Just Dx

Kim1970

hi I was just diagnosed with dcis in my left breast on October 17th and MRI showed two more areas of concern in my left breast and one area of concern in my right I have completed the genetic test to see if I carry the braca gene and waiting on those results I find myself thinking the worst any suggestions would be greatly appreciated. The doctor says at this point everything is stage 0 but I'm just worried that with the other areas of concern that there could be something more.....

Sourisou

Hi Kim, I'm so sorry you are joining us in the DCIS club, but you've found a great place here for information - it's been invaluable in my (short) journey so far. As for the MRI, it's great that you were able to have one, to get a clear picture before deciding treatment options - but remember that MRI is a very sensitive tool and often yields false-positive. So don't worry too much for now. Do you have other biopsies planned already for the suspicious areas?

In the meantime, many hugs to you xx

Kim1970

I'm scheduled on the 14th to have biopsy done on the left and the right to check out those suspicious areas

tlfrank

Yes, I echo what Sourisou said - it's great that you were able to have one. I was not, and my initail biopsy indicated it was Atypical Ductal Hyperplasia, only bordering on DCIS. So a lumpectomy was done and that revealed pure DCIS grade 3. Now that I've had the lumpectomy, seems I am married to going through radiation (at least that's what I was told). I know I have a choice to not have it, but it seems like that would be taking an unnecessary risk. I did do genetic testing which revealed a POLE mutation that so far is not linked to breast cancer, but strongly linked to colon cancer. Hi Ho, Hi Ho, to the gastroenterologist I go....

Hugs all around.

Sourisou

Waiting is really the worst... even when the odds seem in our favors it's hard not to create a monster inside our head (I'm waiting for final pathology of my UMX in a few weeks and I just can't help imagining the worst scenario; I have a hard time staying rational in all this.)

I hope your biopsies ends up being benign. Did your doctor give you more infos about your DCIS already, like your grade for example?

Kim1970

i will have to ask him .im sure he did but with all this information my heaf is spinning

tlfrank

Try to get copies of your pathology report. This site has a wealth of information on interpreting them. I've started keeping all my records, diagnostic and financial, in a 3 ring binder. I've found it helpful to have only one place to look things up.

Kim1970

Thank you for the info .... im glad i joined this site .its been helpful

MTwoman

Kim, I agree with all above. Having an mri prior to selecting your surgery option is optimal. I didn't have an mri until after my lx (they didn't do them as often back then) and it found 2 more additional areas of concern on my right side that were then biopsied to find they were also dcis. That meant that I had to go back to have mx. I was able to avoid radiation (and save that if I need it in the future), but did have all of the reconstruction surgeries instead.

What is recommended several places is to start a binder with your written reports, pathology results etc. You can also add a questions section and note the answers so you can go back and look at things again later (it is common for information not to stick in our minds at first). There are good threads on here for coming up with lists of questions. Each of us needs a different amount of information to make our decisions - some want everything they can get from very complex medical journals, others want less information using more layperson language. You decide how much is right for you. If they have one where you are getting treatment, a nurse navigator can be an amazing resource. They are able to translate and condense medical information and help you prioritize what's important to you and convey that to your team.

Please let us know how we can help. You can do this!

Kim1970

i was reviewing the pathogy report .states extensive ductal carcinoma in situ identified low nuclear grade cribriform pattern Associated microcalcifications seen no comedonecrosis identified .in situ carcinoma compromise is Approximately 80% of the submitted breast tissue no evasive carcinoma seen....

MTwoman

Low nuclear grade is better than high nuclear grade, so that's good news! No comedonecrosis is also good (rapidly reproducing bc cells aren't getting enough nutrients to sustain them all, so some die, leaving areas of dead cells) Did they say whether they got clean margins (no dcis cells on ink)?

Kim1970

i will check again . Also i did get the results of the genetic test .... all came back negative

Peacetoallcuzweneedit

Hi Kim -

It is really awesome that you are getting an MRI...we sound similiar in that there was initially DCIS diagnosed (left breast 5-6cm) but other areas of concern. I had two more areas in my left breast and one in my right, so I had additional biopsies as well...

I chose a DMX and reconstruction. My second biopsy showed lobular neoplasia on the right, but after my Double MX the final pathology revealed IDC. All the prep tests you are doing will help you and your docs get a better picture of treatment options and what the next step will be....Kim and Sourisou the waiting - especially in the beginning is the worst...very hard not to go to "crazy town." I think it is all part of the process....be patient with yourself. I had to bring other people to my appointments in the beginning, because I would get in with the doc and I literally could not process the information. It felt like I was swimming in my brain....so I brought someone and also ask to see if you can record at the appointments....many other ladies gave me this advice....

Kim1970

im feeling better with the results of the genetic test .i have the 2 biopsys on the 14th a consult with the oncologists on the 20th and surgury for the 5th of Dec ... at this point it will be a lumpectomy .this all depends on results of the biopsys .....