Add me to the DCIS Crowd

buffyjc

Good morning everyone! I'm 41 and was just diagnosed yesterday with "extensive" DCIS in my right breast. Lots of thoughts and unanswered questions going on in my head right now. 7 samples were biopsied and all 7 were positive. I don't have my pathology report with me today at work but I do recall it noted both comedo and cribriform...I didn't even realize that was possible??? It also noted I'm a Grade 2. They emphasized that the surgical pathology report could produce different results, however. I was referred to a breast surgeon which I'll be meeting next Friday. I'll also be having genetic testing, I believe that is to determine if my cancer cells feed on hormones (???). Forgive me if I'm not saying all this correctly. Lots of info to take in and I'm sure I didn't fully understand everything. I had microcalcifications which is why I was sent for biopsy. All of those 7 samples were from that particular cluster but I believe I have another cluster that wasn't sampled. I suppose I could be a candidate for another biopsy. Has anyone had this happen before? According to the radiologist and breast nurse navigator my preliminary treatment plan, based on the biopsy pathology report, is lumpectomy and aggressive radiation (5 days a week for 6-7 weeks).

Any thoughts and prayers would be appreciated in the weeks and months ahead.

Sitti

buffyjc,

I'm so sorry you find yourself here. The waiting can be such a challenging and scary time, but you will certainly find alot of encouragement and support here from everyone. I too was DX with DCIS in right breast, comedo necrosis, grade 3, hormone neg. I'm not nearly as versed as most of the ladies but in my particular case they tested to see if the DCIS was hormone feed from the biopsy sample. I was given the results when I met with the breast surgeon. I did do genetic testing as well, and that was to determine if I had the BRCA gene, which I tested negative for. I know the waiting really is the hardest, I will be praying for you. Keep us updated. Hugs and prayers.

Moderators

Hi buffyjc, we're sorry that you had to finally join this group. We know it's scary and confusing right now, and you have many many questions, but just know that you are not alone. We'll all try to guide you along! While you get responses and great support here, you may want to check out the information we have compiled HERE for the newly diagnosed.

Kind wishes to you. Please keep us posted on how you're doing!

The Mods

buffyjc

Thanks, Mods, for the link to help guide me along the way. Very much appreciated!

Sitti - So, should I have expected for my biopsy results to inform me about whether my cancer cells feed from hormones, as well? I thought I'd prepared myself by reading as much as I could while waiting for the results but I'm sure I didn't absorb it all.

My prayer is that my surgical biopsy will remain the same as the sample biopsy with no invasion.

Many thoughts and prayers for everyone dealing with this disease! We WILLget through it!

MTwoman

Hi Buffy, Your biopsy tissue should have been sent to pathology for the hormone receptor status (estrogen and progesterone). HER2 neu (a tyrosine kinase protein receptor) is typically sent out to a specialty lab, so comes back a bit later. These are the hormones that "feed" tumors. If the ER comes back +, then typically, after surgery, there is a follow up treatment with either Tamox or an AI. HER2 also has a targeted treatment (Herceptin), but it is not typically used in DCIS. I do believe that there are studies being conducted about whether it is useful and whether the risks/benefits make sense for DCIS (I believe there are ladies on these boards who had DCIS and used it). You should get a written copy of your pathology report for your own records.

As for extensiveness, I had what is called multi-focal/mulit-centric DCIS. That means that they found several tumors in different quadrants. It is not uncommon, especially for certain architecture types. I had cribriform, papillary and micro-papillary architecture. My understanding is that cribriform poses a higher risk for multi-focal disease. That is actually why I had an MRI after my lx. I got a second opinion on my pathology from a specialist in DCIS and he suggested due to my age and the architecture, that I should look for more disease before I underwent radiation. (that news came the exact day before I was scheduled to start my first radiotherapy mapping appointment) I paused my rad treatment and went for mri, which found 2 other areas of concern, which when biopsied also turned out to be DCIS. They recommended mx at that point, as I had very close margins on my original lx (and had thrown a hematoma from that surgery). They did pathology on the mx tissue as well, and found that the 2 other lumps were similar in architecture, no micro-invasion or idc, but areas of comedo necrosis were present.

Genetic testing is done to determine if you have any gene abnormalities that typically result in a higher risk for certain types of cancer (BRCA 1 or 2 are the most well known, but there are numerous others). This is not done on your biopsy tissue, but is a separate procedure. You should get genetic counseling to help you decide the risks benefits of this and to help understand what the results mean if you do proceed with this. These results sometimes impact people's treatment decisions as they can change your future risk.

I know it is a lot to take in right now, but keep asking any questions you have. Either/both here and with your treatment team. The more you know, the better decisions you can make for yourself. It is overwhelming, and no one minds repeating or restating things. If you do have questions for your team, write them down and then either write or record their answers so you can go back over it and refresh your memory. It is amazing how some things can slip right out of the brain when it is overwhelmed. Sending you healing light and ((hugs)).

Sitti

Hi buffyjc, I just saw that you had posted a question, I'm sorry I didn't see it sooner. I was uninformed on all this when I was first DX'd, I didn't get (or even know to request) my biopsy report until well after my lumpectomy and it's pathology. Only then did it occur to me to call the hospital where initial biopsy was done and request the pathology report. When I got it the hormone testing was an addendum which makes me think it was added at a later time. I say all that to say maybe when you received the path. report, if it was immediate, then the hormone status may not have been on there.(not really sure but just a thought). How are you doing? Your appointment is tomorrow correct? I hope you will get some of your questions answered. I'm going to mark this board as a favorite so I will be notified when you respond. I'm praying for you.

MTwoman - they didn't even check for the HER2 expression with mine. From what I understand that's not a standard testing they do for DCIS is it?

Annette47

They didn’t check for HER2 on my DCIS either (and the micro invasion was too small for testing). That was >4 years ago though, so that may or may not be changing. I do know that the ER/PR didn’t come back immediately - it took longer than the initial pathology.

MTwoman

Sitti and Annette, I don't think it is standard (and mine was 14 years ago!), but I did send my pathology out for a second opinion to the guy who literally wrote the book on DCIS, so he might have ordered it. He was the one who recommended the mri BEFORE radiation (which was also not typical back then). I got his report the DAY before I was supposed to go into my first radiation appointment. We didn't have a breast mri imaging center in town, so it delayed my treatment, which made me frustrated and anxious at the time. I decided to trust his opinion and delayed radiation. It may have saved my life, as there were 2 more tumors that had not been seen by either mammo or us in a completely different quadrant (that were a tiny bit more aggressive (comedo necrosis) than the lump that got my attention). I then had to get them biopsied (more delays). In the end, I had to get mx instead of lx and rads. But I'm super glad I did, NED 14 years later is not too shabby!

buffyjc

Good morning! Thank you all so much for the replies!

I have my pathology report from the biopsy and it indicates, "hormone receptor status deferred to excision". Today, the nurse navigator called to follow up with me so I asked her about that. She said that testing would happen when I have my lumpectomy. I do recall she had mentioned last week (when I got "the news") that I may need another biopsy, which I believe that would be due to my pathology report indicating "extensive DCIS" from what was sampled. Thoughts on that???

On another note, I had genetic counseling and testing done yesterday. Meeting with the BS tomorrow afternoon.

Keeping my head up...praying, positive thinking, taking one day at a time.

MTwoman

Buffy, the only thoughts on the indication on pathology report of "extensive DCIS" is that an mri would potentially be helpful to map out the total extent. I had areas of DCIS that only showed up on mri. Just something to add to your question list? I only had my mri AFTER my lumpectomy, so had to go back in for another surgery and completely change my treatment plan. We're in your pocket!! ((hugs))

Sitti

Buffyjc, I hope your meeting goes well tomorrow with the BS and that you get all your questions answered. Just as a side note(and you may already be doing this), I found, if possible, it's good to take someone with you as a second set of ears. I had always been the second set of ears for others, my mom, my sister, etc. and was able to ask, hear, & retain the information being given, but since I've become the patient I can't seem to ask questions OR retain what was being said (even when my questions were written down I'd leave them in my purse). I was blessed to be able to have my husband there for most appts. It does sound like you are arming yourself with information to ask good questions. Let us know how you are doing. (((hugs & prayers to you)))

buffyjc

MTWoman - I'll definitely ask about an MRI. Thank you for mentioning that.

Sitti - Yes, my husband has been with me for both the diagnosis and the genetic counseling. I can certainly see how having a second set of ears to listen is important.

Thank you all for the support! My continued thoughts & prayers for each of you, too!!!

GAMomma

Hey Buffy.. welcome and so sorry you are here. I have or is it had after treatment..hmmm yet another question . So I will go with had..DCIS grade 3,3 masses,the largest being over 4cm. I chose a double mastectomy. A few reasons. The fAct that it was larger and high grade a mastectomy of the right breast was recommended. My oncologist then told me if my sentinel lobe biopsy was clear then I would be on Tamoxifen for prophylactic of the left breast. I had such mixed feelings of one breast. I could not do immediate reconstruction. First there are no doctors in my area that have all the accreditation that is recommended in another forum. So I thought 1 breast? For how long? It would be weird. I've had 5 kids,breast Fed them all plus had a large weight loss over 10 years ago. Let's face it,these girls have seen better days. I thought I will have 1 very nice boob and the other just sad,saggy,needing help. Yes I could have surgery to help "match" but I knew it was not for me. I was immediately pulled towards a double. I had not ever second guessed myself. Here I still boobless and fine. Yes I will get reconstruction sometime,but I have to heal first,that's my goal. Since so had a double,Tamoxifen would not be necessary since I removed all threat of cancer. Ok maybe that's being a bit broad,but the right here,right now cancer was removed. I got clear margins from the mastectomy and sentinel lobe biopsy. After you have anything removed it's normal to have everything sent for pathology. I found out after that my left breast had cancer also. Never seen on a Mammo..no lump,nothing. It was very very small. Chances are in 6-12 months I would have needed more surgery. I felt relieved in a way about my decision to remove a healthy breast. It really was not healthy,just hiding. Take some time,look at pictures,read others story. A lumpectomy may need reconstruction of some sort. Check that out. Not saying to have a mastectomy. That is a decision only you can make,but of course talk to your medical team. Read up on post op, 5 yrs from now,if possible. I had limited options due to the size of my cancer,even though it was it DCIS,my entire duct was nearly full. I'm sure there is a medical term that is used,but this is my language. Sometimes the terminology itself is exhausting. I hope your genetics come back fine,mine did 😊 I am now 6 weeks post op and going back to work part time on Monday..my recovery has had a few bumps,but for the most part pretty good.

Bree2

Hello,

I am also newly diagnosed IDC. I'm having a lumpectomy on Monday with lymph node biopsy. I'm very nervous and hoping I will only need radiation therapy. I did find out that I am estrogen/progesterone positive which I believe is good. I am also her2 negative. I'm not sure I really understand that so if anyone can explain I appreciate that.I am really hoping I made the right decision to have just a lumpectomy and not a mastectomy. I see other people have struggled with this surgical decision. Very lost and confused.

Moderators

Hi Bree-

We want to welcome you to our community, although we're so sorry for the circumstances that have brought you here. The first days and weeks are so hard. You might want to check out our forum on IDC, lots of great info there you might find helpful with your diagnosis: https://community.breastcancer.org/forum/96

We're here for you!

The Mods

buffyjc

GAMomma - Thank you for those suggestions (reading stories, viewing pics, etc.,). There's so much to take in right now but I think being educated and informed is so important.

Bree2 - I'm so sorry you had to join but I'm quickly learning the support here is wonderful. My prayers are with you!

I meet with the BS in a couple of hours. I'll update sometime over the weekend.

Sitti

buffyjc - I just wanted to let you know I thinking about you this morning and I hope your appointment went well yesterday.

Bree2- I'm sorry you have to be here but this is a wonderful community and one thing you will quickly realize is you are not alone; you will find support here which will give you strength and encouragement. I too wrestled with the decision making process, as there's not a right or wrong but what's best for you. I know what that struggle is like, I'll be praying for you. God Bless.

buffyjc

Sitti-Thank you so much! I truly appreciate it. The meeting with the BS went well. I liked her a lot...felt extremely comfortable with her. She's sending me for an MRI which could happen as early as next week (hoping since I just want to get it over with). She did question the location of my biopsy site and hematoma in relation to the initial radiology report indicating the biopsy to be done in a different area, though. The radiologist who read my diagnostic mammogram ordered the biopsy to be done on the "upper outer quadrant" of my right breast but the bruise is about midway with the hematoma sitting just under my breast and right above my bra. So, she said she would inquire abou that and is also part of the reason for the MRI. She is thinking I may still be a candidate for lumpectomy but depending on the results from both the genetic test and the MRI, I may need to consider a mastectomy. I'm nervous about surgery and general anesthesia so to hear I may need a mastectomy has me a bit on edge. I've never had any surgeries except 2 c-sections and I didn't need general anesthesia for either. I know this should be the very least of my concerns but I'm one of those people who get true anxiety over situations I know nothing about.

I'll definitely be praying for strength for all of us. ((Hugs))

Sitti

buffyjc, I'm glad you like your BS and are comfortable with her, that is so imporant. I hope your results from the MRI and genetic testing come back favorably for you to get the lumpectomy but I know you will do well which ever way you go. I had the genetic testing and it came back negative, praying yours does too. Sending hugs your way.

buffyjc

Hi ladies! Just checking in again.

I had my MRI on Tuesday and will be seeing my BS later this afternoon. Thankfully, my genetic testing results came back with good news so that's one less thing I have to stress over right now. I'm anxious to hear the results of the MRI which my BS will discuss with me today. I keep telling myself that if anything had required another look, or possibly another biopsy, they would've already called to tell me they've already scheduled an appointment for that. So, no news is good news...right?

I'll try to update again sometime this weekend.

Hope everyone is having a good week! ((hugs))

Sitti

buffyjc Hope you get a good report, let us know how it goes.

MTwoman

Buffy, glad you got good genetic news and you've gotten the (hopefully) last of your imaging studies finished. I'm sure you're anxious to hear the results, and in my case, they did call me within 24 hours to ask if I could come back in (I couldn't as I had returned home). Hoping no news is good news!

You and your BS will be into full planning mode at your appointment and that feels so much more empowering than discovery mode. Good luck and ((Hugs))

BringOn2017

Good luck. I too was diagnosed with dcis and atypical hyperplasia on the right at the end of January. My genetic results are still pending. My MRI showed bilateral background parenchymal enhancement. In view of my family history (mum and her sis both had advanced idc before age of 45), I opted for bilateral mastectomies and tissue expanders. I'm now in the process of filling and have had 300ccs so far. Waiting for the surgery was by far the worst part. Good luck and take care.

buffyjc

Hello all! So, here's my update from Friday's appt w/my BS. Given the results of my MRI, it looks like a mastectomy would be best for although she did not recommend a bilateral. I'm meeting with the plastic surgeon Tuesday to get his recommendation for reconstruction and what he can do for the healthy breast. I guess I need to visit the reconstruction forum to ask questions there regarding unilateral mastectomies and immediate reconstruction. I should have a date for surgery by the end of the week.

Thanks so much for all the support! I'm so grateful to be able to connect with all of you, even given the unfortunate circumstances for each of us

Sitti

Buffyjc, good to hear from you. I'm remembering you thought this may be the outcome but wanted to see how are you doing with this news? I'll be praying for you as you meet with the PS and discuss your options. So much to take in and process through but I know you will do well. Keep us updated. My BMX is this Wednesday! Yikes and yay at the same time. )

buffyjc

Sitti-I'll keep you in my prayers for a smooth surgery Wednesday and a comfortable recovery! ((Many hugs))

Part of me feels I should press for the prophylactic MX of the healthy breast and honestly, my only reservation is length of time under general anesthesia. I wish I understood why it gives me such anxiety. Sigh..

Sitti

Thank you so much Buffyjc! I understand the concern with general anesthesia as I too have been somewhat anxious about general anesthesia too. I've had 3csections, tonsils out (as an adult in recent yrs), and another surgery and was never anxious. But, for me, I think I want to be done with all this and that has outweighed the anxiety. Sending prayers as you move forward determine which way to go.