ILC - The Odd One Out?

Hi Aquarian -- fellow astrology buff, I presume -- from one air sign to another. ;-)

Our stories are very similar. I was also 48 at DX, and I noticed on another thread that you said MRI showed the tumor best. Did you discover a lump on your own?  I felt a suspicious lump, but even the 3D mammogram showed nothing but an area of architectural distortion (which probably would have been overlooked on a screening mammogram). Ultrasound was also vague, but the lesion appeared clearly on MRI, and it measured the same size as what the lumpectomy removed. 

Like you, I was an older first-time mother. Had my one any only child at age 35.5. Also breastfeeding for three years. I figured that would be a great insurance policy against breast cancer. Also had no family history ... It was surprising. However, I believe an article here at BCO said that for those of us who still got breast cancer, breastfeeding might have prevented more aggressive (eg, triple negative) types from developing.  At least ILC, despite its creepy nature, is apparently a slow-growing tumor type. My MO told me that my small tumor had probably been growing for five to seven years. 

Fingers crossed for you that you get a nice low OncoType score. Mine was 16, so no chemo for me. Rads wasn't too bad. My RO said that ILC responds very well to rads, so that gave me some peace of mind. 

I'm so glad to hear that you're starting PT right away.  That's an excellent strategy, and like others have said, make sure your therapist addresses lymphadema as well.

My MO explained to me that it's kind of a myth that tamoxifen brings on sudden menopause.  She said that the majority of women taking it are on the brink of menopause anyway, and so the events happen to coincide. It's no lie that tamoxifen can bring on side effects of menopause (hot flashes etc). In my case I was having hot flashes anyway, so I'm not sure how fewer I'd be having right now if I was not on tamoxifen.  I have been in perimenopause for a few years. When I started tamoxifen one year ago, I continued to have periods for six months. The only difference was they were spaced out longer (but that was also happening prior to starting the drug).  It has now been six months since I've had a period at all. I don't know if this is "it" or not ... If it is, I'll take it. I never experienced the "period every two weeks" that I've heard happening to women going through menopause (non-BC women, experiencing it "naturally"). 

Like you I was worried about tamoxifen. I decided to give it my best shot and try to work around any side effects. Once I emerged from the cocoon of daily rads treatments (I found it comforting to be under constant surveillance ... And though I was happy to finish rads, I felt a bit untethered when I returned to "normal" life), I have to say I was (and am) happy to take that little white pill every day. I do believe that hormone therapy is a powerful tool for those of us with hormone-positive BC. I am currently losing weight that I don't need to be carrying around, and I'm pleased that by following WW for portion control, the weight is coming off. Not as quickly as when I was a younger woman, but in one month I'm down about eight pounds. Slow and steady. Improving my eating and having this weight loss so far makes me feel a lot better. 

Keep posting ... There is a wealth of information among everyone here. I wish you all the best in your upcoming treatment and beyond!

hi Ladies..thought I would weigh in after reading posts and finding comfort in you all..ha! You didn't even know it! As you can see with stats below I'm almost 3 weeks out from surgery and feel blessed they found mine on a routine mammogram because as well know and many doctors/surgeons told me..it's a miracle. It literally was a tiny shadow that radiologist compared to the one year before..and it wasn't there. I thank God for many things..one being that this radiologist was the one that caught it..what if it was somebody else? What if she was having an off day.? I know that's her job but she saved my life..still trying to think of something to send her ( any ideas you all have would be great) along with a letter of my gratitude.

Now I am back to the waiting game, as I was telling my hubby this journey has been a lot of inhales and exhales..you get a biopsy..hold ur breath..until you find out u have cancer..exhale to hear that it is small..but inhale again when you go for MRI ..exhale again..etc etc with all the scans and tests..surgery and waiting for results..it's a wonder why I'm not walking around shaking lol..so one more test that I pray is low..the oncotype test..hugs and good vibes for you all 

It was the same for me....I was "lucky" in how I found my cancer. I had clean mammograms every year. The last one I had was several months overdue and I was also late in getting a physical. I had heard all the hype in the media about women needing mammograms only once every 2 years, so I was going to wait until then. One night I had a dream about my best friend who died of breast cancer over 20 years ago. The next morning I woke up and touched my breast. I felt "it" immediately. I wish I had found it sooner, but at the rate I was going, I think I was just on the borderline of being Stage 3. 

Good luck on the Onco!

hi...I recently joined the group...stage 2 ILC, 3/11 positive nodes with 1 being axilla... Lumpectomy right breast with LCIS in rt. breast.....currently finished my 4th chemo with 2 left...then radiation...and either tamoxifen or other.  I am ready for this to be done and go back to teaching come august!

 I am currently gathering more information to help me feel more confident in my decision to keep my lumpectomy.  I need to revisit my surgeon and ask more specific questions so I am learning a lot from this forum!  A big part of my decision is the gut feeling for keeping my lumpectomy...there is LCIS in my right breast .....is that seen on MRIs....which seems very strange to me that I have never had one...I did have a pet scan done before I started chemo as onc. Was concerned about high liver functions...my general surgeon feels bmx could be in order because of LCIS but wanted me to gather as much info. Before I made the decision...now I am towards end of treatment and although onc. And second opinion feels lumpectomy is fine if I chose that...I still will seek one more surgeons opinion and go back with my info. And questions to my general surgeon...in my gut, I feel relieved when I think I will keep my lumpectomy...I just need a little more info...and more questions answered....thanks for listening and if anyone has a great question I should ask, please share it!  Rosie

Thanks Bec65!   I teach kindergarten and was diagnosed Dec. 17 th a day after my 54 th birthday...then the whirlwind began and I took a leave of absence Jan. 27 th....it was the best group of kids, ever so it was super hard...I think those months were the hardest part of this journey and I look at the chemo as " the liquid gold" that will help to keep the cancer away and remain positive during my treatment...but, man, it's a long haul, isn't it?!

It is a personal decision and I know, for me, the peace will come after all my info. Is understood and I can get on with life!  So far, lumpectomy gives me peace....

It really bothers me whenever I read articles about LCIS and it states " there is no evidence that it will become cancer , in contrast to DCIS"....so this thread has a lot of good information and support for us!

Thanks for all your support! Rosie

Hi Coolhart

I am exactly right there with you.  Notice my diagnosis and surgery dates - were are almost the same!  I too had a WONDERFUL angel radiologist.  I just wrote him a note of gratitude this week.  I think that is one of the most important things you can do.  I don't know how often our physicians really get that.  I am waiting for oncotype as well, but feel very optimistic that I will receive a low score.  Hugs and good vibes back at ya!

Rosie, 

It is my understanding that they do not run the onco test when they find positive nodes. That test tells them the likely hood of recurrence, should they give chemo. 

With positive nodes, we are getting chemo, no need to run the test, some Dr. do not like it, and some insurances refuse to pay. 

I cannot answer the other ? But I do not think it means its in the other breast...my Dr. Will not order MRI, for dx or check ups...

Rosiesride, my left breast had LCIS and ILC, but my right one had nothing.  My right side looked good in the MRI before surgery, and the surgical pathology confirmed it was clean.  That same MRI, though, did not provide an accurate dx of my left breast.  I went into surgery with a dx of 4 IDCs under 1 cm each and came out with a dx of one big ILC.  

Hi, I was so glad to find this forum as I was just diagnosed with a grade 2  ILC this week. I also saw what looked like an additional diagnosis of LCIS on the pathology report but its a lot to take in all at once. I don't know the stage yet as I am having a lumpectomy and some poking around in the lymph nodes next week to find out more. At the moment there is only mention of radiation after the surgery and tamoxifen, nothing about an MRI or chemo. I need to make a list of questions to ask the doctors.

I am 59, 5ft 4 ins, 135 lb with a a history of a couple of cysts in the same breast. I had a perfectly fine mammo last year and was due for another routine one last month. I got a rash on my upper chest that seemed like dermatitis and a doctor gave me some steroid cream that appeared to work but I noticed that I had some sweating and swelling around my armpit and also at the side of my breast that I thought was a result of the infection. I had had something similar 20 years ago that just went away. This time it seemed OK by the time I went for my annual physical at the end of March. As it had been so recent I mentioned it to my doctor who took immediate action.. She had me go for a diagnostic mammo on the area that  I was concerned about  rather than go for the routine one which would have been 2 weeks later. She also scheduled an ultrasound on that area "just to make sure". The tumor showed up on the ultrasound. Even I could see something myself although I really could not feel anything obvious. They then did a core needle biopsy.. Apparently it was  just a faint shadow on the mammo  so I will never know for sure if it would have been found had I not mentioned the rash and swelling. They seemed to think it is small, a bit more than a centimeter, but I will have a better idea after the surgery, so fingers crossed.. 

This ILC really seems to sneak up on people, without the lumps and bumps that one thinks of. Until the last couple of weeks I had not even heard of it, just breast cancer. 

Hi Ladies...I have just reviewed my pathology report and went into surgery with diagnosis of ILC now..final path report says invasive Tubulolobular .( still grade 1..stage 1) ..Anyone heard of this? 

In the comment part of the report says it's called that because it's basically a lobular carcinoma which focally is forming tubules.

I was just curious if anyone knows anything or if anyone else had this?

lizzysmom, your story sounds just like mine.  I found my lumpa month before my mammo which was normal last year.  It has been a long road, but we are here for you.

goddessjen...hey there....looks like your diagnosis was right with mine...do secbee 17 2013...my lumpectomy was jan. 3rd but I did have chemo starting feb. 10...3/11 positive nodes...then rads mid June and tamoxifen....I am planning on keeping my lumpectomy though...I am 54...not officially in menopause as my last period was on the very day of my first chemo...uggg!  Just wondering if you planned on bmx....seems like there are not many women who had positive nodes that choose to keep lumpectomy...just struggling now with the decision before rads begin...thanks. Rosie

hi genny...I am kind of in your boat right now...seeking 3rd opinion regarding my path and sticking with my lumpectomy.... I really like what woodylb says and that everyone is different...best of luck with all of the decision making as it weighs heavy on us...I want to get back to my life...I am a small " a" and I think if I ever did need bmx or just right boob removed I would not choose reconstruction and maybe go with a beautiful tattoo!! I am 54....Rosie 

Rosie, my breast surgeon & my PCP were both very pro lumpectomy. If they had said I needed a mastectomy, I would of done that. I really like & trust them both. 

My worry, of course is the 6+ nodes, what got out of the gate.  Hopefully chemo did its job.

No guarantees on any of this cancer treatment. 

hi Rosie

I  am pretty sure they reckon 2mm is an OK margin which ties in with your clear but close Dx  (10mm is very clear). With ILC I would be VERY cautious just because it is soooo sneaky. 

It does sound like you have treated it pretty aggressively though and I would be surprised if they put you thru all that just to go back and do an Mx later.  

I think prehaps an MRI would be wise to put your mind at rest.