HELP PLEASE!!!

Hello Mommy,  I just read back through some of the other excellent advice you have been given already.  If you have been seen by surgeons who specialize in breast cancer, you have probably been examined, prodded, etc. by very experienced hands. That being said, those hands are not perfectly correct all the time.  If the radiologists who read your MRI agree that there is "nothing" to biopsy, that may be true because ILC, if that's what is there, may not show.  LCIS, some ILC, and some DCIS doesn't show on MRI, either.  It's so hard to know what to do.  You can have your mammo/US and MRI's all re-read by other experts, of course; I'm sure you have considered that already.  You haven't had a PET/CT, which may show uptake where the MRI didn't.  However, be prepared to pay for it out-of-pocket, because with all that has been said, I don't think a doctor could get insurance to pay for it.  At least it is something to discuss with your doctors.  It is true that ILC is often diagnosed at advanced stages because it doesn't always show on imaging.  I wish I could offer more help, but I just don't know what to say.  If you are over the top with worry there is always the very drastic step of prophylactic mastectomies, but holy cow!  Without very good reasons to suspect cancer, or a very high risk of cancer genetically, I don't think you could get insurance coverage for that either.  With a first degree relative who had BC at a youngish age you may be able to get genetic testing covered, but BRCA gene mutations are rare.  An oncologist might prescibe Tamoxifen for you to see if your breasts "calmed down" and to prevent BC, but that won't tell you if you have it already.  I'm really shooting in the dark here.  I wish I could help more.  Are your doctors really, really expert.  My own experience was that my ILC wasn't found early because my local gyn, PCP, mammo-radiologist, and US doctor all missed it for many years.  They saw asymptomatic cysts and said there was no treatment, biopsy, needed.  Innocent that I was, I believed them.

GET  A BIOPSY or BREAST MRI --- ILC is rarely detected by Mammo and Ultrasound and because it's 7% of invasive breast cancer many, many BC surgeons, and breast specialists are not trained in how to detect it. Take if from someone who was midiagnosed for years but tested every six months.

Trust your instincts!!!

Hugs 

Mine did not show up on ten mammograms...over 10 years. A digital ultrasound showed 2.5 cms. The MRI showed 8.5 cms. Removing it...10 plus cms.

The MRI did show mine. I had the fullness for about 2 years and was told it was menopause coming on...mammo is clear...mine shrunk up within a a2-3 month period very noticeably, I had the Orange peel skin too and an inverted nipple.

The oncologist said mine was there at least 10 years...low grade...slow growing.

The specialists can't biopsy something unless they can detect where it is. Has bloodwork been done to test for tumor markers?

Mommy2....you need to trust the docs....you've had several says its not cancer...so now is the time to enjoy the good news....go for a follow up in 3 or 6 months, but don't waste your life worrying that its cancer!!!  if G-d forbid that day ever comes, you will deal with it then....but don't waste your life worrying about something that is not yet.

Prior to my biopsy and diagnosis of breast cancer, I spent a horrific evening on the Internet looking at bone cancer. My gynecologist had said of the area of concern I had found that "it could be just a rib." Because it was obviously SOMETHING, I ended up in the middle of the night weeping at my computer over descriptions of the treatment for bone cancer that presents in the ribs.

It was NOT a good use of my time, but it happens.

The group responding here is both helping and hurting you - telling you that you need to believe that if there was something there, one of these many doctors and imaging procedures would've found it, while at the same time throwing in scary stories of delayed discovery of cancer of various kinds.

The reality is that you have gone above and beyond in your quest to follow up on a concern that you have, and the results are a definitive "NOT CANCER." There are always going to be these stories of misdiagnosis or lack of imaging or whatever, but as I said before - if there's actually a woman here who saw FOUR breast surgeons and had diagnostic mammograms and ultrasound and MRI and her cancer was STILL missed in her non-dense, mostly fatty breast tissue, let THAT woman come forward with a description of how her cancer was eventually found, because THAT is the only "story" that would be of value here. The rest of this is just needlessly feeding your fires of worry.

There is something much worse than not finding cancer: it's losing perfectly good days of apparent health to worrying. Even if there were cancer in there somewhere - a long-shot based on what you've learned so far - other than some slight breast discomfort that may be hormonal and that should subside with herbal treatment - you are physically doing just fine and able to spend your time enjoying life and your family and helping others who are NOT as blessed right now. It might be helpful to discuss all of this with someone who can give you help in living your life well right now. Certainly, people here have stories of "oh, I knew it was something, even though no one believed me." The ladies who are NOT on here to share their stories are the ones who had a scare, learned it was nothing, got over their worries and moved on. It would be great if you could hear from them - there are MILLIONS of them, even if you just think about the number of women who are in that 80% of biopsies that turn out to be nothing - but they're NOT hanging out on this website. 

Even if you eventually are found to have some evil cancer cells circulating around, you will NEVER be happy that you wasted this precious time. We all have only a certain number of days when we can do what we like and or need to do. Please consider stepping away from bc.org for a while and trying to enjoy what you have right now. 

Mommyof2...I am going to suggest you see a therapist for anxiety to help you through this time.

I am also going to suggest, since you do have some physical manifestation of something, that you see a general practitioner for a complete physical to include body scan, routine bloodwork, mammogram and pap smear.  It may help to find what is causing all these symptoms and to put your mind at rest that you have had a complete once over.

Have you had someone close to you become seriously ill or pass away lately?  This can trigger extreme hypochondria and anxiety.  I am not saying you are crazy, quite the opposite.  I'm saying you need peace of mind.  The best way to get that is to know you have covered all your bases.

Oh, and maybe I'm being to sensitive, and forgive me if I am because I am fighting cancer, but somehow it struck me at rather fatalistic when you include "Not sure if any of you ILC ladies are still around...."  It sound like you feel this is a death sentence. Maybe that is why you are also so panicked.  Please rest assured that if you DO have ILC it is very treatable and you will be around for a long, long time. 

(((HUGS))) I hope you can find some answers and some peace.

Hi Mommy,  I think you need to give yourself time off from these worries. There is no evidence of disease now, and there is no particular reason to assume disease is coming. Having read thru all of this, I see that you had a baby less than a year ago. I don't know if you nursed or not; doesn't matter: that experience causes huge changes (sagging and shrinking, for two) in the breasts.

 I hope the anxiety meds kick in quickly. While you are waiting for them to work, you know you can take a little Ativan or Xanax. Harmless and it may let you sleep, which I suspect you need (baby + worry).  

This is a scary thing but are you obsessive about this?  Talk to a mental health person who might be able to take your anxiety down a notch so you can mother your children without being so drained.  Don't miss today, ever. Make a deccision to get a handle on this now and follow up later if you can.