MRI False positives in ILC screening

sgreenarch

Hi, All. Haven't been here for a while but thought to drop in to share something that happened to me recently. I remember how much these boards helped me at the beginning and just thought this story could be helpful to anyone going through the same thing.

I was diagnosed five years ago at age 49 with multifocal ILC in the left breast. Had a unimx, no chemo, took tamoxifen for 2.5 years, along with Lupron, then had an oopherectomy and switched to Lestrozole (Femara) and will probably take it for another two years at least. I am doing fine on it, sore joints have lessened, though it has caused my cholesterol to rise. I've basically gone on with my life and was pleased with hitting the five year mark until my yearly MRI showed something that 'needed to be rechecked in 6 months, BIRADS 3.'

As you can probably imagine, this was really an alarming thing to hear. The radiologists and all of my doctors (onc, breast surgeon, etc.) told me that it didn't look like anything bad, but that a spot 'lit up' more than the year before and that it had to be rechecked. I had a sonogram but this spot was too small to be seen and was given the option to do an MRI guided biopsy. However, they all thought this was overkill and recommended waiting, saying that the bx was an invasive ordeal that they were all fairly confident that this would turn out to be nothing. That I would be doing it for my mental health more than anything (not that there is anything wrong with that.) Uncharacteristically for me, a real worrier, I decided to go along with their recommendations and wait, as they said that, worst case, even if this was something, it was very very small. Yikes.

The waiting was hard, and the last month was super hard. I was a wreck by the time the 6 month MRI came around. I had played out all options in my head, trying to prepare myself. We all think about recurrences, and we will all no doubt deal with it if we must, and be as strong as we need to be, but it is, very simply, scary. I do have faith in my doctors and in God, but it would be inhuman not to be frightened.

The results came back as they predicted. A benign blood vessel according to one reading. A second opinion couldn't even see the spot on the repeat MRI. I am back to yearly MRIs now. What they did tell me, and this is one of the reasons I'm writing, is that this is the rough part about having yearly MRIs (often the recommended screening for ILC) that they 'see' things and have to follow up on them. Lots of false positives. Wreaks havoc on our nerves, but I'd still prefer to have such a good screening method, even if it means occasional findings that turn out to be nothing.

It is a relief when test results turn out to be OK, And while sometimes they may not, I have heard many stories lately of women who have been through this more than once, and are doing fine. We are a strong bunch Wishing everyone the best.

614

Dear SGreenarch:

I am currently going through a similar ordeal. 

In May 2015, (7 months after I completed radiation tx), two suspicious areas were found on my MRI.  (In April 2015 - my mammo and US were clear.) My MRI guided biopsy was scheduled for 2 & 1/2 weeks after the original MRI.  One lump was biopsied in May 2015 and was found to be benign. The other suspicious area was a "1.8 cm linear non-mass enhancement with rapid washin washout kinetics".  

Prior to the MRI guided biopsy, my mom and I decided that I should wait 6 months to have the biopsy of the non-mass enhancement because the doctor said that the area would be hard to biopsy and that he may not be able to obtain enough tissue.   It turned out that the linear non-mass enhancement was not well visualized  on the MRI so I would not have been able to have the biopsy at that time anyway.  The Bi-Rads changed from 4b to 3.

My next mammo, US, and MRI are scheduled for November 23, 2015.  This 6 month waiting period has been extremely difficult for me.  I cannot wait until next week to have peace of mind again, no matter what the outcome.  The "not knowing" is hard to endure.

The concern that I have is that I do not know why the area presented at the beginning of May and then could not be well visualized at the end of May 2015.  My oncologist and radiologist do not know why either.  I am hoping that the area can be visualized because I need to know what it is. 

Also, I ended up with a giant hematoma from the other MRI guided biopsy that I had in May 2015.  The size diminished from 8cm but it still feels like it is the size of a golf ball.  My oncologist says that it may never go away. 

At this point, I am constantly doing breast self exams and I "feel" lumps everywhere.  I will be so relieved to have my tests and whatever the outcome, I will no longer be worrying about a dx.

I am sure that I am fine and that I am needlessly worrying.

Thanks for your post.

 

sgreenarch

Dear 614:

First of all you are so new at this, still. I was beyond numb and scared during the first one or two years. Cut yourself some slack and know this, and I promise you that with time, you do start thinking about it less, and you get less scared.

I had a cyst that was suspicious in an early mammogram/sonogram, in 2011 and I had it biopsied. The wait was hell, (though I swam my first swim marathon, 3K, across the Sea of Galillee, while I was waiting, as it had been scheduled for a long time. In a crazy way, that swim and the achievement, helped me a lot..mentally.) but it was benign. It is hard not to overthink things, to google (very bad idea in some ways) and to try to outguess everyone. No one else is thinking about this as much as you, and you worry that you have to be vigilant and in control of everything. Problem is, we (at least me) didn't go to medical school and knowing only bits and pieces can be maddening.

Here's the good news. Now that you've had breast cancer, you will be watched unbelievably closely, much more than the general public. Drs. will not dismiss your scans because you have a history. Chances are, that if there is anything, it will be caught very early and can be managed, treated. Not fun, but the aim now is survival, not avoiding treatment. We all may have to go through this more than once, but thank God, we live in a time and place where we have better and better treatment options. Many of the women who've had ILC have bilateral mastectomies. I envy them sometimes that they can avoid a good deal of these screening nightmares. But I made the choice to hand on the my healthy breast, for now, and this is part of the package. (Had no choice with BC breast, as it contained two tumors, remote from each other and I wouldn't have had much breast left, too hard to reconstruct after lumpectomy.) I am even happy with the choice I've made, and am at peace with who I am, what I've got to do. But the screening is hard, no question. Hang in. Lots of us understand you.

614

Dear SGreenArch:

Thank you so much for your reply.  It is insightful and helpful.  I appreciate it.

I have had 4 excisional biopsies, 5 core needle biopsies, and 1 fine needle aspiration prior to my breast cancer diagnosis.  I had gotten complacent because I always had benign findings.  I NEVER thought that I would be diagnosed with breast cancer.  I even commented, "You are kidding, right?!" to my radiologist when he told me that I had a malignancy.  After my breast cancer diagnosis I had a double lumpectomy.  Seven months after treatment, I had an MRI guided biopsy.  (Grand total = 13) I was totally fine when I was diagnosed as well as throughout my treatment. I have only been concerned lately because the 6 month waiting and wondering is difficult and stressful because I know that I have a 1.8cm suspicious area and I also have a golf ball size hematoma.  I know that you understand the anxiety during the waiting period because you endured this with your suspicious cyst.  However, this situation is out of one's control so worrying is useless.  Regardless, I am glad that I had a double lumpectomy rather than a double mastectomy.

I really like your comments, specifically, "It is hard not to overthink things, to google (very bad idea in some ways) and to try to outguess everyone.  No one else is thinking about this as much as you, and you worry that you have to be vigilant and in control of everything. Problem is, we (at least me) didn't go to medical school and knowing only bits and pieces can be maddening."  That is SO TRUE!  Thanks for that.

I am sure that I am fine because I had a double lumpectomy, whole breast radiation, and I was medically induced into menopause so that I could take Arimidex/Anastrazole.  There is no reason to expect anything but normal findings/no changes on my mammogram, sonogram, and MRI.  That being said, I will have tremendous relief after I have my tests, no matter what the outcome.

I love and trust my RO and my MO.  I know that I am in good hands.

Swimming across the Sea of Galilee must have been amazing.  I would love to visit Israel.  My daughter went on birthright but I have never visited Israel.

Thanks for your response and for your original post.  I am glad that your finding was benign for your cyst and that you are ok now post bc.

sgreenarch

Wow, you sound very sane. Way ahead of me during year one and two. My BC was discovered on a routine mammogram, no biopsies before, no family history, nothing. BC was the last thing i worried about and did mammograms like a teeth cleaning once a year. So I was really shocked. Cannot believe how many biopsies you had, and I could see how you'd get accustomed to hearing benign news, and you seem to be strong and positive. Hoping for final good news for you so that you can move on. Truthfully, I think we who've kept one or both of our breasts do have screening adventures in our future, for better or worse, but you're good attitude is very helpful to me, too. And come visit!

614

Dear SGreenArch:

I was diagnosed a few weeks after a very good friend of mine found out that her fiance had bile duct liver cancer.  Chris and I were both diagnosed in June 2014.  He died in September 2014.  It was absolutely horrible.  After my friend lost the love of her life so quickly and without any preparation or awareness that he was sick, I cannot complain about anything ever.  I am really lucky.

I still will feel really relieved though next week after I have all of my tests.

I forgot to mention that my daughter had an excisional biopsy 3 years ago, when she was 17.  She had a giant fibroadenoma.  Thank God that it was nothing serious and that it was benign.

I would love to visit you.  Sounds amazing. I really appreciate your comments.  They are very helpful.  Thanks.