DCIS diagnosis today

Hi laurakay, 

 Sorry you are here with us.  This is the right place for you to be.  Everyone here is so helpful and knowledgeble.  DCIS is not invasive it is In Situ which sorta means in it's original place,  I think.  This is exactly what I had. Mine was grades 2 and 3 and extensive 9 cm but it was all DCIS.  You will worry but you simply won't know until they can take a better look at it.  You can do research on this site or search here for Beesie's posts.  I think she is one of the very kind ladies who shares her knowledge of this disease for all us.  I don't have much to say because I am no expert in anything, I just saw your post and remembered how hard those first few days are.  Hang in there and we will help you through this.  If you have any questions you want to ask feel free.  Sorry about your Mom. 

lisa

It is my opinion that 2 weeks is just too long to be waiting for an appt, when you need info and reassurance regarding your situation.  I was dx'd with DCIS, too, (at Thanksgiving) and even though the nurse told me I had the "good" kind of cancer, to my ears it was still cancer and I still had lots to learn and lots to decide.  I found that in the initial shock of it all, I was unable to access my emotions well, so I turned my energy to doing research.  This website offers the best info I could have hoped for.  The members are candid and helpful. And while not everyone makes the same decisions, you can ask others why they chose to do a lumpectomy vs mastectomy, or implants vs DIEP, etc.  You may make entirely different choices, but at least you can access all the info you  need to make your choices.  It is true, that compared to an invasive cancer condition, it is thought that you have a little more time to think things through, since most of the time DCIS is contained within the ducts and has not travelled.  This is a decent scenario which gives you the most options. Once you are beyond the shock stage (which lasted 3 weeks for me), you can access your heart better and find out what is the best fit for you.  Until then, read and read.  Be patient with yourself and with the various thoughts and moods you'll have. Also, remember that opinions are just that - opinions.  They do not constitute medical advice.  I received conflicting "advice" from my BS and then from her highly opinionated nurse.  I found it confusing initially.  Once I got more info and started to understand the issues at hand, it was easier to sort out what was good fit for me and what was not.  Take your time.  Wishing you well - KC 

Laurakay, Sorry to welcome you to this group but there is lots of great info and support here. My advice is to ask your primary for a prescrip for Xanax or Valium or something to get through a very difficult time of waiting. My BS was quite good about giving some, but you haven't seen one yet. I'm sending good thoughts and best wishes your way. 

Laurakay,

Couldn't read this without responding. I know what you're feeling; I had the exact same fear, confusion (about the seriousness of DCIS), and shock when I first got my DCIS diagnosis. All I could hear was "cancer"; I didn't even find out about the good prognosis until I got home and did my own research; a week later I was able to meet with a surgeon who specialized in DCIS study, and he sat with me for an hour and discussed every detail, every fear, and every fact about this type of BC. You need someone like that. Check with your local chapter of ACS, or if you have a local Komen chapter that's even better--you want to find a surgeon or an oncologist who specializes or has an interest/lots of experience with DCIS, and then have a good long consult with him/her.

I also had grade 3 DCIS. This means it is the most aggressive type of cancer, but the "in situ" factor means that it still did not get out of the ducts and invade your breast; it has stayed confined (thankfully). When grade 3 does invade, it is also aggressive and leads to a poorer prognosis...this is why you (and I, and everyone else with grade 3 DCIS) are very, very lucky to have caught it while "in situ". 

I initially had one biopsy, then a repeat surgery consisting of a wide excision lumpectomy, which came back with bad margins, which indicated the DCIS was multifocal, or in other words, it was located in many ductal areas throughout the breast. My treatment was a mastectomy, which by that time I was very glad to get! I just wanted it all gone--and with the mastectomy, assuming the pathology came back with nothing more than DCIS, I was "cured" and would need no radiation, so I went for it  The result was multifocal areas of DCIS, grade 3, with a clear sentinal node. I thanked God and went on with my life, which has been very, very sweet since then. (8.5 years, two babies since then...been busy!)

So as someone already said, you just have to go through the "shock" phase, but even during it, know that you are going to be fine; this is about the "best" breast cancer to get if you have to get it. Once you get through the shock phase, esp. if you can talk to a surgeon or oncologist who specializes in DCIS, you will see lots of hope. 

Thinking of you and wishing you all the best. 

Laurakay,

Couldn't read this without responding. I sure do understand what you're feeling; I had the exact same fear, confusion (about the seriousness of DCIS), and shock when I first got my DCIS diagnosis. All I could hear was "cancer", also. All I could think was I was going to die, and I'd never even had the children I'd been longing for. I didn't even find out about the "good" prognosis until I got home and did my own research; a week later I was able to meet with a surgeon who specialized in DCIS study, and he sat with me for an hour and discussed every detail, every fear, and every fact about this type of BC. You need someone like that. Check with your local chapter of ACS, or if you have a local Komen chapter that's even better--you want to find a surgeon or an oncologist who specializes or has an interest/lots of experience with DCIS, and then have a good long consult with him/her.

I also had grade 3 DCIS. This means it is the most aggressive type of cancer, but the "in situ" factor means that it still did not get out of the ducts and invade your breast; it has stayed confined (thankfully). When grade 3 does invade, it is also aggressive and leads to a poorer prognosis...this is why you (and I, and everyone else with grade 3 DCIS) are very, very lucky to have caught it while "in situ". 

I initially had one biopsy, then a repeat surgery consisting of a wide excision lumpectomy, which came back with bad margins, which indicated the DCIS was multifocal, or in other words, it was located in many ductal areas throughout the breast. My treatment was a mastectomy, which by that time I was very glad to get! I just wanted it all gone--and with the mastectomy, assuming the pathology came back with nothing more than DCIS, I was "cured" and would need no radiation, so I went for it  The result was multifocal areas of DCIS, grade 3, with a clear sentinal node. I thanked God and went on with my life, which has been very, very sweet since then. (Diagnosis was 8.5 years ago, had two babies since then...been busy!)

So as someone already said, you just have to go through the "shock" phase, but even during it, know that you are going to be fine; this is about the "best" breast cancer to get if you have to get it. Once you get through the shock phase, esp. if you can talk to a surgeon or oncologist who specializes in DCIS, you will see lots of hope. 

Thinking of you and wishing you all the best. Message me if you want to talk more. 

I only recently got core biopsy results with DCIS, so don't have any real experience or expertise to offer.  Only one suggestion.  Two weeks seems like way too much time to have to wait to see a doctor. In my case, I ended up seeing 2 breast surgeons (the second in order to get a second opinion). Do you have a primary care physician who might be able to get you into see another breast surgeon more quickly?  That way, when you do see the surgeon you already have the appointment with, you will have had a chance to talk this through and think about it. Kind of like getting your second opinion first?  I felt immensely better after I talked to both breast surgeons, especially as they both had basically the same recommendations and the same favorable prognosis.  Everyone says that waiting is the hardest and that you feel better after you have your plan in place.  So far, that's been true for me.  I felt the worst waiting (in my case 3 days) to see the first breast surgeon, and since then I've felt more in control. Not sure this feeling will last through surgery (still to come) but it's gotten me through the last few weeks pretty good.  Thinking of you and hoping you get help soon.

Laurakay,

Call the surgeon's office and tell them how stressful this is to wait and ask them to please call you if they have any cancellations.  Being proactive and advocating for myself was one of the hardest lessons I had to learn from this experience.  If you are really stressing and anxious, there is nothing wrong with asking your primary care doctor for a prescription for an anti anxiety med.  I didn't need one but I have several friends that swear it was the only way they got through that early period.  Hugs to you.

I found sleep aids helpful.  It is hard to turn off the brain at night during all this...