13 years cancer free found out today it’s back need help

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Baby1970
Baby1970 Member Posts: 2
edited April 2021 in Just Diagnosed With a Recurrence or Metastasis

at age 37 no family history I was diagnosed with stage2 Er+PR+ her 2 neg breast cancer in the left breast had lumpectomy with 6 lymph nodes removed. followed by a bilateral mastectomy due to margins not being clear . Underwent multiple surgeries to reconstruct with complications. Took tamoxifen for 5 years. Still have ovaries had partial hysterectomy before diagnosed. Today I found out I have stage 2 invasive ductal carcinoma. Also have an enlarged lymph node. This is on the same side and Breast the original is on. Waiting on further pathology to come back. I did not have chemo or radiation the first time and they discouraged me to have my ovaries removed at that age. Doctors said recurrence for it was very small. Well....... here I am. Can anyone tell me what to expect next?

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  • kathabus
    kathabus Member Posts: 205
    edited March 2021

    Hi--Gosh...13 years. Just crazy. And from what you wrote it did seem low risk for recurrence. I wanted to ask....did they seem to think this was the same cancer....or could it possibly be a new one? I know it's on the same side but sometimes that does happen. Having had a double mastectomy this has to be a shock. I'm sorry this happened to you. Hopefully you just treat it again and get 40 more years this time! I don't know what's ahead of you, but more sisters will come along. Hugs.

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  • Humblepeace
    Humblepeace Member Posts: 118
    edited March 2021

    Baby1970-I’m sorry you’re going through this after 13 years. I don’t know all of what treatment will happened next, but you will get so much help from your doctors. I pray all the best for you.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited March 2021

    Fellow 1970 person, this totally sucks and it a completely ripoff! Too bad we can't say, excuse me, i would like to return this cancer, I tried it one and was not a fan- 0 of 5 stars- do not recommend.

    Next steps depend totally on the pathology. I would guess if it is a recurrence then this time you'd be more likely to be offered chemo and/or radiation. If new cancer then could be different treatment. If ER/PR positive they will likely do surgery first with an oncotype test. If it's TN then they will say chemo first. If it is a recurrence or ER/PR positive they may suggest removal of your ovaries after other treatments complete.

    Big hugs

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Baby1970, I'm sorry you're in this situation. It sounds like your doctors are thinking this is either a local recurrence or a new primary, correct?

    I can only speak in general terms, but sometimes in this situation a "lumpectomy" would be done on your mastectomy breast. If a larger margin needs to be taken, sometimes the implant would be removed to close the area (that is what happened to me, and I'm half-flat now). After that, radiation would often be done to the chest wall and possibly the axilla area. Chemo may or may not be recommended, and if you are still HR+, a change in hormone therapy would probably be in order. If you are still pre-menopausal your doctors might recommend ovarian suppression like Zoladex or Lupron (which are drugs that make you temporarily postmenopausal) paired with an aromatase inhibitor. In my experience surgical ovary removal is not generally recommended except in certain cases where it is medically indicated for another reason (for example, if you are BRCA+). Surgery is not reversible, and there is a growing body of evidence to suggest that ovaries play a more important role in our health than we realized, even after menopause.

    Anyway, I hope that helps a bit. KBeee hasn't been as active lately, but she had a somewhat similar situation to yours. I remember she also advocated for another Oncotype test to be run on her new diagnosis, which the doctors were reluctant to do at first, but I think in her case it turned out to give very valuable information. You may want to ask if that can be done for you now too. Best wishes to you.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited March 2021

    Baby1970 - just want to send support! What a shock - incredible when I see these stories - so unexpected though recurrences or new cancers certainly happen as you are now living unfortunately.... So sorry you are dealing with this. Wish I had more I could offer.... Please let us know when you hear back on pathology.... Gentle hugs sent your way....

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  • Baby1970
    Baby1970 Member Posts: 2
    edited March 2021

    thank you all for the support . It’s so disheartening when I thought all that could be done was done to prevent this. I’m not blaming anyone I guess I’m just in the angry stage of this.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited March 2021

    My first diagnosis was in 1999, I was 27. I was ER+/PR+, no lymph nodes. They weren't sure what to do with me because of my age. Ultimately I ended up with a lumpectomy, axIllary node dissection, radiation, and Tamoxifen.

    Fast forward to 2019, and I was diagnosed with stage 2A IDC. Ultrasound and MRI both showed 2 suspicious nodes, i ended up with core needle biopsies of the lump and one of the nodes. The lump was IDC, the nodes were benign reactive nodes. They tested for hormone receptors and also did an oncotype dx test. I was much stronger ER+/PR+ this time and I was HER2 negative. My oncotype score was 26. I had a Bilateral Mastectomy, and ended up with a 3.2 cm grade 3 tumor, and Both nodes were benign. I had chemo (4 rounds of TC), followed by tamoxifen and ovarian suppression, then was changed to Letrozole and ovarian suppression. I was able to stop the ovarian suppression last month, but will continue Letrozole for at least 10 years.

    Because it had been 20 years between my first and second diagnosis, and it was contained in the breast (same breast both times), my MO believes this is a new cancer and not a recurrence. My MO is aiming for 40-50 more years, and I like her attitude. I have always had busy breasts, and since I was diagnosed so young the first time, my doctors all prepared me for the fact I was high risk for a second cancer. In looking back, I guess I always expected it to happen so it wasn't really a shock. Of course, this time I am on good anxiety meds which has helped a LOT.


    Chemo was rough, but nowhere near as bad as I had imagined it would be. You can do this


    ((((Hugs))))

    Tracy

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  • MindiG66
    MindiG66 Member Posts: 56
    edited March 2021

    Baby- just wanted to chime in and offer support! Once was more than enough!

    I was diagnosed at 37 with stage 2 and just last summer - 17 years later- diagnosed not the other side with stage 2. It's a 2nd primary (never knew that possible) and not a recurrence. I'm shocked at how many ppl on here have a 2nd, 3rd diagnosis! UGH!

    Hang in there! Once you get pathology and a plan that'll help.

    Big hugs!

    Mindi

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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2021

    I am sorry you're facing this. When I had a recurrence on the same side as my original cancer, I pushed hard for an Oncotype test. Mayo refused to do one, but my (new) local oncologist agreed. I was glad because it was 16 the first time and was 40 the second time! Definitely push to get Oncotype done. There is no way for them to know for sure if it is a new promary or a recurrence.

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