Diagnosed with lots of questions and few answers

MnEM1108

Hi all. I have been reading around on the Board since my initial mammogram indicated cancer (March 2017). I was diagnosed 4/5/17 with DCIS and IDC present in both masses based on biopsy results. One mass is 1.8 cm near the nipple (measured on U/S). The other is 3.7+cm near the chest wall (measured on mammogram). I don't know what portion of each is IDC/DCIS.

I have a million questions but won't be getting anymore info until I meet with my surgeon Wednesday. However, I have one nagging question that you all may be able to answer. My MRI today indicated no chest wall invasion (yay) but probable involvement of the skin at the nipple. The Radiologist only mentioned that I would likely lose the nipple (which I had already assumed because the bump is quite obvious by sight in that area). Now, my question is can they tell if there is definite skin involvement prior to surgery? And does skin involvement automatically move me to Stage III no matter what the size of the IDC is or node involvement (which have looked good so far on ultrasound and MRI, again, yay for the little pieces of good news)?

Many thanks for any info you can offer. I will be sure to update after I meet the surgeon Wednesday and finally get a little more info (which will, of course, raise a million more questions I have to wait for answers on). The Radiologist warned me this is very much a hurry up and wait process!

And, just for a little info on me, I'm a 37yo mother of 2 wonderful kids! We haven't told them yet, but will once we have some clue of what may be in our future. Breaking their hearts with this news will easily be the worst part of this experience. I care far more deeply about their happiness than my life or comfort! I'm sure you can all relate!

Rrobin0200

hi there. I'm so sorry that you are going through this, but know that you are at the right forum to ask any and all questions you may have. I, too, was diagnosed with DCIS-Mi in March of this year. Last week was my bilateral mastectomy with direct implant reconstruction. While I may not have all the answers for you, I can offer you my opinions and share my experiences with you. While our diagnoses are different, your surgeon Is correct in saying that this is a "hurry up and wait process." The waiting part is the worst; spend your time with your little ones. I am also a 37 yr old with 2 children. I was honest with them from the beginning, and walked with them through their emotions. It's tough, mamma, but you've got this. Take it one step at a time. Gather all your facts, but don't google!!!! Come here for support, advice and general knowledge. The internet is a very ugly place. We have your back!! Xoxoxo

Rrobin0200

hi there. I'm so sorry that you are going through this, but know that you are at the right forum to ask any and all questions you may have. I, too, was diagnosed with DCIS-Mi in March of this year. Last week was my bilateral mastectomy with direct implant reconstruction. While I may not have all the answers for you, I can offer you my opinions and share my experiences with you. While our diagnoses are different, your surgeon Is correct in saying that this is a "hurry up and wait process." The waiting part is the worst; spend your time with your little ones. I am also a 37 yr old with 2 children. I was honest with them from the beginning, and walked with them through their emotions. It's tough, mamma, but you've got this. Take it one step at a time. Gather all your facts, but don't google!!!! Come here for support, advice and general knowledge. The internet is a very ugly place. We have your back!! Xoxoxo

Moderators

MnEM1108 and Rrobin0200, sorry you have to be here... but wanted to send you a big warm welcome to the BC.org Community!

MnEM1108, we know it's not easy. Telling your kids that you've been diagnosed with breast cancer can be a tough moment, so we would recommend you to take a look at the article Talking to Your Family and Friends About Breast Cancer. This section offers some tips for talking about breast cancer with your kids at different ages. We hope his help!

Please come back and let us know how it goes at your surgeon's appointment on Wednesday!

Best wishes,

The Mods

MnEM1108

Still have a lot of questions after meeting with the BS, but I've updated my signature with what we know. I still haven't gotten a final answer on if skin involvement automatically means Stage III, but the BS did say I'll probably be getting radiation after the Mx because of it. The BS won't stage until after surgery.

I'm currently waiting to do a whole bunch of appts to finalize the treatment plan and get clearance for surgery. The current plan is Mx Left, chemo, radiation. After all of that is done prophylactic Mx right and hormone treatment. Waiting to meet with PS to discuss reconstruction. I have a muscle condition that will affect this whole process, so I may not have all of the normal options available.

Falconer

Hi MnEM,

Sorry that you have to join us but you will find good support here. Although no dx are the same we do have some similarities. My 1.1 cm IDC was located very close to the nipple. When it was removed, along w 5 cm of DCIS, the pathology did show microdermal invasion. It made me a candidate for radiation. I did not have chemo however because I had oncotype testing and the score was low.Did your oncologist order that test or the mamma print?

As far as staging goes, here's a link to that part of the BCO site:

http://www.breastcancer.org/symptoms/diagnosis/sta...

Hope this helps. Good luck navigating the early phases of treatment. Many women agree this is the hardest part.

MnEM1108

Falconer - I did ask about Oncotyping but she said it was big enough and advanced enough that she didn't see the need for it. She said she recommends the Oncotype test when the situation is more "on the fence." But mine was icky enough that there's no question I need it. But we'll wait and see if the MO agrees. And my case will go before their review board Monday to see if they agree with the treatment or have other recommendations.

Thank you for the reply. It is quite nice to know Im not alone. But sad so many of us have to go through this!

windingshores

I would try to get an Oncotype DX done. My cancer was also stage 1. but with lymphovascular invasion (lymph invasion was seen, locally). Grade 3, highish ki67% (proliferation) and generally not  a good picture. (I also had a mistaken HER2+ which I had to clear up.)

According to traditional pathology I would most certainly have had chemo. I had already bought scarves and supplies. But my Oncotype was low at 8. I actually had it retested (had to find an MD willing) and it was 8 again.

I was highly positive for ER and PR so did double mastectomy then hormonal treatment. No radiation or chemo in the end. How positive are you for ER and PR?

MnEM1108

windingshores - I actually received a call from my surgeon today about this. She said she'd discussed the case with my MO (who I haven't seen yet) and chemo is not a definite. I'll meet the MO in 2 weeks and we'll go into everything further. The surgeon had just been giving me her guess, but the MO said since we're doing surgery first we'll be able to tailor everything and not do anything more than necessary.

And my ER and PR are both 99%. I still don't really understand what that means, except that hormone therapy is absolutely going to happen. Though I'm only 37 and premenopausal, so I know I'm limited in what I can take

Hopfull2

hi mnm, we are the same age and I too have 2 kids. So yes it's tough but you will get through this. I was diagnosed last June. I had dcis and a small idc of 7mm. But it was.so close to my nipple and chest wall that she had to remove my nipple and a lot of my skin. My PS didn't think I needed chemo since I was stage 1. But I came back with a high onco score after surgery So I did chemo and no radiation since I had clear sentinel nodes. So make sure you get the onco test. Good luck with everything

windingshores

With 99% positive ER/PR you may be taking hormonal treatment only. Your Oncotype may be low. That would be nice.

I am in my 60's so others can chime in on the options for a 37 year old. Tamoxifen is one, obviously, but there are others (ovarian suppression plus aromatase inhibitor?).

So glad you are going to be able to take time to figure this out with your doctors.

MnEM1108

windingshores - I actually read a study on here yesterday that said o suppression plus tamoxifen or AIs worked better than tamoxifen alone...if you can handle the side effects. So, definitely something I'll discuss when the time comes! Right now it's definitely going to be mastectomy first. I'm getting pre-op clearance now. I go back to the BS in May to schedule surgery. I can actually see one of my lumps as a bulge on my skin. And it causes me pain. I will be happy to have it gone!