Does this mean I am cancer free?

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Mojojennijo
Mojojennijo Member Posts: 173

So I had an mri a couple weeks ago to check the effects of chemo. (I’m having weekly taxol #6 of 12 tomorrow) After the first 2 a/c treatments my dr said he didn’t think the tumor had changed much so I wasn’t expecting the mri results I got! The tumor is gone!

I’m asking this cause so many people have asked me the same question when I’ve told them the good news. Of course they also ask me why I have to finish all this treatment (the rest of chemo, surgery, radiation and the rest of the herceptin)

I’m under the assumption that they want to kill every possibly lurking cancer cell. But I didn’t ask if this means I can now think of myself as cancer free? I’ll tell you that this news has taken such a huge weight off my shoulders and made me a little more chipper going to treatments knowing that they work! I’m just curious how to explain this to Family and friends


Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2017

    Hi!

    You will never know whether you have really had a pathological complete response (PCR) until you have surgery. The scans aren't perfect. For example, my post-chemo MRI and PET scan detected no active cancer, and that may well be. But, when I had surgery, the pathology report showed that I still had a tiny pocket of DCIS (non-invasive cancer cells). Plus, scans cannot necessarily pick up microscopic cells, especially those which may have already moved to another part of your body. Best to finish chemo and Herceptin!

    ((Hugs, though)) -- your scan sounds very promising!

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited December 2017

    thank you so much for that info!

  • Outfield
    Outfield Member Posts: 1,109
    edited December 2017

    Wow, that's great that your tumor shrunk so much.

    What Elaine Therese said about scans vs. surgical pathology is important.  It's best not to identify too strongly with scan results because they are often not completely accurate.  It's just not possible to see microscopic detail on scans that pathologists can see when looking at the actual tissue.  Making the call about whether there are any cancerous cells remaining in your breast by MRI is like trying to describe all the paintings on the walls of someone's 5th story apartment by Google street view.

    "Cancer free" isn't really a medical term, so if and when you decide to use it is kind of up to you.  Doctors NEVER say that when talking about patients amongst themselves.  In my personal life, I never use it because there is no way to know that it's true.  Even a "complete pathological response," which IS a medical term and means that they can't find any cancer in the surgical specimen, doesn't mean that a person is "cancer free."  One of the purposes of chemo is to kill any cancer cells that traveled away from the tumor via lymphatics or bloodstream and have found other places in the body settle down.  For women who have surgery first and have clear margins, killing those tiny foci of metastasis is the main purpose of chemo, and many of us never know for sure if it was successful unless we find out that it wasn't.  There's just no way to know:  no scan picks up metastases below a certain size, and that size is actually huge compared with a cell or a few cells that have floated through the body. I've been done with surgery, chemo and radiation for quite some time, but I still have a substantial risk of recurrence, which will never go down to zero.  When people ask if I am "cancer free," I tell them there is "no evidence of disease."  For me, it's more honest and accurate. 

    On the other hand, I do know people who feel more able to go on with their lives if they use those words.  I see a different kind of truth in that:  it's not a medical term, but if you aren't dealing with the acute treatment of detectable disease, you are, in a way, free of it.  If being able to say that is important to you, I'd at least wait until done with surgery.     

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited December 2017

    After I had surgery I asked my MO: do I say I have cancer or I had cancer. She very quickly replied I had cancer and I'm happy with that. Sure, there may be cells lurking and they may come back somewhere in the future but I don't have cancer now. That's good enough for me

  • Jiffrig
    Jiffrig Member Posts: 232
    edited December 2017

    You are not really cancer free until you have had surgery and you get pathological info. That could tell another story as chemo does not usually effect ER+ completely. Surprised they would not tell you that

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited December 2017

    thank you for all the answers! I really don’t care if I use the word or not. I just get asked a lot. Same with “if the tumor is gone why are you still having all this treatment”. As I’m sure you all know we get asked sooo many questions. I will just say my tumor shrunk and they are now batting clean up ;)

  • mistyeyes
    mistyeyes Member Posts: 584
    edited December 2017

    Mojo- I had the same thing happen and when I had surgery there was no cancer cells found in the breast and the lymph nodes were clear. I took that as a great sign that the chemo worked, I did the radiation and am currently still taking Herceptin and will until March 2018


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2017

    Mojo,

    I had a friend who insisted on calling my lumpectomy an ectomy because the lump was gone by the time I had it! Yes, it is confusing for friends and acquaintances. I'm like Outfield now; if people ask, I just tell people that I currently have no evidence of disease (NED).

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2017

    I don’t mean this to sound funny or disrespectful. I have seen on these threads a phrase, you don’t know if you are cancer free till you die from something else.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    If they can't see your tumor, what are they suggesting as far as a lumpectomy or mastectomy? I have always been curious on that point. Usually they want to shrink it then go in but in your case what do they suggest?

  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017

    To be plain, most of us die with bc rather than of bc.


  • jbdayton
    jbdayton Member Posts: 700
    edited December 2017

    A clip is placed at the time of the biopsy so they knew where to cut for a lumpectomy.

    I did chemo first to try to shrink my golf ball sized tumor and had great results. No tumor was detected by my final mammogram and ultrasound, but they did see some suspicious calcifications in the original tumor bed. I ended up deciding to do a bilateral mastectomy because the location of the tumor was deep against the chest wall. After surgery, the final pathology showed a 5mm mass of dead cancer cells and 1cm of DCIS and a possible microcalcification in 1 lymph node, but it was dead as well. My remaining DCIS rewarded me with 5 weeks of radiation.

    Congratulations on the PCR.

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    jbdayton, that is great news. Since you went for bmx you got fantastic info from pathology.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited December 2017

    I agree with Traveltext. Despite my terrible dx, I achieved PCR. I did have a stroke caused in part but RADS. It has caused more issues than BC

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited January 2018

    meow, sorry for late response. I am going ahead with the bmx. They do surgery based off your clips as stated above regardless of what type of surgery you opt for.

    I chose a bmx because it took me over a year to get someone to order the right imaging to see the cancer. I almost gave up trying to get someone to look further. I had many obvious Breast cancer signs. Or red flags. But because my mamos and ultrasounds were clean they were not thinking my inverted nipple and dent etc were cancerous. To them they couldn’t be cause it wasn’t showing on their screening. I don’t ever want to go through the that again and I will never trust regular bc screening agai

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