ILC and recurrence?

Sorry if this just makes your conundrum worse, but I suspect the reason for the MX after LX is that quite often ILC proves more extensive than pre-surgery testing indicates. That means they don't get clean margins with the LX and have to go back in. In my case we knew the tumor was huge and that MX on that breast was a given. That was obviously bad, but in retrospect, it did save mecertain hard decisions

I had a lumpectomy. I really didn't want a Mastectomy unless totally necessary and my surgeon said it wasn't. There are a lot of things to take into consideration though, size of tumour versus size of breast and what the cosmetic outcome will be. I had fairly big boobs (36DD) so my 3.5mm tumour could be removed without a bad cosmetic outcome. I still have nice boobs, however one is slightly smaller than the other one, but I can live with that. Also because often ILC tumours are found at a later stage because of the difficulty in detecting them, it can mean they are larger when found and there isn't always an option. I know what I am facing in the future. It has been one year now since my surgery and I have had my first mammogram and MRI, they were fine. They are also keeping a close eye on me, which is really reassuring. There is no guarantee even with a mastectomy that the cancer won't come back in the same place or somewhere else. I sailed through Radiology, only got a bit tired towards the end. I didn't need Chemo. I am on Femara for the next 5 possibly 10 years. Good luck with your decision.

Hi, sorry you have to join us, but you'll find we help each other a lot here, so you aren't alone in your worry, confusion, anger and fear. We are all either there with you or have been there.

I waited 18 months to have my BMX and immediate recon after my txs were over. I wasn't sure I wanted to make that very important decision in the throes of shock, worry, and confusion when I had my lumpectomy, which WAS my biopsy and dx.

Waiting allowed me to do extensive research, interview several doctors and find the best surgeon and plastic surgeon for me. I believe that overall the rate of survival is the same as with no rads and BMX or lumpectomy and rads, so I felt okay waiting as I did, although as the ladies above have noted, ILC is harder to detect on scans. That ILC knowledge, coupled with my very dense breasts (also making it hard to find problems), inspired me to get rid of all the tissue in my breasts that I could. And the good breast did reveal some hyperplasia that wasn't detected and could have caused problems later.

I am VERY happy with my decision: lumpectomy, chemo, rads, BMX and recon. It all worked out great and although you may read about scary problems on this board for all different kinds of treatment, my problems were minimal. I chose to stay small so I didn't have to go through the expander thing; very little pain with my surgery from beginning to end. No post-surgery problems either. Good luck, hermana. It will be okay.

Claire in AZ

We all need to make very personal choices. I tried for LX . Needed a re-excision. Then because margins still were not clear, required MX. At that point, I chose BMX for symmetry and peace of mind (dense breasts). Glad I did because my cancer turned out to be bilateral as well! You will make the best decision for you based on your needs and diagnosis. Then, you will be able to start healing. Best wishes.

Hi Trvler

This website is an amazing resource of support, information and advice based on our individual experience of lobular breast cancer. I hope you make time to look at the huge amount of info the lobular community have written. I was just another text book case. Clear mammograms since 40 then at 45 diagnosed with a breast full of lobular bc. In fact it was only because I insisted on the ultrasound being done while I was sitting up that they found it. When I was lying down the couldn't see it on the ultrasound. The subsequent mri diagnosed a very diseased breast whic was vastly different to the tiny spot the ultrasound noted. I hope you have all the info you need to tackle this particularly tricky and evasive lobular breast cancer. The women in this subset can offer you great support and for myself I find the info very helpful and comforting to know I can contact my lobular sisters from here new zealand to across the world. Best wishes trvler.

It is a very personal choice, good luck to you.  Long story, short I tried the LX in the right breast with no luck for clear margins, only to wake up from surgery to the BS and my husband standing over me to tell me that I still had a 7 cm mass in the right breast which catapulted me to the Mastectomy option.  Further testing revealed that I had micro calcifications in the left breast and was told by my BS that if I didn't consider a BMX I would probably have cancer in the left breast in 3-5 years and do this journey again.  So BMX I had with no reconstruction.  I have had 4 rounds of TC chemo, 33 radiation treatments, taking Femara and now I have lymphedema.  But, I am still fat and sassy and full of life!!!! 

NY2, you should ask the breast surgeon what her lymphedema rate is among patients with axillary clearance. After my surgery, I learned that this rate varies a great deal from surgeon to surgeon, and some surgeons are more delicate than others about not damaging the lymph system any more than absolutely necessary.

Second, whichever surgery you get, insist on seeing a lymphedema-certified PT for pre-op measurement and after surgery for follow-up. There is good evidence that early intervention can ward off a lot of problems associated with lymphedema.

Third, staying in shape can help both lymphedema problems and against the cancer. It can also help significantly with other SEs of treatment.

Astrid, not for nothing, but that is just plain rude of your cancer to keep coming back like that. AIs are tons of fun, but after the initial roller coaster of SEs, I am doing pretty OK on it. Patience.

Hi there

THere is a good thread somewhere by Beesie about the difference between mx and lx--I recommend that you take a look at that.

I am over 6 years out from ILC--- like many before me, many fine mammograms, then 6 months later-boom--- a 1-2cm ILC lump--- could have knocked me over with a feather---

Surgeon never suggested mx-- said it was small, discrete and she is all about breast preservation-- and she turned out to be right--- no nodes, slow growing--- I did do chemo (my oncotpye was in the mid range) and rads and 5 years of hormonals. I honestly never considered an mx because she thought it was surgically unnecessary--

I have a mammogram every year, see my onc at the same time-- so a little anxiety provoking-although it has gotten easier since the biggest risk of recurrence seems to be in the first few years... but I am compliant- because I know it could return so I go to every visit--- I have an MRI every other year now--it was once a year, but I stopped it---- didn't make sense to me. I hate the testing (as everyone else does) because it is a reminder that they are looking for something... but at the same time, I leave those tests feeling like the healthiest person in America. A tradeoff for sure....

good luck

NY2 - You are dealing with a layer of issues right now and my heart goes out to you.

When anyone from your clinic mentions guidelines, it's helpful to know whose guidelines they are referring to - are they following ASCO recommendations? I know when it came to my micromet sentinel node, I was shocked to learn that my BS didn't plan to remove any more nodes after the lumpectomy. He cited a recent study showing that women who have ALNDs with LX do no better survival-wise than those who have SLNBs. I remember being very worried about that. However when I moved on further down the road to my BMX, my new BS ended up removing 17 more nodes, all of which were clean. I was never clear about the "why" of her decision but I didn't question it because I totally trusted my new team. My case may have been further muddied by the fact that I had neoadjuvant hormonal therapy. I later read an ASCO guideline that made sense to me. Here is a link to ASCO care and treatment of SLNB you may find helpful.

http://www.instituteforquality.org/sentinel-lymph-...

If I"m reading this guideline correctly, you are just above the cutoff for doing ALND. Of course there are many variables to consider. Maybe it's just a matter of asking which guidelines your clinic follows and then having your doctor(s) explain them to help clear up some questions for you regarding the nodal surgery. Then again, if the two different doctors are following two different guidelines, it's hard to be on the same page. It sounds like your MO is really looking after you.

I can understand your hesitation about general surgeon vs. specialist. Like Momine said, some are better than others....yet another consideration (sigh). Whenever I 'interviewed' surgeons I asked how many BMXs they did per year, but I didn't know I could have asked about LE rates. Interesting. Like you, I felt pressured to get the surgery done as quickly as possible, especially after 2 failed lumpectomies. I opted to go with a breast surgeon for a LX vs. a local general surgeon for a MX. It was a hard choice because they were both very experienced, but who knows if that was the best option. As it turns out, I ended up changing providers midstream and all told, went to 3 different docs and clinics during the course of my treatment in search of the best care. Long story short, I ended up at a major cancer center that is a 3 hour drive from my home. I'm so glad I switched. My team takes time to explain everything to me and I trust them implicitly. The most important part of all of this is finding the right providers. If you can find the right doctors, they'll help you figure it out.

I agree with all the ladies saying that it is sneaky and does not show up on scans etc...I was checked every year- mammo and u.s for last ten years it never showed I found lump myself when it grew to a spot I could feel. They said my cancer may have started 7-8 years ago or more and never showed had 9 cm tumor and 17 cancer nodes all did not show. I did not get found early at all like many ILC ladies. Just something to keep in mind  

I went from lx to mx to dmx decision

Trvler it almost makes me wonder if our tumours started life as cysts or ingrown hairs or I don't know what else, and after years turned into cancer. I'm sure I got a bad hit by something where I got my tumour and it was so long ago I can't quite remember, but I think it was a stone being flicked out under a lawn mower. I've often wondered about that or thought maybe it is just my overactive imagination making things up?

If you do see your MO, ask him/her if they'd consider doing BRCA testing and an Oncotype before surgery.