just diagnosed - considering treatment plan

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a2mm
a2mm Member Posts: 14
edited November 2021 in Just Diagnosed

Hello. Recently diagnosed with ER+, PR+, HER2- invasive ductal carcinoma. Had lumpectomy last week to remove 2.6 cm tumor and lymph nodes and margins were negative. Waiting on oncotyping and genetic testing to determine next steps, but oncologist seems to think chemo is in my future, which I didn't necessarily expect. I know stage and oncotype will be critical for this decision, but looking for others with similar diagnoses and wondering what treatment followed lumpectomy and why. Also looking for someone to tell me that "chemo isn't that bad" and/or is manageable and tips for how to manage. I am a busy working mom of two young kids and like to stay active, exercise, etc.

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  • kathabus
    kathabus Member Posts: 205
    edited October 2021

    Hi--You really don't know what you're up against until you get the pathology back. At the same time, I completely understand wanting to think about all the realities that might be in front of you.

    I wound up being Stage IB. My tumor was 2.5 cm (we were expecting 8mm) and I had a positive lymph node at 8mm (we were expecting no lymph node involvement). So I was very taken aback with all of that. But then my Oncotype score was low at 10. So I felt that I had bad news....but then "good" news.

    My treatment plan wound up being 6 weeks of radiation, oopherectomy and aromatase inhibitor (AI).

    If I didn't have the positive lymph node, I would have just had radiation and then Tamoxifen. But there was a trial called the SOFT trial that found that AIs were a little more effective than Tamoxifen in higher risk premenopausal situations. So I did the AI vs tamoxifen.

    You need to be post menopausal to take the AI, so I had a hysterectomy/oopherectomy. Some women opt for ovary suppression. I just felt differently and went ahead with the surgery.

    I didn't do chemo, but I would have if my oncologist would have recommended it. Many, many members will tell you that it is 100 manageable! I was expecting chemo and made peace with it if it would have been on the table.

    Good luck with everything and let us know what you find out with your pathology and treatment plan!

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  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited October 2021

    If your tumor grade was high your oncologist may be anticipating that the Oncotype will come back with a number leaning toward chemo. Waiting is the worst!

    If you do end up needing chemo....I did dose dense AC-T (one of the strongest chemo combinations) while working full time and commuting. I had chemo on Wednesdays, and ended up taking the day off, as the entire process took about four-five hours (blood test, visit with doctor, waiting for the chemo to be prepared, and chemo itself.) If you have small kids, you could likely get them off to daycare/school before heading in. I was fine that evening and the day after. Friday I was tired, and tended to lay low on the weekends. By Monday I was usually fine, and had ten days until the next round.

    I was in my late fifties, but fit. And I would say that made a huge difference in getting through it. I would swim at least a half-mile on the weekends after chemo. Felt like I was going through jello the first twenty laps, but then fine and actually felt fantastic after. Writing all this to say, yes, if you have to you can do it!
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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2021

    Chemo today isn’t like it used to be, or seen in the movies. Yes, it’s hard. But doable. Your MO has lots of options to keep you going rather well. Some ladies here keep up with life normally. Work, kids, etc. I had ac/t on Thursday with nulasta on Friday. Then I had the weekend to lay low. But I’m retired and didn’t have to go anywhere. If they suggest a port, get it. Makes it so much easier on your veins and blood labs. I still have mine 9 years later

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  • a2mm
    a2mm Member Posts: 14
    edited November 2021

    Thank you everyone, much appreciated! Still waiting for results and a plan...

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  • Juju-mar
    Juju-mar Member Posts: 211
    edited November 2021

    a2mm,

    Chemo pre meds are so much better these days, I worked my part time job (from home) duringAC/T. I would encourage you to continue exercise during treatment, it does help lessen the side effects. My teenagers said "mom, it's like you aren't even sick". I was able to cook, grocery shop etc. Just was fatigued and had a few days of stomach upset. Good luck to you! Drink lots of fluids, rest and eat well

    Julie

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  • a2mm
    a2mm Member Posts: 14
    edited November 2021

    Thank you Juju-mar, this is great to hear! Yes, my plan is to make sure I have time to focus on exercise and nutrition and general self care and my goal is for my kids to say the same! I really don't want this period of their life to be defined by my illness.

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  • BtwnStars
    BtwnStars Member Posts: 95
    edited November 2021

    I had similar results as you, also early stage. My doctors and I also didn't expect chemo, but score came back 28. It was more hard to cope with the idea than to actually get treatment. As others have said, it is not as bad as I think most imagine it to be. I also think being relatively healthy before dx, staying active, etc, does help with the side effects and outcome. That said, I think the biggest thing is just planning on the fatigue and needing to rest. It's hard if you are used to get up and go type living. With young children it may be more challenging and you should def ask for some help from family/friends. Plan for as much rest, esp days 2-4 after treatment as you can.

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  • a2mm
    a2mm Member Posts: 14
    edited November 2021

    Hello. Just found out oncotype score was 27, so starting 4 cycles of taxotere and cytoxan in a few weeks, likely followed by 4 weeks of radiation ( but genetics results could change that plan). Looking for someone to tell me keys to making it through this relatively unscathed, if that is possible and/ or what to expect.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2021

    a2mm,

    Have you checked out the chemotherapy forum? Literally hundreds of threads on what to expect before, during, and after. That would be the place to find the info you want. Take care. Here’s the link: https://community.breastcancer.org/forum/69

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  • VZPier
    VZPier Member Posts: 1
    edited November 2021

    Good morning. Thank you for this site. I just received a diagnosis of INVASIVE LOBULAR CARCINOMA, GRADE 2, WITH FOCAL ASSOCIATED LYMPHOID INFILTRATE, MEASURING AT LEAST 0.6 CM. (Positive for malignancy)

    I am interested in following posts of women similarly diagnosed (ILC, not ILCIS or IDC) so I can learn as much as possible about this specific, less common form of MBC, treatment providers, therapies, studies, etc. I live in RI. Can you direct me to the right group chat within this site? So appreciative. Thanks.
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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2021

    VZ,

    Check out the ILC forum:

    https://community.breastcancer.org/forum/71

    You can also use the search function to find other forums/threads which may be of interest to you.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2021

    ANd here's a good general chemo thread:

    https://community.breastcancer.org/forum/69/topics...


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