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Thursday, March 11, 2010 Teresa Tuttle, Community Member, asks

Q: recurrence of Lobular carcinoma

In June, I was diagonsed with Invasive Lobular Carcinoma at age 43. My cancer is HER2 negative but Estrogen and progesterone positive. I had a biateral mastectomy. My tumor was 8+cm in my right breast and I had a no lymph node invasion!  yahoo. Following surgery, I had 4 AC treatments every other week, followed by taxol treatments every week for twelve weeks.  I am completing my 32nd consecutive radiation treatment on Wednesday, March 17!  As I prepare to enter the world of, "Ok, your treatments are over, go live a normal life!", I am growing increasingly anxious!  Specifically, since lobular carcinoma is difficult to detect..... how will I know if it returns somewhere other than the small amount of breast tissue I have on my left side.?  What kinds of symptoms have other patients with recurrences experienced? 


My second question is, " Tamoxifin has some side effects that I am very apprehensive about!  5 years of menopause symptoms is enough to make my head spin!  What are the studies that compare use of Tamoxifin to not using it as far as recurrence?  My doctor tells me my rate of cancer returning is 8% less if I take it!

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Answers (3)
Phyllis Johnson, Health Guide
3/11/10 6:05am
Teresa, you are entering one of the scariest periods in breast cancer--the time after treatment when you are no longer seeing a doctor as often and you are worrying about recurrence. Everyone goes through this phase. I can't get the gizmo that makes links work on my computer right now, but if you type "Follow-up Care: Balancing Faith and Vigilance" in this website search box, you'll find an article that answers some of your questions and that may help you put cancer into past tense. Reply
Phyllis Johnson, Health Guide
3/11/10 6:09am
Oh, and about your question on whether Tamoxifen is worth the 8% reduction in recurrence risk. You need one other number to make the decision--the starting point for that 8%. If your risk of recurrence is 75%, then you might decide that you want to do everything possible to reduce your risk. If your risk of recurrence is 10%, you might feel differently. Ask your doctor for that number. It varies considerably from person to person. Reply
PJ Hamel, Health Guide
3/11/10 8:55am

Hi Teresa - Here's Phyllis' link on follow-up care . She's right - it's scary to be done with treatment, and face those feelings of "Who's going to take care of me now?" With a bilateral mastectomy, your chance of recurrence in either breast is reduced to a minuscule number; and without spread to the nodes, your chance of a distant recurrence (outside the breast) is also mpretty minimal. Your chances of living a long and healthy life are REALLY high, so focus on that, not the tiny chance you might have to deal with cancer. And know that time heals; it really does. I had invasive lobular, with lymph node involvement; and I'm 8 years out, doing just fine. You'll get here, too. Good luck - PJH

Sue Ryall, Community Member
1/11/13 5:12am

Hi Phyllis


That's very encouraging - as your original reply was very nearly three years ago I trust you are still keeping well?


My wife Sue was diagnosed with invasive lobular cancer in June 2010, had a mastectomy in August followed by 6 chemo. cycles ending Jan. 2011. It hadn't spread to the lymph nodes and the margins were declared good. She has recently completed breast reconstruction but is worried about the cancer spreading to the good breast, so any reassurance you can give her will be very much appreciated.


Can you do this by emailing her at



Many thanks


John Ryall



PJ Hamel, Health Guide
1/11/13 4:08pm

John, cancer doesn't spread from one breast to the other, so don't worry about that. It can spread from the affected breast to other locaitons in the body, but with clear margins and no spread to the lymph nodes, plus her having had chemo, that's unlikely, too. I'm an invasive lobular survivor - going on 12 years, so tell your wife best of luck from a fellow ILC survivor! Take care - PJH

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By Teresa Tuttle, Community Member— Last Modified: 01/11/13, First Published: 03/11/10