Diagnosed w/DCIS yesterday

Robyn- There is a thread called "Where are the Skin Sparing Nipple Sparing Procedures Done" where women are posting where they had their NSM's done and who their surgeon was.  If it kind of a new thread so there aren't a lot of postings but someone on there might have used the same surgeons and you could PM them about it.  Otherwise, you can always start a new thread asking about those specific doctors.  I hope you find "the one", too.  I knew within the first 5 minutes when I met my BS that did my NSM that she would be doing my surgery- NSM or not.  Try to research them but follow your gut, too.

Hi there Robynkk,

The new patient phone # at the City of Hope is 1(800) 826-4673.

I loved my oncological breast surgeon! Her name is Laura Kruper. Her number 1 goal is saving your life. She is personable & feels like your talking with a girlfriend. I really like that it is not a teaching facility, only research & cancer care, (& few other disease states). The breast surgeon & plastic surgeon work together all the time so the operation is seamless. Dr. Kruper actually was visibly upset talking to my family after my surgery that she had to take the nipple on one side. A PA told me in confidence that she talked about it for 3 days. Wow- a doctor with feelings. 

As far as the tests go...I redid all mine there. I liked having everything rechecked & the tests did not take long. They even requested the original biopsies from the pathology lab to recheck them & do their own testing. That was reassuring. The path labs are used to second opinions & should mail them for you if you decide to do that, whether City of Hope or Cedars or where ever. I think the most I waited for an appt or test was 5-10 minutes for any of my visits there. 

Also, if you are out of town, they try to coordinate your Dr. appointments & labs on the same day. So if you have an appt. with the BS, then they will also try to have you see the PS on the same day as well as labs. They're amazing about that.

The PS that I am seeing is Dr. Tan. He has an impressive resume, (you can access all Dr.s resumes on the City of Hope website). I liked that he was a microsurgeon, had been a fellow & had also worked in regular cosmetic surgery. I was told he's a perfectionist and I liked that too. My 3 visits with him were good & he did do a beautiful job. He is more on the quiet side & not a smiley kind of guy but he took 2 hours with me for my first appointment & didn't make me feel like I wasting his time. The last appt. with him was just ok but all Dr have off days. There is another senior PS there & it might be worth looking into him as well, although you may have to wait to get into his schedule. You can look him up on the site too. He's the head of the dept. I just want to encourage you to keep at it until you find the right doctor for you & one that you feel comfortable with. Don't settle. You are couple hours from the City of Hope so one thing to think about would be if you do have construction and tissue expanders, there will be "fills" once a week for about 5 weeks. They are really good about telling you that you can space the visits out as far as you want & are comfortable. Also they do genetic testing there & counseling.  

Hope the info helps. Maybe do a Dr. visit at both places & then make your decision. Big hugs. Hummingb1rd

robynkk: I do not know if they would be open to you doing the fills yourself or if they would allow another Dr office to do it. It is absolutely fabulous that Kate33's Dr allowed her to do it at home. I'd definitely check into it. Yes I am pleased so far with the reconstruction results. It is difficult because the tissue expander stage is a strange one. If you look in the picture forum you can see how different the TEs look from the implants. I will have to decide to either try and reconstruct the nipple on one side or have the nipple on the other taken off and be o.k. without the mound. Not sure, but the nipple/skin sparring side looks amazing. You could email the main Plastic Surgury email which you can find on their website and ask if they will let you do fills yourself or with someone else. They are pretty good about getting back to you. If not, just call. It might be worth getting an office appt. at a couple places so you can meet the Dr. yourself and then decide who you feel comfy with. 

Good for you Robyn!  I am so glad you are going the extra mile to find a surgeon you like and are comfortable with.  It will make sure a huge difference in your treatment experience.  For me, it was worth the 4 hours of extra driving each visit.

CElebrate good times, C'mon. Congrats

robyn........so happy for you....thats news worth bannering.  Love n hugs. chrissyb

Hi Robynkk,  Congratulations on the good news!!  I had my routine mammogram on 5/3/10, it showed microcalifications.  After a stereotactic biopsy, I was diagnosed on 5/13/10, had an MRI, then a lumpectomy followed by mammosite HDR treatment which was finished on 6/11/2010.  I remember quite clearly waiting for the MRI results and when it was clear it was a huge relief!!  Good luck with your next step.  Keep us posted on your progress.  Be well.  DCChef

Hi Kate,

I've been reading through this forum. Most ladies have posted that even if the cancer may be on some of the nodes that it can still be treated. I have two young children, so scared right now. Never had any origin of cancer in our family, so this was really unexpected.

Hi Robyn

Im 35 and have Invasive Ductal carcinoma. Further testing revealed that no one else in the body has it. Had MRI also and there was an area beside it with DCIS. I chose to have breast removed, as surgoen did leave it upto me. He pointed out that im young, so it might be better not to take any chances of it coming back. But he said its upto me. The lump wouldhave been big anyways.

Im on day 7 of my masectomy. Can not feel anything on that breast, as in its numb. My arm pit feels a tight and stretchy feeling. Im waiting for pathology results on tumour and 5 sentinel nodes. I had no drain on my masectomy.

I cant go on reconstruction until any further chemo. Im wondering is chemo 100% necessary?

Im thinking id rather take it, im dead nervous of it being anywhere else. I mean they did MRI on breasts, bone scan, chest xrays, abdominal ultrasounds. Why would they not to a CT scan or MRI on the brain area? Im just worried that they have missed out on something.

The whole thing really upsets me at times, im so healthy, a gym aholic, no cancer in family. So why did it happen to me!!!! I have two young kids and there is no way Im going to even begin to think that im not going to be around to see them grow up. On this site I see a number of ladies get it again, so does this mean theres more chance of me getting this again??????

Freaking out!!

Redinrah, since you had invasive ductal carcinoma (IDC), which is a more advanced form of breast cancer than the DCIS which was found along with it, your treatment plan will be based on the IDC.  Whether or not chemo is necessary is based on several factors, your oncotype score being the most important (I think). 

You'd be better off posting on the Stage 1 or IDC boards instead of the DCIS board - women with "pure" DCIS never get chemo, so we're not really able to answer your questions properly.

Sorry you had to join our groups, but welcome. You will find much support here and info too. I was diagnosed with DCIS in Dec 2009 - in several spots in one breast and I am barely a B cup.  The two BC surgeons both recommended mastectomy.   I did opt for immediate reconstruction using a free flap (SIEA, similar to DIEP). The surgery was long, 8 to 10 hrs, but I woke up with a reconstructed breast that looked pretty darn good, even in what  I will call the "rough in" stage.  Two more procedures to go to get it to look great, tattooing for the nipple (mine could not be saved), and then a refinement surgery to make the breast look really great. 

 Please, please, do get second opinons from both a breast cancer surgeon and a plastic surgeon.  If you do an immediate reconst, they will need to work together. There are many teams across the USA that do this. It is worth traveling for what you want and to have docs you are comfortable with. 

I live in Michigan and my local surgeon was telling me my options and I had already done a ton of research on my own before even my first follow-up appt with him.  He recommended mast with reconstr, but only doing implants. When I mentioned the DIEP procedure (and other flaps) he said  "those are long surgeries and require microsurgery".  I asked him if anyone did them in Michigan and HE DID NOT KNOW.  

Well, I did more reseach and found 3 teams in MI that did do them, one had done about 50, one about 150 and one about 10.  I met with one team in MI (the 150) and liked them, but they even seemed green to me.   I quickly got my referrals into MD Anderson in Texas and the Univ of Chicago. Chicago is only 3.5 hrs drive for me and they could see me about one month before Texas.   

 I love the team of docs I have in Chicago...the PS has done hundreds of these tissue flaps and speaks at other universities about the procedures.    

 You will have to do what is right for you, but I didn't want foreign objects in my body and the thought of implants and the potential probs with them was a big no for me.   I did like the DIEP procedure  because it is invasive as far as moving muscle around on your bod.  

 Maybe you can have only a lumpectomy and that will work for you. It was not an option for me.  

 Do your research, you have time. Ask a ton of questions and write them down. I went to all appts with my hubby and a notebook. I did all the talking and note taking, but he was my backup. It is an emotional time and you may miss something.  It is good to have a second head in the room.  

I recommend you at least consider a university medical center. They seem to be up on the latest procedures.   And, they usually have a ton of resources at their fingertips.  

 Best of luck to you and please write back with any questions - many are here to help.