ILC - The Odd One Out?

Hi Genny, I know what your thread you are speaking of, I also read & post occasionally. The gal that I am thinking of, had a lumpectomy, and has decided to have a mastectomy. she has said that she is tired of worrying about it. 

My lumpectomy was an easy decision, mainly because I was so clueless. I assumed I had just the one node that had been biopsied with cancer. Well, it was so much worse. Like you, extranodal extension, & all matted together. My surgeon was confident that this was the best option. I got my biopsy report & had surgery a week later. 

I am glad that you have time to consider your decision. It's a tough one. 

Genny, my lumpectomy was about a golf ball size of tissue at the bottom of my breast, it actually lifted the breast a little. The matted nodes came out during the axillary node dissection, in the arm pit. 

My Mo follows the new guidelines, no testing after treatment. We have talked about this on another thread called OCCS, that's not it but something close. 

I will have a ultra sound next Tues. on the axillary. The Pet Scan showed a inflamed node left behind. I had a major meltdown about it in front of the radiologist during radiation. Very embarrassing. He felt that it was fine, if It had cancer the chemo & rads would take care of it. But then he order this ultra sound, which is 2 months post rads. 

The conversation on that thread is about these guidelines that state no testing. Most of us feel, you cannot make the same rule for someone stage 0 or 1 that you do for stage 3. My MO is not going to change, it is also hospital policy to go straight by the rules. I did ask, & will get Biophosphonate treatment in the next 2 months. I might have to pay for it, but that's ok..

Genny......Go for a 2nd opinion....I think that will give you some peace of mind.    I had a bilat.....lump was never an option for me as my breast was full of cancer....first set of biopsy was 2 places too far apart to do lump...then MRI and more biopsy including nodes.....so my only option was single or bilat mastectomy.  I interviewed 2 surgeons and they both suggested/recommended that I do the bilat.  My onc also thought the bilat was prudent...turns out it was the best decsion as the prophy side came back precancerous after post surgery pathology.  

Since you are doing chemo before surgery, will they be doing any more U/S before surgery to see if anything is there, and to know the exact spot and how big the tumor is.....I've read where gals have said that the chemo shrunk the tumor and hardly there at of surgery.

My onc does not do any scans post Tx unless the patient is symptommatic....and I just read yesterday that no scans is the new protocol.  I'm 8 years since Dx and my onc has never done scans post Tx and for me that is good....I don't need anything else to worry about!!!!  I just had my 6 month visit on Thursday....Onc does tumor markers, CBC and CMP labs, detailed history since last visit and exam.

Hope you have an easy time with your next chemo.....Again, go for the 2nd opinion and get all your questions answered.   Hugs....

Karen , I love that you stick around these boards even though you are 7 years out. It gibes hope.  I am just curious, do you do anything to stay cancer free?  In addition to my 2 nodes, my path report did say small Extra nodal extension.  There was no measurement, so I don't know what small means.  I was told exercise, losing weight and almost no alcohol helps cut chances of recurrence.  Just wondering if you do any of those things.

Thanks Karen...and thank you for sharing your story.

I don't blame you for not taking AI's. When I was on Arimidex there was no way I could continue with it because I had so much joint pain - couldn't walk, bend, get out a chair, go up stairs, etc... I was so glad when the pain stopped after I quit taking it and switched to Aromasin. I'm so grateful there are no SE's and hope it stays that way. Last Tuesday I had a Zometa infusion and it brought on some pretty bad joint pain that reminded me of how bad it can be, but it was only temporary, thank goodness. 

Sounds like you are doing all the right things to stay healthy. 

Happy Spring!

Genny, the best advice I can give you is this:

You've obviously read all our stories and seen into our heads about our decisions about BMX, MX, or lumpectomy, and why we reached those decisions, and how we feel about them now. You've also gotten advice from doctors--and get as many doctors' opinions as you feel you need before you move forward, either way.

If it were me, the next thing I would do is lie down someplace quiet and just contemplate. Take your time. Close your eyes. Imagine that you've already chosen each individual decision, that you've gone through it and have recovered. Imagine first one and then the next.  See which end result feels best to you *emotionally*. Will a lumpectomy leave you anxious and worried that you haven't done enough, or will you feel like your doctors have the situation well in hand? Or does the idea of having a BMX possibly unnecessarily worry you more? Go with your GUT.

The reason I say this is because really, after reading and reading and reading these boards--and I was reading them for a friend for a couple of years before I was even diagnosed with BC myself--I've come to a few conclusions. One is that even though there ARE things that increase or reduce our chances for recurrences, to some extent it really is a crap shoot. We are not totally in control of it no matter what we do, or do not do. So the best we can do is to do what will make us FEEL and BELIEVE we have fought our best fight and let God/fate/luck of the draw take care of the rest.

Another is that it is EXTREMELY important that you feel emotionally as good as possible about your decision because this entire experience is extraordinarily difficult on the emotions. Anything that you can do to keep yourself as optimistic and cheerful as possible is a MUST. No matter which way you go, it's going to be tough; there's just no getting around that.

For me personally, the original prediction from the docs--based on the MRI-- was that I'd have no node involvement, or LITTLE node involvement from the affected left breast. My surgeon thought my right breast also looked a bit suspicious on the MRI and so I had a second MRI--an MRI guided biopsy that time, which was negative. He advised that we COULD do chemo first to try and shrink my tumor and then do a lumpectomy, but he ALSO advised that he personally would not advise AGAINST a BMX. I immediately chose the BMX -- no question about it for me, simply because I did not want to have to deal with future worries about the right breast, future biopsies (I hate biopsies!!) future MRI's, etc. It just wasn't worth all that stress to ME PERSONALLY just to keep my breasts, and since my husband was in 100% agreement with me, it was a very easy decision, made instantly in the surgeon's office when he told us that my left breast was, indeed, cancerous. 

The end result after the BMX was that I had more than a "little" node involvement.  He wound up taking all the nodes on the left side and 11 of 22 of were involved, and I also had extranodal extension in one--in fact, it was nearly completely replaced by the cancer. LCIS was also found in the breast in the final pathology. 

Additionally, my surgeon and both consulted oncologists advised that they believed I had made the right decision regarding the prophylactic removal of my right breast. The first oncologist's comment was that the right breast was "pretty much a mess," and the second oncologist (the one who is treating me,) said flat out that I'd have been right back in the same position in a year or two--it was almost certainly headed toward cancer.

So for me, never mind all those mammograms, ultrasounds, and the MRI's; the proof was in the final pathology after the BMX. I am extremely glad that I made the decision I did. It may not prevent recurrence -- they can't get ALL the breast tissue even with a BMX, and it obviously may not prevent mets-- as a stage IIIC I'm fully aware that I could be truly Stage IV and just not have any mets large enough to show up on scans yet--- BUT, it will prevent me from laying awake at night wondering if I did everything I possibly could, and it will prevent me from having to deal with more breast mammos, ultrasounds, and mri's on a fairly regular basis. That's enough for me.

Or to put this into different, and much fewer, words: A BMX didn't scare me half as much as NOT having a BMX would have. 

If you feel the opposite, go with the lumpectomy, and be at peace with your decision. Seriously. My gut KNEW, somehow what I should do. Listen to YOUR gut. It will tell you what to do, and whether you believe that that message comes from your own inner self, or from God, or from statistics and research, or your doctors' opinions, or whatever, I 100% believe that this is true.

Even in situations that seem identical, we are each individuals, and what is the right decision for one of us may be the totally wrong decision for another. If my husband had felt differently about the BMX, if I had really loved my breasts in the first place (I never really liked 'em much,) if my body image and self esteem had depended much on them, if my dread and fear of all the tests and such had been much less, etc., I might have made the opposite decision, and I might be feeling right now like THAT was the right decision for me, and you know what? That would be correct, for THAT version of "me."

Lisa, we have very similar stories. My "good" breast also turned out to be a mess, and when I asked my surgeon, "I would have been back in a year or so, right?" he just nodded gravely. But what really decided me was when I asked what my follow-up on the good breast would be. "Piece of cake, mammos every 3 months with MRI as needed, and we will just biopsy anything that looks suspicious. DON'T WORRY." I detest scans, mammos and needles. I also just knew that I would always be eyeing that stupid boob, worrying and wondering when it was going to turn on me. But that is how I roll, and I completely get that others, as you say, may come to a very different conclusion.

Thanks for the very good advice Lisa, and all the others that have helped me figure all this out. I go to the PA tomorrow and I have a list of questions. The thing is I discovered my BC because of dimpling in my left breast. I had a tiny little dimple on the right one as well and I think it's getting more pronounced. I showed it to my BF since I have been flashing her my boobs since this started and she agreed with me. She thinks it's gotten more noticeable also. I haven't said anything to my hubby yet. I am going to ask for a diagnostic mammo and U/S for the right side. I'm not convinced that the MRI is telling the whole story. Hopefully they'll agree to it, if not I'll go for that second opinion. I'll let you all know tomorrow, and thanks again everyone….

Hi all, went to the CNP today, showed her the dimpled areas on my right breast and she has ordered a diagnostic mam/ultrasound for early next week. If that shows nothing I'm going to leave well enough alone and proceed with the tx plan as scheduled. I think I am comfortable with this now. If it is negative then I have to believe that if it is so minute that a MRI, CT and ultrasound have not detected anything the chemo should take care of it. Thanks again everyone for helping me come to a decision I can live with.

Prayers to you! I have mixed ILC with IDC. My treatment is chemo, rads, hormone and targeted therapy. Rads even with MX due to 9 extranodal nodes. The treatment protocols don't really appear to be much different for ILC vs. IDC, but more geared toward each person and what the cancer is made up of. Some of the treatments also depend on what protocol each MO follows. Sorry you are facing further surgery. 

Hi KJR - I also had ILC & IDC (in separate quadrants) and an apparently "clean" sentinel node at time of surgery. However, complete pathology revealed micromets. Back to the OR for axillary dissection a couple weeks later: nothing else found! Chemo was OK and now I'm three years out. You will get there/here too!

welcome woodyhollow.   Please stay with us to update us on your  life post treatment!  It is good to hear happy stories.  I finish my last radiation on Monday.  I am kind of scared to no longer be tethered to my doctors. I am going to celebrate by buying a dress for my daughters graduation.

KJR, sorry to hear what you have been through.  You will be in my prayers.  I vividly remember how I felt when I learned it was in my nodes.  Bec is right, the treatment is doable and you will get through it.  It. Is not pleasant and you will have bad days, but we are here for you.  If you have any questions, just ask.  These ladies are a wealth of information.  I never would have made it without these ladies.

Genny, I'm so glad for you that the chemo seems to be effective...that's great news!  I had a bmx and my follow up is regular labs only, no scans of any kind unless I report a symptom that warrants one.  This seems to be the case for most of us who had a bmx.  

Hello, I was diagnosed with Invasive Lobular Carcinoma 17 days after my 48th Birthday.  Definitely not the BD present I was expecting! After 6 biopsies and 4 MRIs, I had breast conservation surgery on April 10th (I needed THREE wires inserted into my breast that morning prior to surgery).  My surgeon was able to remove all sites with clear margins.  My biggest complaint is the Axillary Web syndrome that goes down my entire arm to my wrist!  UGH!  Starting PT for that on Monday.  First radiation appointment is May 12th.  I think I am more nervous about the Tamoxifen (which I will not start until after radiation) than the radiation.  Not looking forward to being thrown into early menopause.

I had NO history of breast cancer in my family, but I did not have my first and only child until I was 38. I breast fed for 3 years.  I am now waiting on the Oncotype test.  BRCA was neg, so I pray the oncotype test will be a low score as well.  I am open to any words of wisdom! 

Aquarian23, i am so sorry that this was your birthday gift. But compared to ILC diagnosis it is better than others. ILC is very hard to detect and is usually detected at stage three or four. You have no lymph nodes involvement this is also a good prognosis as well as the size of the tumor. You may not need chemo at all  since chemo is not 100% effective on ILC , they do it in my case when there a very high positive lymph nodes  numbers and some doctors opt for it as preventative measure. The tightness and the numbness in your arm will decrease with time but you have a 15% chance of it increasing during radiation. Personally i used the smallest weights and i used to stretch and exercise my arm while sitting all day but very slowly. Tamoxifen is not so bad and it does not cause always an early menopause and if it does believe me it is better than having the cancer back as ILC thrives on hormones. I had my son at age 37 also but it is not the only factor and i have no family history of cancer either. This disease is on the rise for reasons unknown till now the info you read are all hypotheses not facts. Some of them may increase the risk bit not the reason. I wish you well and i hope in one year time this will be only a memory. Just a tip if you do take tamoxifen be sure not to miss your pap smears or any sign of feminine nature. Tamoxifen is known to increase the risk of endometrial cancer. I have two of my in laws who used it till now they have no problem with it excepts for some  insignificant no cancerous small growth which were removed. Wishing you well.