TTS dragging out

KellyAnnD

I was diagnosed in early January with early stage DCIS plus IDC, estrogen positive, progesterone negative, her2 negative based on a biopsy of a 5mm lesion in my right breast. Surgeon ordered an MRI STAT at our surgical consult in mid-January, "just to be sure there are no more lesions" and asserted that my surgery date would be scheduled immediately upon receipt of the date of the MRI. 10 days later (insurance snafu) I had the MRI that revealed a suspicious second 7mm lesion that cannot be seen on sonogram or digitally enhanced mammogram plus suspected ductal invasion of 2.5 cm proceeding from the original lesion that has been biopsied. The reading radiologist commented, "findings suggest multifocal malignancy" and recommended a second look sonogram.

After more waiting for insurance to approve the MRI-guided biopsy the surgeon ordered (no idea why she didn't take the recommendation to try a second look sonogram first), a new radiologist said the second lesion is too close to the chest wall to allow MRI-guided biopsy and he ordered a sonogram, which I had yesterday and that will result either in a sonogram-guided biopsy or a stalemate between the radiologist and the surgeon. So here I sit with all this cancer in my breast and no surgery on the horizon. When all this began I thought I would be recovering from a lumpectomy and awaiting radiation by this time instead of still sitting by the phone jumping out of my skin every time it rings waiting for calls that don't come at all until I kick up a fuss or are agonizingly slow to come and offer nothing but more bad news with no forward progress toward treatment.

I'm looking for some of that "hope and inspiration from others who have been there" promised in the description of this group in the brochure while I await phone calls to tell me what is going to happen next. Somehow, it helps just to put this in writing and I feel certain that hope and inspiration from this board will be forthcoming at a much more rapid pace than our broken medical care delivery system can provide.

Thanks in advance.

I

catlady2

I am so sorry the start of your journey has been so frustrating! It is scary enough when the early testing , etc. goes smoothly. But to have all the glitches you are dealing with! Just hang in there. The only advise I can give you is to take lots of notes and ask questions. I found that some healthcare professionals were very helpful and took the time to make sure I was in a good place mentally and one in particular made me feel like I was wasting her time.

Hope by now your diagnosis has been finalized and treatment is underway! Please check in when you can and tell us how you are doing.

KellyAnnD

Thanks so much for your kind words of support. I'm currently awaiting an ATTEMPT at an MRI-guided biopsy scheduled for late next week. As I mentioned above, the radiologist didn't want to do it, but the new lesion was not visible on the sonogram he ordered, so he's apparently decided to try it with the caveat that he'll abort if he can't position the lesion so that he feels he can safely insert the biopsy needle without risking penetration of the chest wall which apparently can result in a collapsed lung. We'll give it the old college try on Thursday and see what shakes out.

I'm actually enjoying this little interval of not waiting for calls after weeks of being on high alert. I'm doing little things that make me happy, like sewing some new clothes, playing my musical instruments, watching funny TV shows and going for long walks in the country with my husband.

AliceB1950

As much as we want any cancer out ASAP, thorough is better than fast. Most cancers are very slow-growing, so a few extra weeks won't change anything. But sometimes, when there's more than one unwanted passenger in the breast, they are different types, like lobular vs. ductal, and with different hormone receptor status. Those differences have a lot of bearing on surgical options and treatment.

KellyAnnD

https://csn.cancer.org/discussion/comment/1693560#Comment_1693560

Alice, thanks for your your calming words of explanation. That helps me a lot. I do wonder what will happen if they can't do the biopsy this Thursday, but we'll cross that bridge if/when we come to it. I'm sure it's nothing they haven't seen before.

I like your "unwanted passenger" designation for the cancer in my breast. All unwanted passengers will please exit at the next stop!

KellyAnnD

https://csn.cancer.org/discussion/comment/1693538#Comment_1693538

Well that attempt and an MRI guided biopsy was a fail yesterday. No idea what's next .

KellyAnnD

After the failed biopsy attempt mentioned above, my surgeon consulted with a different radiology clinic which successfully completed a biopsy using 3D tomosynthesis mammography. My second lesion is confirmed to be IDC and is close enough to the original lesion that my surgeon believes it can be removed at the same time with the original lumpectomy/sentinel node biopsy plan. Surgery is scheduled for March 4, next Friday. So approximately 2 months from original DX. After post-surgery pathology is complete, oncology will be next to determine what mix of radiation/chemo/anti-hormone will be required.

Thanks to those who weighed in to offer words of support and encouragement to me in this extremely difficult period of waiting as the news kept getting worse.

Sunny5

I hate that you had to go through all that anxiety. I'm praying your surgery is successful and gets it all. Don't hesitate to be aggressive in asking questions and getting answers. The medical professionals I have dealt with have encouraged questions and feedback about how I am feeling. There is no symptom too small to report to them even if you don't think it's anything. Keep us posted on how it goes.