Should I get Chemo?

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muffet74
muffet74 Member Posts: 8
edited February 2021 in Just Diagnosed

I was diagnosed with DCIS in October 2020. Had a mastectomy of right breast with reconstruction on January 12, 2021. Mastectomy instead of lumpectomy bc i have small breasts and the DCIS was a large area. Successful surgery, very large clear margins, 4 nodes removed, all clear. 3.5 cm Invasive Tumor found in my breast after surgery, i guess while they were dissecting it? Her2+.

Chemo is now recommended. This is for preventative purposes only. My oncologist said there's a 60% chance there's no cancer cells floating around in my body, but there's a 40% chance that there is. I'm finding it very hard to justify going through chemo for the "chance" there might be a cell in my body somewhere. Especially when I had successful surgery with clear margins and NO lymph node involvement. Aren't the lymph nodes a HUGE factor with breast cancer? You always hear that they are the most direct way that cancer enters your body from the breast.. But now i'm hearing from the doctor, yes that's true, but cancer cells may enter through blood vessels also. It seems now the emphasis on the lymph nodes are not as important.

Has anyone else ever felt this way and/or NOT gone through with the chemo? If so, how are you doing? Does anyone have an opinion they would like to share to help me make my decision? I am 46, have 3 children (only 2 at home now--22 and 16), a VERY supportive husband, but who does not always trust the medical field (seems to be all bout making money off of people's health these days) and a supportive extended family. Taking Chemo will affect my job somewhat, I cannot lose my job--it'll just be a bit of a pain to work around chemo, if at all possible. Until I make this decision, I cannot move on with my life. I am so torn! Thank you..

Comments

  • edj3
    edj3 Member Posts: 2,076
    edited February 2021

    You said you have DCIS, then you said it's invasive. The IDC is why you're getting the chemo recommendation.

    Also, you haven't listed the details of your cancer regarding ER/PR status or HER2 status or grade. Those would be helpful to know.

  • muffet74
    muffet74 Member Posts: 8
    edited February 2021

    edj3--Sorry I'm not totally familiar with the site yet and didn't see that i needed to change my info to 'public'.

    Yes my initial diagnosis was DCIS then I had surgery and they found the invasive tumor, this is in addition to the DCIS. I am HER2+. I know "why" i'm getting the recommendation, my question is "Is going through the chemo worth it for something I don't know for sure I really need?" Thank you for your interest in my post :)

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    You have a relatively large invasive tumor, at 3.5cm, and it is HER2+. Yes, you absolutely should have chemo.

    HER2+ cancers are the most aggressive. They used to have among the worst long-term survival rates. Now, with the chemo & Herceptin combination, they have one of the best long-term survival rates.

    To your question, "Is going through the chemo worth it for something I don't know for sure I really need?", the problem is that by the time you figure out that you need chemo, the cancer will be metastatic and it will be to late for chemo to do anything but extend survival. Most cancers are in the breast for years before they become large enough to be found by screening or palpably. During this time, cancer cells can break off and move into the body, either a few cells through the lymphatic system (just a few cells would never be detected as positive nodes) or a few cells through the blood stream. With just a few rogue cells sitting somewhere in the body, it's impossible to detect. But over time, those cells will start to grow and develop into a metastatic recurrence. Once the metastatic recurrence is large enough to detect, it is too large to stop. But when it's just a few cells, those cells can be killed off. And that's how chemo + Herceptin have so much changed the long-term survival rate for HER2+ cancers. And this is why chemo is given to patients who have negative nodes and do not have any evidence of mets. If the cancer is aggressive - and HER2+ cancers sure are - there is a reasonable chance that some rogue cells are sitting somewhere in the body.

    Yes, you absolutely should have chemo.

    Edited to Add:

    muffet, take a look at the NCCN Treatment Guidelines for ER- / HER2+ cancers. Even the tiniest invasive cancer, even if it is node negative, comes with the recommendation to consider chemo & Herceptin. Once a tumor is >1cm, the word "consider" is removed and chemo & Herceptin are recommended. These recommendations reflect the risk that even these seemingly small well-contained cancers still have a significant potential to develop a metastatic recurrence.


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  • KMom57
    KMom57 Member Posts: 252
    edited February 2021

    muffet74, I normally don't offer opinions when someone asks “should I do x" because my experience is limited, and because so much of this comes down to personal choices. But I read your post and have to respond. Yes, you absolutely should get chemo if that's the recommendation you are getting.As Beesie said, there's no way you could know for certain you “need" it until down the road if it metastasizes. You don't want that. I am no expert, but I did do a lot of research when I was looking into various treatments, and in your case, there's no doubt I would do it. Your tumor is large, as Beesie points out, and it is an aggressive type. The point of chemo as I understand it is to attack any random cancer cells that might have broken away from the main tumor. The fact that your nodes are negative does not change the possibility that some of those cells could have escaped and are sitting out there waiting. You don't get a second chance on those.

    Chemo is not fun. No picnic. But it's not like the movies, at least it was not in my case. It is doable. You can live your life while doing it. Yes, it is completely worth it.

    One last thing....I get the feeling that when you say “since I don't know if I need it" that you maybe have an idea that you can just do it later if you find you need it (I.e, if it comes back). It doesn't work that way. There's no do-overs on this. I also wonder if you are getting input from people that suggest the doctors are only recommending chemo to make money off your diagnosis. I have people in my life with that type of suspicion of the medical community as well, so I know what that's like. If you are uncertain, you can get a second opinion. I'm guessing though with your diagnosis, every medical opinion will be to do chemo, but you can certainly get another opinion if you need that.

    The bottom line is, waiting until “you know you need it" is just not an option you have. Cancer just doesn't work that way. You need to understand that, whatever choice you make.

    Edited to add, because you are ER- you also don't have the option of doing hormonal treatment after. That's another reason to seriously consider the systemic treatment options you do have.

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited February 2021

    yes, definitely 100% you should for sure get chemo. You only get one chance to hit this and hit it hard, it's your best chance and is the standard of care.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2021

    muffet, I hope my post didn't scare you away. I know it's not what you wanted to hear.

    One thing you can do to better understand how much you would benefit from chemo and Herceptin is to use one (or both) of the on-line models that are available, CancerMath and PREDICT. With both models, you can input your diagnosis to first see your mortality risk estimate without additional treatment. Then you can click the box to add chemo to see how much of a difference it makes. In PREDICT, you can also click to add Trastuzumab (which is Herceptin) - CancerMath does not present this option although the use of Herceptin might be embedded in the chemo figures (I'm not sure about that but when I've compared in the past, the CancerMath mortality estimates after adding chemo for HER2+ cancers appear to be comparable to the PREDICT estimates after adding chemo + Herceptin).

    CancerMath presents mortality/survival estimates at 15 years; PREDICT gives you the option of 5, 10 or 15 year estimates. With PREDICT, one of the inputs is Ki-67, which comes from the pathology report but is information you may not have. However with a grade 3 cancer and being PR-, it's quite likely that your Ki-67 will be "positive" (i.e. above 10%). To make it easy to interpret the results, with CancerMath I'd suggest that you use Pictogram as your 'Display As' option (drop-down menu near the top on the right side of the page) and with PREDICT, where it shows RESULTS (bottom right), I'd recommend Icons.


    http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    https://breast.predict.nhs.uk/tool


    You said that your MO told you that there is a 40% risk that some rogue breast cancer cells might be floating around your body. Using these models, you can see if they predict something similar, and if so, how much you will be able to reduce this risk by having chemo and taking Herceptin.


  • muffet74
    muffet74 Member Posts: 8
    edited February 2021

    You all are so kind to take the time to respond..

    Beesie--you didn't scare me away at all.. Thank you for the detailed information and diagram. I will look into both of those links you posted.

    KMom57--I'm so glad you decided to offer your opinion! What you say makes sense.

    2019whatayear-- You get right to the point.. Thank you for that!

    I think I've been trying to talk myself 'out' of getting chemo. Not really considering myself a cancer patient. Never thought this would happen. I definitely have a clearer perspective after reading your posts. I have an appointment with my oncologist to let him know my decision this Thursday and will post an update after. I was wary of joining this community but already feel welcomed due to people like you taking the time to care. Thank you! :)

  • KMom57
    KMom57 Member Posts: 252
    edited February 2021

    muffet, I also hope I didn't scare you away or come on too strong. I rethought my post after I made it, and perhaps should have worded it differently as I really am not an expert. All these decisions really are quite personal, and everyone has to make the choices they can live with. I just really worried you had the wrong idea about chemo, that you would be able to “do over" later down the road if you happened to come down on the wrong side of that 60/40 chance your doctor told you about. Gosh how I wish that were true, that life and also cancer treatment decisions had an “Edit/Undo" button. I also know what you mean about not being able to convince yourself you have cancer. I distinctly recall getting out of the shower shortly after my diagnosis and just “KNOWING" in my soul that none of it was true. Whatever you decide to do, know that there are a whole lot of us here who are rooting for you. And know that you are stronger and more capable than you yet know.

  • YesIamaDragon
    YesIamaDragon Member Posts: 363
    edited February 2021

    Come join us over on the HER2+ group. Lots of us over there. HER2+ really was nearly a death sentence before we had the chemo + herceptin that we do now. It has been a real game-changer. Chemo sucked, but it was a bit over 4 months of my life (though I ended up doing a "targeted therapy" for another year, Kadcyla, which is a chemo drug attached to herceptin) I had a harder time of all of it than most anyone here, but I never puked, managed to keep working and mostly keep exercising, though slowly, through it all. Given the size of your invasive tumor and the fact that it was HER2+ I don't think you will find any expert who would NOT recommend chemo and herceptin (and likely perjata too).

  • smc123
    smc123 Member Posts: 71
    edited February 2021

    I had a friend who had a double mastectomy and chemo ten years ago. She was told her lymph nodes were not involved. Six years later she found it had spread to her bones. She was stable for four years and now it’s spread to her brain. I would attack this with everything you can.

  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Muffett74--we ALL dread chemo. My very first treatment is Tuesday and I am terrified. But a 40% chance is a huge gamble to take. Please... take the chemo. My best wishes to you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    Just to chime in - I am HER2+ metastatic, my two cents is to take the chemo.

    Do not gamble. You would not want to be where I am.

    The chemo you will get is doable for most people who are in general good health outside o the cancer.

    As Beesie said, the chemo-Herceptin combo has pretty much been a miracle for HER2+ people. Huge game changer. (Even for those of us already in Stage IV but so much better as a “preventative measure”)

    Good luck in making the right choice for you.


  • smc123
    smc123 Member Posts: 71
    edited February 2021

    LW422, You wrote how terrified you are for you first chemo on Tuesday. I was terrified too because everything I had seen on tv or the movies. Thankfully my experience was nothing like that and I managed everything so much better than I thought possible. I hope you have a similar experience as mine...good luck

  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    smc123--what a kind post; thank you very much. I'm sure your words help many who are facing chemo and it is sincerely appreciated. I want to get the first session done so hopefully I can relax and settle into the treatment plan. Thanks again.

  • YesIamaDragon
    YesIamaDragon Member Posts: 363
    edited February 2021

    The first one is absolutely the hardest -- all the unknowns! And now in COVID times you can't even have someone there with you. For me though, having someone with me became a bit of a burden. After the pre-medications all I wanted to do was sleep and watch Great British Bake-Offs (which I mostly re-watched later because I couldn't remember anything ) Take snacks, find out where the heated blankets are for those times when the nurses are extra busy, and don't expect to do any serious reading. The first day is the longest, because they run every dose extra-slowly. I made a point of getting up every hour to do laps of the halls in the infusion suite.

    Oh! And I found the flushes and the anti-nausea meds they gave me had a horrible taste (yes, the IV meds), and sour lemon drops were awesome. Jolly Ranchers or something like that that you like and has a strong flavor might be much appreciated if you experience the same.

    Once you are through the first one it will be much less scary!

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited February 2021

    I'll just offer the phrase I first learned on this site. It works for all phases of cancer treatment, and many other things in life.

    You don't have to be brave, you just have to show up.

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited February 2021

    I think I've been trying to talk myself 'out' of getting chemo. Not really considering myself a cancer patient. Never thought this would happen.


    Same Muffet, same! I still have trouble considering myself a cancer patient. Outside the whole breast cancer thing, I have always been very healthy no chronic conditions or ongoing medical care outside having kids and annual exams. Cancer is So Rude!

    Just show up and know you are still you! And like everyone has said chemo is not like it is portrayed--it's managable.

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

    Ladies,

    It is disappointing to hear that you have cancer especially if you’ve worked hard to stay healthy. Although you are most certainly doing yourself good by maintaining a healthy lifestyle, it most certainly does not guarantee you won’t get cancer! I wish people would look at a healthy lifestyle as a risk reduction factor, not prevention. There are a multitude of factors, some known, some yet to be discovered that might explain why we get breast cancer. Take care.

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