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Almost made it to 10 years...new LCIS DCIS diagnosis

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kimrochelle
kimrochelle Member Posts: 2

This ain't my first rodeo.

I haven't been on this forum for a while. I was diagnosed with ILC HER2Neu triple positive (rare, i know) in 2012 in my left breast ,had 37 radiation treatments and a lumpectomy and had been free and clear..until June 22, 2022 when I flunked my annual mammogram. Suspicious calcifications in my right breast. The one that had been behaving.

The biopsy showed LCIS...They removed the cells..about 2 cm worth..and found DCIS. So, the doctor is going back in. (Who doesnt' love more surgery?) and making sure one of the closer margins is clear..he'll take another rim of tissue.

Then I get radiation, but I'm not sure how many to expect. Anybody else diagnosed with DCIS who is Triple Positive?

I'm not the depressive type, but I keep thinking.."Is this my life from now on? Pounding heart and sweaty palms each year as I live from mammogram to mammogram, waiting for this to show up one day and kill me?"

My doctor said the lumpectomy and radiation is very effective--99 oercent "cure" rate---and we can keep a close eye on it. But I keep thinking it will show up, Stage 3 or 4 and just take me out...I think I'm awfulizing it because I'm sad and scared. This thing is going to dog me the rest of my life..I just turned 67....Looking forward to retirement in two years and...this.

Just had to vent and see if it resonates with anybody else....thanks for listening.

Comments

  • maggiehopley
    maggiehopley Member Posts: 113
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    I'm sorry that no one with the same diagnosis as yours has responded. I am still in my first go-round (triple positive IDC 2A) and my MO has never used the word "cure" with me, just that we will do everything we can to keep it from coming back. My heart goes out to you and I hope you do get your cure and can retire and enjoy life. My husband is your age and his retirement plans have been derailed by my diagnosis, as our health insurance is through his job; so for now he has to keep working.

  • lillyishere
    lillyishere Member Posts: 773
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    ILC is a tricky one and if it shows up in one breast, most likely is in the other one as well. In my case, a tinny 3 mm ILC was found and no nodes were positive with MRI however, thinking that if the breast created cancer once can do it again, I decided to remove both breasts. Surprisingly, pathology showed ILC was found in the nodes, and LCIS was found in both breasts. ILC is a sneaky type of BC. Talk to your MO and consider removing the breast tissue if continues to create cancerous cells. This is my opinion and it worked for me. I no longer need mammograms or scan for breast lumps.

  • cyathea
    cyathea Member Posts: 334
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    kimrochelle, I hope you are well. To give you some hope, my mother had cancer in one breast and then 30 years without a problem. She got lobular cancer in the other breast when she was almost 70, and six years later, she is still doing great.

    Try to ignore the stats and take comfort that you could be like my mother. ((Hugs))

  • mavericksmom
    mavericksmom Member Posts: 1,193
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    I don't have the same Dx but just got diagnosed with breast cancer for a third time! First time, IDC, treated with two lumpectomies (to get clean margin), 24 lymph nodes removed, they were all negative, the sentinel node biopsy failed, chemo and radiation (31) immediate severe lymphedema in my arm.

    Second time, almost 16 years later, same breast but ILC, mastectomy and AI which I only took for 6 months, Oncologist wanted 5 yr.

    Now, high grade DCIS with microinvasion, will have mastectomy, sentinel node biopsy and then wait for pathology to see what next.

    I wanted both breasts removed in 2019 and was refused because I am not BRCA+. I should have gone elsewhere but I didn't and that's on me.

    Had I had a bilateral mastectomy, not only would I not be going through the health issues cancer brings, I would not be going through the financial issues either! Fortunately for me, I had my records transferred to a local hospital and met with my new breast surgeon prior to being Dx. Makes a huge difference having chosen my doctor prior to Dx. I like him, and more importantly, I trust him! Both of the other times I was assigned a breast surgeon. Neither time went well.

    I can't relate to your exact diagnosis, but I can say, if I had it in both breasts, I would get them removed! I am ending up doing that now, because the "healthy breast" my surgeon refused to remove became cancerous, a little over three years after his refusal to remove it!

    Now I am three years older, still working at well past age 65! I planned to retire at the end of this school year (I work in a school), but now will no doubt need to work yet another year! Ugh! My concern is that my DH's health gets worse, and I will be forced to retire early to be a full-time caregiver. As of now he is doing ok, but has trouble walking and uses a hiking stick to walk. (He refused to use a cane, due to making him feel old, so I got him a "cool" looking hiking stick)

    Kim, I hope you come back here and let us know how you are doing!

  • lenaaz
    lenaaz Member Posts: 13
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    I am really sorry that those of you on this thread have to deal with more treatment. I will have you in my thoughts.

    If any of you have the leisure, I am wondering how you knew what screening/monitoring you needed to do. I have a high risk of recurrence but both my oncologist and my primary care doctor say that they won't do "survivorship care," not even at the level of recommending screening. I have been unable to find any screening recommendations specific to my case online (IDC treated with chemo surgery radiation). Currently, I have no plan at all for any screening that I wouldn't have had without the cancer. Maybe that's what supposed to happen? Just weirded out by being dumped back in the pool as if cancer had never happened.

    Thank you all -- already learned a lot from your posts.

  • maggie15
    maggie15 Member Posts: 989
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    Lenaaz, I'm sorry that your were dumped without a plan in place. Have you considered going to to a gynecologist or women's health clinic for checkups? While they are not oncologists, they do treat precancerous conditions in women and are tuned in to cancer prevention and detection. Make sure that you transfer the actual medical records for all of your previous treatment (not just the patient summaries) so that they will know your medical history and exactly how you were treated. Good luck finding someone to look after you.

  • malee
    malee Member Posts: 2
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    kimrochelle I too ask myself "is this as good as it gets?"