IDC and ILC In Left Breast... Anyone else with the same DX...

I had a friend who had it, but I don't think she comes on this site.   She had a mix of IDC, ILC, DCIS and LCIS spread across both breasts (as she put it they were full of "bad stuff") and elected to have (but I'm not not sure if she was given a choice) a BMX.   Her margins were clear and there was no node involvement, so she is now on Tamoxifen (pre-menopausal) but did not need radiation of chemo.

My understanding was that the areas weren't all that big, and with clean margins and no node involvement it was thought that the surgery got all of the cancer(s) and that any possible benefits of radiation or chemo (in the unlikely event of a stray cell escaping) were outweighed by the possible side effects.    It's not unusual not to need radiation and/or chemo for early stage cancers treated by mastectomy.    She's coming up on 3 years out and doing well so far.

I was diagnosed with stage 1 BC, ILC (2 cm) and DCIS (4 cm) with a another area of precancerous cells on the right breast early March 2014 after a lumpectomy 2/28. It was a lot of activity in such a small area of tissue removed. Even though the margins were clear, I decided on a bilateral mastectomy, performed March 24, 2014. None of the cancer was seen via mammogram or mri. Mammogram had seem microcalcifications and hyperplasia, which led to 2 biopsies, neither of which found any cancer. My lymph nodes biopsied were clear. I also have Multiple Sclerosis. Mainly I am avoided whatever I have to (chemo, radiation, etc) in order to maintain a good auto immune system and lower my risk factors. Almost two weeks after surgery, I am feeling very sad, but clear it was the right choice for me. My incisions are across the midbreast point and continue in a slight curve upward below the armpit area, since I had extra skin there. I have extra heavy numbness in each armpit and some numbness and tightness across the entire chest. I am not going to have reconstruction or implants, as I feel it could affect my immune system and my overall health. I did take Prempro for over a year and another year of hormone replacement therapy. My surgeon explained that HRT  and Prempro in particular increase the risk of breast cancer anytime in my life, even if I stop HRT therapy. As a matter of fact, there are so many women who have taken Prempro who did end up with breast cancer and some who died...also, for over ten years, women have been filing lawsuits against Pfizer for the affects of this and other similar HRT drugs that have proven to cause breast cancer. Based on the fact that I took the HRT for over the last 2 years, that none of my cancer was seen via mammogram or mri, and my other risk factors, I decided not to play roulette with my health and have the bilateral mastectomy. Once I get the last two drain tubes removed next week, I will see the medical oncologist. He had previously recommended I take estrogen lowering medication. However, studies show that high levels of estrogen help prevent and ease the symptoms of MS. So, I'm not convinced that lowering my estrogen now would be the highest benefit for my health overall. Also, the labs on my breasts after mastectomy did not find any cancer, but did report microcalcifications. So, there is no evidence of cancer at this time, except what was removed in the lumpectomy in February. My surgeon explained that the lab only does a certain number of slices of the breasts that were removed, that it is not all inclusive, and the areas between slices are unseen. I'll never have to have another mammogram again. I'll never worry about what they aren't able to see. My body is physically depressed from after surgery and recovery phase on top of pain meds. I know I'll feel clearer once I can clear all the meds out of my body and get back to fully functioning. I took my first shower today and had to hang my head low and to the side to be able to wash my hair, but I am able to raise my arms up a little more without difficulty and pain. Warm wishes for all who are enduring these decisions and experiences.

Sorry; I don't come here that often anymore and just saw your post today.  In 2008 I had a bilateral mx for IDC/ILC/DCIS/LCIS just under 2cm in left breast and one large lymph node.  It was all in one spot inside an existing fibroadenoma.  Triple positive, Stage 2 Grade2, and I had dd AC/TH, then another year of Herceptin, then a year of Neratinib trial, and almost 5 years of Femara.  I had the Oncotype test (after all of that) and came up with a 9.

I will say that the docs who saw the path report were impressed and suggested that it was an uglier than normal tumor.  It didn't seem that pushy to me, and the Her2 element, though positive, was barely over the line.  I had the bilateral surgery because of the ILC. 

I did not have reconstruction for a lot of reasons; I have no regrets about that.

I was 56 at diagnosis and I'm 62 now.  

I hope this helps--I assumed the mixed bag was not that uncommon, as Susan Love's book was my reference source, and she mentioned that it wasn't really better or worse.  

Good luck and peace on your journey.

Cathy

KJR1964,

I had 1cm IDC and 1cm ILC 4 cm apart was talked into Mastectomy on left side. If I knew then reconstruction vis DIEP would look this good I would not have been so down. I'm on year #3, so far so good.

My oncodx was 34, but chose no to chemo.

Glad to find this site...  I was diagnosed in July 2014 with bilateral breast cancer, 2 different kinds of breast cancer with 4 different sub-types.  I have invasive ductal carcnioma, invasive tubular carcinoma, DCIS, and invasive lobular carcinoma.  In early May I had my yearly breast exam and breast mammograms, which show such density that they called to do an ultrasound on the right breast.  On ultrasound they found two vague areas of distortion that the radiology doctor felt where suspicious for breast cancer.  I later had 3 areas biopsied with about 15 samples taken which came back as positive for DCIS and invasive lobular carcinoma.  Because of more than one kind of cancer and a very strong family history of breast cancer and other cancers, and several nodules in my right lung, I requested a MRI to help in my final decision for breast treatment.  The lung nodules appeared benign, but the MRI showed a small pea-size cancer in the left breast.  This confirmed my decision to have a bilateral mastectomy with reconstruction.  My surgery was July 3, 2014, was a nipple sparing double mastectomy with insertion of tissue expanders.  On pathology it turned out that the left breast, that no one had been looking at, was the more serious and largest of my cancer tumors.  My diagnoses were left breast invasive ductal carcinoma 1.2 X 0.8 X 0.6 cm, Nottingham grade 1 (1 of 3) and DCIS, and multiple microscopic foci; right breast revealed multiple nodules from 0.5 X 0.1 cm, multiple 0.5 X 0.1 X <0.1 cm, and wereDCIS,  invasive tubular and invasive lobular carcinoma.  Based on the largest tumor, they called me a Stage 1, and I was started on anastrazole daily probably for at least 5 years.  In my search for information regarding multiple kinds of breast cancer with multiple sub-types I have found very little long-term information.  One study suggested that they need to access the "tumor load" based on adding them together, which would give a patient a higher stage #.  I'm concerned that my risk of recurrence, even with negative margins and 7 negative lymph nodes is higher based on the many tumors and types.  I am still in the healing stages now 7 1/2 weeks after surgery and a tentative surgical date for replacement of the expanders with permanent implants is scheduled for Dec 30.  Anyone have any more information based on these results?

What a story you have Linda. At least you are getting good early treatment. 

I felt some lumps in my left breast ten years ago and a mammogram and ultrasound declared them negative for tumors. Earlier this year a lump appeared again under the nipple so I saw my doc and the action started pretty quickly once an ultrasound and biopsy picked up the DIC. After the biopsy the breast inflammation went crazy, so I was pleased when the chemo pretty soon got it well under control. 

The men in your family should get into the habit of checking themselves. Not too hard for a guy really compared to your experience of failing to detect the cancer in your left breast. 

Is any radiation recommended for you?

I am interested in hearing more of your experience..  I have ILC, ITC, and IDC, in both breasts.  I had bilateral mastectomy on July 3, 2014.  I'm concerned that I may need more aggressive therapy even though I have clear margins and negative lymph nodes.  The chances of 3 kinds of breast cancer and 4 different sub-types seems to be unheard of, and makes me feel that my stage is much higher than the Stage 1 I was given...

I am on anastrazole for at least the next 5 years,  There is nothing to radiate, but they did discuss standard chemotherapy.  In my research on line, it says that having more than one kind of cancer, and especially if it is in both breasts increases your chance of it recurring to 35-40%, rather than the 11-12% they are saying it is using just my largest tumor.  I was told by the breast specialist that "no one" gets 2 kinds of breast cancer..  I did, in fact I got 3 kinds and 4 different sub-types. I have corresponded with the American Cancer Association and they do not have any information to share at all.  I have a great plastic surgeon who is in charge of my case right now, and my oncologist is a seasoned veteran, so I just want to make sure that chemotherapy isn't a smarter choice than the aromatase inhibitor therapy I am taking.  I can't use Tamoxifen, which my Mom and her sister both took for 5 years each, because of other medications I take.  

I just got diagnosed with the same on aug 14. Don't know any treatment plan as of yet. Had a lumpectomy on the14th after telling my dr that is want I wanted. Lump was over 5cm. Found it when it was smaller than a M&M. 4 mammos 2 US later they still couldn't see anything. Have just finished CXR bone scan CT MRI & MUGA. Had BRCA1 & 2 testing done. Also looking at being TN. Dont know anything else to tell ya. Haven't made any other decisions just know I have to have chemo. Got my faith in God & I'm going to let Him guide me through this. 

KJR, I have the same, mixed and how ironic, same breast. I am sorry I haven't been on much or I would have seen your post, I am sorry. I  have just been running as if I were on "fire." As my mom had BC I immediately chose BMX, just didn't want to go through this a couple years down the road. If I had chosen the lumpectomy they would have missed the IDC. I have ILC in lower quadrant outside and IDC in upper quadrant inside. BS says he would have found it, but it would have been a day/two and would have put me back as to tests, etc., and w/out those complications I still have not started my chemo cocktails. I have a power port now, have had blood sent off for BRCA, have had a bone density scan [not good] a CT scan [ok] and was to start chemo last Wednesday, but thanks to the bone scan they put it off until after an MRI on Monday. The bone scan showed a small spot on my knee so here we go. My MO says she has never seen it jump that far in her career, but, anyway will be able to start chemo after this hopefully. I would never have thought it possible that I would have a ton of depression missing chemo, LOL, but I do. Seems unexpected things keep popping up. I dread chemo, BUT lets get this show on the road already. Much luck KJR, will be saying prayers for you and my other "family."