Just plain tired....

nbeck

Hello everyone, I was on a few months ago and was going through tests. A short version of my story... I have VERY strong family history of breast cancer, my mom passed from IBC and IDC in the same quadrant of the same breast, along with a family member passing at 26 of breast cancer and several other family members having breast cancer. During breastfeeding my 4th child I started to notice an indentation, several lumps, and some blood from my nipple on the same side. 2 mammograms, 2 ultrasounds, a spot compression mammogram, consultation with breast surgeon, being seen by the top breast radiologist at a breast center.... and still no answers. My mammogram and ultrasound were normal from what I was told other than dilated ducts (possibly from a year of breast feeding) a spot on mammogram on the OTHER side (later dismissed when it couldn't be found on ultrasound) and the best answer I have so far is "We will be rechecking again in 3 months, if we find something on that imaging then we will know where we are going with surgery. If we don't find anything we will need to do a non selective duct excision which will remove all the ducts from behind your nipple which will then be sent to pathology." I am just kinda reaching my whits end.... I'm so ready to just have it over with, and would have been fine with the non selective excision but my surgeon thought we should wait... in the mean time I continue to have spontaneous bloody and clear discharge that cannot be replicated with expression. To add to my frustration one of my mom's major signs before her breast cancer was found was bloody nipple discharge. I also started receiving letters from the original place that did my mammogram saying that there were abnormal findings when I was originally told that those scans were normal??? I'm not sure I have a specific question.... other than would you ladies wait this long?? I first saw my doctor in January....

lefty37

Just wondering if you contacted the original place and asked them about the abnormal findings? What about breast density? Any gene testing? If it were me I might feel okay if they did not find anything bit were going to recheck given the fact of breast feeding...but You seem to have an extensive family history...add in that fact, if you have dense breasts maybe request an mri?

Hope you get some answers soon.

Bren-2007

nbeck ... I can sure understand your fears and concern.  I think I would do two things ... request a copy of ALL the reports from all the scans, etc., and then be a squeaky wheel and keep after the breast surgeon to do follow-up testing.  Like Lefty pointed out, maybe it's time for an MRI.  Please be vigilant about this.  You may also want to request genetic testing be done next time you talk to your doctor.

Wishing you all the best.  Let us know how things go for you.

hugs

Bren

nbeck

I actually had a few appointments scheduled at the high risk clinic to be followed by an MRI.... the genetic counselor called me the day before the appointments to tell me that he had canceled everything because my personal risk that he calculated was 19% and you are not "technically" high risk until you are at 20%.... so apparently the genetic counselor was just able to go above what my breast surgeon ordered and canceled it all. My mom had genetic testing but it was years and years ago when they only tested for BRCA... from what I understand from my breast surgeon they now tests for something like 16 genes at once.... since my mom was negative for BRCA my insurance wont cover testing on me. I'm the kind that usually isn't the squeaky wheel... I tend to give in easily and go along with things. I'm starting to have other scary symptoms but haven't gone into them or really told anyone about them because I feel like a hypochondriac. Thank you for your replies!!! It really helps to be able to talk about this.....

nbeck

Oh and I have extremely dense breasts from what my breast surgeon and the breast radiologist told me.

crmnsuga1973

Dont give in. You HAVE to be your own advocate. Call your doc and let them know that cancellation of your testing is not okay. Who the hell came up with percentages of occurrence anyways? What if you are the one percent? Not to scare you, but screw that risk assessment guy, this is your body not his. You have symptoms that need to be addressed to find out what's going on.

Be persistent! I wish you the best!

edwards750

I definitely would get all your test results from your doctors and insist at least a MRI be done. You do have to be your own advocate after all it's your body and your life. I bet we all know someone who pushed and shoved and got results. You have a family history and troublesome symptoms. You shouldn't have to wait to know. Find another doctor if you have to. You have yourself and your children to think of. You will find peace of mind when you know what you are dealing with. Please keep us posted and try not to worry.

Diane

lefty37

call the breast surgeon and discuss the cancellation....The radiologist ordered my mri..surely the surgeon can do that without the counselor....my insurance did an investigation and approved mine and the only family history that I know of is my paternal grandmother.  Good luck and keep us posted.

nbeck

My surgeon is aware, I have seen him since.... he said that either way he would advise taking ducts out (no matter what an MRI showed) due to the continuing bleeding. I'm guessing his thoughts are the MRI isn't going to do much other than possibly cause more unnecessary biopsies.... I just feel like after being over 6 months into this I really hate to wait 3 more months. I'm ready to have the ducts out, on their way to pathology, and get some answers. I keep telling myself that it's probably nothing, a few months aren't going to make a huge difference, but then I think back to my mom. All the times that she said "it's nothing" or just went along with a bogus diagnoses or waiting.... and she left us at the far too young age of 51. I will probably end up just waiting.... but I will be anxious every day until then.

nbeck

I know that "something" is there.... my breast surgeon has said as much. It's just a matter of "what" and "where". A vast majority of discharge is benign... but mine falls into the highest risk of being carcinoma. Mine is bloody and spontaneous only, unable to be expressed. Which makes up basically all of the 6% of discharge that turns out to be carcinoma.

Bren-2007

Hi nbeck ... was thinking about you and hoping you're doing okay.

hugs

Bren

nbeck

Thanks Bren, I'm keepin on!! I've actually got some soreness in my lymph nodes on the left side and a weird "stinging" type pain that shoots through the area that they have been watching (I also just got over my period a few days ago, so should not have soreness, I never do) so I'm thinking tomorrow I will call up my breast surgeon since he told me to call with any changes. Hoping that maybe these new changes will get him convinced to order me an MRI and quit playing the waiting game! I just can't help but worry.... they played the waiting game for almost 2 years with my mom and a lump.... she was told over and over it looked like a cyst and by the time of her diagnosis had multifocal breast cancer, one of those cancers being advanced IBC. I have decided to take everyone's advice and become the squeaky wheel!! <<<Hugs!!>>>

nbeck

Just wanted to let everyone know that I requested a copy of the original mammogram and ultrasound report and it is supposed to be messaged to me through my online mycare account today. This would be the report that they keep sending me letters on saying there was an abnormal finding that needs followed up on after I was told that everything looked normal. Will update when I get the report.