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How do you know if treatment worked?

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Hi Everyone,

I was first diagnosed with DCIS in 11/2019. Had a lumpectomy 1/2020. First followup mammogram indicated cancer again and I had a second lumpectomy 5/2021 followed by chemo, radiation and IV treatment for HER2+ cancer (2nd lumpectomy indicated HER2+).

I keep asking my oncologist how do I know if this is working and she keeps telling me that I won't know.

This is becoming more and more unacceptable to me. How have you all been sure that your treatment is working? I don't know even know what to ask for but at this point I'm tempted to go to another oncologist. But as all of you with cancer know - it highjacks your life and it's just really hard to get psyched up to spend time making appointments and going elsewhere.

So, please tell me - how did you all know your treatment worked - or didn't?

Jeet


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  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    You won't know. Your oncologist is correct. I'm sorry. You can't know if all the cancer cells are dead forever. The only way you will know is if you die from something else. I don't mean to be harsh, but that's really it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited January 2022
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    jeet,

    Probably not what you wanted to hear on New Year’s Day but your doc and mountainmia are correct. There is simply no way to know if every bc cell has been killed off and no way to know if dormant bc cells aren’t sleeping somewhere in the body and will wake up some day. There are no blood tests either that will show bc cells. We keep going and assume the treatment has worked until we develop symptoms that indicate otherwise. Yes, that stinks but it is reality. All the pink fluff and “awareness “ campaigns tend to gloss over this

    You certainly should seek a second opinion if you lack confidence in your current mo but if any mo tells you that they have a way of knowing with certainty that your treatment has been 100% successful run quickly as that is currently not possible.

    Sadly, though you find it unacceptable, that is our current reality. I am sorry if you were unaware of that or if it’s a shock. We all want better but we’re not there yet. Take care.

  • Jeet
    Jeet Member Posts: 4
    edited January 2022
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    Not exactly what I was looking for. Hoping that there is a scan or something. I don't expect to have a promise that I won't have cancer for the rest of my life I just want to know that when I go back for my mammogram barely a year after the first 2 crappy mammogram outcomes that I don't have to hold my breath for the outcome. If I can't get at least a year of peace after having chemo I don't know what the point of doing it was and I certainly won't be doing that again if there is no way to check if it was effective.


  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    Well, treatment is all about risk reduction. That's what the chemo has done for you, it's reduced your risk of having a recurrence, both local but also with metastases. The radiation has reduced your risk specifically of a local recurrence, but of course that also reduces the risk that a local recurrence will lead to mets. So that's what you get. I don't know anything about your first surgery and whether the surgeon got good margins, whether you had radiation therapy, whether something went "wrong" or whether you were on the wrong end of the random-shitty-luck stick. I'm sorry, truly. But NOT having treatment certainly doesn't improve your odds.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited January 2022
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    Agree you won’t know till you die Friday something else. Scan iety a lot of ladies here get it. But it’s better to know, than wonder IMO.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited January 2022
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    jeet,

    Since your signature line is not public, we don't know the details of your bc. Overall, treatment for early stage bc “works" for the majority of patients. Roughly 70%, across all stages, do not recur. There is no cure for bc, just risk reduction as mountainmia stated, and for the majority of early stage patients life does go on with no recurrence.

    Yes, there are scans but they can only detect bc when it has grown large enough to be picked up by the scan and that means it has already recurred. There is no scan that can pick up bc cells, no blood test nor anything else at present that can guarantee that your treatment has been completely effective.

    Without knowing your particular situation, you may very well fall into the 70% that doesn't recur. If you do recur and choose not to treat, which is an option open to all bc patients, then you may be in for a rocky road. Breast cancer doesn't go away on its own. BTW, it is not a local recurrence that is terminal. It is metastatic bc to other body parts, typically bones, lungs, liver, or brain, that is terminal.

    Again, I'm sorry that you were not aware of the realities of bc. I’m sorry you believed there was a cure or a way to definitely ascertain that your treatment was 100% effective. I only know of one member who refused treatment. She carried on for several painful years and then passed away. It was all far uglier than treatment, no matter how temporary, may have been. Untreated bc is far from a calm and peaceful process. It sure isn't fluffy and pink. Take care.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    This is one reason some women opt for mastectomies, especially after more than one cancer diagnosis. No more mammogram stress and it reduces the risk of the cancer returning. But mastectomies are not a guarantee either, and neither is a clear mammogram, unfortunately. Breast cancer is sneaky and it can recur in many other places. We all just have to learn to live with the risk and live well despite it. I never stopped worrying my cancer would come back but that didn't prevent me from having an awesome five years before it did! It would have been a huge waste if all I did was spend that time worrying instead of living.

    You may want to seek out counseling to help you handle this if you feel like you can't get past it. ❤️

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited January 2022
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    parakeet,

    Great post! It upsets me that the pretty pink bc machine has presented an overly rosy picture of what bc is. I agree with jeet that so much of this is”unacceptable” but feeling that way doesn’t change reality.

  • ruthbru
    ruthbru Member Posts: 47,050
    edited January 2022
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    Jeet, when I finished my treatments (surgery, chemo, rads), I also pushed my oncologist (who I liked very much) for GUARANTEES. This is what he said, "You've done all the medically recommended treatments, and are following the lifestyle recommendations (staying a healthy weight, lots of exercise, very little booze, regular checkups etc. etc.), the rest you have to leave to God (substitute 'fate' or 'luck' for 'God' is that works in better with your personal beliefs). So.....I did. Figuring that if cancer never came back, I would have wasted all that time worrying for nothing; and if it did come back, I surely better get busy living and making memories NOW (which we all should be doing anyway). If you don't trust your oncologist, by all means get a new one; but no honest doctor will tell you differently than what your doctor has said. If you are having trouble adjusting to this difficult reality (and it is difficult), working with a counselor or support group may be helpful.

  • minustwo
    minustwo Member Posts: 13,129
    edited January 2022
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    I agree with all the posters - we will never know.

    However this particular topic is supposedly restricted to Mods & Admin. I think the answers are very valuable & that they should be preserved. Perhaps the Mods can move the entire thread?

  • minustwo
    minustwo Member Posts: 13,129
    edited January 2022
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    I have sent a PM to the MODS to see if they can successfully move this to a new topic & asked that they let everyone here know.

  • calinana4
    calinana4 Member Posts: 14
    edited January 2022
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    Jeet,

    My cousin pushed for treatment confirmation also so her oncologist had her take the Natera Signatera test, which showed no active cancer cells (she was triple negative). I’ve requested this test also but since I’m ER+, my oncologist isn’t receptive to the idea. She said test is fairly new and unclear what would be done if cancer cells were detected since my hormone blocker’s job is to kill any remaining cancer cells. Also, excessive chemo can lead to leukemia. I’m going to have faith that the Anastrozole is working

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    It looks like the Signatera test is being used primarily within trials. I'm surprised your cousin was able to access it.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    And how would they know how accurate the test is without several decades of follow up and comparison to a test group?

  • calinana4
    calinana4 Member Posts: 14
    edited January 2022
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    MountainMia,

    I called the test company direct to ask some questions and it is available as long as doctor submits the request.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2022
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    several years ago, while doing mri imaging for my right knee replacement surgery, there was an incidental finding of a 5 cm tumor in my left thigh. So, there I was, worrying about a breast cancer recurrence and had this new tumor that I didn’t feel or see or know about until I needed hip surgery. So….off I went to an surgical oncology orthopedist. My right hip replacement was delayed until my left thigh tumor was removed and biopsied. Luckily, it was a benign myxoma.


    bottom line….you can worry about one thing and then get hit by another. Living gives us no guarantees…..or warranties. That said, the wonder of life is that we are all born with the ability to be resilient. Tap into it and treat yourself gently and let life unfold…. you might pleasantly surprise yourself at what you might discover while living….


    i am coming up on a dozen years since being diagnosed. What I have discovered in those years is that for the majority of us, breast cancer is a treatable disease. My best advise…buy a pair of comfortable shoes.


    carpe diem!

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    I felt the same as you after I finished chemo and had my BMX, I wanted to know how would we know if it came back. There was no reason to have any scans or MRI as I had just completed tx. I too felt it was unacceptable. Came here and was schooled on how it all worked. Unfortunately, I was one of those on the "wrong end of the random-shitty-luck stick" when I was diagnosed with a recurrence, thank goodness is it was local. Did radiation and shortly after had another scare, scans and biopsy; everything came back negative. Now I just try to take things one day at a time. There's not too much to enjoy socially with covid running amok here, but I dod what I can. I was in constant fear, every freckle, every blemish caused me anxiety. I'm currently on Xeloda and hoping it's doing it's job, but I won't allow the beast consume all of me anymore, that is my NY resolution.

    We don't know what cards we are going to be dealt, but this beast and covid have taken two years of my life. I'm going to start living as best, and carefully, as I can to enjoy life as much as I can.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited January 2022
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    The downside of, for instance, CT scans to get a detailed look what's going on is that other things also show up! From one pre-op chest scan before my lumpectomy I found out I had kidney cancer (since removed) and an aneurysm (under surveillance). The kidney cancer means follow-up scans, so on those they've found another aneurysm, a swollen spleen, a fatty liver, nodes in my lungs that are followed by more scans... and I'm sure I'm forgetting a few items. Oh, and a few questionable scans led to needing PET scans, and one of those led to a biopsy (benign). It is NOT a fun way to live, wondering what the hell will show up next and trying to keep track of what's been found. And the contrast dye isn't all that great for our health. If you get additional testing, what if it leads to living scan to scan like some of us do? I don't recommend it as a lifestyle.

  • calinana4
    calinana4 Member Posts: 14
    edited January 2022
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    Voraciousreader,

    Love your post! That’s how I plan to live post treatment life. Happy 2022

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    Signatera blood tests, patient information link -- looks like this might be a good option in limited circumstances.

    https://www.natera.com/oncology/signatera-advanced-cancer-detection/patients/

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2022
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    calinana…HugHeart

  • lillyishere
    lillyishere Member Posts: 773
    edited January 2022
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    We don't know if the treatments are working or not and that's why we need to see MO every few months for many years to come. Radiation was discovered in the late 1800s and chemo in the early 1930s and they are still the main cancer treatments even today. Even with new treatments here and there, and billions of dollars on cancer research, we are still in unknown territory.

  • moth
    moth Member Posts: 3,293
    edited January 2022
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    Just following up on an earlier post about "this is why some women choose mastectomies" ... yea , a mastectomy means no more mammograms. But it does not mean no risk of recurrence. Metastatic recurrence (as well as local ones) still occur.

    There are studies indicating better survival after lumpectomy than mastectomy (in matched pts) so you might reduce scanxiety but the "this might kill me" anxiety would logically not be affected.

    You do your best, do the prescribed treatments, hope and just try to move on.

    ETA: link to BCO article on the lumpectomy vs mastectomy outcomes study https://www.breastcancer.org/research-news/lumpect...


  • Jeet
    Jeet Member Posts: 4
    edited January 2022
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    What I'm really trying to figure out here is whether part of the treatment should be having some kind of scan. I can keep having mammograms but if it has spread elsewhere I won't know that from a mammogram.

    For those of you with breast cancer - was part of your treatment to get an annual scan after chemo and radiation?


  • alicebastable
    alicebastable Member Posts: 1,945
    edited January 2022
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    Jeet

    From exbrnxgrl's post on January 1st:

    "Yes, there are scans but they can only detect bc when it has grown large enough to be picked up by the scan and that means it has already recurred. There is no scan that can pick up bc cells, no blood test nor anything else at present that can guarantee that your treatment has been completely effective."

    That answers your question pretty definitively. You may not like the answer, but that won't make it wrong.


  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    It was hard for me to accept at first, too (and in truth, I still don't love it). But there won't be scans or other tests unless you have symptoms.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited January 2022
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    OP has deleted her posts.

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    okay. It actually was a good discussion, IMO. As I just said, it's been hard for me to totally emotionally accept, too, that we're just sent off with a "good luck!" I'm sure jeets and I aren't the only ones! So I think it's fine for this to live on even without her comments.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    I hope Jeet is going to be okay! She deleted all her posts before I read the latest one.

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022
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    She said she was wondering about follow-up with scans besides mammograms, IIRC. She would like to feel more sure that there isn't spread to somewhere else. Hence my reply that they don't generally do scans or other tests unless there are symptoms. And yes, I hope she is doing okay and will come back if she needs any help.