ILC Recurrance

Thanks for sharing this, Itsjustme- I appreciate the article from the Mayo clinic!

Encouraging

thanks

chocolate

You're both welcome.

I had never looked it up until I saw the question - I was very relieved to find out  that my friend who had told me that was correct.

ILC recurs if at all it's between 18 and 24months, and/or at 5 year period. They have done lots of studies and you can find them by googling ILC recurrence rates.

It's funny that this topic came up; I was about to post a question about post-five-year follow up.  I had ILC (and positive nodes), dx in early 2006.  I was able to have lumpectomy with clean margins, then TAC chemo and 33 radiation treatment, then about 5 months of Tamoxifen and now 5 years of Femara.  I have been sailing, so my last mammogram, MRI (which is how the ILC was found) and ultrasounds, and visits to surgeon and oncologist, were in late 2010 and early 2011.  Saw my primary care doc in summer 2011.  Everything good.

I'm heading back to the US and seeing the surgeon, the onc and my primary care doc.  The surgeon has ordered a mammogram (digital, of course) and then I will see her; I'll have blood work and see the onc.  My questions for other ILC'ers:

---What follow up screening are you doing, and in what intervals, at the post-five-year mark?

---If you are on Femara or other AI's, what are your docs saying about continuing to take it after five years?

suzfive - Thank you.  I have never done tumor markers either, so don't expect to start.  Also no scans ex the mammography and MRI.  Because the cancer was not discovered on mammogram (I had a DCIS with a micro-invasion in the other breast, which is why she ordered the MRI in the first place - didn't expect to find anything, but the ILC showed up and then I turned out to be node-positive) we have done MRI twice a year for several years and then once a year.  It looks like we had similar experiences, and at the same time, too.  Really appreciate the input.  I'm hoping for a Femara reprieve; I don't have awful symptoms, but would be happy to have thicker hair and less achy hips, feet and hands.

When they say "2 years," do they mean 2 years from diagnosis or 2 years from completion of treatment?

Hello ladies, you are a great group.  Out of the blue I was diagnosed in 2009 with advanced invasive lobular carcinoma.  I had 30/31 positive nodes.  They took muscle, etc from armpit where grapefruit tumor was found (secondary).  Months of hard chemo, 5 blood transfusions, CHF from avastin, massive radiation burn seeped for months (very unusual), serious neuropathy, fell and broke ankle, on and on.  I was 3b, took arimidex no matter the side effects, and believe it has kept me alive this long.  Scans were regular, 6 months or so, until they did not know what to do with me.  They changed scans to this summer rather than last fall.  I went to onco at local hospital and he started out by seeing me every 6 months.  He checks tumor markers, large cancer hospital didn't.  I was initially 30..good..next visit 60, concern, next month 90, orderes PET!  I now have metasisis in 7 places and am being treated with faslodex injections, and have stayed on zoladex in tummy.  Last week tumor markers in the 200's, and we stay on same med for 3 months to make sure it won't work. Scan next week and pet in Aug.  This week is the 3rd anniversary of my mastectomy, mammo missed cancer over 10 years.  This cancer lives by no timeline.  I will never give up, I have a 15 year old beauty and we need each other, I am strong mentally, but it can wear anyone down, huh!  Take care all of you.  My mom is 88 and I promised her I wouldn't die before her.  I will be 56 next month.  Thanks.