishes to you.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2018

    That seems like a really long time to wait for final results and recommendations for or against chemo. Have you actually met with the MO? What was their plan for follow up?

    Generally - the BS is not the one making decisions about chemo. The date for your next visit is probably okay for a post op visit, but results should be available much sooner.

    Is there a nurse navigator that you could discuss your concerns with?

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Hi there Notverybrave,

    The nurse navigator was the one who gave results by phone. Most of it was pretty positive. The one thing that worried me was the part about Her2 being positive and it could put chemo into play due to the micro invasion but she said the doc will have to discuss that with me. It’s my understanding that the BS and Oncol will review my results before my appointment. It’s ok. I’ll just have to wait. Or I may put a call in. Thanks for replying. Good to have the support of everyone on this site. Very grateful. All the best to you.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited October 2018

    In case you need chemo, I am 2/3 through my chemo and it has been NOWHERE NEAR as bad as I had feared! Very doable!

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Thank you Santabarbarian. I have always heard the horror stories (nausea, extreme fatigue and worse) and it’s really good to hear this. You must be so happy to be close to your finish line!! Wonderful!

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  • downdog
    downdog Member Posts: 1,432
    edited October 2018
    • Chemo isn’t given for DCIS, even with microinvasion and HER2+. It is extremely unlikely that your MO would even contemplate chemo (chemo is not BS’s area of expertise), despite being ER/PR-, which means no hormonal therapy for you. Radiation will be recommended for sure. Are they doing an Oncotype DX on your sample?
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  • EdithMary
    EdithMary Member Posts: 37
    edited October 2018

    Tinkerbell14, I get the horror over chemo! Me too! And though I had clean nodes, it has been recommended to me to increase my chances of complete recovery, bringing them up 6%. I was only stage 1A, and so did not expect it, but the grade was fairly high, and my oncotype, when returned, suggested high risk. So here I go, on Friday. The thing to remember is that all chemo is not the same, and things are much improved in terms of managing the side-effects. I hope that I can report to you next week that it wasn't as bad as I expected. We shall see. One step at a time...that is all we can do in this game. And pray.

    Yours in solidarity,

    Edith Mary

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  • EdithMary
    EdithMary Member Posts: 37
    edited October 2018

    I don't think that someone with HER2Positive is a candidate for Oncotype, but perhaps I am mistaken!

    Edith Mary

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  • EdithMary
    EdithMary Member Posts: 37
    edited October 2018

    Runrcrb, please tell me about your chemo and radiation experience. Why was the chemo easier? Did you have 4 treatments of chemo in 12 weeks? I am being given the same combination, starting on Friday. My understanding was that radiation is only difficult the last week or so, with fatigue. Please explain! I had surgery, am starting chemo for 12 weeks, will have a rest, then 5 weeks (5 X a week) of radiation, then a rest, then arimidex 5-10 years.

    Curious,

    EdithMary

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Hi Downdog, This is what I was hoping to hear. The docs have not mentioned anything about OncotypeDX to me. Fingers and toes crossed. Thank you - now I at least have some hope. But will prepare myself for whatever treatment that’s needed

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Thanks Edith Mary, I imagine I may need the chemo if it decreases a chance of a reoccurrence. Guess I’ll need to wait and see what the docs say. Wishing you all the best when your treatments start on Friday. I’ll be thinking of you and saying a prayer for sure! Let me know how it goes ((Hugs))


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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited October 2018

    Anyone who has to do chemo, please look into the fasting-mimicking diet. It's a low cal near-fast for a few days prior to and through chemo day. Info is online & in the thread for August 2018 chemo people. Dr Valter Longo, USC is the expert.

    I have done this and it has totally helped my side effects. If your GI tract shuts down, it's better not to have too much residue in it when that happens. And a fast is protective to your healthy tissues and stimulates the immune system.

    There are ways to make chemo easier on your body and this is one. Icing hands and feet another. Claritin another. There are also supplements you can take, to ward off side effects. Many things your team may not mention to you! But the info is available and it is all helpful!



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  • pupmom
    pupmom Member Posts: 5,068
    edited October 2018

    Not only are people with Her+ not eligible for Oncotype DX, but people who are ER- aren't. Best wishes tinkerbell!

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  • EdithMary
    EdithMary Member Posts: 37
    edited October 2018

    No, Pupmom, I was HER2- and was a distinct candidate for Oncotype testing, which was done, and chemo was recommended. There are several criteria, and HER2- is one of them.


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  • pupmom
    pupmom Member Posts: 5,068
    edited October 2018

    EdithMary, I agree. I was talking about Tinkerbell's dx. It's hard when one posts, because we can't post under posts we're replying to.

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Thak you Santabarbarian. Interesting dietinfo. I will research it. Thanks for sharing.

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  • Tinkerbell14
    Tinkerbell14 Member Posts: 29
    edited October 2018

    Thanks to Pupmom and Edith Mary for clarifying about OncotypeDX. So glad I found this site. So much support

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