Mastectomy vs Lumpectomy with a Lobular diagnosis

quaydvt! What an uplifting message you have!!! Here's to bumps in the road that we successfully navigate!! Yay to you! May your healing and awesome attitude continue !!!

you are in my prayers!

quay, Your attitude makes all the difference! I too have an upbeat attitude knowing my decision was the best for me. I am 2 1/2 years post bmx. I had recon but attitude is everything!

Blessings, Robin

sounds good Chloesmom.

I see it’s been about a year since any posts on this thread...I am currently in the position of deciding on lumpectomy or bilateral mastectomy. Any ladies still around these boards that can give an update on your situation? Still happy with your choice

I had a lumpectomy in December 2016, followed by chemo then radiation. I would prob do it differently today. I would have a complete bilateral mastectomy and skip the radiation. For me radiation was worse than the chemo from day one. I'm still fighting fatigue and my last radiation treatment was June 7 th, 2017.

Hi everyone...I had one IDC tumor and one ILC. The ILC was missed on both the 3D mammo and ultrasound. It was only picked up on a preoperative MRI for the IDC. That was the main reason for my decision to have a BMX. So difficult screening and knowing I would refuse anti hormone treatment helped me to decide on a BMX. I had direct to implant reconstruction which I'm happy with. I'm 3 years NED.So far so good! Hope this helps.

Hi Meow13. I had a BMX and still take the AI's (i'm on exemestane - letrozole didn't sit well with me!). They don't just protect the other breast, they help prevent/minimize distant recurrence - bone, lungs, etc. The breasts aren't the only place that can be affected by BC.

You know I probably didn't say it correctly. Risk of a new primary estrogen positive cancer in the other breast was a strong reason to take AI drugs, bmx can reduce that greatly. But the recurrence in a distant location also can be lessened with AI drugs but I have yet to see the risk reduction percentage in that case. It may also relate to stage and lymph node involvement.

I agree with you there Momine - my oncotyping showed me as mid-range (~14%) possibility of distant recurrance with tam (can't take that d/t also on wellbutrin), chemo on top of that wouldn't decrease that considerably, but taking the AI to cut that back by another 50% seemed well worth it to me. Depends on your tumour-typing and how well you tolerate the AI I guess. Meow, I guess my point earlier was just that I wouldn't consider them "not that important" as a general rule just because I had a BMX. Another one of those "it depends" situations

I hear you, Meow. I suppose they can never know if one nasty little cell managed to sneak away from the original mass and by-pass the LNs. It is an ILC after all and I guess that's the theory behind the AI's afterward. Micro mets that no one would have any way of detecting. I didn't do a BMX because it would give me a better chance of survival - I know full well it doesn't. I did it because I wanted my life to have as smooth a road as possible now that I am about to retire. Didn't want the likelihood of a 2nd or possible 3rd surgery to get missed margins, plus radiation, and if I was gonna take one, I figured take both and keep myself balanced No recon so easy recovery and far fewer complications. No regrets at all.

So, I'll take the exemestane and live with the few issues that I have with it and be reasonably comfortable that I have done what I can to come out of this in good shape. One year in and so far, so good. My BS is happy as is the MO.

Teaberry, I quit at year 4 my oncologist was ok with it. I did it as long I could stand the side effects.

Those charts look they go out for 15 years, does that imply the patients were taking AI drugs for 15 years?

Look at the difference between 5 and 10 years.

Meow - They are saying 5 years for now and still researching if 10 years is better. Here is a link to the whole presentation.

https://ldi.mediasite.com/Mediasite/Play/67ea41715f004df4b0d2956023fdd7a21d

My diagnosis of ILC came at 51 years old, after neglecting to have a mammogram for 6 years. Biopsy was discordant, lumpectomy didn't yield clean margins, and I felt like a ticking time bomb. Instead of an additional lumpectomy with sentinel node biopsy, I opted for a BMX. For me, it was the best choice because I'm always worried about something and I need to sleep at night. Thankfully, my nodes were clear and I won't be needing chemo or radiation. I started my 5 year plan on Tamoxifen. I'm in week 4 post op from the BMX, and I start expansion tomorrow. I used to think I was tough with pain, but this surgery was quite humbling. I still struggle with range of motion and hand strength. I am always uncomfortable with any material against my chest, cannot find any type of sports bra or T-shirt that feels good against my skin, I have constant phantom boob sensations which probably are the most difficult thing in my opinion. I have no regrets about the surgery, but I do wish I was better prepared for the little things that I have been experiencing. I'm still unable to sleep on my side, driving is not even on my radar yet, being a passenger in a car is brutal because all the bumps are painful, and the loss of my independence has been stressful. I keep telling myself this is finite.

could someone with more knowledge on invasive lobular carcinoma comment on this article I read? Especially where it talks about survival I'm a little freaked out.https://www.dovemed.com/diseases-conditions/invasive-lobular-carcinoma-breast/?trendmd_shared=0

Hi there. This looks like a standard overview article, by which I mean it's not wrong but it is pretty vague. Reading about survival rates is always heart-stopping, but there is such a difference between Stage 1 and Stage 4 recurrence and survival rates that lumping them into one category isn't particularly useful.

I guess my point of view is to take this journey one day at a time; look forward and not back; take the drugs that will help unless side effects are overwhelming; and get back to the basics of eating right, exercising and enjoying life.