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Scared of TCx4 chemo - should I do it? Stage 2 IDC

toutvabien Member Posts: 7
edited September 2021 in IDC (Invasive Ductal Carcinoma)

I'm new on here. As a last resort before the first chemo scheduled in 11 days, I wanted to see if anyone has input.

First off, I'm 36 with stage 2 IDC grade 1 (multifocal, up to 2.9 cm) along with extensive 8cm DCIS (intermediate grade). I had 7 biopsies since 2012, always benign - fibroadenoma or papilloma - except the one in May 2021. Only my mom had breast cancer in the family. I had a unilateral mastectomy with expander. The plan was to do radiation of my chest wall (disease was very close) and endocrine therapy. However, due to oncotype being 21 and my age (36), my confusing case was presented at tumor board where everyone agreed about proceeding with TCx4 chemo. Does anyone have any thoughts about this? I'm scheduled for chemo but still having doubts and I'm scared of the longer term risks. Please share...I'd greatly appreciate it.


  • melbo
    melbo Member Posts: 266
    edited August 2021

    ultimately the decision is yours, and you can ask for a second opinion from a different hospital if you have doubts about the plan.

    Here is my input though, as someone who had no questions that chemo was the right choice because of the HER2 in my cancer: chemo almost certainly isn’t as bad as you think it will be. It sucks. A lot. No question about that. And different people react differently to it — with some having extreme side effects and some with only mild side effects. I was lucky and only had mild side effects while I was going through. It still knocked me on my butt and made me vow to never take my good health for granted again, but it was all tolerable. The younger and healthier you are to begin with, the better the chance that the side effects will be mild.

    The more long term things I am dealing with are fatty liver, which only means I can’t drink booze very often, some creakiness in my knees and ankles that goes away once I start moving, and some very mild tingling in my hands that doesn’t affect function at all. And for all of those my oncologist believes they will eventually resolve themselves. Other than that I generally feel fine.

    The other thing to consider is your willingness to accept risk and how you would feel if you had a recurrence or even worse, a spread to the rest of your body down the road. How hard would you be on yourself in that situation if you didn’t throw everything at it when you had the chance? Because what a lot of new people don’t understand (I didn’t when I started and I apologize if you know this already) was that while the cancer is confined to your breast it’s curable. Once it spreads to the rest of your body it can’t be cured anymore and is considered a terminal diagnosis. Granted, some people get many, many years out of treatment and it’s not immediately terminal — but the overall survival rates for stage iv breast cancer are still grim and measured in a few years. And even those who get many, many years out of treatment are constantly in treatment for the rest of their lives and are always waiting to see when the cancer will try to kill them again.

  • emotionalpond
    emotionalpond Member Posts: 31
    edited August 2021


    I had 4 rounds of TC and was super scared when I went in. I found it not to be as bad as I thought it would be. It went like this Treatment day and 3 days after felt great. Day 4 to 9 felt like crap but it was do able. I still worked (I was able to go home and work when I was rougher) I think it was mostly because of the shot I had to take for 5 days (Grastofil) I did loss my hair but am 2 months out and am fifty shades of grey already! Honestly it's totally doable. Take the meds when you need them and you should do good.


  • jennyjo20
    jennyjo20 Member Posts: 28
    edited August 2021

    Hi Tout, I had a somewhat similar situation. I was a little older (42) and had a slightly higher Oncotype score (24) but also fell into that grey area and the decision was left to me. I asked myself how I would feel if I had a recurrence, which I understand is possible no matter what I decided to do. I personally needed to feel like I did everything I could so chemo was the right choice for me. I was able to work through the whole thing. I cold-capped and only told the people I wanted to tell. I did my infusions on Fridays and took the weekend to recover. Unlike many other people here, my oncologist doesn't use nuelasta or neupogen or any WBC stimulating injections unless people need it, so that might be part of why I had an easier time. I never really had any nausea but I felt pretty BLAH for a couple days after each infusion. The worst part for me was just being fully and newly immersed in the stress of having a breast cancer diagnosis. I've never had any regrets about my decision to do chemo. I hope you are able to make a decision you feel comfortable with and I agree with Melbo that you could get a second opinion if you think that would help you to feel more comfortable with whatever decision you make.

  • dres123
    dres123 Member Posts: 45
    edited August 2021

    My wife (39) just finished her second of four rounds of this chemotherapy. It's not easy, but it's not as bad as she thought it would be (her words, not mine, I'm here for support). The worst side effects, for her, hit on the second through fifth day. By the seventh or so day afterwards, she's mostly ok (but not totally, since the side effects linger between each three week period). So far, she's mostly had nausea, bone pain, fatigue, and some mouth sores/taste issue. She has been cold capping and so far she has not lost much hair at all.

    It's not easy, but I think you should consider it. Feel free to PM me.

  • oldladyblue
    oldladyblue Member Posts: 289
    edited September 2021

    Thank you, Melba, for explaining above (I am quoting you):

    "Because what a lot of new people don't understand (I didn't when I started and I apologize if you know this already) was that while the cancer is confined to your breast it's curable. Once it spreads to the rest of your body it can't be cured anymore and is considered a terminal diagnosis."

    None of my doctors have said that to me, since June, when I was diagnosed. Even after surgery, and my Oncotype test score of 28.... I am a "newbie" to this site, and I just searched "should I have chemo?". I am very very scared of the side effects, especially since I am turning 65 while I will be in the middle of chemo. However, I have a disabled husband and a disabled daughter that I care for, and I want to be around for years yet.

    What you said above made me stop second guessing my decision to do what the doctors recommended (chemo, radiation, hormone therapy). Each doctor that has talked to me about my cancer says "you have a lucky cancer, treatable, curable" but didn't say cautionary words about how a recurrence outside the breast would be diagnosed as terminal. They all told me "It's your choice what treatment you want". Perhaps they didn't want to add the words "but if it comes back outside the breast in the future it is a terminal diagnosis". Someone on my medical team should have told me that. I'm so glad that you did. Thank you.

  • melbo
    melbo Member Posts: 266
    edited September 2021

    old lady blue — a lot of doctors don’t want to talk about it because it’s scary. Breast cancer also has long term survivors who are stage iv,which complicates the picture some. Those long term stage iv survivors exist, but they are still considered outliers.

    The other thing to remember is that cancer is a sneaky bitch — so you can do everything your doctors tell you, eat perfectly, and exercise regularly and there is still a chance it could come back or spread in your body.

    I recommend reading through some of the chemo forums here and try to find someone in your age bracket getting treated similarly as you. If you read through their posts you can get a more complete idea of what you could expect.

  • mswife
    mswife Member Posts: 53
    edited September 2021

    I’m curious what you ended up deciding?

    Your case is a tough one, in that you have both low risk (tumour grade, zero nodes) and high risk (your age, tumour size, multifocality) features. Having said that, the Oncotype test has been validated to stratify those with node-negative disease who may/may not benefit from chemo. Your score is unfortunately in that indeterminate range (they don’t know the answer re: chemo benefits).

    My husband recently went through chemo (docetaxel and cyclophosphamide) and although it was a tough few months, he did quite well overall. it took him about 4 weeks after his last treatment to feel he was back to normal. He didn’t have to go to work through it, fortunately.

    You should know that lower grade, estrogen-positive tumours don’t often obtain ‘pathological complete response’ and that anti-hormonal treatment is considered the ‘big gun’ with these types of cancer.

    I do agree with people regarding stage 4 disease - that it is not considered ‘curable’ the way your current diagnosis is. It’s impossible to predict what might happen down the road either way, but I hope you’ve come to a decision that you’re comfortable with.

    I wish you good luck

  • toutvabien
    toutvabien Member Posts: 7
    edited September 2021

    Sorry for this late reply. I've been in a funk, just pretty isolated and down. Thank you all for your words of experience and encouragement.

    Melbo: Your words ultimately helped me decide to proceed with chemo. The morning after I posted, I read your response in tears knowing you were right. Thank you for your input. It made so much more sense than what any doctor could have told me.

    Emotionalpond: Yes, you are so right. Taking the meds as both a precaution for symptoms and when needed are especially important. I'm almost two weeks into my first of four rounds of TCx4 and only the first week or so was the worst. I keep reading that each chemo gets worse (??) and its effects are cumulative. Not sure how true this is, but I'm hoping to work through part of chemo too.

    Jennyjo20: Your words completely resonate with me. ("I asked myself how I would feel if I had a recurrence, which I understand is possible no matter what I decided to do."). I already feel like COVID stretched out my general checkup appointments and I also felt pushed to ignore a symptom. This caused me to see the MD later than I should have. My diagnosis probably came about a year late because of the pandemic. Because of this, I do feel like I have to take this chance to do the best I can for myself. I just got married two years ago and I don't feel like wasting any more time or keep thinking "what if."

    Dres123: It is so nice that you're on this community in support of your wife. I hope her treatment goes well. How is the cold capping? I'm using the DigniCap and am paranoid everytime I wash my hair or use my hairbrush. Since I'm about two weeks in, I'm waiting for the inevitable hair loss.

    Oldladyblue: While you are taking care of your family, definitely don't forget to take care of yourself. I hope you decided with the treatment that's right for you.

    Mswife: That's great you are on here getting info for your husband and that he did well throughout chemo. I decided to proceed with the TCX4 chemo with cold capping. It didn't make sense for me to do it at first because of my hormone positive receptors and negative HER2. However, the Oncotype was only tested on the largest tumor (2.9 cm). The driving reasons for chemo is that my cancer is multifocal, large-ish, and not every tumor was tested (with regards to Oncotype). There still is a chance that one of those tumors has a different biology or aggression level (at least in the back of my mind, this is certainly possible). There's also the very rare fact that breast cancer may still bypass the nodes and go into another part of the body via bloodstream. I haven't gotten a full body scan (due to no improved chances of survival according to the numerous articles I've ready), but even scans don't detect everything.

  • mswife
    mswife Member Posts: 53
    edited September 2021

    So glad to hear back from you!

    You’re right, chemo should hit any lurking cells that might be more aggressive.

    Sorry to hear you’re feeling down - it was so hard for my husband at the start, when we were sitting around thinking about the worst case scenario all day, every day. We both found things a bit easier once chemo started because then we were into a routine.

    He always felt tired for about the first week, with bone pain on days 2-6 (from grastofil - used Claritin 10 mg daily starting the day before chemo through day 4 with excellent results) and then nausea that was pretty well-managed with zofran.

    The hardest chemo for him seemed to be the last of the 4 - taste and energy took a long time to come back with that treatment - he was better by about week 5-6.

    Wishing you all the best as you get though the next few months - my husband is a little bit ahead of you so please feel free to reach out if you have any questions

  • melbo
    melbo Member Posts: 266
    edited September 2021

    while some things with chemo do get worse, in a lot of ways my first round was the worst for me because I went from being healthy to being sick in ways I had never experienced before. Plus I had mouth sores for the first round, which were awful. I was careful to rinse my mouth with baking soda and salt after eating after that and never had them again.

    For the most part after the first round I was tired and slept quite a bit, but I was still functional when I needed to be. I kept thinking things would get worse because the effects are supposed to be cumulative, but like other things with chemo it wasn’t as bad as I thought it would be