Totally Overwhelmed

soccerstorm38
soccerstorm38 Member Posts: 7
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have been reading everyone's post regarding ILC and treatment options.  Stats, scores......ugggh!

I have ILC (see stats below) and will be going to get my Onco test results this morning. It is very difficult to know with so many numbers which ones are an important factor in making a decision.

In addition to the numbers game, my surgeon who did the lumpectomy told me I have other lobular foci in the same breast. Does this mean I have a greater risk of another cancer showing up down the road?  Should I just take the whole breast off and just do radiation and tomoxofin?

I keep reading comments about post menapausal women with onco test. Is this a factor?  I just turned 40, pre-menapausal.

Unfortunately I have to make decision today. Chemo is tentatively booked for this thursday. My last surgery was done on April 12th so my window is closing rapidly....

Maybe check back after I get the test results.....The last thing I want is to wonder down the road if I made the right decision.  I have 3 children, two of which are under 5.

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  • hlya
    hlya Member Posts: 484
    edited June 2010

    soccerstorm38:

    I was told by the ladies here also the docter that ILC tends to be multi-focal.  But MRI sometimes is very sensitive - which means the suspicious area detected by MRI could turn out to be B9. 

    What's your Oncotype score? 

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2010

    Hi,

    sounds like you are doing all the right things-- not sure what lobular foci means, but we have a similar diagnosis...... I would aks the dr. then get a second opinion---  also remember, you are having chemo---- (or you may be) based on your oncotype score..... that is a big gun to throw at this...

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  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    soccerstorm38--the oncotype test was first based on premenopausal women with no nodes involved, so it would certainly apply to you. And it is increasingly regarded as a strong indication of the effectiveness of chemo in individual cases.

    You should ask your onc what s/he meant by lobular foci, and if s/he thinks a mast is called for.

    Unfortunately, no matter what you decide, you can never be certain it was the right [perfect?] course of action. All you can do is make what seems to be the best choice given the evidence you have, and try not to second guess yourself. But isn't that what's called life?

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  • soccerstorm38
    soccerstorm38 Member Posts: 7
    edited June 2010

    Thank you to everyone for your reply's.

    Well yesterday was interesting.

    My oncotype score was 14. The decision was no chemo by the doctor and I went along with her recommendation. It was said on the oncotype score that chemo would not be a big benefit.

    Overall my scores were:

    ER+: 9.5

    PR+: 7.9

    HER2(neg): 10.1 (I am close to the equivocal score of 10.7) Not sure if this is a factor in anything really.

    In 10 years time my risk roughly 33%.

    I am hoping I have made the right decision. Chemo seems like alot to put myself thru.

    If I am reading these results correctly the recurrance chart reads...on Tamoxofin only my risk increases in 10 yrs to apprx 33%. If tamoxofin and chemo in 10yrs time my risk is about 10%. The chart of % decrease in distant recurrance at 10yrs shows 0% absolute benefit.

     I think everyone should go thru a medical, chemo training lesson before dealing with making all the decisions. I feel like I have to just trust the doctor and their recommendation.

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  • Houndmommy
    Houndmommy Member Posts: 377
    edited June 2010

    I'm still trying to understand everything so I'm not sure what I'm missing but....my Oncotype was also 14 but the average rate of recurrance in 10 years is 9% with Tamoxifen.  My oncologist told me that the difference between my chance of recurrance depending on whether I did Tamoxifin or chemo was only 1 -2 % which indicates the risk of chemo didn't outweigh the benefit.  I'm just curious as to why our  numbers are so different even though we have the same score.  I can't find any place where I have a 33% chance of recurrance with Tam. vs 10% with Tam and chemo.  I just want to make sure I am reading this correctly.   I'm right there with you when it comes to being overwhelmed!

    Thanks, Kim

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  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    Soccerstorm,

    I"m not sure I understand the 33% either.  My score was 11 with a 7% distant recurrence risk (with Tam).  I thought I remember reading that without the hormonals, you can double that to 14%., I'm not sure how 33% risk is coming into play. The her2 portion was not included when i had mine done two years ago, so perhaps that is a factor? 

    Don't blindly trust any doctor.  If you are unsure or uneasy with the information you are getting, go for a second opinion.  I would recommend doing that anyway, particularly with surgical decisions.  Some doctors will work like he!! to save your breast, while another wants to lop it off.  But all in all, two opinions are better than one, especially when it comes to your health.

    MM 

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  • Dawn46
    Dawn46 Member Posts: 80
    edited June 2010

    Is an Oncotype score a standard test with breast cancer? I dont remember him giving me a score at our 1st visit. I go for my 2nd Oncologist visit this Friday and give him my decision on what type of chemo treatment I want. I was given the option of 3 different ones. TC , TC w/Adriamycin or TC w/Avastin. The second two were clinical trials. I am leaning towards the standard TC. I had a lumpectomy on 6/1 w/a SNB.

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  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    Hi Dawn,

    The Oncotype DX is being used more lately.  It could be that your tumor was more than 2cm, so you would more likely get chemo. But don't hesitate to ask your onc about it.  The turn around time is about two weeks, so you wouldn't have gotten the results on the first visit.  You have to sign a consent to have the test preformed on your tumor tissue, as it is quite expensive. Mine was around $3300, but insurance covered 90%.  You can learn more about it on Genomic's website www.oncotypedx.com  

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  • Dawn46
    Dawn46 Member Posts: 80
    edited June 2010

    I was also given a KI-67 score of 15-20%. Is that similiar to the Oncotype score?

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2010

    The KI-67 is a measure of how fast the cancer cells are proliferating.  Your score is in the slow category (versus moderate or fast).  This inidicator is not the same as the Oncotype.  Hope this helps.

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  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Dawn--You really should get the Oncotype test. The doc may be impressed by the size of your tumor, but ILC tends to get low risk scores. You may not need chemo, or it may do more harm than good. Most insurance covers the test now, and if it doesn't Genomic can help you.

    soccerstorm and Houndmommy--these numbers games are a pain, but there is no 33% risk of recurrence except with surgery only. If you are strongly E/P positive, HER2 negative, and Grade 1 or 2, chemo tends to add little to your benefit. Trust your onc on this one.

    KI-67 is included in the Oncotype score.

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  • Dawn46
    Dawn46 Member Posts: 80
    edited June 2010

    Thank you very much for the information about the Oncotype. I had my second visit yesterday with my oncologist and had asked him about it. He said he brought it up at the board meeting that meets each week. When they were discussing my case, the other doctors thought due to the size of the tumor that they really didnt think that the score would be low enough to rule out chemotherapy. I have my 1st round of 6 of TC scheduled this Friday 7/2. I opted not to have a port placed. Has anyone else gotten their chemotherapy by IV vs port?

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2010

    Dawn

    I had my chemo through an IV--- no one ever suggested a port..... I had 4 treatments and I just had them alternate hands for the IV_- I never had a problem--but I also have very good veins-easy to find---- sounds like you have made up your mind to do chemo--- I think you will find that it is  not nearly as bad as you imagine.  One piece of advice I got that I followed to the letter-- do everything they tell you to--take the pills when they tell you to, do the neulasta shot when they tell you to,  call them if something doesn't seem right.  They really have made this process much better than in the old days..... you should not have to suffer at all....

    best o luck

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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2010

    Dawn - the oncologist I visited with prior to my surgery suggested that if my tumor was bigger than 2 cm I would have chemo, probably not if it were smaller than that. The tumor ended up being 2.1 cm. My breast surgeon ordered an Oncotype DX test and my score came back as 11. If I'd stayed with oncologist #1, I would have ended up with chemo when, according to my Oncotype DX results and oncologist #2, it would have done me more harm than good. She did not offer me chemo. Tamoxifen is supposedly my best line of defense here. If your insurance covers it, it would be good to know how your tumor scores so you can make a fully informed decision...

    Soccerstorm - I'm with the ladies above: the 33% number doesn't make any sense. I think my risk increases about 1% a year or so, with it being about 10% at 10 years. It's all conjecture, really, since on paper I had less than a 1% chance of developing breast cancer at all, but still...

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  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Dawn--ports are especially suited for people like me, whose veins are hard to find. I had one put in and it's no big deal, but chemo can be hard on the veins. As it happened, I didn't do chemo, but I still have the port, which can be used for blood draws, etc.

    Your doctor and his board are of the school that believe size is a deciding factor with respect to chemo. The oncotype school put more emphasis on the nature of the tumor.  Size may or may not reflect aggressiveness, but it is an easy characteristic to evaluate.

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  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    Dawn,

    Does you doctor have a solid reason for not ordering the Oncotype DX?  Why would he not use all available diagnostic tools before suggesting a chemo regieme?  You might want to request this again.  At least you will have piece of mind about your treatment decision.

    MM

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  • julia2
    julia2 Member Posts: 183
    edited June 2010

    Dawn, Get the test.  My Onc. said my tumor was so small there was really no chance I'd be high risk for recurrence and need chemo so he didn't see a reason to do the test.  Guess what, I insisted on the test and I am high risk (score 33), so now I'm getting chemo.  Judgement calls are just that, get the test.

    Julia

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