Local recurrence

velo
velo Member Posts: 44

Hi - I am 42 and just had my second breast cancer dx. The first time I was 38 and had a 2.5 cm IDC lump removed by lumpectomy followed by rads, chemo and tamoxifen. I stopped the tamoxifen after a little more than a year because I wanted to have a baby - a bit of history, I have no children, started trying to conceive at 36 and then got breast cancer, tried IVF to freeze embryos before chemo (unsuccessful) and as for conceiving after the tamoxifen - also unsuccessful. After several times of being paranoid about feeling something in the area where the lump was removed, and having them imaged, this time the mammo showed microcalcification changes, which they biopsied, and determined to be just DCIS. However I swear they just ended up biopsying around the palpable lump I could feel and didn't get the lump (which they did not see on imaging)

Anyways I ended up having a unilateral mastectomy without recon. The local hospital did not do the simultaneous surgery and I just wanted it out ASAP. Plus I don't like the idea of implants, and as for the flap surgery, didn't want an abdomen incision - still having the faint hope clause of a child - and thinking if it really was just DCIS (which I didn't believe) I would try a donor egg. Pathology results after (and that was another gong show in itself - I swear I have not had any good experiences with our health care system this time around, I am in BC, Canada) showed a 1.5 cm IDC grade 3 (first time was only grade 2) in the spot where I felt the lump. ER/PR positive though less strongly than first time. I seriously doubt I would have recon later due to my dislike of surgery and the long recovery time with the flap.

The SNB failed this time - they couldn't see where the dye went - and the surgeon did not do an AD since it was only DCIS. Now the MO wants to do an AD (I am skeptical this is really useful and also I feel strongly I am node negative, and fear lymphedema after seeing someone else with a MASSIVE arm due to it) and an Oncotype DX test to help decide on chemo. Note that I *really* wanted this test the first time as I strongly did NOT want to have chemo but did not due the expense but now it is covered. He said we would talk about hormone therapy after this.

Feeling overwhelmed and alone and not sure where to go for support/help. In addition to cancer and infertility my whacked up hormones have also caused a long term low level depression which I have been medicated most of my adult life for. Also am scared of dying as read that a local recurrence can cause up to 50% risk of 10-year mortality. My MO did not agree with this number however he did not have an alternate number as he said we don't really track recurrences and was only giving me numbers as if my recurrence was a first primary.

Oh and I have no family history so I have not had any BRCA1/2 testing done.

I guess it would be helpful to hear from others that have also had a local recurrence what treatments you had the second time and if they have been successful at keeping the cancer away. And how to deal with the fears.

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Hi velo,

    We're so sorry to have you back here, dealing with this all over again. Please know we're all here for you, and you're sure to receive some really supportive feedback and advice soon. You're not alone!

    Thanks for posting. Please continue to let us know how you're doing.

    Big Hugs,

    --The Mods

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2016

    Velo, I am so sorry that you are dealing with a recurrence. I had a recurrence as well. I know my second time around they tried to find the sentinel node and failed; I knew it was a long shot, but did ask them to try. I did have ALND. I had zero of 13 nodes positive, but they did find a second tumor hanging out where the nodes are. I found the second time around easier physically because I knew what to expect and could easily head things off. It was more challenging emotionally though. Since I had TC chemo the first time, I did AC+T the second time. It is supposed to be a harder chemo, but I found it easier than TC. Everyone is different though. Since I had a mastectomy first time around, I had radiation the second time. I also had my ovaries out since I failed on Tamoxifen and needed to start an AI. I could have done injections, but I was done with kids, so I had surgery (they did it the same time as my re-excision and ALND). I was 43 the first time and 44 the second time.


    I would recommend not only BRCA testing, but a wider panel testing. I do have a family history, but they disregarded it because I was not BRCA positive. Turns out I have a VUS in the CHEK2 gene. Per researchers, it is a probably damaging one.


    You have found one thing that frustrated me too..... there is very little data on local recurrences. I was appalled at that. I still am. Everything out there is on newly diagnosed or metastatic. It is very frustrating. I did request oncotype the second time, which they did.


    PM me anytime. I know how hard this is. (((HUGS)))

  • BethL
    BethL Member Posts: 286
    edited August 2016

    I was first diagnosed at 38 with Dcis and micro invasive idc. Had lumpectomy and rads and tamoxifen. Then almost 10 years exactly, diagnosed again-same area. .7cm. Idc and Dcis. Ended up choosing bilateral mastectomy in December 2015. Finishing up reconstruction now. I was fortunate in that my nodes mapped and they were able to take 2 nodes, but I gave permission to do a total dissection if it didn't map. I needed to know, although I knew this didn't necessarily give me any guarantees.

    My oncotype test was intermediate and I chose to have oopherectomy and an AI. I had genetic testing in 2005 for brca which was negative. This time we did more and I found out I am chek2. Made me glad I chose mastectomy...wish I had known the first time. Definitely get testing, I had no family history although my mom is adopted-so it could have come from that side.

    You're among friends who understand. I don't know what I would have done without the Warriors/sisters on this site. Hugs

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    I had a high oncodx of 34 first time. I had a scare my mo thought it was cancer same exact spot but on my DIEP breast. It turn out to be fat necrosis.

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited August 2016

    Velo, I am also a local recurrence. I totally understand your fear. I read the same bad stats you saw. I'm three years out now from my recurrence. I choose to believe I will beat it. In addition to doing the treatment that was suggested, I have altered my diet a lot, I exercise way more, make sure I get my sleep, and try to reduce stress. I recently had a scare, which was negative by the way, and I found some healing meditations on you tube that really helped with the anxiety. I did them two or three times a day if I needed to!

    My treatment: I had already had a mastectomy, so they did a wide local excision to take out the lump. I did have a node removed and it was negative. I also lit up all over for the SNB mapping. I had marks all over my chest, but somehow the BS determined to remove one node under the collarbone??? I did have chemo. This was based on a study that was new at that time that showed better survival doing chemo after recurrence. However, the study was not so clear for the ER+ patients. It was very clear for triple negative. I don't know if there may be more data from that study now, three years later. I also had radiation. Then I was put on ovarian suppression, which is a once a month shot, and anastrazole. This is because I was premenopausal but the tamoxifen had failed for me. For you, they might just put you back on tamoxifen since you had discontinued it, but they very well may suggest ovarian suppression as well as tamoxifen or an AI due to another study that showed its superior (SOFT study?)

    I'm glad you are getting the oncotype. I think this will help clarify the need for chemo. I think the reason your MO is saying he is treating this like a first cancer is because you had stopped the tamoxifen. Be hopeful because you didn't recur ON treatment like I did. Even my MO said he thought I had a "good prognosis" because of the ER+ . I was too scared to ask for percentages!

  • velo
    velo Member Posts: 44
    edited August 2016

    Hi - thanks all for the replies! It helps to know others have gone through the same thing and have come out well! Since my post I have had the ALND surgery, with results 9 more nodes taken all negative. The oncotype DX score came back as 40. Because of that chemo was recommended and I didn't fight that one. I will start AC+T tx in a few weeks once my incisions are healed.

    My onc wants to put me on an AI when I am done which means I must either get the injections or oopherectomy, of which I think I would go for the latter.

    Feeling overwhelmed but trying to deal with everything one step at a time!

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    was the oncodx score of 40 for DCIS or idc?

  • velo
    velo Member Posts: 44
    edited August 2016

    The Oncotype DX score of 40 was for IDC.

  • Lou10
    Lou10 Member Posts: 332
    edited August 2016

    So sorry you're going through this again. Do ask about BRCA testing. Someone told me you qualify in BC if you've had two diagnoses before age 50, regardless of family history. Not sure if this is true, but may be worth checking?

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    wish you the best. Sorry you are facing more treatment.

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