Breast cancer, multicentric DCIS, Please help!

[yousu100]

Two weeks ago, I was diagnosed DCIS based on a mammo guided stereotactic biopsy on my left side. Then the followed MRI test showed suspisious findings on rest part of the breast for possible multifocal multicentric DCIS, birad 4c. Additional biopsy, either ultrasond guided or MRI guided or both(?) are suggested. My questions are:
1. If multifocal multicentric DCIS is confirmed, is mastectocmy the only choise?
2. Does multicentric DCIS and single site DCIS have same prognosis and survival rate?
3. Now I am seeing a surgeon. Some people said you also should see an oncologist.
Is it true? and why? I live in NY state. Can anybody recommend a good breast specialist?
4. With my case, is timing a big issue? Should I have an operation as soon sa possible or I can wait several week or a month to get second opinion and more tests or see other doctors?

Very nervous about all the bad test news puring on me. Your help is most appreciated.

[CCF-RN-JS]

Dear yousu100,  Ductal Carcinoma In Situ (DCIS) refers to an early ductal cancer in which the abnormal cells are confined to the duct.  This diagnosis (DCIS) is based on findings from looking at the cells under the microscope.  Decisions regarding the next step in evaluation would need to take into account specific findings from the pathology as well as viewing the MRI.  At this point a surgeon who specializes in breast disease would be most appropriate to advise.  These specialists are often associated with large medical centers.  The prognosis of DCIS is excellent whether or not it is multicentric. The extent of disease in the breast, however, may alter what surgical options are best.

[ly3]

My breast cancer was stage IIa, multifocal multicentric but was invasive and DCIS.  I had 2 excisions, chemotherapy, and, because of unclear margins, ended up with a mastectomy and immediate tram flap reconstruction.  Three years out, I look and feel great.

My friend had DCIS only, and went for many opinions (surgeon, breast specialists, and two different oncologists).  Within 2 weeks of diagnosis, she had a mastectomy, which all had recommended, and immediate DIEP flap reconstruction.  After surgery when nodes were removed and found clear, she returned to an oncologist, who did not recommend chemotherapy.  She is doing very well, and her prognosis is excellent.

[yousu100]

Thank you so much for the response and share your personal experience. This is certainly a great help. Today I've got ultra sond guided biopsy on different location to confirm the multifocal, multicentric things. Would you please briefly tell me about your immediate breast reconstruction? How had it done? How do you feel after 3 years? Any side effects? I never thought about it but probably the reality I have to face. Thanks again. I wish you all the best!

[ly3]

See my 2004 post in the archives Tram flap vs. tissue expander.  It is a MAJOR operation and takes a long time to recover, but waking up without a breast was not an option for me.  The teamwork of my breast and plastic surgeons are why I look so good, and I marvel at their work every time I look in the mirror.  I was an emotional wreck, and the reconstruction had everything to do with my recovery.  After dreading it for 5 months, and doing chemo first, once I saw it, I finally realized there was a light at the end of the very long tunnel that I seemed to be stuck in.

I had a pedicle tram flap, so I lost a stomach muscle.  It is still weaker on that side, but I'm no athelete, so it doesn't really bother me.  I can do sit-ups.  My navel is off to one side, and that bugs me, but I've yet to do have it fixed (I'm 50 and no one would want to see it no matter where it is!).  I gained 30 lbs from Tamoxifen I think, but so did the breast.  I'm now on Aromasin, and have lost about 1/2 of the weight, and the breast is going down, too.  Most people have a revision to make the other breast the same size, but I never needed one.  Complete recovery was about 6 months, but I was doing pretty well at 2 months post op.  As for feeling, part of my stomach is still numb, and most of the breast is, except the nipple does have some feeling, and contracts when touched or gets cold (not always in sync with the real one).  

Would I do it again--yes.  I wish I hadn't been so upset about it and just trusted my surgeons from the Cleveland Clinic.  Let me know if you have any more questions.  There are some great websites with pictures.  Put in "Tram flap video" and maybe you'll find the one that explains everything.  They are hard to watch at first.  I cried every time I did research for months.

My friend had the Diep flap in South Carolina, so she didn't lose her muscle.  She does still need a revision, but is pleased with her choice.  Take care.

[yousu100]

Hi,
Thank you so much for your input. I am glad to hear that you are satisfied with your TRAMP flap reconstruction. My diagnosis came out today that I have DCIS and an ADH on different spots of the same breast. I was told I have a choise either mastectomy or lumpectomy followed by radiation. My ER/PR receptors are both negative and HEr2 is positive. So I do not benefit from Tamoxifen I guess. I also talked to a plastic surgeon for reconstruction issue.  The TRAMP flap and DIEP flap both looks complicated and scary to me. Why people don't choose silicon gel implement for a smaller surgery? I'm also wondering if your friend had DCIS only, why she ended up doing mastectomy not lumpectomy? Thank you and take good care.

[boninclyde]

We have great ladies here with lots of information but you will also find great ladies and info by going to breastcancer.org and joinng the discussion board there. They  have pictures of women that have had all types of reconstruction and they tell there stories of survival.

[ly3]

All doctors recommended mastectomy for my friend with DCIS because it was probably extensive throughout the breast.    She wanted it off ASAP.  Mastectomy was recommended for me because my margins were not clear.  It was explained to me (and it took a long for me to understand) that what was in the remaining tissue was unknown.  After chemotherapy, I decided to do whatever would most eradicate future recurrances, so I wouldn't have to go through it again.

We both chose our surgeries because we wanted our own tissues.  I wanted treatment to be OVER and did not want to return for fillings and replacement surgeries.  I wanted to wake up with a breast, not wait for one to reinflate.  I have another friend that is still dealing with her implant after 3 years.

[hellierox]

Last year i went to the docs cos i had blood comming out of my nipple he gave me antibiotic but it did not stop so three months later i was in hospital having mamogram (mammogram) nothing showed up i then see the consultent who took blood from my nipple and sent it down thto pathology waited for an hour no cancer he tol me i got paploma it needed to be removed by lifting my nipple and removing the milk ducts went in hosp two weeks later  had it done thourght that was it how wrong could i have been went back for result DCIS **** NO told i needed to have complete masectomyas it was in middle of breastand make get it allout so i opted for immediate reconstruction DIEP went in had it done bril results looks great week in hosp then home went back 2week later for results they found g3 tumour in the rest of the breast tissue i died that day and i havent quite come back..... Ihad chemo after the 3rd one started to get pain in lowerleft side could not breath prperly taken to hosp  iwas in agony hours later it was discoverd i go pulomary embolism (BLOOD CLOT) lower lft lung 10 days in hosp then home after treatment two weeks later in hosp again fluid on the lung drain off haning that done caused pnumathorax (MORE PIPES IN ME) OH AND IN THER SOME WHER I HAD LYMPH NODE OUT didnt have no more chemo it caused clot now i got lump in the reconstructed breast I AM TOATALY DEVISATED

[boninclyde]

You will get through this. I don't quite understand some of your post except I know you are frustrated but you will do what you have to to survive and live. You must.