Fill Out Your Profile to share more about you. Learn more...

Stage 1, grade 1—Did you have a recurrence years later??

jons_girl
jons_girl Member Posts: 441
edited March 2021 in Stage I Breast Cancer

Hi Friends: Just curious how many of you are IDC stage 1, grade 1 and had a recurrence after your initial dx?

Also, can you share how your recurrence was found? Manual exam, mammogram, ultrasound, MRI, etc?

Please share your stories with us.

Thank you.

«1

Comments

  • jons_girl
    jons_girl Member Posts: 441

    bump

  • quinnie
    quinnie Member Posts: 113

    Hi Jons girl: Looks like we have the same diagnosis. I try to be positive and not think about recurrence but I am very interested in this topic. I hope others reply. I had DCIS 12 years ago in my R breast and never had a recurrence so that is good news but I did develop IDC in the L breast in March of this year. Just unlucky twice. Genetic tests all negative but have a significant family history of BC, grandma, Mom, multiple aunts and cousins.

  • alicebastable
    alicebastable Member Posts: 1,933

    I think a lot of stage 1 grade 1 women would be the ones who are no longer active members after a while, especially if they've finished the anti-hormonal drugs. If I was still working and had a busier life, I probably wouldn't be here anymore, and I'm just two years out. I know there are exceptions to that, but I'd bet a lot of them have drifted away from involvement in this site.

  • wallycat
    wallycat Member Posts: 1,181

    I'm a stage1 but grade 2. I'm starting year 14.....I'm fully aware it can come back any time. I'm dealing with my DH's cancer dx now but each time a lab comes back funny or I have a weird spot or rash or pain or something, I wonder if this will be the time it comes back.


  • voraciousreader
    voraciousreader Member Posts: 3,696

    i am 10 plus years away...hope I stay far, far away from ever being diagnosed again!


    that said....radiologist who found it told me that beginning this year, he wants to do MRIs more frequently. What? I only had one....ten years ago. Going forward, he said....I am now entering the sweet years...that is, the years that a breast cancer diagnosis is most frequent. So MRIs, mammos and sonograms for the next decade. Okay. It is what it is....


    looking back over the last decade, I had many other medical issues to occupy my brain that it left me little time to worry about recurrence...or a new breast cancer. Interestingly, when I was having imaging for a hip replacement, they found another tumor in my opposite thigh. Surgery confirmed a 5 cm myxoma. Thankfully, it wasn’t a sarcoma...


    my point? If you occupy your brain thinking about waiting for the other shoe to drop, then you will be wasting mental energy....energy that could be instead be used towards enjoying living.

    Yeah...Stage 1, Grade 1 can creep up much later again...BUT...it is EXTREMELY treatable, now and heaven forbid, later. As my doctor said....you are NOT on the Titanic! Okay!


    Heart

  • voraciousreader
    voraciousreader Member Posts: 3,696

    oh...and btw...mine was also missed on mammography...for 3 years

  • voraciousreader
    voraciousreader Member Posts: 3,696

    and...i know how you feel. I am skiddish about imaging. Didn’t do me any favors...

    Last point. Find a radiologist that you trust. And let them do the worrying for you instead

  • spookiesmom
    spookiesmom Member Posts: 8,148

    Different here, stage 3, grade 3 at first dx. After the year of tx, I decided cancer didn’t own me, and I wasn’t going to waste time or my life worrying and what if’s. For 7 years, that’s how I rolled. Then it did come back. Now I take 2 pills a day for 3 weeks, then 1 pill a day for a week. Monthly labs, MO every 2 months. So far, so good. Still not consuming my days.

    DH is also stage 4, he is struggling with tx. It’s a mind set only you can do.

  • GidgetSD
    GidgetSD Member Posts: 1

    Hi! Thank you for posting this. In 2016 I was diagnosed with stage 1 underwent lumpectomy and radiation. All has been well. I had my mammo in May and they found multiple calcifications in or just behind the same area. Birads 4. I have to go get a stereotactic biopsy done on thursday and I am freaking out. Has anyone had this and what was your outcome? I realize it could very well be nothing but I would love to hear any experience

    Thank you!

    PS I forgot to add that last year they found an abnormal intramammory node that they are watching

  • hkkw17
    hkkw17 Member Posts: 12

    Bump .. I'm stage 1 grade 1 too .. 1.5 years out ... would appreciate if long time survivors of stage 1 would reply !! Also would like to know if any one got a recurrence or a new dx while on tamoxifen or any other hormonal meds?

  • jons_girl
    jons_girl Member Posts: 441

    Thank you all for your responses sorry for my delay in responding.

    Quinnie: I am so sorry to hear about your breast cancer this march. I am curious to know how many Stage 1 breast cancer survivors have it return. Specifically if they are grade 1 or 2 and it recurs or comes back in the other breast. There isn't alot of studies that seem to study grade 1/stage 1 patients I don't think. My last MO sorta stated that. I hope your recovery is going well.....so sorry you are going through cancer again.

    Alice: That might be true. I just thought I would ask because of my last dx being stage 1/grade 1. Just curious how many get it back if any of them are here. I am only 3 yrs out barely. Going to have a MRI in July so will see how that goes. My last ultrasound in May was ok but I realize ultrasound doesn't see everything from the stories I have read on this site so because of some pain I have had in the same breast my breast dr wanted me to get a MRI.

    Wallycat: I am so sorry to hear about your husband dx that you are now dealing with too. Wow. I hope whatever he is going through that he makes it through and heals quickly. It is wonderful your cancer hasn't returned. Thank you for posting about your experience here.

    Voracious: I am not trying to occupy my mind with when the next shoe will drop. Just mostly was curious if there were others here who had original dx of stage 1/grade 1 and had it return since there isn't a ton of research on those of us who get br cancer caught early. My previous MO sorta stated that was the case. And so I thought I would ask here to see. Thank you for sharing your experience. Hope all goes well for you going forward. So sorry to hear about what you have gone through in the past.

    Spookiesmom: Thank you for posting here. I am so sorry to hear about what you have gone through and your husband's dx too. I agree I try to be very optimistic it won't return. That isn't my intention with this thread though to dwell on that. I am simply trying to see if there are stage 1/grade 1 gals/guys who had it return. So hopefully more people will chime in or maybe like Alice said....there aren't any or many who have had it return which would be great to know. Thank you for posting!

    GidgetSD:Hi Gidget, you're welcome. I am so sorry what you are going through right now! How was the biopsy? Can you update us? Hopefully it was not cancer. Hope all is well.

    hkkw17: Thank you for bumping this thread. I hope to hear from more stage 1/grade 1 people out there as well. Thank you for posting! That is good all is well with you. I am almost 3 yrs post surgery. No recurrence yet.

    Thank you all for responding! I really appreciate your comments. I hope you all have a wonderful week! We just had baby goats born last week and our lives have been joyful watching them jumping and learning about this new world they live in now. lol.

  • jons_girl
    jons_girl Member Posts: 441

    bumping in case others want to share their stories.

  • byfaith
    byfaith Member Posts: 48

    I was diagnosed over 10 years ago during routine mammography. It was determined I would not benefit from chemotherapy, and I underwent radiation treatments after a left lumpectomy. After radiation, I took Arimidex.

    This week I underwent my annual checkup and 3D diagnostic mammography. I’m incredibly blessed, as it was determined I am cancer free. TEN YEARS cancer free!

    PRAISE THE LORD,


  • thecargirl
    thecargirl Member Posts: 66

    Yes, Praise the Lord!!!

  • jons_girl
    jons_girl Member Posts: 441

    by faith:

    Praise the Lord! So glad to hear you are doing well!

    I’m guessing most stage 1 people here don’t have a cancer recurrence or I’d be hearing from them here. Which is a good thing!!

    Hope all continues to go well for you!


  • hkkw17
    hkkw17 Member Posts: 12

    bump !!

  • moth
    moth Member Posts: 3,293

    statistically stage 1, grade 1 do recur tho we don't seem to have many on this board. Predict reports 5% of those who have surgery only die in next 10 yrs (I used 50 at age of dx; 5 mm; hormone +) I wish it was closer to 0...

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


  • moth,

    50mm won’t be stage 1...

  • moth
    moth Member Posts: 3,293

    ooops sorry, 5 ! mm not 50

    & it's 5% who are deceased at 10 yrs. Will edit my post to correct

  • voraciousreader
    voraciousreader Member Posts: 3,696

    moth...if you look at overall mortality....there is NEVER a 0% chance of dying in the next 10 years for a 50 year old female. The takeaway is that a Stage 1 Grade 1 breast cancer diagnosis means, for 50 and older females is we must take care of ourselves so we don’t die of something else. As we age, our chances of stroke AND heart attack increases, as does getting diabetes and/or hypertension. Those disorders make our chances of dying GREATER than our chances of dying of breast cancer...


    so....let’s treat ourselves gently and also take care of ourselves!


    and yes...I am over ten years away from diagnosis and enjoy drinking alcohol, walking and reading...not at the same time of course!


    stay well dear friends and stay safe

  • moth
    moth Member Posts: 3,293

    Predict however is measuring breast cancer mortality only. So other risks, esp from heart disease which is a very significant killer of women, would go on top.

    All flies out the window at the individual level where I view it as a binary outcome. You either recur or not. I think these stats are useful for treatment decisions but not so much after.

    Everyone must consider that they could have a recurrence or a second primary or another cancer altogether since having been here once, almost everyone is at higher risk than the general population (dcis excepted, as I believe they go back down to population risk level)

  • alicebastable
    alicebastable Member Posts: 1,933

    I'm kind of a cancer magnet, and wondered occasionally which one eventually would finish me off - only to discover that I also have an aortic aneurysm. So now it's a different slow-motion horserace to the finish. But I also wonder what's the point of thinking about it too much when I could be having fun instead.

  • startnew12212
    startnew12212 Member Posts: 45

    everything, According to staging changes in recent years, 50mm could still be stage 1.

    From this site:

    • the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes

    Still, if the cancer tumor measures between 2 and 5 cm and:

    • has not spread to the lymph nodes or parts of the body away from the breast
    • is HER2-negative

    it will likely be classified as stage I.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    It's the difference between Anatomical Stage and Pathological Stage.

    Until 2018, there only was Anatomical Stage. I'd say that generally that is still used as the "official stage" although discussions might reference Pathological Stage. But some people are given their Pathological Stage as their official stage.

    Here is the Anatomic Stage chart:

    image

    And here is one page from the Pathological Stage charts, showing some T2 tumors. There are additional T2s that can be classified as Pathological Stage I.

    image

  • startnew12212
    startnew12212 Member Posts: 45

    Thanks, Beesie!! :)

    In my research, pathological is more accurate to prognosis hence updating in 2018. Why then do doctors still give the anatomical stage?

  • startnew12212
    startnew12212 Member Posts: 45

    In my research, pathological is more accurate to prognosis hence updating in 2018. Why then do doctors still give the anatomical stage?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Both methods of staging are prognostic. And except for those who do chemo prior to surgery, with both methods, the final staging is done after the surgical pathology is in and incorporates the pathology from all biopsies and surgery.

    Both methods of staging start the same, with tumor size, nodal involvement and the presence of mets. This is how most types of cancer have been staged for decades; there is a lot of history there and a lot of data supporting that staging. Over the years there have been changes to the breast cancer TMN staging (for example, the creation of Stage IB for those who are otherwise Stage I but have nodal micromets - these patients used to be classified Stage IIA). From there, Pathological Prognostic Staging adds the elements of grade, ER, PR and HER2. This was discussed for years but never done until 2018. While there is good background information supporting this new staging, there is a lot less history to confirm that it is accurate. Many of the differences in staging are quite refined, and personally I wonder just how much data there is to support some of these very specific differences.

    For example, looking at the chart I provided above, in most cases, all other things being equal, being PR- increases the stage classification. But not always. For Grade 2 or Grade 3 HER2-, ER-, the pathological stage is the same whether one is PR+ or PR-. However with that same pathology except for being Grade1? Well, then being PR- is worse than being PR+. Maybe there is good data behind that - and I do know that generally PR- has a worse prognosis - but I suspect that some of these distinctions are based on very small sample sizes, or possibly only prognostic modelling.

    The old staging is also universal, so one advantage is that you can go to any doctor anywhere in the world and they will understand your diagnosis based on the anatomical stage. With pathological staging, there is much more variability. Personally, my preference is to stage based on the traditional and well established TNM anatomical staging, and then add the pathological staging as secondary staging. As in, "Your diagnosis puts you at Stage IIA but because of the favorable characteristics of your cancer, your prognosis leans you towards Stage IA". I think that provides the most clear picture.

  • lillyishere
    lillyishere Member Posts: 769

    Beesie, I always love your posts. I wonder what stage am I, not that it matters as treatment goes. One MO staged I and the other staged II. I wonder why they think so differently reviewing the same pathology report.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Lilly, based on your signature line, your Anatomical Staging is Stage IIA and your Pathological Staging, assuming your tumor was grade 1, is Stage IB.

    You being told two different stages by two different doctors is exactly the confusion that concerns me. I was diagnosed back in 2005 and there was never any confusion about staging until Pathological Staging came on the scene in 2018. I think Pathological Stage is very helpful but this is exactly why I think all patients should be told their stage under both staging methods, with an explanation of the reason for the difference (a favorable or unfavorable combo of grade, ER,PR and HER2). Using just one or the other begs the question as to which is which and why there are two different stages for the same diagnosis.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Here's one for you Beesie-the second chart you posted above (pathological) does not list a T2N1? I was diagnosed in '17, but my pathology report after surgery was Feb. 2018. Or is it my tumor size that really matters? I had 0.4mm micromet-2nd node was negative. They changed that too and I can never remember what my TNM is now.