I just want to move forward

AMLMom

I was recently diagnosed with 1 cm DCIS (High grade, comedo necrosis). It has been almost 7 weeks since my original Mammo and 6 weeks since diagnosis. Since then, a much larger area (additional 7.5cm) was found on the MRI posterior to the original spot. They tried to biopsy the large area with ultrasound but couldn’t see it, so an MRI guided biopsy is required. That test isn’t even booked yet. A second area in the retroareolar region was biopsied on 12/21, but I don’t have the results yet. I have been told that a MX is likely required, but haven’t even met my plastic surgeon yet. That appointment isn’t booked yet either. I know the holidays slow things down, but I am so frustrated. I feel like life is at a standstill.

santabarbarian

You may need push them. It is ridiculous how long things take. It is maddening. I think you sometimes need to be the squeaky wheel.

rockymountaingirl

Does your hospital or cancer center have a "navigator" for breast cancer patients or cancer patients generally? If so, the navigator should be able to help get things moving. If there is no navigator or if the navigator isn't helpful, then I agree that you may need to push, tactfully but firmly, for some action.

AMLMom

Happy New Year and thank you for your responses!! I’m sorry that I was so negative in yesterday’s post. I was just upset because it was another day without results and so much time seems to be going by with no real progress. I’m better now and focusing on the many positives. I will gently push at my next meeting with the BS on Friday. Best wishes to all for 2019

Runrcrb

AMLMom - we all have down days. I remember thinking my breast surgeon should really postpone his vacation in order to support me. Fortunately, while breast cancer is a personal crisis, it's not often a medical crisis. The apparently long times between doctor appointments, tests and results can be maddening. I typically had test results within 3-4 days - does your healthcare system have an online patient portal that might allow you to see results prior to a doctor appointment? They don't always release them prior but sometimes did. As you learn more about your diagnosis, don't hesitate to push for appointments. I found that having my PCP and then my breast surgeon's offices call usually got me in sooner than I could on my own. When the radiation oncologist consult was scheduled farther out than I liked, I did call as I had a social relationship (mother of daughter's elementary school classmate) - never hesitate to pull strings if you have them. And always be nice to the people on the other end of the phone - most of them are very caring and trying to get you in quickly too.

Once you have diagnosis from biopsies and a recommendation from your breast surgeon, take time to consult with other doctors - plastic surgeon (more than one if you are undecided on reconstruction options), possibly a second breast surgeon, and oncologists. My original diagnosis was late June; I didn't finalize my plan of attack until August and had my first surgery in September (my treatment plan was surgery, chemo, radiation, AI, reconstruction - not all follow this path).

AMLMom

Hi Runrcrb. Thank you for your thoughtful note. Thankfully I do have access to an on-line portal. The good news is that my MRI biopsy has now been scheduled for this Friday. The bad news is that I finally got results from my 12/21 biopsy and they were inconclusive due to insufficient cellularity! I don’t know more today than I did two months ago! Trying to focus on the positive.

Mncteach

if you do have access to a breast health navigator, use them! Mine has been soooooooo helpful. Made sure I had all my info as quickly as possible, moved appointments so that my worrying nature could get a break. Even made arrangements for lol my tests to be done before school started. ( I was diagnosed the first Friday after school started) That said, it never felt like it was moving quickly enough. Once I had the diagnosis, all I wanted was for it to be out! Now I’m in the waiting stage between surgery and chemo. Hang in there, we all have good days and bad days

AMLMom

Thank you again to all who responded. After my MRI was completed last Friday, the radiologist came in to tell me that the machine was broken so the test didn’t work and they would have to reschedule. I just broke down. I can’t take more delays....but I received a call today and it looks like the head of radiation is taking over and made time to do my repeat MRI first thing Wednesday. 🤞. Hoping for some answers soon

Runrcrb

amlmom - sometimes tears help. Sorry to read of your troubles but glad to know you’re getting attention.

MDRR

Thinking of you AMLMom and sending good wishes that all goes well wednesday and you can move on; it helps so much to get over this hump. the waiting is the worst part for sure and you have plenty of shoulders to lean on here.