Just diagnosed with ILC

Hi Mojo,

I think everyone is different in how they deal. I went into full blown panic and despair. Others take the "I am pissed off and am going to kick the s--- out of this" and are very positive. Ultimately, it just hits you the way it hits you and there is no wrong way. Your mind will process it and you'll react how you react. The one thing I do believe is that we can't hide away from our feelings forever; if they want to be heard, they'll be heard eventually. Do you have more details about your ILC now?

Hi Mojo,

Sorry you are here, but welcome. My ILC I did not feel nor was it seen on mammo. It was found by accident, long story. In the end on sono it was a small lump which one radilogist thought was just my breast tissue. In the end, a biopsy was done by another, came back initially they told me as IDC then after surgery ILC. If the second radiologist had not noticed my sono films showed something on my right, my surgeon said it probably would have been another 6mths to year before it may have been felt or seen by mammo. I did not have an MRI prior so I had no idea if any nodes were involved until after surgery when path reports came back. Many times they don't know the extent of ILC since it is a sneaky cancer that lays low, until after surgery. I don't know, but i would think there is always a chance the node could be inflamed but not from cancer. I remember a good 10years ago having a mammo/sono that should a prominent lymph node but it turned out to be nothing.

Maybe the dr. is waiting for the hormone receptor status of your cancer and grade, that can affect whether they do treatment before surgery, also the size of the tumor. You may have posted somewhere else this info and I don't remember, but do you know the approx size of the tumor?

Everyone reacts differently. I cried for a few mins. then stopped. Then an hour later cried a bit more and stopped. I had a feeling it would come back positive for bc so I was not "prepared" for it, but I just had that gut feeling it was so maybe that is why I reacted the way I did. I spent most of the time just numb and going through the motions. No one would have known I was going through a diagnosis unless I said so. I still feel that maybe I am not reacting the way I should be. Feel like at some point it is really going to hit me. Even after surgery I was back to making stupid jokes as soon as I woke up.

Don't feel there is a right way or wrong way. You could be in shock, or this could be just the way you process things, in your own time. You being an EMT you have, I'm sure, seen your fair share of horror and I'm guessing have been able to somehow deal with what you come up against in the job. Maybe it is similar for yourself, for now. Just like you said. Writing it out on here shows that you are involved in it and realize that this is happening.

Waiting is difficult, you just want to move forward and get it out. Are your appointments upcoming next week to get all the info?

Are your appointments upcoming this week to get all the rest of the info?

Blech, sorry for your troubles getting diagnosed. Unfortunately it is not uncommon with ILC. I felt like you about removing the offending body parts, for the same reason. The first surgeon refused, insisting that my left breast was healthy, bla-bla-bla. I found another surgeon.

Yes, they can reconstruct. In the end, I chose not to reconstruct however. My surgeon advised me to delay reconstruction so that it would not interfere with treatment. It gave me time to research and weigh my options.

It is very likely that they will want to do chemo before surgery, or at least assess this option. Either way, having you meet the MO and RO before surgery and making a full treatment plan is the right thing to do.

We are so sorry about your diagnosis, Mojojennijo. We all know it is a terrible blow.

Yes, it is not just human inadvertence, but the limitations of medical imaging too in detecting ILC that can let the condition advance before diagnosis, despite our efforts for early detection.

Something else about ILC__

----------------

"Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC." Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

-----------------

For one who wants Breast Conserving Surgery (BCS), size/s and location/s can matter a great deal. For one who wants mastectomy as their surgical treatment, location (or positioning) of the tumor can matter a great deal in whether one should proceed to Surgery in the first place. In some cases it is necessary to shrink the tumor first by other treatment means, for better prospects of "clean" (or undiseased) surgical margins. As an example, Chemotherapy would likely be recommended as initial treatment for a breast cancer tumor known to be at or very near the chest wall. Depending on other disease state factors, Chemotherapy may be recommended to precede one's Surgery.

You're still at the unknown phase. A biopsy tells you there is cancer but a lumpectomy/further scans will elucidate treatment plans.

There is no rhyme or reason to how people react to a cancer diagnosis. Some think "why not me" and others think "why me..." and then we forge ahead to do what we can to save our lives. I hope you are surrounded with good medical staff that are caring, smart and comforting. Lots of threads on ILC and you will read how differently each of us has dealt with it, how differently we were all diagnosed, how differently we get on with our lives. Just as different as cancer is, so are humans....

Best to you on your journey!

Mojo,

I have to honestly say I was in a daze when I had the initial PS meeting. It was 3days after I got the bc diagnosis. I do remember him saying I was not a candidate for DIEP etc, because of lack of fat and then him not wanting to leave me with scars on my thighs or butt if he took some fat from there. He said my skin was tight so he felt TE's would be very painful and not give a good cosmetic result. Basically going bigger would not have been a good option. He thought he could do a direct implant but was not sure up to what size he could go until surgery. He made a pocket, used Alloderm and in recovery he told me he used a small implant, which is comparable to my natural boob size before surgery except implant has more volume. I was good whether i would have remained flat or with implant. Also had nipple sparing.

So possibly it may have to do with the size of the implants? Also some may not do direct if they know you will need radiation. I know I have read on here of other women who had direct implants put in at the time of surgery too.

My understanding, please anyone, correct me if I'm wrong, nodal involvement can then involve radiation, removal of more nodes possibly, and possibly put chemo back on the table (if it's not already) depending upon how many are involved. Again, he/she hasn't given you the info on whether its hormone receptive or not and the Her2, also can make a difference in chemo before or after, along with size, grade etc.

I've read on here many people see MO and RO beforehand. I did not meet with anyone prior to surgery except for the plastic surgeon. I just met with Oncologist yesterday. Not sure exactly why mine went this way, guessing because the size was small and I was ER/PR+ and Her- she went straight to surgery and it was dependent upon my Sentinel node during surgery and upon final pathology then sent me to the Oncologist.

Mojo, I felt like you regarding the choice for surgery. My girl had turned on me and I wanted them both off (turns out ILC has a higher tendency to be multi-focal -- scary--) and when I did have my BMX the post-surgery pathology revealed mild dysplacia--like a time bomb waiting to go off-in my "good" breast. I was glad I had surgery, and I believe that insurance is required to pay for reconstruction; some federal law I think. I had a great plastic surgeon and breast surgeon and although I have no sensation because of the surgery I am very pleased that they still look like my boobs. I had enough work just getting used to the new normal; I didn't need to look in the mirror and see such a drastic change. Other ladies can and do great with their choices. Like you I didn't trust any more scans because the scans I had didn't reveal the problem for five years. And I had dense breasts, which further hides any problems. So there you go.

To surgery or not to surgery--it's a personal choice, but no surgeon can tell you what to do; they only offer choices, and ultimately it is up to you to decide what you can handle and what will help you feel more positive and protected going forward. We are all different.

The surgery discussion board helped me a lot, so I'd check there for more information. And ask questions.

Hugs,

Claire

My tumor was also close to the chest wall -- which left some uncertainty that would follow until surgery. With BMX, if it's involved in the muscle, that means radiation, if I remember correctly.

So, I chose BMX but understood I could have radiation, too, due to the chest wall issue. Although they felt like they could get it -- and did get clear borders, so no rads.

It's great sharing info because you're getting a lot of input from different doctors all over the world. International folks here, too. I think that's really amazing and so helpful.

Mojo, what joy! Unfortunately not uncommon with ILC. I too had neo-adjuvant chemo, because of a large tumor. It is not fun, but I lived to tell the tale. Make taking care of #1 priority #1.

Like your attitude Mojo! You have a plan of action now and the "jerk" has to go.

Just chiming in, I wish I had known earlier that ILC has more of a tendency to be multifocal. As it was I decided that since it hid from several "clear" annual mammos, and that I had dense breasts giving ILC even a better chance to hide and hang out, I had a BMX after rads, chemo, etc. Post BMX the pathology report disclosed some problem areas in my "good" boob, so was I ever glad I had a BMX although I still miss the sensation and I still don't like the tight feeling at times.