ILC Stage 1;No Nodes - Chemo??

AshleySnow
AshleySnow Member Posts: 3

I am curious if anyone has had to make the decision to have chemo when your diagnosis was in the grey area been just radiation/hormone therapy treatment and rad/chemo/hormone treatment.  I just got my surgical path report back and I have ILC, Stage 1; no Nodes (0/2); 9mm, ER+/PR+; HER2-; Grade 2 (Nottingham).  Given the Grade 2 my onc suggested the oncotype DX test so I am waiting on the results.  I have dense breasts with a history of fibroadenoma (2x removed in right breast; cancer in left breast).  There were calcifications in the left breast which was seen as insignificant until I pushed the issue after my third 6-month follow up mammogram. What scares me is the fact that should this cancer spread it will likely hit the stomach/intestional tract/female reproductive system.  So I want to make sure I make the right treatment decision.  ANyone had to make a decision like this?

Thanks:)  Ashley (forgive any typos:)

Comments

  • CorinneM1
    CorinneM1 Member Posts: 539
    edited December 2011

    Ashley,

    I was ILC, grade 1/stage 1 no nodes.  My oncotype came back in the intermediate zone.  But my oncologist recommended no chemo for me based on grade, stage, type, nodes, and a low Ki67 score.  I also did not do radiation, but had a double mastectomy and am on hormone therapy for 10+ years.  I am 39.  I had two oncologists state no chemo, and one said to do it based on my age.  I went with the majority vote and am comfortable with my decision.

    I have made other choices in my life.  I eat much healthier now, organic chicken or turkey and fish on occasion, cut out a lot of dairy, and eat more fruits and veggies. I have a glass of wine rarely (in the last 6 months I have had 2) I also have increased my activity and run at least 3x a week for 3-4 miles at a time.  I feel great and look better than I have in years.  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2011

    Ashley - normally chemo wouldn't be recommended for that diagnosis, but the oncotype dx test seems to be the standard for deciding treatment in the US. We don't have that test available in Australia - I had to have chemo because I was HER2+ve.

    Sue

  • sgreenarch
    sgreenarch Member Posts: 528
    edited December 2011

    Hi. The oncotype test will likely be the determining factor if chemo will be recommended or not. I was stage 1, node neg, oncotype 17. Thats the high end of low risk so 3 oncs said no chemo. I am now on tamoxifen, doing well. Had a mx, so no rads either.

    Good luck!
  • Char2010
    Char2010 Member Posts: 532
    edited December 2011

    Ashley - We have a very similar pathology except I was grade 1. Oncologist said no chemo until my oncotype came back a 20 - then he said it is my decision. I decided to do chemo (lumpectomy, chemo, rads and now on an AI. Good luck with your decision.

  • AshleySnow
    AshleySnow Member Posts: 3
    edited December 2011

    Char2010,

    Thanks for the info.  How was chemo?  I guess you are glad you made the choice?  What is AI?

    Ashley

  • AshleySnow
    AshleySnow Member Posts: 3
    edited December 2011

    thanks everyone for your responses:)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Ashley------my mom had ILC (stage 1 0r 2, I can't recall) with negative nodes many years ago.  Had lumpectomy, radiation, and tamoxifen. Is now a survivor of over 25 years without any recurrences. Still doing very well at 82 years old!

    anne 

  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2011

    Ashley my score was 24. My Onc. left the choice up to me. I chose not to do chemo. My new Onc. was of the opinion the risks outwayed the advantages. I did radiation, and am on Femara nwo. It is one of the Al's, which are drugs to lower our estrogen levels.

  • Robyn_S
    Robyn_S Member Posts: 197
    edited December 2011

    The decision to have chemo is very individual. In my case my oncotype was low 10 and the grade 1. but against that was my age, premenopausal status, tumor size and positive nodes. Given that I was healthy (apart from the pesky cancer ) the benefits of treatment outweighed the risks. I could have decided against chemo but as I refused to have an axillary clearance (based upon recent research and the risk of LE) it was preferred to be aggressive with treatment - I had 25 rads after chemo. Now on tamoxifen. The SE of chemo were tolerable and I am now in menopause which is a plus as my BC was hormone responsive. As has been said by others, it is a very individual choice and I am glad that I had a board of oncologists to advise ( the decision for treatment was debated and my preferences were respected). I could have had rads/ tamoxifen only and that would have been within orthodox tx guidelines. Good luck!

  • ElenaMarie62
    ElenaMarie62 Member Posts: 105
    edited December 2011

    I found my tumor myself this past February, 2011. I immediately stopped taking estrogen (had been on it for over 17 years). I am 62, and have other health issues, some rather serious, so I decided after all the pre surgery testing, that I would have a double mastectomy (and also reconstruction with silicone implants), and I also had a complete hysterectomy in 1993, everything gone. So, when my Onco DX score came back 28, I was not real thrilled, in the intermediate stage, but I still chose not to do Chemo. I tried Aromasin, an Aromatse Inhibitor for 3 months, but could not stay on it. Oncologist, then put me on Tamoxifen. So far, I am doing okay. 

    This is a difficult decision, but I think at a younger age, and if I did not have heart issues and high blood pressure and  a rare disease that causes my throat to swell up inside, then maybe I would have chosen to have chemo.

    But, I feel pretty well right now, and keep my follow up appointments on time.

    Good luck and best wishes. 

  • JennyB100104
    JennyB100104 Member Posts: 237
    edited December 2011

    I chose chemo. My oncologist (at a major cancer center) mildly recommended it--said I could go either way. My oncotype score was only 11 (or was it 13? I can't remember!), but I think my age made it more of an issue.

    For what it's worth, I finished chemo over a year ago, and it's STILL affecting me (see the chemo brain comment above about remembering my oncotype score). It's not a decision to take lightly. 

  • momof3boys
    momof3boys Member Posts: 896
    edited December 2011

    I'm starting chemo 12/29...TC x4. Before my BMX, my oncologist said she was 90% sure I'd have to do chemo because of my age (43) and the tumor was larger than 2cm. When my Oncotype score came back at 16, she said she wasn't so sure anymore, it was in a gray area... But, when pressed, she recommended doing it. I was already psychologically prepared anyway, and mentally need to know that I did everything possible to prevent a recurrence. I know myself very well, and I know it would be nagging in my head if I didn't. I know it's a personal decision and I respect that. We all need to do what we can live with, right?

    Btw, from the very beginning, as soon as I was diagnosed, I insisted on a BMX, even though left breast was clear on mammo, ultrasound, and MRI. Final pathology? A large fibroedema (sp?) in left breast. My oncologist said that if I had any lingering question in my head whether I made the right decision or not, I could rest easy. If I had kept that breast, it would have been closely monitored with MRI or ultrasound every three months. And, it didn't show up on those tests in the first place! Geesh, I'd never get any sleep.

  • Char2010
    Char2010 Member Posts: 532
    edited December 2011

    Ashley - I am glad I decided to do chemo because otherwise it would be a nagging worry for me. But it is not to be taken lightly. The brain definitely went to mush and is still not quite where it was, also still dealing with neuropathy in the feet. If you decide to do chemo look into taking l-glutamine to help prevent neuropathy.

  • Hipline
    Hipline Member Posts: 195
    edited January 2012

    My onco dx score was 16 and I consulted with two oncologists who recommended no chemo. So I passed but I am trying to be über healthy and insistent on regular check ups and blood tests. But I can see from all the ILC posts that it's a sneaky type of BC and I guess only time will tell if it was the right decision. I am also on tamoxifen for 5 years.

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