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

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  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    ctmbsikia, this is where Pathological Prognostic Staging gets complicated, and why I said that if you tell a doctor your pathological stage, they won't know what your diagnosis was, whereas with TNM staging, they will immediately understand (recognizing that each Stage includes a few different diagnoses). TNM staging fits on one page. It take 5 pages to cover Pathological Prognostic Staging.

    Here is the page with T2N1. This says that your Prognostic Staging would be Stage IB. This compares to your Anatomic Stage of IIB.


    image

  • lillyishere
    lillyishere Member Posts: 775
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    Thank you so much Beesie. My current MO who said I'm stage II is the one I am currently seeing.

  • jons_girl
    jons_girl Member Posts: 444
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    bumping this thread in case anyone else wants to share their stories/journeys. Hope you all have a good weekend

  • stepitup01
    stepitup01 Member Posts: 7
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    I have often wonder the same thing. I have done research and haven't read much about reoccurence for stage 1 grade 1 or 2. Would love for more folks to chime in on this?

  • Hopfull2
    Hopfull2 Member Posts: 287
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    hi. I was stage 1 in 2016 at age 36. I had a double mastectomy, high onco score so I had to do chemo tc x6. Then started tamoxifen a month after last chemo 2017. July 2020 I was diagnosed with stage 4, Mets to my bones. So I guess I Saskatchewan of the 30% that gets it again.

  • jons_girl
    jons_girl Member Posts: 444
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    Hi hopefull2: thank you so much for posting although I'm so sorry your going through this dx. I read your dx last time and this time. Wow. Your previous dx was similar to mine. Although I didn't have DCIS or grade 2. I was on the grade line tho. Doesn't grade 1 change to grade 2 at 10%? Not sure what your prior grade percentage was? Also I'm not sure what makes a onco score high? My surgeon never did that test telling me she knew it would be low I'm not sure what my score would have been?

    So would you mind sharing your story? How did you find your mets? Thank you for posting. How are you doing?

  • lehrski
    lehrski Member Posts: 68
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    I was Stage 1, grade 1 when diagnosed 8 years ago at age 41. I had a mastectomy then did TC chemo x 4 and was on Tamoxifen until the recurrence.It came back in my lungs, a lot of lymph nodes, spine, collar bone, rib and hip last July.. In July, I found a lump deep in my armpit and then my oncologist did a scan. At the moment, things are going well on Verzenio and I'm active running and skiing

  • jons_girl
    jons_girl Member Posts: 444
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    Hello lehrski:

    Thank you for sharing your experience on this thread. You don't list your stage 1 diagnosis 8 yrs ago under your post so I hope it is ok to ask you questions? When you were diagnosed with stage 1...8 yrs ago was your tumor large? Did you do genetic testing and find you were positive for the BRCA gene? I am sorry to ask personal questions. If you don't mind would you share your story with us? Did you have any symptoms of recurrence before you felt the lump in your armpit? Sorry for all my questions. I am so glad everything is going well so far on Verzenio. Thank you for sharing with us on this thread! I hope all continues to go well.

  • Hopfull2
    Hopfull2 Member Posts: 287
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    hi jons_girl,,, I’d have to look but I believed my tumor was grade 3 and biggest was 5 mm of ibc and I had widespread dcis. Lymph nodes were clear other than a micro met. But MO said chemo should do the job since I was going to get anyway due to high onco score. My story is I was clear. But never had scans again. I guess it’s standard for stage 1 unless you feel pain or lumps anywhere. I never did. In 7/2020 I one day got sudden double vision. So I went to eye dr. He said to have my dr to mri to rule anything out. So I contacted MO and he orders scans (mri). And came back I had a lesion in my skull pushing into a nerve causing double vision. Around that time I started having back pain and rib pain, mo ordered more scans and called me to tell me it spread to my bones. So I had surgery to debulk the lesion followed by 5 radiation treatments to skull and two other areas in spine.

  • jons_girl
    jons_girl Member Posts: 444
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    hopeful2:thank you so much for sharing your story and your previous cancer info. Wow you've been through a lot! How is your treatment going? 💕💐sending a hug your way

    I don't understand the scan protocol for stage 1. I mean even when women get mastectomies the cancer can return. Nothing is set in stone for any of us. Scans aren't all expensive. Paying out of pocket here for a bilateral screenin breast ultrasound is like 250-300. That's not outrageous. MRI does cost. But not sure what out of pocket mammo would be. I think protocol should be scans every year at the very least. And if someone has higher grade having their scans every 6 mo seems logical to me. I'm not sure why providers don't push for that with their pts. Sorry I'm off my soapbox now. 😁lol

    Hope your day goes well. Chat when you have time.

  • dtad
    dtad Member Posts: 771
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    Jonsgirl...I understand your frustration. When I was first diagnosed I couldn't get over the fact that there really wasn't any preventive scanning done. What I've been told over and over is that once the cancer metastasizes it's stage 4 and the outcomes are not any different if you scan or you don't! Still doesn't make sense to me though. Best of luck to all.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    What is a preventative scan?



  • quinnie
    quinnie Member Posts: 113
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    OK I know I was only stage 1 grade 1 but my MO said I only need mammogram 1 x a year and that's it. I have a huge family history and I personally have have BC 2 x in 13 years. I feel they are not doing the necessary testing done as others I have seem on this site have done. I am one who does not want over testing but I also don;t want to be under testing. What do all of you think?


  • jons_girl
    jons_girl Member Posts: 444
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    Dtad: I agree that doesn’t make sense. Screening scans just keeps a eye on things to catch the cancer early if it returns.

    Beesie: not positive. But I think she meant screening scans.

    quinnie: your second dx was similar to mine. I chose no rads or meds. So my treatment was surgery then screening scans every 6 mo.

    I agree with you. With you having had breast cancer twice....I’d request scans every 6mo.But that’s just what I would do. I’d get a new MO if you have one who doesn’t agree with the treatment plan you want going forward. So important to have a MO who agrees with what you think is best for your treatment. I hope all is going well for your treatment. Have a great week.

  • summerangel
    summerangel Member Posts: 182
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    Grade 1 is extremely slow growing, so I see no point in screening every 6 months just because you had a grade 1 tumor that was removed. A tumor has to reach a certain size to even show up at all.

  • jons_girl
    jons_girl Member Posts: 444
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    summerangel:that is true. However it doesn’t always return as grade 1 if it returns. I’m not taking any meds to block hormones. No rads. So for me this was the right choice. My providers wanted to follow me. So I hear what your saying. But for me this is the right follow up.

  • Hopfull2
    Hopfull2 Member Posts: 287
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    Hi. From my understanding is, if you had a double masectomy no need for mammogram any longer. So that’s why I never had one. And I guess they try n prevent scans due to radiation ect ,,, unless your having issues with something,,, idk. Stage 1 is overlooked 100 percent. Then once u have issues and dr orders scans it’s already spread. I’m doing ok with my treatments jons_girl. Thank you. Now with stage 4 u get scans every 3 months. At scan time it’s usually nerve wrecking, Also with stage 4 u get labs once a month.

  • summerangel
    summerangel Member Posts: 182
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    There's a big difference between someone who's stage 1 grade 1 and someone who's stage 1 grade 2, which is typically reflected in the Oncotype scores. Even without medication my risk of distant recurrence - ever - is only about 10%, which is pretty common with grade 1.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    I was never stage I but wanted to comment on the scan issue. I am specifically referring to PET/CAT scans. There are several legit reasons for not using them routinely.

    - Radiation exposure. We worry about how what we eat might effect our health so let's not discount the potential harm of radiation exposure. BTW, I have been stage IV for almost 10 years. At some point, due to radiation concerns, we began to increase intervals between scans and I now have routine scans annually! This not uncommon among stage IV who have long periods of stability. My mo would offer a scan if I had any pain or symptoms but I love only one scan a year.

    - Costs, yes MRI's are cheaper but even that may be out of reach for many. PET/CT scans are thousands of dollars, not something many could pay for on their own. BTW, insurance often denies PET/CT scans if they deem them unnecessary. Yes, they are that expensive yet they are the gold standard of imaging when mets are suspected.

    -Anxiety! There was a period when I had a PET every 3 months. The worry, stress, anxiety etc was awful. I can't imagine that anyone would want to go through that for the very small chance of finding “something". Early stages do not always receive routine scanning because there is little justification for exposing people to radiation and stress when the chances of those scans turning up anything is tiny.

    Someone also mentioned monthly bloodwork at stage IV. Like earlier stages, there is no one course of tx and imaging that applies to everyone. I do not do monthly bloodwork and only scan annually.

    My point is that these scans are not innocuous and to do them routinely, for most patients, yields nothing fruitful. Take care.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    "Stage 1 is overlooked 100 percent. Then once u have issues and dr orders scans it's already spread."

    There is no way around that with the screening and testing that is available today.

    Someone can have scans for years and every scan can be clear, and then suddenly one scan shows something. It's mets then. All those previous scans did nothing to prevent it. All they did was provide a false sense of security that everything was perfectly fine, when in fact there was an area of cancer hiding out that was either dormant and/or too small to detect.

    So even if every Stage I received scans every 6 months, by the time something shows up on the scan, it will mean that the cancer has spread and is metastatic.

    What we need are better screening/testing modalities that find these tiny and/or dormant cancers before they take hold and start to grow. That does not exist today.


  • quinnie
    quinnie Member Posts: 113
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    Bessie and everyone else who has responded. You all have such good information and food for thought. I agree stage one grade one doesn't need the surveillance that other breast cancers need. I don't want to be tested if it is not necessary. I just find it interesting that others with the same diagnosis get more testing. I really like my MO and she is well respected in the community. I am not one who sits around and thinks about getting BC again. I never thought I would get it a second time. I have anxiety over other things but not my health. Good Luck to you all.

  • jons_girl
    jons_girl Member Posts: 444
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    Hopefull2: I am glad your treatments are going ok. Sending a hug to you. Hope you have had a good week.

    summerangel: Yes my recurrence chances were about 10 percent too I think...might have been higher. My grade was almost 2 as I recall. I forget where the percentage line is for grade 1 and 2. But I chose to have scans every 6 mo because I never had treatment of any sort by choice. So that is my 'treatment'. I know you said you don't see the point in having scans that often. But it is the right choice for me....thank you for your support.

    exbrnxgirl: I wasn't referring to pet/ct scans when I must have posted about scans above. But I agree with what you said. I have ultrasounds and probably will have MRI in the future off and on (just had my first breast mri a few months ago). That is the only treatment I have had other than surgery by choice. For me, that is what I choose to do. It might not make sense to others on the forum but it is the right choice for me.

    Beesie: I agree with you that often things seem to be caught too late. That is extremely frustrating! Better scans are needed, no doubt about that!! So true!! Maybe I have a false sense of security having scans every 6 mo. But it is what I do right now. And if it were to turn into mets or return in the future, well I will deal with that just like everyone else does that has had that happen. But for now, this is what I do for my treatment. =) For me, I'd rather have scans than do nothing. Dr's do want us to be followed and since I am not on drugs and didn't have rads there isn't any other way to follow me really. =)

    quinnie: thanks for posting. Stage 1 doesn't always return as stage 1 the second time I don't think. I think my surgeon told me if it came back that it usually is more aggressive when it returns. Maybe I am wrong? But I think she told me that.

    Hope you all have had a great week! It has been a pretty busy past couple wks for me. But I am thankful for spring weather! =) Sending hugs to everyone!


  • speedlady
    speedlady Member Posts: 4
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    I'm new to this game, having been diagnosed in January 2021 with surgery in February. My tumor was found by a routine mammogram. It was originally thought to be 2 small tumors but the post-surgery path report indicated it was one (1.2 cm). I had an MRI before surgery and no additional problems were found in either breast. It was 1b, E+ P- HER-. Sentinel node was negative. Tumor had both ductal and lobular features but no vascular involvement. Clear margins (.4). Most of that sounds pretty good going forward.

    My oncologist said she could not make a recommendation on chemo, yes or no. My oncotype is 27, borderline. After discussion with my son, who is a Cell Biology professor with knowledge of chemo, I decided against chemo. So I am now on Letrozole and will be starting radiation on 5/10. I have been told the odds of recurrence after radiation is only 6%. Chemo would have moved it to 3%. Not worth it, in my opinion.

    I am just looking for more information and this looks like a great place to find it. Thanks to you all for sharing your stories.

  • jons_girl
    jons_girl Member Posts: 444
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    Speedlady: Yes this forum is a great place to get more information. Let us know if you have specific questions.