Diagnosed w/DCIS yesterday

robyn- LOL!  I think that is why I always have female doctors.  I think, if nothing else, maybe they can empathize with how it feels.  I still remember a woman posting that she had been sent home post MX with NO pain meds and wondered if this was normal.  (Oh course, 50 women posted HELL NO!!!)  He told her she could just take Tylenol.  I told her to ask him how he would feel to have his penis sliced down the middle, all the tissue removed, sewed back up and sent home the next day.  Do you think he would need pain meds?  Unbelievable!  I swear sometimes the treatment of this disease feels like we're still in the dark ages.  Anyway, excuse my rant.  I think I'm a little crabby today.

So sorry to hear the latest news.  This has been an unbelievable roller coaster for you.  Keep hanging in there - did the Dr give you any info as to follow up re: treatment options?

Robynkk--I am so sad to read your post--such devastating news for you and your husband.  I hope you get all your questions answered.  There is a forum on this website for men.  Your husband sounds like a very loving, supportive guy. 

Hi Robynkk,

I have just read your entire story since the beginning. I was hoping, as I was reading, that the results were DCIS or better. I'm sorry. But it sounds like you're in the "fight mode" and that's a good thing! We've all had to be.

My ordeal was a year ago and it's hard to believe that I went through it all. It all kind of feels like  a dream. I see you're a teacher. I am too. I decided last fall to continue to teach. I felt like I needed to keep my mind occupied. It really helped! I can remember writing on the board and thinking: I have breast cancer!  It took a while for it to really soak in.  I had my biopsy on the first day of classes! It was a wild ride to continue to teach, but glad I did.

You have my prayers. Keep us posted. We have all been there and we care and can feel everything you're going through.

HI Robyn,

I am sorry to hear your news.  You sound like a very strong woman and we are all here for you.  Everyone has their moments to break down and then recover.  Your husband can check out the support groups that are available.   You are in my thoughts.  Let us know how things are going.

dcchef 

I am so sorry that your diagnosis was more than what you expected.  The year after I was diagnosed, I listened to one of Living Beyond Breast Cancer's teleconferences, and the expert on DCIS from Sloan Kettering was discussing that he recommends sending initial pathology off to several different labs, as they had done a random study on that issue, and had had several different opinions on the same slides, depending on which lab they had been sent to. They would go with the consensus before starting treatment. As Beesie stated, the problem lies in that some of those cells look so much alike, it can make it easier for a misdiagnosis.  My onc wants all ADH surgically biopsied as he says that they find invasive cells hidden in those specimens frequently.

I know at this point you are just reeling from information overload.  Just take things one day at a time and believe me when I say that it does get better once you have your final treatment plan.

In regards to your husband, our co-survivors need some support and understanding too.  Komen has a forum on their message boards called "Family, Friends, and Caregivers".  It is under the "Newcomers" section. Not sure if he still posts, but there is a co-survivor whose signature is Barry that I have come to adore.  He has been great about connecting with some of the husbands of the newly diagnosed.  I think he generally posts under his thread "World Turned Upside Down", or something like that.  Its been a while since I have chatted with him.  My husband is one who would rather chew off his own foot than reach out for support, so I was always disappointed that he would not take advantage of chatting with some of the guys on that forum.  There is also an advocacy group called menagainstbreastcancer.org.

You and your family are in my prayers.

Robyn- The amount of time off you will need varies from person to person.  A lot of it has to do with the type of job you have and also your own pain thresh hold.  Your BS will give you a prescription for pain meds and you shouldn't drive as long as you are taking them.  I found I could pretty much get back to my normal schedule within 4 weeks, though.

There are some good threads on here about preparing for your mastectomy.  One is called "Shopping/packing/to-do list for surgery + recovery" and the other is "Pre and post mastectomy tips".  They both have some great advice and tips that make things a little easier for you.  Not sure if this one is on there but ask your BS if you can get your prescriptions filled ahead of time.  It will be one less thing for your husband to do when you come back from the hospital.  Also, if you start hydrating a LOT with either water, gatorade, vitamin water, etc about a week before surgery and continue when you get home it will help you recover faster from the anesthesia which will make you feel so much better.  If you have any questions feel free to PM me any time. 

Robyn, I'm sorry to hear about your pathology report from the excisional biopsy.  It sounds as though your situation is very similar to mine.  I had only ADH show up in my stereotactic biopsy and then I had ADH, DCIS and a microinvasion of IDC all turn up in my excisional biopsy.  Not a very pleasant surprise, I know! 

Although I appreciate that your doctor doesn't know how much IDC you have and can't say whether or not you'll need chemo until after your next surgery, he should know how much DCIS and IDC was in the excisional biopsy sample.  Do you have that information?  If most of the breast tissue had DCIS with only a little bit of IDC, then based on what my surgeon told me when I was going through this, the odds are quite good that not much more IDC will be found, if any at all.  On the other hand, if the excisional biopsy sample showed more IDC than DCIS, and particularly if the IDC was near the margins, then it's impossible to know how much more might be found. 

And that leads to another question.  Did you have clean margins after the excisional biopsy?  Or if not, was there just one or two dirty margins or many?  After my excisional biopsy, I had DCIS in two separate areas and every margin in both areas had DCIS cells; obviously there was no question that there was more DCIS in my breast.  But the more clean margins you have, the lower the chance that much more cancer (either DCIS or IDC) will be found. 

So although it's impossible to have a complete picture of your final diagnosis after this excisional biospy, there should be more information available to you now that can provide some idea of what may be to come.  I also notice that you are HER2+.  Do you know if this testing was done on the IDC sample?  HER2 status is very important for invasive cancer, but it's not important at all for DCIS (it does not change the treatment for DCIS).  For those who have DCIS and IDC together, the HER2 status might not be the same for both the IDC and DCIS so it's very important that the IDC sample be tested. 

Again, I'm sorry that you got bad news yesterday; hopefully the rest of the news from here is on in is good.

forgive me...but what is ITC?

Robyn,

How are you doing?

I too had those stabbing pains after my lumpectomy.  I agree with Beesie, nerves regenerating.  They had finally stopped and then I had the mast!

HI Robyn,

I'm sorry you've experienced all that.  You got some good responses about the breast pains.

I think your crying and being emotional and googling things, ETC. are all things we've done!!! It's easy to let our imaginations run wild and to cry at the drop of a hat. Waiting for the surgery is some of the hardest time! After your surgery, you will "feel" so much better as far as the anxiety, etc.  I'm thinking that if your BS really thought you NEEDED the surgery sooner than Sept.23, he/she would have told you  that or encouraged you to have it sooner. I remember asking my BS if I could wait until May to have my surgery (when the semester ended). His answer: "Absolutley not!"  (That would have made me be waiting 9 months since DX.) 

All of a sudden, you will be saying...OMGosh, how did the date get here so soon!?