Lobular cancer - mastectomy on other breast?

Fan · New User Joined: 06 Nov 2004 Posts: 3 Location: London

I was diagnosed with cancer in Feb 04 and had a LWE 2 weeks later. When I went back for my results, I was told that I had to have a mastectomy, chemo and radiotheraphy because I had Grade 3 multi-focal invasive ductal cancer and although they had removed the tumor (3.2cm) they didn't think they had got all the cancer. There was also lymph node involvement.

After discussions with Plastic Surgeon, it was decided to do mastectomy, lymph node clearance and reconstruction (tram flap) at the same time. I had initial operation on 2 Apr, another on 3 Apr and then on 17 Apr reconstruction was removed due to infection. I spend a total of 30 days in hospital because I also managed to pick up MRSA! The pathology report from mastectomy was a surprise as it showed I had extensive widespread invasive lobular cancer (one 2cm tumor, a couple at 1.?, and another four or so at 0.?mm - I can't remember exactly how many or size) which nobody knew was there! It also showed that some lymph nodes had been infected and one had grown a tumor - although I don't understand the differance and would appreciate any info about this.

Next week I am having my last cycle of chemo, taking December off from treatments and having radiotheraphy in January. I have talked to my ongologist about having a mastectomy on the other side as lobular cancer tends to come on both sides and I have multiple cysts on that side. He advised me that I could still get primary cancer on that side and made no comment when I asked if it would reduce the risks. I got the distinct impression that it was felt that there was a good chance that I would be back with more cancer.

I have been positive and have not let cancer rule my life although it sometimes feels as though I live at the hospital and have worked the whole way through and taken the minimum time off work. I am still working a little from home although technically on sick leave as I have been admitted to hospital 3 times recently and spent most of October in hospital. Now I'm in a quandary about whether or not to have a mastectomy on the other side and medically it seems that the jury is still out. Has anyone faced a similar problem?

MuttsMom · Guest

HI,
I was dx Stage III, Invasive Lobular BC 2/14/02. I had a MRM and the tumor was 5.5cm and I had 9 positive nodes out of 16. May of last year, I opted for a 2nd mastectomy, which my surgeon is total agreement and my onco saying that it would improve my odds of it not coming back. There are sure no guarentees with this crappy disease, but Lobular IS prone to mirror itself in the other breast and with the large tumor and positive nodes, it was even more likely to mirror itself. I wasn't going to wait to see if it went to the other breast, so I'm not boobless, but very much alive Smile

If I can help since I've been there and done that, please e-mail anytime. My e-mail addy should be listed on my profile, but if not, add an 04 to this screenname and that's me Smile

Hugs and prayers
Nancy

catmac · Guest

My situation is somewhat similar to what you describe. I also was diagnosed initially with multifocal infiltrating ductal (a little ahead of you - in Jan 04). had a mast. in Feb. and the pathology report came back with infiltrating lobular as well as some small areas of DCIS. I was very surprised - and a little disconcerted to think that all that was going on unknown...I have encountered a few others who had this experience - but not that many. I have also been questioning doing a prophylactic on my good side - but haven't made the decision yet. I finished chemo (dose dense AC and Taxol) in June, then did radiation over the summer. Just had my tissue expander exchanged out for a silicone implant. it is hard to contemplate having yet another surgery - but i'm curious to see Dr. Leo's response to this issue. best of luck, Cathy

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Multi-focal IDC means that several *independent* areas of IDC were found. That already shows that your tissue tends to progress to cancer. In your case a bilateral mastectomy would probably be beneficial.

Let me quote something from uptodate:
[quote]The comparative efficacy of a program of careful observation versus prophylactic mastectomy in a population of high-risk women is uncertain. One meta-analysis included 389 women with LCIS who were followed for a mean of 10.9 years after excision: 16.4 percent developed invasive carcinoma, and the breast cancer mortality rate was 2.8 percent [38]. There was a nonsignificant trend toward a lower breast cancer mortality rate (0.9 percent) among 391 women who were treated initially with prophylactic mastectomy.[/quote]

The study above was only with removal of the area of LCIS. Your case is beyond that, with transformation into IDC.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Guest

Hello, Fan,
My initial diagnosis was ILC in the left breast. I opted for a mastectomy and the path report revealed LCIS as well. I battled through two years of "careful observation" of the other breast, which involved way-too-frequent mammos, ultrasounds, and surgical biopsies (and all the scary throughts that go with that). In the end I just felt thoroughly beat up and I opted for a prophylactic mastectomy on the right breast. The path report came back with two areas of LCIS that we had no idea were there.

Can't say I love being breastless, but I sure do love the reassurance of knowing I've done all I can to promote my best health. The prospect of no more mammos is a mighty nice side benefit.

I wish you real peace with whatever decision you make,
A sister

MuttsMom · Guest

I couldn't have said it better. I did the same thing as you and I know I've done everything possible by having both breasts removed. It's been almost 3 years and so far so good. It just wasn't worth keeping the breast with Lobular and bieng "young" and Stage III. The left breast is the one I had the MRM on and node disection. When they removed the other breast last year, there was no cancer, thank God, but I felt like I was a sitting duck. That black cloud hanging over our heads is bad enough and I wanted to do everything possible. I won't put myself through a Tram Flap, which is my only option due to radiation, so I guess I'll just take my boobs off every night before going to bed Smile

They have so many kinds of prothesis now, they look natural under clothes.
I know you'll make the right decision for you.
Hugs
Nancy

Fan · New User Joined: 06 Nov 2004 Posts: 3 Location: London

Many thanks for all your replies which have really helped me and made me feel less paranoid. I have more or less made up my mind to have a mastectomy on the other side and your comments have made it even firmer. I have a consultation with my Plastic Surgeons on 20 December when I will find out my ongologist's comments to them about a second mastectomy, which could be very revealing, and then I will make my final decision.

Last chemo tomorrow then start of mega get fit programme as want to go skiing 2 - 3 times next year (to make up for no skiing this year) starting February when radiotheraphy should have finished. Currently praying for a really cold winter and plenty of snow in the French Alps!

Once again many thanks for comments and support.

Fan

	Cancer Forums Forum Index -> Breast Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others