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Any IDC/Stage 1/Grade 1/ES&PR+ Her2- ever had recurrence?

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jons_girl
jons_girl Member Posts: 444
edited October 2021 in IDC (Invasive Ductal Carcinoma)

Hi Everyone:

I am wondering about something. I caught (thankfully) my tumor very early 3-4 mm, IDC, ES/PR+, Her2-, Grade 1, Stage 1. They don't really study people like myself with recurrence. So I am asking here....has anyone had exactly the same tumor characteristics as mine and had a recurrence???? Or is this something that rarely if ever returns? It had a prolif rate of 9%. So low proliferation.

Thank you in advance for your answers. I am mainly interested in people with tumors exactly like mine as stated above.

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Comments

  • jons_girl
    jons_girl Member Posts: 444
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    bumping

  • okkate75
    okkate75 Member Posts: 75
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    Hi! I think you might not be getting a lot of responses, because a lot of people don't have *exactly* your diagnosis. Are you asking if you can rest assured you won't have a recurrence, given those stats? Your medical oncologist would be the best person to ask. Lots and lots of people with breast cancer diagnoses do not have a recurrence. Some do--30% of early stagers will. There's no way to know for sure who will recur and who won't, so for me, I've done the treatments suggested by a medical team I trust and now do a lot of work to manage my anxiety about recurrence. Exercise, meditation, and gratitude are working so far. I hope you'll be in the majority and not recur!

  • lisey
    lisey Member Posts: 300
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    There are people who are stage 0 DCIS and they still get a recurrence.  

  • moth
    moth Member Posts: 3,293
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    you could run your stats in one of the calculators. The risk is low but it's not zero, esp at the 15 year & more


    http://www.predict.nhs.uk/predict_v2.1/tool

    http://www.lifemath.net/cancer/breastcancer/therap...


  • summerangel
    summerangel Member Posts: 182
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    Your risk is very low, but not zero.

  • bennybear
    bennybear Member Posts: 245
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    Sorry to say, I had a very similar cancer 8 years ago and just had a second cancer in the same area. My initial onewas 3 mm. Not sure if it is actually a recurrence or a new one as it is so long after and as this one is grade 2. I sure wasn't expecting it after that amount of time. My BS said risk is 5% to 10% with lumpectomy and radiation vs 1 in 10,000 with mastectomy.

    Did you do hormone therapy? I was told I didn't need to, yet now I wonder?

  • jons_girl
    jons_girl Member Posts: 444
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    hi everyone! Wow so thankful for your responses. Thank you. I am grateful you all took the time to respond. And I want to take time to respond to each of you. I will have more time over the next couple days. I hope each of you are enjoying this summer day.

    Talk soon

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Okkate:

    I was happy to get these responses. Thank you for responding.

    I wasn’t expecting people to guarantee anything regarding my chances of recurring cancer. I just wanted to hear from people who had similar situations to mine,like did they recur? What was their experience thus far in their life journey. Just was curious what other people’s experiences were.

    There are a lot of es/pr+ her2- stage 1 patients like myself. But the grade isn’t always the same which makes a big difference in my opinion when you actually catch it and how aggressive the tumor is.

    So thought I’d ask the question. Wasn’t sure how many responses I would get. But will see if more people respond.

    Bennybear appears to have basically the same dx that I had.

    Tam

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Lisey:

    Thank you for your reply. Yes I realize there are no guarantees. I just wanted to hear what’s happened in other es/pr+, her2-,stage 1, and if possible grade 1 folk on the group. The grades seem to really matter.

    I’m trying to still understand the difference between grades in the same ‘stage 1’ dx.

    Like yr cancer and mine were the same virtually but our grades were different.

    So once a person even in stage 1 hits grade 2, do the onco docs suggest chemo and mastectomy?

    Sorry for asking questions. Just trying to learn so I understand all this.

    Thank you again for yr reply. Have a great day

    Tami

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Moth:

    Thank you for yr response. And thank you for the links! Yes my recurrence rate is probably low. But not assuming it won’t ever return. Just being vigilant doing diagnostics every 6 mo.

    Sorry for asking questions but I’m trying to learn about IDC. And stages and grades etc.

    So yr cancer and mine were quite a bit different I think. Yr tumor was larger. Grade was diff and pr-.

    So yr treatment was different because yr grade was 3 is that pretty aggressive?

    Sorry I’m still learning a yr after my dx. Winking

    Tami

  • jons_girl
    jons_girl Member Posts: 444
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    Hi summer angel:

    Thank you for your response. Yeah I know my recurring rate is low but nothing is for sure. I get that.

    I’m still learning a lot about Br cancer. So hope it’s ok to ask about yr situation. Yr cancer tumor was basically the same as mine. But yr stage in one side was different as well as tumor size. Mine was under 1cm. Quite small. So if a person is grade 2 do they automatically tell the PT to have mastectomy?

    And you didn’t need chemo because tumor was grade 1 right?

    I feel stupid asking these questions to you all. Hope it’s ok. Don’t mean to offend anyone.

    Tami

  • jons_girl
    jons_girl Member Posts: 444
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    Hi bennybear:

    Thank you so much for yr response to my post! I’m so sorry to hear of your recurrence. Sad

    Do you mind sharing about the new tumor? It’s stage 2. What grade and how large,if you don’t mind sharing. I’m so sorry yr going through this again! What treatment are they suggesting?

    Did you do genetic testing?

    You and I have very similar stories I think regarding our tumors. My tumor was 3-4 mm. Grade 1 es/pr- her2- stage 1a. Your first tumor sounds similar to mine

    I was told by my oncologist doc 5-10% recurrence possibility but doing radiation really didn’t change that rate much at all neither did taking tamoxifen (I’m not post menopause) my oncologist doesn’t think it will return

    So I chose no rad no pills

    If it were to come back wanted lumpectomy option again

    I have family hx of breast cancer did genetic testing and was all neg

    So time will tell I choose to stay positive, try to eat super healthy, stay active, get good rest, try to cut excess of stress out of my life, stay close to God family and friends

    Tami


  • bennybear
    bennybear Member Posts: 245
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    hi tami,

    My new diagnosis is grade 2, no stage given but is local and small 1 cm and no lymph nodes so like before except grade. Have done the genetics and even though a family history I have no bad genes. My father smokedwhen I was a child so I wonder.

    I was told I didn't need hormone therapy then, but needed the radiation. This time I needed a mastectomy as they can't do radiation second time. So still waiting on further treatment but likely hormone blockers.

    Hope you are in the 95%!

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Bennybear:

    Thank you for sharing more about your diagnosis. Wow I am so sorry you are going through this a second time! After so many years cancer free too!! =( I hope your healing all goes well and that you never have to go through this again!!

    Sending a hug to you!

  • rae7200
    rae7200 Member Posts: 23
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    Hi Jons Girl,

    Just saw your post. My original tumor isn't exactly the same as yours, but pretty close, grade 2 rather than grade 1, and 1 cm. My KI 67 was 15. My recurrence was exactly the same, except the KI 67 was > 30%, , and it wasn't in the breast, but in an axillary node that hadn't been radiated, so I was able to have radiation again, 25 sessions this time, instead of 16 sessions last time.

    Last time I tried tamoxifen for 4-5 months, with black cohosh, different levels of Effexor, etc., but couldn't take tamoxifen, because the night sweats were so frequent I couldn't achieve REM sleep. You have to be able to sleep! I couldn't take AIs because of cardiac problems. My recurrence was 3 years and 1 week after the initial diagnosis. This time I'm taking a reduced dosage of tamoxifen, and taking 500 mg ginger to reduce the night sweats. I am determined to take the tamoxifen this time, no matter what it takes!

    I've been taking Effexor 37.5 mg to relieve menopausal symptoms ever since I had to wean off estrogen replacement therapy after my first lumpectomy.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Rae!

    Thank you so much for your response. I appreciate you sharing your experience. I had wondered what gals experiences were with similar cancer. So thank you for sharing. Wow a recurrence! I'm so sorry to hear that. Scared

    My ki67 I believe was 9%. I forget what percent it has to be to change to the next grade level. We weren't much different tho, you're right.

    I hope the tamoxifen all goes well and you don't have side effects this time! I wish you the very best! You caught it very early it sounds like! That’s good. I am thankful for diagnostics!

    I'm not in menopause yet. Wish it would hurry up! Lol. My body keeps skipping cycles occasionally so I think it's possible it will happen soon?

    For treatment I chose no rad or tamoxifen. My tumor was very close to heart. Didn't want to risk damage. And it didn't change my recurrence rates much. And I didn't want to have mastectomy if it did come back.

    My maternal gma had Br cancer twice. Mastectomy the first time. Tamoxifen. Second time happened after she told her doc she needed her hormone pill again. Wasn't feeling good I guess. He said he wouldn't suggest she go back on them. She did and the cancer came back.

    Maternal aunt has had it as well. And I did genetic testing. No genes. Glad for that. But scratching my head wondering how on earth we could have so much of it on that side of family with no genes. Maybe there are genes they haven't connected to breast cancer yet? Not sure. Im thankful I don't have the genes. But it's a little confusing too.

    Thank you for sharing!! Sorry for writing a book! Lol





  • summerangel
    summerangel Member Posts: 182
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    Hi Johns girl, sorry I didn't see your questions before, I was on a trip for a few weeks.

    A person's decision between a lumpectomy and mastectomy is influenced by many things. Many (most?) who decide on mastectomy do it for peace of mind regarding recurrence risk. Personally, I was told to get a mastectomy, even before they found cancer in the other breast. The tumor board at the hospital examined my test results and decided there were too many areas of concern. This, plus the fact that I have a connective tissue disease that affects the skin (not good for radiation) were convincing reasons to have a mastectomy.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi SummerAngel:

    Thanks for sharing your experience. I’m not questioning tho people who choose to have mastectomies. Not judging. Hope I didn’t sound like that.

    Yes I know people do have mastectomies sometimes just because they want them as precaution too. Sounds like yr tumors and all was pretty extensive too. And then hospital told you that you should have one. And I think that’s fine. Everyone’s dx is a little different and choices often are different too.

    Thanks for sharing

  • rae7200
    rae7200 Member Posts: 23
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    Hi Jons girl, I thought I had sent you a thank you for your kind words, but it looks like my estrogen-deprived brain played tricks on me again. Tomorrow is my annual diagnostic mammogram, the first one since the BC reappeared last year. My MO is leaning very much towards its being not a recurrence, but a residual — there from the very start. In that case, the prognosis would be much better than if it had been treated before, with radiation or the few months of tamoxifen. As it is, the area wasn’t radiated. Tomorrow’s an early morning, so I should shut down, but I’m still spun up.

  • lisey
    lisey Member Posts: 300
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    "the few months of tamoxifen"   I'm a little confused Rae, if you were diagnosed initially in 2014, shouldn't you have been on tamoxifen for 5 years and still have been taking it?   The standard RX for Tamoxifen or other hormonals is 5+ years, not a few months.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi Rae7200:

    How’d all go yesterday??🌺I hope all went well!

    Question for you. I was told if my cancer came back and I had done radiation first time that would not be a option to use if it came back. That I’d have to have mastectomy. It looks like you had radiation tho second time. But not on breast right? So maybe that’s the difference and why you could have it the second time.

    Can you explain that? You chose no mastectomy right? Sorry for all the questions just still trying to understand options if this does ever return for me.

    I wish you the very best and I hope all continues to go well with treatment.

    Hugs

  • rae7200
    rae7200 Member Posts: 23
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    Hi all, I don't always check in, so I'm just seeing your messages.

    Yay, 3D mammo yesterday showed no signs of cancer! Radiologist who read the mammo recommended MRI at 6 month intervals opposite the annual mammogram, and suggested I discuss it with my MO. I saw my oncology radiologist's NP (whom I adore! She is just about my favorite medical practitioner of all times -- the ultimate in compassion, plus really knows her stuff. She also recommended the MRI, and will put it in the system. She also commented on the edema in the left breast that had the lumpectomy and the radiation, and gave me a script for a consultation at the lymphedema clinic at the hospital where my breast surgeon is the director. It's about 15 min closer than the other branches of Johns Hopkins. It's not lymphedema -- just good old-fashioned edema, a result of the surgery and the radiation. C really is the gift that keeps on giving. (My MO commented on it the last visit, but didn't discuss what to do about it.)

    Lisey, I had to stop tamoxifen after about 4 months. I couldn't sleep. I was waking up every hour or less with night sweats and couldn't get back to sleep. I couldn't get into REM sleep. You have to sleep! I tried higher doses of Effexor (up to full depression level), black cohosh, and acupuncture -- no joy. I tried 10 mg -- still couldn't take it. The leg cramps were also horrific. My oncotype DX was 13, so my chances of recurrence were pretty low. So we took the 84-86% chance it wouldn't return. I did have radiation. My gyn told me that after 3 years off, many women who weren't able to take it before could take it again. I started with 10 mg this time, and still had bad night sweats, lowered to 5 and they are tolerable. Added 500 mg ginger (found that info on this board), and it helped a lot. I am determined to stay on it this time!

    Jons Girl, the cancer came back in an area that had not been radiated before, in a node in the axilla. It actually was probably residual, meaning it had been there all along, rather than a recurrence. That means good news, that it was not resistant to radiation and the 4 months or so tamoxifen I tried. You are correct; I had a lumpectomy, not a mastectomy.

    Thanks so much for checking in.

    Hugs to you all!

  • jons_girl
    jons_girl Member Posts: 444
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    Rae that is great about the mammo!! That is great about MRI's too!! So are they suggesting MRI every 6 mo because you have dense tissue? I have dense tissue and can't just do mammo's. I actually stopped doing mammo's because my cancer was completely missed on the diagnostic mammo they did (can see sticker on pictures but no tumor was there). I don't say this to scare you!! Mammo's work just great for most women! I just wasn't one of those women. Ultrasound showed the tumor very clear with blood source and all. So ultrasounds are what I trust right now for me. I am having ultrasounds every 6 mo.

    They have something newer called Automated Ultrasound now and I plan to do that every 6 mo. I live near a metro area and there is only one automated ultrasound at one of the hospitals in our metro area. It is a little better than hand held ultrasound because it is automated and gets a wider swath of the tissue I believe. It is still operator dependent. Just my opinion, I am not a professional.

    That is great they are giving you two diagnostics every 6 mo! I am really glad I get to do that too! It puts my mind at ease that I continue to keep being checked.

    Hope you have a wonderful Christmas Rae!!

  • salamandra
    salamandra Member Posts: 736
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    Hi JonGirl,

    I asked my RO about second radiation. I was told that for a long time the standard of care was that a recurrence after lumpectomy was mastectomy, but that now they're trying second lumpectomy with second radiation on some women, with generally positive results. I think not everyone is eligible and I'm sure it depends on multiple factors, but I was told that the amount of radiation we get is not anywhere near the lifetime limit for the breast. I found that really reassuring

  • kksmom3
    kksmom3 Member Posts: 101
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    Hi Jons girl, I am similar to your situation. Mine was IDC, hidden inside some DCIS, but the IDC was 3.2 mm, ER+PR+ Her2neg. No node involvement, stage 1A, but unfortunately, grade 2. My lumpectomy surgery was 10-1-18 and I am done with radiation and taking letrozole. So far, so good on the letrozole. My rad dr said my rate of recurrence was half a percent a year. My med onc said 4%. I still worry as my Ki-67 was 37%. If that number had been lower, I would feel a lot better. Have you had your follow up 1 year mammogram and how did that go??

    Oh well, onward and upward, right!!

  • Julie_H
    Julie_H Member Posts: 1
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    Hi kksmom3,

    Our stories of cancer are very familiar. Mine is the exactly like yours with the exception of the K167 test. Mine was at 40. I had my lumpectomy on 12/12/18 along with breast reduction. I have not started radiation. My cancer team Oncologist and Surgical Oncologist are not seeing eye to eye.

    The Surgical Oncologist insists I need chemo as my tumor did not shrank any within a month of taking Tamoxifen before surgery. So now I'm going in for a second option for keeping my own sanity.



  • kksmom3
    kksmom3 Member Posts: 101
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    Hi Julie H, that is unsettling. Did they do an Oncotype on yours? Mine did not, they said they don't do them unless the tumor is 5mm and larger. I honestly didn't ask about chemo because they all told me it wasn't necessary. How big was your IDC? I'm glad you're going for a second opinion, please let me know what you find out.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi KKsmom3:

    I am so sorry for being so late in reply to your comment above! I chose no radiation no tamoxifen. My oncologist is supporting my decision as long as I have diagnostics (I have ultrasound every 6 mo) and see him once a year and I am also seeing a assoc of my onco breast surgeon once a year. So I see one of them every 6 mo. I go back in June again to have another ultrasound and appointment for followup.

    I felt my lump by a miracle. I do not do monthly self exams (now I do though). I went to have a exam when I felt it. And the NP also felt it, they marked it with special stickers that can be seen on mammogram. They took a diagnostic mammogram and the sticker was seen but the lump/tumor was nowhere on the mammogram. Then they did a ultrasound. The ultrasound showed the blood source to the tumor and everything!! It was amazing to me how they could not see anything on the mammogram. I have very dense breast tissue. I learned alot from this website: https://www.areyoudense.org not all women have dense tissue but I am one of them. And unfortunately I have extremely dense tissue. Dense tissue appears 'white' on a mammogram as does cancer so it can be missed on mammograms on people like myself.

    Anyway....so in answer to your question....my diagnosis was in June of 2017 so I am past a year post cancer. I do have ultrasounds every 6 months to follow up. Very thankful and continuing to make sure I am followed. But all is good so far!

    I hope all continues to go well in your recovery!! I am here for support. I will try to be better about responding sooner!

  • kksmom3
    kksmom3 Member Posts: 101
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    Ho Jons girl. I just happened to check back in. I am dense also, but category 3. So, I guess it could be worse. I never had an U/S, went from 3D mammogram to a diagnostic mammogram, then MRI. Since I was grade 2, that is probably why they recommended radiation and letrozole, but actually, I was first diagnosed with grade 3 DCIS. I didn't know about the IDC till pathology. My treatment did not change, I was still having radiation and an AI. I know I am fortunate it was only 3.2 mm, I sure wish there was a surefire technology that could catch ALL breast cancer for all of us, but I guess different methods will have to do. I don't regret rads (sort of! ha) because it dropped my recurrence rate by half , and the AI by half again. Think both of our recurrence rates are very low thank goodness!!

  • jons_girl
    jons_girl Member Posts: 444
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    Hi kksmom3:

    That is good they could see yr tumor on mammo! And yes MRI is a great option too for diagnostic. Level 3 of density is significant. It’s good they saw yr tumor!

    I had a 3D mammo as well and tumor was missed. I was level 4 density at the time tho. Not sure if that has changed. But I don’t trust mammos for my diagnostics. Just my experience has tainted my trust in them. After going through that I just have decided to not have anymore mammos. If I hadn’t felt my tumor....when would it have been caught? Likely someone would have felt it because it was close to the top. But I sorta wonder about that.

    Yeah if I had been grade 2 I’m sure my treatment may have been different.

    Every cancer tumor is so different and each decision is very personal. I respect yr decision and all women’s decisions regarding their treatment. We have to decide what is right for each of us. Then we move forward.

    Yes our recurrence rates both are probably pretty low! I still scratch my head regarding how I got this! I’ve made even more dietary changes and moving forward am trying to stay as healthy as I can be!

    Have a wonderful week!🌺

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