ILC and recurrence?

"Astrid - I am so sorry to hear about your multiple occurences - absolutely not fair. But can I ask how they found the cancer had retruned following a BMX - do they use MRI? "

thanks NY2..

gee, my heart goes out to you.

these decisions are so very difficult, and who to trust!

I really think that having a conservative surgeon who removed all axilla nodes x2 the 1st time, may have saved me from mets.

In 2002 the SNB was still quite new and I remember my surgeon saying she would not take the risk anyway. 3 nodes? I'd be going for the lot.

For me, that seems more important than whether you have BMX or LX.

It is sneaky, and if you can stop spread from the breast..

gotta be a good thing.

Good luck,

thinking of you, and sending a gentle hug.

and to you too Trvler. It seems you are both really well informed, and I hope that guides you to the right choices for your situations.

No MRI NY2.

I found the ductal lump myself.

The ILC came after breast reconstruction in 2010/11.

I thought it was a big lump of necrotic fat.

Nope.

No BC101, just Aromasin.

How are you going on it?

I had a lumpectomy as my surgeon reassured me that a mastectomy wasn't necessary, I sure hope she's right. I did have very large breasts (E cup) before surgery which is why she opted for lumpectomy as she had plenty of breast tissue to be able to give me clear margins and still manage to be able to conserve the breast. Radiation was not at all a problem for me, I found it very easy compared to chemo. I guess it all comes down to a personal choice in the end. However after doing a lot of research on ILC since my diagnosis and reading up on just how sneaky it is and the fact that it can often go bilateral, I think I would have opted for BMX if I had known back then what I know now.

My lumpectomy experience was not a good one but that could just be because I wasn't a good healer. I had to go back into surgery a month after my lumpectomy to have dead skin removed from under my breasts. It took about 5 months for my surgery wounds to fully heal but chemo may have delayed the healing process. I now have two very lumpy sore breasts due to a lot of fat necrosis from the surgery. I'm due to have my first mammogram since my surgery in April and my surgeon has already warned me to expect false positives due to the fat necrosis. So if I had my time over, I definitely would have opted for BMX for peace of mind and I don't think the healing process would have been as bad. In saying that, there are probably a lot of ladies here that had lumpectomies and had absolutely no trouble at all but that wasn't my personal experience.

Good luck in whatever you decide and go with your gut feeling.

trvler - yes I thought something was wrong about 15 years ago when I felt a pain in breast in one spot. They checked and checked even though I was below age to be checked nothing ever showed till 3 years ago and by that time it was very visually noticeable as well as you could feel it and it was big. I had pain for 15 or so years now I have had mastectomy and feel no pain.

Trvler- nope your not crazy -but its crazy to think that our cancers may have been there all this time undetected.

hi Joyus, I had almost the same diagnosis you, tumor was a little smaller, my oncotype came in at 22. Did they tell you what your percentage of recurrence would be lowered to if you had chemo? When I was told that it would lower my chance of recurrence from 14% to 10% I originally said no to chemo, by the time I got home I was terrified I had made the wrong decision. I kept waffling and it got down to the wire I had to make a final decision. My sister said to me "if you had to make the decision this instant what would it be? My response was to have the chemo. My surgeon said that if you are the type to beat yourself up if the cancer comes and you didn't choose the chemo I should think about it. She also said before the oncotype test I wouldn't have been offered chemo. In the end I did 4 rounds of chemo, I'm not going to lie, it was harder than I thought it would be, had almost every side effect but I don't think I was the norm. I don't want to tell you to have chemo but I remember how hard that decision was and I felt I had to let you know I totally get what you are going through. I think I cried more about that than any other part of the process. Take your time and get as much information as you can about the side effects. For every side effect I got the doctor always had something I could take to help, other than the fatigue, nothing helped with that but it was temporary. I'm in Canada so things might b a bit different here but please ask any questions I would love to help.

I had surgery for ILC on Feb 4, 2015.

My tumor was 1.3 cm, grade 2

estrogen and progesterone +,

and HER-2 negative. My doctor

said radiation and I was fine.

Then I got a 21 on my Oncotype

My onc wants to do chemo. I'm

so confused, I don't know what

to do. I'm a wreck.

Joyus

nicky9doors, thank you so much for telling me your story. It immediately made me feel less weird that I'm not alone in struggling with this decision. So far it's been just following what the doctors told me to do. But now I have to make the decision and I'm so afraid of making the wrong one. I do have 2 appts. this week, one with a radiologist and one with a different onc to learn more and to hear the opinions of other specialists to help me to decide my follow up care.

Just wondering,

has anyone here felt a lump that did not show on the u/sound, but with PET or MRI it did show?

I can't decide whether to check further, or just let it go.

Obviously with ILC, it's a strange new world.

Joyus and NY2...tough decisions, I know, and hard to get clarity when you are stressed.

I wish you peace with which ever way you decide upon.

Astrid.

I had a bmx and my oncologist told me if my cancer comes back it would be stage 4, up until that point I had been in denial and thought after the surgery cancer would be a thing of the past. Sometimes I do wonder whether everything I did was overkill but it's done now and I know I did everything I could to prevent it from coming back. Although I thought I was doing everything I could to prevent it in the first place. It is a crapshoot isn't it?

"What I find interesting is how much they doctors seem to underplay ILC. My second opinion BS said she thought it started as IDC but has elements of both. Should that matter to me in terms of recurrence or difficulty seeing it on imaging?"

Yes, I agree - ILC is underplayed. Personally I think there should be specialists who work just with ILC. As to your question, if it were me - yes, I'd be more vigilant with following up and not relying totally on imaging. However, I think your doctors would do that anyway. I believe CTs scans are better for picking up on ILC, but I could be wrong.

I know what you mean about appearances....but after the cancer is out and everything is said and done, we want to be restored as much as possible. That is part of the healing process (well, it was for me anyway). So you have to take everything into consideration, including appearances, since that might mean further surgeries. It pays to be informed, and you really are, Trvler - so much more than I ever was! When I was first diagnosed and decided on my doc and treatment plan, I had NO CLUE as to how things might go. I was not at all informed that it might take 2 or 3 attempts with lumpectomies, believe it or not! It was quite an emotional roller coaster, just because I wasn't prepared or knew what to expect. You're very wise to be weighing all your options carefully.

I was here a few times shortly after my diagnosis, but didn't hang out much because my treatment plan was so different. I had neoadjuvant hormonal therapy and there aren't too many women who pursue that course. I came back to join a few threads after my BMX and now I use it more than ever, primarily for support. I'm continually amazed at the knowledge base on this site - lots of experience to draw on, which is awesome!

Astrid, yes my lump did not show on Ultrasound, in fact the doctor doing the ultrasound told me if I was his wife he would be perfectly happy to let me go home without further testing. Thankfully an experienced Breast Cancer nurse disagreed and insisted on a biopsy which found Lobular Cancer. The MRI I had showed it to be 3.5mm. I firmly believe these experts need to be trained in the difficulties detecting Lobular Cancer (in New Zealand anyway)!

Thankyou so much for your post Fizz.

Wow.. good thing you biopsied it! Yes. My breast surgeon seems very aware that it's not easy to detect, but I'm not sure they put a lot of hours into lobular detection for the technicians.

It's hard when you aren't sure..and when the U'sound guy who is also a radiologist..says' I don't think we need to take it further right now..there is a small nodule under your arm but we can look at it again further down the track..' he was clearly frustrated he couldn't find a cause to show me for the lump I feel. No cyst, no muscle, no nothing!

I hate to waste folks time if I'm jumping at shadows.

I'm sure you all know what I mean!! I'm thinking i might take it further though after your experience Fizz.

thinking of you both Trvler and NYC gal.

.

Astrid.