Freaking out about comedo necrosis

First, I would say to step away from Dr. Google. Do you know what type of cancer it is (hormone receptor status, Her2/Neu status) and the grade? I just looked up this term, it really is just relative to the type of cancer cells you have. Necrosis means dead cells- with grade 3, the cells are dividing rapidly. These cells are also very unstable so they die off quickly, and this is also why chemo is very effective on this grade of cancer.

I'm not sure if you have started treatment, or have a treatment plan, but you will probably feel a lot better once you do. At a certain point, you have to let go and put your trust in your doctors. Take a vacation from the cancer - it can be cathartic. Allow yourself to not dwell on it a time- however long that works for you. A couple hours, a couple days.

I was Triple Negative, grade III. I finished chemo last summer and had my BMX 6 weeks later. My pathology showed abundant necrosis. I had IDC, not DCIS. There tends to be a lot of scaremongering with Triple Negative. After reading a bit of the scary stuff, I would back off from it. Once I was ready to emotionally process a little more, I would read another article if it was pertinent. I had take info in snippets.

There are plenty of people freaking out on here, so you aren't alone. But those of us who are a little further in the process have just found our own way of coming to terms and focusing on beating the disease rather than focusing on the what ifs. I'm not always calm- in fact, I'm having a brain CT scan on Tuesday. I had my "what if" time and I am going to hopefully get some peace of mind that it isn't anything. But I'm choosing to live instead of worrying about could bes. You will get to that place where you can too.

Jena

Keep in mind DCIS with necrosis is still less aggressive than IDC. I had it too and it freaked me out. I asked my surgeon about my grade 3 with comedo necrosis and he said the only people who get excited about that is the pathologists. To him, removing it completely is the issue and most of the cure.

I'm not particularly worried about it anymore. Mite seems to me, most cancers have decided if they are going to be nasty be ire they are detected. I had a very late large area if DCIS, grade 3 with necrosis and no IDC. Other people have tiny DCIS and they find IDC. Who knows why. Other people have big IDC tumors and no mets, others go from stage I IDC to getting mets. I really feel a lot cancer has done its thing before we even detect it.

Both my mom and my grandmother never recurred. And my grandmother was stage III.

Easier said than done but try to take it one day at a time and live today. No of us has an guarantees on our life. My 13 year old daughter just made a new friend at school who's mother passed away 2 months ago. We just don't know when our time will come and if it will be from cancer, heart disease or a freak accident.

If you haven't had your surgery yet, you will feel better after having a plan for surgery and rads if you need them. After treatment was done I kind of fell apart for awhile. But now I'm feeling better. Please know we e all been there.

Kkubsky, you are not alone! I was in your shoes a little over a year ago. I not only was a patient in treatment for DCIS, (lumpectomy, partial mastectomy followed by radiation) I had been, and still am for many years an Oncology Certified RN! Talk about knowledge over kill based fear!! DCIS is still being studied so much that even the doctors aren't sure anymore what to expect from it!

You have obviously, like me, gone over your biopsy report and read into each term. In reality, we can't assume by each technical term the possibility of recurrence. I'm guessing that's your major concern, right? A biopsy is equal to the sum of it's many technical parts. Turns out my own biopsy was favorable for no further DCIS even though I read into each word as you may have.

It's not crazy or obsessive, or at least I don't think so, to want to be as informed as we can since no one can tell us what our own future holds. It's our survival instinct at work! But I also found it was not really helpful to spend so much time, and give so much of my attention to what may lie a head of me. In fact it greatly increased my anxiety and I am still on the medicine I had prescribed for me at the time. But this is very common with any diagnosis of cancer! But by the time I was to start radiation, as much as I dreaded it, I did not really put much time and effort into studying up what I didn't know. My specialty is administering chemotherapy to women with far worse diagnoses than mine. But it helped ease my fears to just listen to what my radiation oncologist told me, as well as the wonderful team in radiation, and not dwell on all the technical stuff and possible complications of therapy. I did, in fact, do very well with radiation, not nearly as bad as I thought, and in fact after each early am treatment I went upstairs one flight and worked as the oncology nurse I am!

This Discussion Board was very helpful while I went thru treatment. I especially liked the words of experience that many women who had already gone thru what I was facing offered me. I have not been as generous to return to this site much since then. But I hope I helped you a little.

Best Wishes.

And be kind to yourself, not judgemental!

I know it's scary, but you're doing what you need to do to respond to the diagnosis. I had multifocal grade 3 DCIS with comedo necrosis in my left breast. I'm almost a year out from surgery and doing well.

The reality is that the odds are very much in your favor that you won’t have any invasion. BUT, even if you do, in the VAST majority of cases where a diagnosis of DCIS leads to the finding of an invasive component, it is so small that it really makes no difference in either your treatment or prognosis.

It sounds like you are thinking that if any invasion is found it is an automatic death sentence, when the reality is, it usually doesn’t even change anything at all. The only difference having a small invasive component made for me was the need for a sentinel node biopsy (they wouldn’t have done one if it hadn’t been identified from the stereotactic biopsy). Three years later I am doing just fine.

We are in the same boat right now! I was diagnosed with DCIS on February 12th, 2016. High grade, solid and with comedo necrosis. My surgery (lumpectomy) is on February 25th. I just started pouring over my pathology report this morning, and figured out that the high grade....is the least favorable. Now I'm starting to wonder if I should have asked about a mastectomy, or maybe I'm over reacting. I was doing much better last week, when my surgeon acted like this was no big deal. Now that I've learned more, I'm just getting more and more scared! Can't wait to have this surgery. I want this out of me.

Ativan. Seriously. I've never needed anything like it before, but found it hugely helpful when I found myself freaking out and perseverating and unable to calm myself.

Good question. They are both anti-anxiety meds, but I don't know the differences. I have only tried Ativan and it worked wonders. I will use it going forward for any future procedures, possibly mammos, and any freak-outs that might be waiting for me

how comedo necrosis has a higher chance of being positive for invasive cancer and recurrence.

kkubsky: Yes, there is a higher chance,, but that doesn't mean you will be in that category. And if the lumpectomy is iffy,,, you can still go back and have the mastectomy later on,, but you can't do the reverse.

My DCIS was not discovered until my MX,, and it was also grade 3. Still here!

Xanax/Ativan/Valium,,, all anti-anxiety meds. As ksusan said: in the same family called benzodiazepines. Ask your doctor for some. You are stressed and one of these meds would help you sleep. Deep breaths,,, big hugs from your sisters on this board.

thanks!! Next question..how many of you had the same diagnosis from needle core biopsy as follow up surgical biopsy?

Robin.

yay!!!

Glad to hear it.