Not sure what to do

Lee-Ann
Lee-Ann Member Posts: 5
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Not sure what to do
· Share on FacebookShare on Twitter

Comments

  • Lee-Ann
    Lee-Ann Member Posts: 5
    edited October 2008

    Was diagnosed on the 2nd of August with BC had a Mastectomy and tram reconstruction plus L breast reduction on the 19th August. Results came back, R breast had a 17mm invasive lobular carcinoma L breast tissue also came back positive for DCIS which has really thrown me, not sure what to do as my oncologist has but me on temoxifin and wants to start radiation therapy as soon as my scars have healed. I have a gut feeling that more needs to be done, has any one got some suggestions for me?

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited October 2008

    Lee-Ann, did your onc run Oncotype DX on your tumor sample? If you get a low score on that, you will probably be fine without chemo. If you score in the intermediate range, you can start thinking harder about chemo, and if you score high, then you should do chemo. Basically, Oncotype DX looks at the genetics of your tumor and determines how responsive to hormone therapy the tumor is. A low score means HT should work for you better than chemo, a high score the opposite. A low score also means you have a lower chance of the cancer spreading beyond the breast, a high score, a higher chance. You can read more about it at www.oncotypedx.com

    Your age factors in to this, too. I was 38 at diagnosis, and had four docs tell me I had to do chemo. My tumor was 2.7 cm, moderately hormone positive, with an Oncotype of 18, which is the low end of intermediate.  

    · Share on FacebookShare on Twitter
  • Lee-Ann
    Lee-Ann Member Posts: 5
    edited October 2008

    Thank you nash for your reply, have been thinking a lot and will be seeing another onc a female this time and will ask about the oncotype DX as this is the first time I have heard of it. Once again thanks.

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited October 2008

    You're welcome, Lee-Ann. I'm glad you're getting a 2nd opinion, and I'm amazed your onc didn't mention Oncotype. It's becoming the standard of care, and is perfect for women in your situation--negative nodes, hormone positive, etc. That's what's so great about these boards--we can share information with each other that the docs don't bring up. Good luck with the new onc, and keep us posted.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Hi - am just now seeing your posts...was wondering what has been decided? Hope all is well. (btw - my sister's name is LeeAnn! Not a very common name!)

    · Share on FacebookShare on Twitter
  • mreilley99
    mreilley99 Member Posts: 149
    edited October 2008

    hi ladies, does anyone have mets from ilc to the gastrointestinal or colon mets? i have blood on my "wipe" bright red, blood around the stool and frequnecy in movements. i have a appt this tues with the doc (colon) but i am VERY anxious to hear from anyone out there? please reply to my email or here...mreilley99@hotmail.com

    thanks so much

    · Share on FacebookShare on Twitter
  • Lee-Ann
    Lee-Ann Member Posts: 5
    edited November 2008

    Hi Mreilley, have just been to a gastro doc myself with the same problems as you and was found I had a anal fissure which was the cause of the blood and irritable bowel syndrome which is the cause for the loose bowels so try not to worry to much until you have been. My understanding is colon cancer is not a secoundry to breast.

    Hope this is of help.

    Lee-Ann

    · Share on FacebookShare on Twitter
  • Lee-Ann
    Lee-Ann Member Posts: 5
    edited November 2008

    Hi Laura,

    Thanks for the reply things have taken a while to get under way again after the operation, but on the 4th of this month I am off to see a medical oncologist to talk about chemo. I am not having radiation therapy to the left breast as it destroys the breast tissue and later on if I had a recurrence of BC they would be limited in the reconstructions they could perform as radiotherapy and implants do not go well . I found all this out when I went for a second opinion which is the best thing I have done. My first surgeon gave me none off this information so you do have to be very careful in who you see.

    Hope this finds you well.

    Lee-Ann

    · Share on FacebookShare on Twitter
  • mreilley99
    mreilley99 Member Posts: 149
    edited November 2008

    lee-ann... thks so much. i have an appt on tuesday. i have recently read some internet articles about lobular bc going to the colon more often than was previously thought because it is so difficult to detect from the pattern that it goes. (single file and flat) i have zero pain but def blood after wiping and also around the stools themsevles. any advice is appreciated1

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    mreilley-----my mom has had both ILC and colon cancer, but hers was a totally new cancer as far as I know.  she is a 22 year survivor of the bc, and  6 year survivor of the colon cancer (actually had it twice).  Had lumpectomy, radiation and tamoxifen for the bc; had 2 hemicolectomies for the colon ca. Unfortunately we have a history of both cancers in our family.

    Anne

    · Share on FacebookShare on Twitter

Categories