I don’t see too many posts on DCIS w/ micro-invasion - which seems right between stage 0 and 1 and more clearly cancer cancer - so I thought I’d open it up to gather some experiences. I was recently diagnosed with microinvasive DCIS (nuclear grade 1, ER PR positive/Her2 neg) after pressing for an ultrasound as I have “extremely dense” breasts. (Have to thank NYT for covering that quite a lot and making me paranoid!) I’d already had 3 mammograms under 40, which were all completely clear, as a dear friend got breast cancer at 38. But I became concerned as I had on and off breast pain and - a year earlier - swollen lymph nodes on my left side (a doc checked these at the time, and thought it was not much to worry about). I was also delayed as my husband had just had a massive surgery for his own GI cancer, and just out of my mind stressed. He’s thankfully on the mend, but now it’s my turn it seems! I have a lumpectomy next week, and have no idea what to expect. First of all, where the incisions will be … the tumor is small (less than a cm) and upper outer quadrant of my left breast. The surgeon’s been surprisingly vague on this so far. I’m also pretty concerned there’s presence in my lymph nodes, though they were only swollen a few weeks a year ago, and they are doing a sentinel biopsy. Furthermore, I’ve read tons of papers of how DCIS is overtreated and, especially after reading about some of your experiences with the hormone therapy, I’m not sure it’s worth all the turmoil! Esp as I still want to try and have children if I can … as soon as we started trying my husband got cancer and now I’m wrapped up in it. It’s a lot of acrobatics.
Any shared experiences with lumpectomy / post-DCIS Mi treatment is much welcome. And if you have any favorite surgeons/oncologists in NYC I’m all ears! As I’m fairly young, not many of my friends have been through this so I’m so grateful to have found you all.
Thanks!
Hi there…it can be confusing…but dcis on its own does not have the ability to spread outside of the duct …so if there microinvsion…if its in the nodes , then that will be invasive cancer …i had some dcis in 2020…but also had a 4mm invasive area …this was stage 2 cells when biopsied after surgery …but thought to be all dcis when i had the core biopsybefore surgery…often treatment olans change after surgery …i was told surgery only even radiotherapy unliky…then it changed to chemo, surgery, biphosphonates and hormone therapy …and that was really hard to hear…but definitely listen to your team and keep an open mind until surgery histology results are in …take care
Two years ago I was diagnosed with low grade DCIS and a small invasive ductal cancer, also low grade. ER/PR+ HER2- so similar to you. I’ve also got dense breasts and had had normal mammograms for several years.
The trouble is DCIS can be a bit sneaky. It doesn’t move out of the duct but occasionally it can go on to become an invasive cancer.
I was told they were overtreating me too. Even though they found the DCIS as microcalcifications, (difficult to see in a dense breast), they said there was also a 1mm invasive and it would have been sucked out in the biopsy …… I wish! It wasn’t, and was actually found to be bigger at 10mm after I had a mastectomy.
They also found another larger area of microcalcifications that turned out to be DCIS again. This had been missed initially which caused me a lot of worry. They cancelled my lumpectomy and I went on to have a mastectomy to get it all out.
My feeling was I didn’t want to risk anything else being missed and with a mastectomy there is less worry about good margins as all the breast is removed. It also meant I wouldn’t need radiotherapy which can have some nasty side affects.
My message here is that whilst it’s very positive that everything is low grade DCIS, it’s still important to get it all out. That’s the reason I chose a mastectomy, but that’s just me of course.
Thanks so much to both of you for sharing! Your stories are so helpful, and I hope you both are doing well after everything. I will definitely have to try and keep an open mind and wait for the post-op pathology … do you typically not need any post-op treatment if you get a mastectomy with these lower stage cancers? I’m sure it’s such a traumatic surgery, but then the side effects of radiation and hormone therapy sound just as awful… what a pickle.
I was also curious about scar placement for upper/outer if y’all had experience - whether it seems better to have a scar along the nipple or right on top of the breast? I’m very pale, so are my nipples, so I’m a paranoid it’d be very noticeable? I guess I’m also worried about a … dent. These are all very superficial concerns, of course, but I feel like we must all share them! My husband didn’t care a lick about all the scarring he got from his surgeries, but it’s markedly different for women.
After my mastectomy, the only further treatment needed was hormone therapy for 5 years. I’ve just switched to Letrozole after 2 years on Tamoxifen. Yearly mammograms on my remaining breast for 5 years too.
I didn’t find the mastectomy traumatic. Recovery was quick, especially as I stayed flat with no reconstruction. Not much pain either. No scar is visible even with low tops so I’m happy. Emotionally it can be hard but I’m just happy it’s all gone!
I had a baseline mammogram at 35 because of fibrocystic breasts and have had mammograms every two years since. However, my luck ran out when I was diagnosed with IDC, stage 2, grade 3, 1.7 cms., triple pos., in 2019. My oncologist commented that they threw everything at it and I might feel like I’m older than I am but I’m alive nearly 5 years later.
Wow from 35. Thank goodness you were proactive ! That’s what I keep reminding myself …
Had the first MRI yesterday, which was …not pleasant, and they found something weird in my right breast as well that has to be biopsied via MRI next week. So a combination of my two favorite procedures! I didn’t even know you could have bilateral issues like this; but it’s also small, so hoping it’s simply another DCIS and nothing too crazy.
Hello. I’m sorry to hear you are going through this journey. I am also on the DCIS low grade train, being 3 weeks post op lumpectomy and waiting for results in a weeks time, after originally having a results appointment booked for today (3rd) which was cancelled as the pathology results aren’t back yet. My DCIS was 1.4cm and they removed 2cm, at a 7 o’clock position of my right breast. I had very little pain afterwards but nerve pain and numbness were my best friends since surgery day. It eased a little every day and is now contained within the nipple which is much more manageable.
I hope you will breeze through your journey as I seem to be doing so far. Best wishes to you for your progress through your treatment and recovery. We are all here to help support you rant, rave, and cry whenever you need to. Our treatment availability may be differ as I’m in the UK which is nhs dependant.
God bless x
Hoping you have a speedy recovery ! It’s good to hear that it doesn’t sound too bad… I’ll have to get a lumpectomy on both breasts now, so I’m thinking at least they will be symmetrical lol.
Do you know if you’ll have radiation or hormone therapy yet?
Hi @fuwafuwa24 im not at the stage where further treatment has been discussed. radiation was discussed as a possibility if everything they expect comes to fruition. However our bodies can throw a curve ball, as a genetics major I’m all to aware what can happen at the basic level. So I’m now waiting for the results and waiting to see if I need a catcher mitt, or a bat!! Either way I shall ride the train and see which station I land at. Today has been a rough day for me. The boob is less swollen today and I can finally see the area that was removed and it has upset me more than I imagined. I thought I was ok with all this. I have past medical knowledge ( ex nurse) and with my understanding of the genetics behind it all I felt empowered that I’ve got this. Today saw doubt and fear creeping in and I know this is completely normal and it’s just one of those days and I’ll be fine again tomorrow, but for today the word cancer has floored me. Anyway enough of my self pity party. God bless us all xxx
It’s bound to be upsetting! But with such a small excision I bet you’ll heal just fine.
I found this article really helpful, and the patient was generous enough to document her surgery and radiation with photos. https://columbiasurgery.org/breast/photo-diary-breast-cancer-treatment-journey
To see the breast morph and do all kinds of funny things through post op and radiation before it heals and looks perfectly fine - that was really really helpful to me, at least in my pre-op spiraling online haha… anyways I hope you feel better soon!! XO
Hi everyone,
Just wanted to update that a different pathologist has now found my DCIS to not be microinvasive, and so would not require removal of the sentinel lymph node. Has anyone else had different pathologist come to different conclusions? It seems odd to me as they’re looking at the same slides! I’m going to show it to one more doc this week and see what they think. If it’s truly pure DCIS, I don’t want to go through the possible side effects associated with lymphadenectomy…
I have had dcis on both breasts …no invasive at the time…my cancer hospital protocol is to always take the sentinol node at the same time as WLE or mastectomy …i had a dye put thru my nipple just before surgery…to make it eadier for surgeon to find the nodes …3 removed first time…and 2 second time
