Waiting for next round of tests in a rural area--first post here

astyanax66

Hello, everyone--this is such an informative website, so thank you for those who put it together.

I'm 51 and had DCIS back in 2004 at age 37 (the whole process--callback for more views, core needle biopsy, then lumpectomy--back then, they didn't do anything else). I'm BRCA 1/2 negative, but with a strong family history (mother and several of her sisters). The waiting was so awful--I know many of you are going through this. It stinks.

Well, yesterday I got a call to come back after my yearly, but this time it's the left breast with microcalcifications and architectural distortion. I know, I know--that's not a definite. But in someone who's been through this before, it's not easy to hear. The irony is I could get in a few days sooner except I've had a colonoscopy scheduled for 3 months and don't want to change it. So, I go back on the 26th for a diagnostic mammo and ultrasound. And then we go from there.

What makes this so hard is that we live in a rural area. It's over an hour to the closest treatment centers. The demand for health care is high, and providers are few, so it prolongs things. I've tried to be proactive in the meantime, finding some names and reaching out to ask questions about appointments if needed. Back in 2004, it was a 3 month grueling process. Even now, it's about a month-long wait for a screening mammogram. I'm relieved they're getting me back within 2 weeks.

Like many, I'm worried about so many things--how this could affect my job (I'm the primary earner, and my work situation is demanding), what treatments will be best, and finding the right care provider. And of course--it could be nothing to worry about. But I'd rather hope for the best and plan for contingencies.

I wish you all well, and thank you for letting me join this community.

Dee

momto3sons

Hi Dee! Good luck with your testing!

I completely understand the worry caused by this - I went for a diagnostic 3D mammogram on 12/19 for a lump felt on the left side, and they ended up finding an area of architectural distortion on the right side. I'm not in a rural area, but with the holidays I ended up waiting 2 1/2 weeks to meet with a surgeon, and then there was another almost two weeks of waiting after that to get an MRI approved. I have that tomorrow afternoon.

I also go from thinking everything will be fine to thinking about what I'll tell my sons if anything is malignant. It probably doesn't help that I had a friend just diagnosed on Friday with Stage 2 breast cancer.

You'll be in my thoughts and prayers!

astyanax66

Thanks-- I am SOOOOO FRUSTRATED right now. I went in today for my dx mammogram and ultrasound. I mentioned rural, right? They have to 'send off' images to a remote site where a radiologist looks them over and then gives instructions to mammographer and ultrasound tech. It was test and wait, test and wait...for almost 4 hours.

And now...they want an MRI. They can't do it locally, so I'm going an hour north to the large teaching hospital for that. The only thing they would say is "probably benign," but I'm not sure I trust these people. I wish I'd gone to the large center to begin with, where there is a radiologist on-site. It would've meant less time ultimately, despite the drive.

How are you?? I just saw that you went back on the 18th for your MRI. I am crossing fingers for good results for you.

momto3sons

Oh gosh Dee - that sounds so frustrating! I hope the MRI gives a better picture of what's going on. Even hearing "probably benign" makes me want to know exactly what's going on. I'm glad you have a teaching hospital that isn't too terribly far away.

I got my MRI results yesterday. The cysts are luckily just that, but there is more to the area where the architectural distortion was noted on the mammogram. Based on the wording of the results it sounds like it might be malignant. I had an u/s today, and that didn't give any more info. So now they've recommended an MRI-guided biopsy. I'm not sure where they'll do that. The imaging center I've had to go to the for MRI and u/s is about 40 minutes away, but being in the suburbs of Chicago that's kind of par for the course .

astyanax66

Well, dang. I am so sorry it looks like could be a chance of malignancy. I hope you can get the MRI-guided biopsy scheduled ASAP, because this waiting thing is the pits, isn't it?!

I will say that when I had mine, it was relatively painless (back in 2004,so I imagine things have come a long way-I can honestly say I've had flu shots that hurt worse). I pray the same will be true for yours--minimal discomfort and with benign results.

momto3sons

Thanks Dee! I'm just hoping that the IV goes better than last time - it took three nurses and six tries to get the catheter in for the contrast! I have fussy veins, and now my arms and hands look like I was beat up lol