Topic: Just diagnosed with extensive DCIS

Hi Day,

I was diagnosed with DCIS grade 3, large tumor (4-5 cm) a few weeks ago and am recovering from a mastectomy (8/25/09) on my left side with a sentinal node biopsy (everything came back negative/ductal only so far). I already have implants (got them 4 years ago and they're fantastic! lol) and my surgeon was able to save my implant so I have something there under my scar.  I am happy to answer any questions that I can for you. I will be home from work (I'm a teacher) for a while longer. I had my f/u appt. today with a different surgeon (mine's on vacation) and she told me that they need to go in and take muscle tissue because the margins close to my chest wall are less than 1 mm. This was a total shock!

Take care!

mocame,

just wondering what type of biopsies you had done.I have DCIS and had a stereotacit biopsy and now am scheduled for excisional biopsy.

Day,

Your situation is similar to mine. I am just home from the hospital having had tissue expanders replaced and implants put in and if you opt for reconstruction after a mastectomy this is something you will become familiar with. This is all a lot to get your head around right now... I remember. You are going to have brain fog for a long while. Take a notepad with you so you can write down everything.

My DCIS was not picked up by mammogram either. It was very extensive and I also developed palpable lumps that were tender to the touch. I had been told for about 10 years that I had fibrosystic breast disease and as a result I was constantly having mammograms and ultrasoounds done. In fact, I just had a mamogram in January and felt the lumps in late February but because of the fibrocystic breast disease thought they were cysts. An MRI showed exactly how extensive my DCIS was and I suggest that you ask for one if your Oncologist or surgeon doesn't suggest it but they probably will. That will help you and your medical team know how much breast tissue is involved before surgery.

I opted to have a double masectomy with reconstruction as I was told that a left side mastectomy was mandatory and I felt more in control of the situation by having risk of reoccurence on the other side removed. However, this is a very personal decision for each woman to make. 

Hang in there. Do your research and talk to the wonderful women on this forum who rescued me from complete breakdown. Beesie has posted wonderful information on here. My thoughts and prayers go out to you that all will turn out well.

Jean

Ok, I have seen the surgical oncologist today. Also, final pathology report came back hormone receptor positive.

He wants an MRI, he said that due to the extent of the cancer (he said over 60% of the breast) he is not sure at this point it is just DCIS. He wants the other breast checked as well. He said, best case scenario,  right mastectomy with IR, worst case scenario, bilateral MX with chemo and (if necessary) radiation, with the reconstruction done in about three months from the MX.

I am supposed ot have the MRI next week, so I will put an update here. 

Sorry, I will post more tomorrow, I am very tired right now and need some time to rest.

thank you for all your support, hugs to all.

Day

Yes, I figured that out. I do have already scheduled the appointment with the PS for Tuesday afternoon. After looking more on it, I think i might lean more towards the DIEP. Anyway, it will all be depending on what the MRI shows. I do have quite a bit of fat on my tummy - I had to go hypo-thyroid and put on some weight before I was given Radioactive Iodine in June, to kill my thyroid, because I was supposed to go with no anti-thyroid medication for a while.

Oh yes and I forgot, the final pathology report showed that my cancer is hormone receptive, so the oncologist said I will have to take Tamoxifen for 5 years.

The waiting is what is the worst thing. I do have a lot of moral support, and it is amazing, in times like these, you discover how much people actually do love you.

Day - I had a situation very similar to yours.  Mammagram and ultra sound were both "normal."  Only I had bleeding from the nipple and a good general surgeon who felt it was cancer and persisted in an MRI - well, that told the story.  It was a fairly large area of DCIS.  I had a bilateral mastectomy, a very personal decision that only you can make.

Let us know how you make out with your other doctor visits and tests.

Hi Day,

I am also 48. Last year at this time, a suspicious mammo started my whirlwind. I had the stereotactic, found DCIS in left breast. Didn't want to mess around so had bilat mastectomy w/ muscle sparing tram. Just had revisions a few days ago and nipple reconstruction. Its been a year and I am in a much happier place now. Feel free to PM me if you have any questions, especially regarding the tram. All my best to you as you proceed! carole

I had the MRI yesterday - so it's the "hurry up and wait" game again until Wednesday or Thursday. I have been seriously considering to have the bilateral even if my left breast shows clear.

I also had the PS appointment a few days ago. The PS said that he is not keen on the TRAM flap or even the DIEP -as they both have the danger of abdominal hernia down the road. He also said that what the mammogram shows has good chances that there will be skin-sparing when the mastectomy will be done, and if I choose the bilateral and the left breast is clean then there will be skin and nipple sparing for it (and the breasts will look more "matched" as well). If nevertheless the MRI (or pathology) will show invasion, and I'll need radiation, then he will go with the dorsal flap - he said in his experience it has the best recovery rate and (unless you're a pro tennis player or swimmer) presents the less discomfort.

So, rightnow, while waiting for the final results, I'm just taking one day at a time. I am blessed with great friends and absolutely priceless SO - and that helps a lot.

rubybuttons, great to know that if there's only DCIS than Tamoxifen might not be required. My endocrinologist was a little worried about that - as my hyperthyroid had thetendency to "leak" the calcium off my bones - I'm on a "special diet" of Vit D and calcium for over an year and a half now.

As soon as i know more, I'll post.

Hugs for all, and thank you for all the support.

Day

FreedomFaith,

I will go with the latissimus dorsi only if I have to go through radiation - as the skin on the mastectomy site would be affected by the radiation and wouldn't be able to be used for expansion. That would be only in the "worst case scenario", i.e., if the cancer is invasive and I have to go through radiation and chemo - that would put the reconstruction at about three months after the mastectomy. You can't have radiation on an existing implant. 

In the "best case scenario" that will be just that - IR with memory gel silicone, not even with expander because I only want the same size cup I have now - C - and the DCIS affected area is far from the skin, so the skin would be spared.

Ok, MRI results are in. The area affected by DCIS in my right breast is bigger than what the mammogram had shown - the oncologist said about 10 cm. There is a suspicious area of about 6 cm in my left breast as well, he wanted to go for an ultrasound and an MRI-assisted biopsy, but I told him that we should just go ahead and do a bi-lateral.

Now the good news: the MRI doesn't show invasion or lymph node involvement (he said though that can only be 100% certified at the mastectomy after the pathlogy). And due to my cancer location, he will be able to do skin, areola and nipple sparing for both breasts (he will only remove the core of the nipple).

The surgery will be sometime mid-October, because the PS needs to order "my new boobs". I'll keep updating as soon as I find out more.

also, I did skin sparing and aerola sparing.. first few days my boobs looked really lumpy because of the expanders.. two weeks out they skin has stretched and I am now about an A cup.. so don't be shocked the first few days.. it wil improve.. I will do fills starting next week..

I did expanders.. they are uncomfortable but doable.. wich surgery are you doing??

Daisy, sunnyhou,

I'm supposed to have bilateral with skin/areola/nipple (except for the very middle of the nipple) sparing and memory-gel silicone. I am only saying what I understood from the PS, that if there is skin-sparing and IR I won't need expanders as I'm going for the same cup size. I guess I'll know more soon, as I'm supposed to have visits with both the surgical oncologist (who will do the mastectomy and SNB) and with the PS.

What is driving me nuts right now is how painful my breasts started being before my periods. They were quite tender before, but in the last three months it's been awful. Or maybe I'm paranoid? lol

Well I got a "preliminary" date set for surgery - 21st of October. "Preliminary" as in they are waiting for the certification from the insurance and also for my new boobs to come in. Doesn't that sound hilarious?

Day,  Please don't worry too much.   It sounds like they think the right DCIS correlates with calcification's on mammo.  Not sure on the left, looks like they found something but MRI sometimes show false positives.  Im surprised they gave you the report without speaking to you more about findings.  The only way to tell for sure if dcis is invasive is pathology report from surgery.  They will look carefully to see if the cancer has invaded surrounding tissue (outside the duct.)  If so then they call it IDC (invasive ductal carcinoma) instead of dcis.  When do you see your doctor?    You are getting bilateral right?  Good luck you can PM me if you need to vent or have any questions.