ILC recurrence

I also opted for bilateral mastectomy and do not regret it.  I wasn't comfortable with having to have an MRI every 6 months to a year to detect whether or not it had spread to my healthy breast.  I did not want the additional radiation exposure but more importantly, I did not want the stress associated with the chance of recurrence.  I personally believe that stress is a large contributor to BC and this was one that I could rule out.

Heather 

Only had the "problem child" removed. Couldn't see having surgery on supposedly healthy tissue. Scheduled for an MRI again next week and mammogram every spring to hopefully catch anything that develops. Will also have ultrasound if needed.

I felt as though the abnormal cells got a foothold 25 years ago first when pregnant & then attempting to nurse a premie. Had 2 episodes of mastitis, both on the right at age 30. Infection, while not being directly linked to cancer, can leave inflammatory changes which may have set the stage. Also, never having a full term infant became a risk factor for me.

I'm happy to have an unaffected arm that can get blood draws, injections, etc. because I now have lymphedema on my dominant side. 

because of it being ILC, I was and still am comfortable with my decision of a bilateral.  BS seemed to breathe a sigh of relief when hearing of my decision. 

Oh did I need to read your posting...just diagnosed scared stiff.you are a shot in the arm...of good news!!  I am 68 yrs old had hyst. 15 years ago...1.9.cm er and pr positive.

Pathology report is driving me crazy says vascular and lymp involvement,,, dr did a wide excisional biopsy as core biopsy missed lesion....margens not clear.  Scheduled for bi lateral mastectomy 10/22  can't wait to be done..hugs barbara

Totally agree with you on each point....I think mamos should be replaced with MRIs....been dilegent for 25 yrs with mamos....this cancer still cannot be felt by exam....bi lateral mast. 10/22  please stay in touch! hugs to all Barbara

Hi Nanka,

I'm not sure what your status is at this point, or if you've already made your decision. For what it's worth here is my story:

I, like yourself, am very conservative in my decision making process. I took virtually no prescription drugs before my diagnosis with ILC on January 25, 2012. I also have a mistrust of the medical profession in general because of my history. I'm 67 years old and had polio as a child. I found doctors don't always tell the truth, or may think they are telling the truth, but don't always have all the facts. I made up my mind many years ago to always get two opinions or more on any major decisions medically speaking.

With that said, I had always gotten yearly mammograms since I was in my 20's, and never had a problem show up until around 2001 when they found a microcalcification on my yearly mammogram. After several more sessions of compression films, I had a needle biopsy. Following that, I had a diagnosis of DCIS and was told I could opt. for a lumpectomy and radiation or even a bilateral mastectomy. I immediately asked for a second opinion which came back a week later as LCIS, not DCIS. I was confused how I could get two different diagnoses within only one week, so I asked for a third diagnosis. They sent my tissue samples to a different lab this time, and the diagnosis came back as DCIS with possible invasion. I was in college at the time getting ready for final exams, so this was extremely stressful and confusing. I live in Oregon, but my family lived in California. My brother had knowledge of the doctor who had operated on actress Suzanne, Dr. Melvin Silverstein, and at that time Dr. Silverstein was working out of USC's Norris Cancer Center. I got my tissue samples from the local hospital and flew to USC to see Dr. Silverstein. After more testing, his conclusion was it was LCIS; however, he wanted me to consult with Dr. Michael Lagios who he said was the best pathologist for the low end of breast cancer on the west coast. Dr. Lagios is located in Tiburon, CA and runs the Breast Cancer Consultation Service, a consulting service for women who want an objective second opinion. I had my biopsy samples sent to Dr. Lagios, who reviewed them and consulted with me for an hour over the phone. His conculsion was LCIS. He said the reason there was so much confusion with my pathology results was because they had made an error in the original diagnosis, a typographical error I believe, and the other two opinions had bounced off of the error. Now, that to me was scary to think that professionals would allow the first opinion to influence their test results. Anyhow, Dr. Lagios wanted me to have an excisional biopsy done to verify that it was in fact LCIS since there was so much confusion surrounding my case. I had an excisional biopsy, and Dr. Lagios reviewed the tissue samples from that biopsy also and verified that it was LCIS. That was in 2001. The only treatment he recommended at that time was regular mammograms and manual breast checkups by a doctor every six months. I did this faithfully for several years. However, in the last three or four years I got pretty lax about the visits every six months for the manual, and I let the mammogram go for over a year because we were involved in remodeling a house we had inherited and I was obsessed with getting it done. My mammogram in 2009 came back clear. It was in May of 2011 that something was seen on the mammogram and they wanted me to come back for compression images. I refused because I was of the mindset that maybe mammogram caused cancer. My ND advised me to get a thermogram instead, which I did around June of 2011. It came back with a very high risk of cancer. I then opted to have an ultrasound. The ultrasound said it was suspicious and to come back in six months to check it again. So in January of 2012 I had another ultrasound. This time I was told they needed to do an MRI because the nodule had grown. I asked them what they could learn by doing an MRI, and the radiologist's reply was, "Well, nothing definitive can be determined unless we take tissue." I told her I didn't want to do an MRI that I would rather have a biopsy and know for certain what was going on with me. I was certain that whatever it was would be benign anyway. A day or two after the biopsy I got the call that I had ILC. I was shocked! I had been feeling a thickening on the outer side of my left breast. However, the spot was right where I had the excisional biopsy several years ago, and I was convinced it was just scar tissue. It turned out that it was the lobular cancer.

I live in a very small town with not very many good doctors, so I didn't know where to turn. I decided to call my second opinion doctor, Michael Lagios and discuss it with him. I sent him the biopsy samples and the reports I had. Doctor Lagios suggested an excellent radiologist for me to get an MRI and a breast surgeon in Washington. We travelled six hours one way to Washington to have the lumpectomy on March 29th of this year at the University of WA. The surgery turned out good. However, I did not have clear margins. When I had another MRI on June 4th, they were unable to determine if there was any residual cancer. They said it was too soon and that there was movement in the film. I have a very difficult time staying still for an MRI because my back is all fused. There was a great deal of discrepancy as to the size of the tumor after the surgery. Univ. of WA pathology said it was 5.1 cm., and Dr. Lagios said the tumor was no larger than 30 - 35 mm after reviewing the slides. I decided to trust Dr. Lagios since he and one other pathologist in the United States are known for being top-rate. The difference between 3 cm and 5.1 cm upstages treatment from stage IIB to IIIA. Nothing about this has been easy for me. I was told by Dr. Lagios not to let them do chemo on me without getting an Oncotype DX done. Doctor Lagios believed I would not need chemo because the tumor was low grade. They did not want to order the Oncotype test up in Washington. I had to go to another clinic before I could get them to order it. The results came back 17 which is at the low end, and showed I would get little if any benefit from chemo. I decided not to do it. I thought maybe I could even eliminate the radiation because there have been a number of studies done on post menopausal women with lobular cancer which is low grade and the possibility of eliminating radiation therapy. I have what is called a "classic" or "luminal A" type histology, which is suposed to have the best prognosis and the tests have said this type can eliminate radiation safely. However, the catch is from what they know now you must have a tumor that is under 20 mm with clear margins and no lymph node involvement. I had 30 - 35 mm and the margins were not clear plus I had one node out of five with a micromet. So I will be getting radiation treatment shortly. I was told that the radiation would take my chance of recurrence down to less than 10%.

I did find an excellent doctor who I am consulting with over the phone who offers a great deal of awesome information and support for both radiation and chemo as well as prevention of recurrence. His name is Dr. James Belanger of the Lexington Natural Health Clinic in Lexington, MA. He was highly recommended to me by my cousin who is himself an ND and sends all his cancer patients to Dr. Belanger. Dr. Belanger was my cousin's professor of oncology when he was studying, and is himself a cancer survivor. The thing I really liked about him is that he does blood tests on his patients every three months to test for markers that would indicate recurrence. He said it shows up in the blood before it shows up on any scans, and if it does who up as a marker in the blood, he then can correct the situation with supplements. This sounded better to me than scans that many times do not even detect the "tricky" ILC. I was told that MRI was the only good scan for me, and with that there are often false positives which would then cause me to have biopsies to determine the results, so to me the blood testing sounded much better.

By the way, my doctor up in Washington was confident he could perform a lumpectomy on me, even with the large size tumor, and still get good results, and he did. My other breast did not show any signs of cancer, and I don't plan to have surgery on it unless there is a problem. I was told by Dr. Lagios that LCIS is not considered cancer, but rather a high risk marker. I know that it ups the chances of bilateral cancer, but I've decided not to act out of fear. If something is detected, then I deal with it at that time.

I hope this helps and has not been too much information.

God bless!

Hi. I am new. Had bilateral May 2010. My oncs said the same "If it were me I would have both done." I had both done w/o recon. Having no recon means the foobs do not stay "down" because there is nothing to hold them down. If I were slimmer it would not look like my stomach was a sunken chest, LOL.

Having both done was a good choice for me. I could not stand waiting until the other shoe dropped, so to speak.

totally agree....aggressive treatment was my choice.  Will see if chemo is next I think it is one node so far positive!  Better safe than sorry! hugs

so true....there needs to be better testing  for ilc....told everyone I know if ever a problem insist on mri.....3 yrs ago radiologist did like 10 mamos...finally said all ok? was it really? or did it just not show up? glad I made decision about bi lateral!

Antonia- I couldn't agree with you more. They need to make MRI's more affordable!

I made the same choice...big daytomorrrowfinal path report I know it was in one node....prayers welcomed, hugs

I hear you Momine...this wasn't my first rodeo with extra mammos and u/s biopsy.  Had one almost 10 years earlier.  That and knowing I have cystic breasts plus finding more cysts were there beyond the tumor - there's no way I was going to keep going through that!

Hi everyone,

I'm new to this forum,

but not to BC unfortunately.

I came to this thread wondering if others have had a recurrence of ILC after surgery and radiation?

I wondered if anyone had a recurrence after radiation especially.

I had my 3rd recurrence at Easter this year. I had surgery, and then radiation.

I don't want to alarm any of you considering mastectomies v lumpectomies, and have no particular advice on this.

I had a double mast in 2002. I had 2 IDC tumors in left breast,and massive dcis with a little spill in right.

Only 1 node was involved left breast. Tumors were quite small, and grades 2 and 3. Follow up was chemo.

2003, I had a recurrence in left mast. side. had wide local incision, followed by rads. No further worries so far in left side.

This year, the cancer was lobular in the right mastectomy side. I had a small incision, followed by rads to right side. Now I feel 2 lumps, and some thickening. I saw my Onc who is gving me a Pet/CT combined(anyone had that?) and an MRI, I think for peace of mind about it all.

I've never had an MRI or Pet/CT.

thanks for reading.

Astrid.

Astrid, I had both of these tests when I was diagnosed.  The MRI showed my DCIS and ILC very well.  The PET/CT was able to detect the cancer in my breast and nodes.   Like you, I had DCIS and lobular in the same breast.   I've never had a recurrence or rads.  Also, I haven't had these tests since my mastectomies.  You have had to deal with this way too many times over these last ten years.  I hope someone who has more information for you will come along to share their experiences.   I really am hoping for good news for you after your PET/CT and MRI.  

Dear Astrid, Glad you found this!  This is what is so great about this forum.  We can often find women who have had a similar combination of circumstances as we have on this big wide network and gain information and comfort!  Keep posting your questions and concerns.  Try different topics to post and remember to make it a Favorite Topic so you can go back and follow!  That's what I do, at least, and it has been a tremendous support to me!  Sending positive vibrations! Fearlessfoot