Newly diagnosed with DCIS and so scared

Heartdesires, to answer your question, I know that dcis isn't routinely tested for HER2. To be honest, I'm not sure why my surgeon asked for it to be tested, maybe he suspected some invasive component as I presented with a palpable lump and was younger (38) which can both be indicators of higher grade or more aggressive disease. I think they don't currently test for it routinely because they're not sure about the significance in dcis. Some studies suggest it is a sign of aggression (as in invasive disease) and others suggest the opposite. So, until they understand what it means in dcis, they don't routinely test for it.

MTwoman and DCISinAZ, thank you very much for your responses. DCISinAZ wishing you the clearest of all scans when you go in for the recheck.

In watching a video by radiologist djmammo, it lead to other videos on YouTube and one prominent radiologist recommended treating large DCIS as an invasive cancer. I'm guessing this is not necessarily the mainstream treatment guideline but it is a provoking thought regardless.

My pre-op is tomorrow and I was fearful that my chest x-ray will show mass, my labwork will show infections, EKG will be abnormal, etc. So I have to constantly remind myself to not to speculate the worst case scenario and just concentrate on the next step with hope and strength. I must say, this is causing great upheaval for my parents. My husband is relatively calm but my dad is probably weeping bucketfuls and my mom is probably marathon praying the rosary. I guess the age of the child is not so relevant when it comes to illness.

Well, off to beauty rest now so that I can face the pre-op with the best foot forward!

Good luck Heartdesires, you got this!

Hi Heart - I was diagnosed with ~6cm DCIS May 2017 (47yo - hx normal mammos but dense breasts- sister passed of Uterine CA) High Grade with comedo necrosis in my left breast and at the time of initial diagnosis what was thought to be lobular neoplasia in my right. I decided and quickly for me that I wanted a double MX. That part of the journey was an easier decision. I had my double MX June 1st with a SNB on left. I am going through reconstruction now. (tissue expanders in place and had a final fill a few weeks ago, but I think lefty has sprung a leak...because it is shrinking. BUT seriously that does not even phase me - cancer does - but not a leaky TE) What final pathology found was a microinvasion of IDC on my right...seriously surprised everyone (docs) and pure DCIS on left with clear node.

The unfortunate thing about it is that since I was biopsied as lob neoplasia, there was no SNB done on my right and that is where the IDC was found. They did not want to give me Tamoxifen or Chemo because it was not recommended by current guidelines and tumor board decided risk vs benefit was waaaayyyyyy to small. The IDC was ER+PR+ and HER2-. Heart, I freak and fall down the cancer hole (what I call it) let's see.....well at least once a week still and hell even most nights I lay there and think "wth - Did the IDC spread and I just won't know it for another 5yrs or so when it gets big enough to see on scans?" or " Did the pathologists read my DCIS wrong and the SN wrong and it is spreading as I lay here??" God it is a mess up there in my head- I am trying my best to move forward and thank GOD I put a good game face on. I can distract myself for most of the daylight hours. It is a crazy journey....but just know there is someone in Cali sending prayers and well wishes to all the BC survivors out there....if I can help in anyway please reach out.

LeapFrog - Please FIght! Fight! FIght! Sending you prayers and strength and peace......

I think I have finally come to a plateau where I'm not so scared...my fear has been depleted or maybe exhausted is the more accurate term. While I'm sure the reinforcement fear is standing nearby, I will enjoy this temporary calm until the surgery Monday morning.

I'm wondering how long my 4 drains will be in place, how leaky of a person I am. I was told to try not to move my arms/fingers as that would promote drainage but that I would need to start exercising the arm. So it will be interesting to see how I not move but exercise!

I'm not doing any reconstruction during the mastectomy, if any it will be done well after the mastectomy. I guess that is one thing about being closer to being flat chested. I wouldn't be missing much afterwards. When the plastic surgeon mentioned nipple tattooing, I have to say I was rather amazed with what they can do now days.

I don't know where to put my question so I'm sorry if this is the wrong place ...

In March my right breast was very large and swollen with a very large and painful lump. I got into see my doctor the same day she sent me over to the breast Center they did a 3D mammogram and an ultrasound that same day. They told me that they did not see anything and it was probably mastitis even though I never had children and I was obviously not breast-feeding. I was sent home with an anabiotic that I finished after 10 days while my breast was still swollen still had a massive lump and still hurt. I called and let them know they prescribed me a different anabiotic and after seven days that I went back to see my doctor. She sent me back to the breast Center where they did another ultrasound and still said they did not see anything. However this time my dr told the radiologist that she felt something in my lymph node in my armpit. They still did not see anything on the ultrasound but decided to do a biopsy. My biopsy came back clean with no signs of cancerous or precancerous cells. I went back for a follow Up with my doctor if you likes later because I was continuously still having pain with the lamps they did another ultrasound where they still found nothing. Then two days later I found bleeding on my bra. It was a Saturday but I called my doctor that day and left a message they called me back early Monday morning and told me to come in. I went in they did another ultrasound and still did not find anything let me know that I could get a MRI or go get a ductogram. At this time I chose to do the MRI. The MRI showed that there was something so I had a choice rather to get the MRI biopsy or go to a surgeon for a second opinion. I went to see a surgeon for a second opinion. she recommended that I do get the MRI biopsy. I got the MRI biopsy this showed hyperplasia cells but not atypical hyperplasia which is good. the next step was to get a ductilegram. I did the ductile gram which showed there was something there but the radiologist said it was a very small and wouldn't be able to get a good biopsy of it. She said since it's very small and it's not showing up on any other imaging they have took that I probably could wait a year and do a MRI in a year to see if it has grown. the surgeon wants me to do exploratory nipple surgery to see what is in there. the surgery does not sound pleasant and I am wondering if anyone has been through this process before? My thought is I have have already been through many ultrasounds a few mammograms and two MRIs with two biopsies and nothing was found I still have no answers and and wondering is it worth going through the surgery right now. Or should I wait for the bleeding to come back or for it to get bigger ? I know that sounds dumb but both radiologist told me they think it's nothing and that I can wait. Also with everything coming back noncancerous, nonpre-cancerous and non atypical I'm wondering if the surgery is necessary????

Please give me guidance?

Thank you!

Thank you very kindly Sitti for your well wishes and I certainly hope I will be as lucky as you in getting the drains out sooner rather than later - I will definitely keep my community updated!

Cookie511, I don't have enough experience to give good advice but one thing I noticed is that larger teaching medical centers seem to have more experienced doctors and equipment which can locate "hard to locate points". It doesn't sound like you went to a small regional center but if there is a larger teaching facility near you, I would recommend you make an appointment to get their opinion as well. Not knowing is very rough but hang in there!

A surgery which wasn't a surgery...

The reason why I advocate for a larger teaching facility is that currently I'm at a small regional breast center/hospital. As I arrived at the hospital this morning for my mastectomy, I received a call that the surgery is canceled because they are short of one surgical nurse. To say that I was shocked would be a profound understatement. There have been warning signs all along but due to other physicians' recommendations that this breast surgeon is excellent and ease of commute, insurance coverage we persisted.

The breast surgeon's nurse didn't realize that my pathology report was available even though it was done at their own hospital, the surgeon after we saw her a week later was somehow surprised that my DCIS was 8cm (at my first visit she said due to its large size, it will have to be a mastectomy) and referred me to radiation oncologist. MRI was not read within 24 hrs as we were told and it was only after a number of phone calls that it was finally read 3 days later because they were also short staffed (the radiology group is based out of Georgia and we are in California), and the ultrasound guided biopsy missed all 4 lymph nodes even though it was performed by a very experienced breast imager we were told. Then today, this. So for all that angst of the past month and half, still no resolution.

We do have an appointment at UCLA tomorrow even though the insurance does not cover UCLA. But it seems like it would be madness to continue with our local hospital. The local hospital called 30 minutes ago to tell me that the surgery has been rescheduled to this Friday.

Each provider we have dealt with have been kind and supposedly competent but put them altogether and the effect seems to have a circus atmosphere... has anyone experienced something like this?

I'm just clinging to hope that the pathologist knew what she was doing when she looked at the slides. I better ask for 2nd opinion.

This is so unbelievable that I'm actually chuckling inside. This can't be happening in real life and that it is a comedy episode out of some TV show.

Peacetoall... you sound like me. High grade DCIS in lefty. Double mastectomy March 31 of this of this year. Direct implants at same time, with fat grafting approaching on sept 20.

Day time is ok. Nighttime is awful. My doc prescribed ambien for me, but I can honestly say that it doesn't work some nights. I feel my whole body tense when nighttime approaches. The "what ifs" are debilitating. The only thing that work should is xanax, and for obvious reasons I can't Be on that med for a lifetime. Talking with a therapist is a trial and tribulation in and of itself.

Sigh. I hope the old saying is true. Time heals all wounds? I'm not so sure, but yet trying to train my brain to stay positive.

Xoxo to all my sisters in this boat. We want off NO

MT... she was great, but my insurance does not cover. The therapist sent me a bill for $550 for one ONE hour session. I just can't continue, at that rate.

Rrobin, Holy Cow! $550 for ONE hour? that's incredible. my mind reels. No wonder you can't continue. Sorry.

Thank you very much for thinking about me Sitti, yes I cancelled the rescheduled surgery at the local hospital and will proceed with UCLA surgery this coming Friday 8/25. The waiting can be harsh because my mind wonders off quite a bit. Yesterday I made the mistake of staying home thinking that I would get caught up with at least some of the household chores but frankly it only depressed me. So I think for the next few days, I will just get out there and connect with people. I did sign up for a local cancer support group and I will be attending their orientation on Wednesday. Then on Thursday, my husband and I will be leaving for UCLA as the sentinel node marking will be done the day before surgery.

Sitti, was radiation recommended for you at all? Do you remember what measure of a clean margin you were able to obtain? I can't remember now if 3cm+ is the goal. Given that the DCIS is almost right up against my chest wall, it appears likely that radiation will be recommended for me if nothing else is found but I'm still holding out hope that the affected area is not as big as shadowed in the studies. Even though I think I only heard about it being bigger than imaging, not smaller post surgery finding.

I also think that 2mm is the current goal for margins.

Hello, I'm 6 days out from bilateral mastectomy with sentinel node biopsy and I received my pathology report yesterday. My right side was not a benign fibroadenoma after all, it was 1.4cm DCIS high grade. Left side's DCIS is 7.1cm with microinvasion measuring 0.7mm. The lymph nodes are clear. I'm still waiting the "marker" results and I don't know if anything else was ordered other than the usual estrogen and progesterone receptors. I have great faith in the surgeon, so I believe she ordered what needed to be ordered. I tried really hard not to move my arms/fingers/shoulders unnecessarily and there are periods when I am more compliant than others. Home health nurse who came out admonished me for moving around so much. So I'm trying the princess act but obviously I'm typing up this message here. But afterwards I will be better. Pain and discomfort is minimum but having drains is a drag. I did have a mildly elevated fever for few days following the surgery and the day before the surgery and few hours before surgery, there were some dramatics about my heart involving 6 anesthesiologists and 2 cardiologists - only 2 anesthesiologists were for the actual surgery. Overall everything worked out well and now I can move forward to the next step of getting the drains out and seeing a medical oncologist next Wednesday. Due to the clear margins, it looks like I can avoid radiation therapy.

The wait to get to surgery felt unreal and I think that was the most challenging aspect of my diagnosis. Others have said that the wait time is difficult and that once I have a diagnosis, then it will get better and that is surely true! Thank you for all the support.

HeartDesires, if it is any motivation, the more you move around the more likely your drains will stay with you longer. (i.e. rest = quicker drain removal). You can catch up on any binge-worthy shows and/or great books you've been meaning to read Clear nodes is great news! and LAStar is right, no rads is awesome!