high nuclear grade DCIS ER/PR- surgery?

I too had DCIS ER/PR -.  My first lumpectomy came back with one close margin.

I had a mastectomy and pathology showed no additional cancer cells were found.  I don't regret it for one minute. Infact, the ER/PR negative status scared me enough for me to have a prophylactic mastectomy on the healthy side 6 months later.  I vacillated on should I/shouldn't I and finally made a decision based on one question . . . . what would upset me more? Having a mastectomy that I may have never needed. Or not having a mastectomy and being diagnosed sometime in the future. Both are 100% unknowns and being a person who likes to make decisions based on facts, this was a toughy for me.  But if I had to choose between the two, I prefered to have an unncessary mastectomy rather than facing another cancer.

I was diagnosed with High Grade Comedo DCIS  ER-/PR - , Her2 +  very large area

I just had my lumpectomy and 3 nodes removed Nov 1st. , and am awaiting my final pathology report (Monday cant come soon enough) I have already seen a dr. for starting of my radiation after i get my final report.

I have to admit I totally broke down during the prep for my partial mastectomy during the wire insertion, one of the nurses stayed with me and helped hold me in place while they took the mammogram to make sure the Dr. could get the correct area. Then the Dr. doing the procedure came out to insure me that I was making the right choice, because all I kept saying was I should have just got a mastectomy.

Honestly, if my reports don't come back clean, I am considering MX as well. I personally don't want to have to keep going through surgeries and my risk is already high. 

But starting off with the least radical procedure was my first option and I trust the information my oncologist gave me. 

I also broke down when the wire was put in....after that 2 mastectomy's......no reconstruction yet and that was last sept.....i am getting used to my chest as it is.l...take care...good luck

Wire insertion with no Lidocaine? Unbelieveable! Any doctor who wanted to do that to me would have to first display his/her willingness to endure it himself or herself.

(Video evidence would be acceptable, as well as on the spot demonstration.) 

The wires are to kind of outline the area for the surgeon for the lumpectomy, The surgeon can't see the DCIS, so the wires are put in prior so they know what area to remove. I was definitely numbed up first, and I did not have to ask they just did it, I can't image the dr. not numbing the area first. I will be having this done again on my other breast and am not concerned about the wire part, I never felt it during my previous procedure. But after reading some of these posts, I will be making sure that the area will be numb first.

It's really great to be able to talk to you gals about something we all share. I have a friend here (yep in Toronto, Canada) who had bc about 7 years ago and her experience was very different than mine. She had chemo and radiation but declined tomox as she was not ER+. She was not treated at the hospital I was (Princess Margaret, top cancer hospital) and I was shocked when her doc told her to take tomox. So in some respects it comes down to the doc you have and in some cases getting second opinions. This same friend has been into all sorts of alternative therapies and had a oncology naturopath (sp?) doctor the whole time. She did well and no recurrence. My friend in CA, indeed, endured painful wire insertion without numbing. Odd because she is particularly forceful as a personality, but it goes to show that facing possible bc we agree to things we might normally question closer.

I didn't have an MRI (yet), I had a mammogram followed by all those magnified mammograms. I was getting worried about all the radiation just from those! Yes the wires are inserted so the surgeon can just cut. I'm currently in "covering the bases" mode. I have requested a consultation with an RO although I am not inclined toward rads as my post op therapy. It seems like overkill in my case. If they had found malignancy I might be thinking differently but they did not. My DCIS seems to be catagorized as such because of the size (4cm) and there was some focal comedonecrosis. Path said Stage 1-2. I think they upgrade you to be on the safe side. My worry with rads all along has been if I need them later on it will closed to me and also what it will do to my skin. I can't even suntan - I burn with fair skin - so I'm sure I'd be a huge blister from rads.  

I'm also seeking a consultation with an MO because I want her/his take on my pathology report. My report doesn't have ER, PR or HER2 noted anywhere on it. My GP said those results probably came after the general path report. Finally, I am requesting an MRI of both breasts just to have a baseline done. I've never had an MRI but they are apparently more accurate than the mammogram. Once I have all this information I'll make my decision and I don't feel rushed. If nothing more dastardly comes back than what I already know and no one give me a compelling logical reason for rads, I am going to have regular mammograms and get checked often. I have already switched to almost all organic diet and am exercising and trying to just get healthy overall.

I agree with Angel when I say Dragonfly, it is overwhelming, yes. Many of us were blind-sided by DCIS because we never found a lump. But we are all vigilant, keeping on top of our conditions and that is a great start.   It's an endless chain of making appointments and trying to keep up with the latest DCIS medical news, isn't it?

Good health to all! 

Hi,

It's such a personal decision! For me, I had no hesitation deciding on double mastectomy. I just didn't want to have to go thru this again with the other boob. I have not had reconstruction because I didn't want to put my body through the stress of a long surgery. To me, healing up from surgery for a month then having chemo made sense. I just wanted to get the 2.0 cm tumor out ASAP! I have been considering having expanders put in so I don't have to wear the prosthesis, but after 3 years now, I'm used to it. Course, sometimes I miss my boobs when I see a cute low cut outfit that I can't wear anymore, but that couldn't be helped - it is what it is. I am not comfortable without my prosthesis, I don't like being outside in public with my flat chest, but some women are ok with it. Just go with your gut feelings and trust your own judgement. Best wishes,

tuckertwo

I had a lumpectomy for my dcis and I am 2/3 of the way done with radiation. I am glad I went with lumpectomy & felt my surgeon & RO are doing a wonderful job.  So far everything has been perfect.  I am just now starting to be concerned about taking tamoxofin for 5 years. 

Dragonfly, you asked if not getting clean margins was a result of our DCIS being grade 3. No, it really depends on the number and location of tumors. In my case, they found 8 tumors in two quadrants of my breast. Each tumor was small but it was the number of tumors that had my doctor put my case before the tumor board. She was very concerned that she didn't get it all with the lumpectomy.

Does anyone else know if their surgeons removed the fascia against the chest wall during the mx? I had my lumpectomy and first mastectomy in "small town Ontario" .  My prophylactic mx and reconstruction were done at Princess Margaret in Toronto. Both surgeons removed the fascia stating that it is a surgeons way of knowing that all breast tissue from against the chest wall has been removed.  

YEAH! to all margins being clear.  And YEAH! to all 3 nodes being clear too!  Great news!

dragonfly55 - you are not alone, even in your feelings that you are alone. Deciding what to do, is a personal decision, but we have all gone through it. The shock, fear, anxiety, pain, frustration, being mad, feeling disappointed, let down by our own bodies. Those are just a few things I have felt.

My personal choice was to open up to every one in my life - co-workers, family, extended family, friends, neighbors, on-line friends, even my oldest son's female friends - I told everyone that I had breast cancer and when my surgery was. The amount of support, prayers, and well wishes I have received from everyone (even friends of the people I spoke with but do not know personally) has been amazing.

I personally wanted to help anyone I could know about breast Cancer from what I was going through. I should have been a LOW risk for this. No family history, I breast fed all 3 of my kids for longer than 3 months each, I eat very healthy, I exercises daily and do yoga. Every one who knows my personal life style was absolutely floored that I could have cancer.

a few people have actually touched me so much with their gestures - 1 aquantance sent me a picture where she got all her hair cut off and donated it to Locks for Love in support of me. 2 others have personally called me just to tell me they scheduled mammo's for them selves because of my talking to them. And another friend brough her teen age daughter to talk to me because I brought it to her attention that the high school in our area doesn't teach these girls anything about breast cancer. 

I can not start rads until mid Dec, my surgery was very extensive, oncologist said he went all the way down to my chest wall then he reconstructed my breast. So with a bra on, both sides look exactly the same, I'm not in a rush for a reduction, I just want to get the rads over with.

oh Dragonfly, I'm sorry for your news.



As far as reconstruction is concerned, everyone has a different feeling. I am off the opinion that this is something every individual needs to research fully --see lots of PSs and examples of work, maybe even talk to people and then make a decision.



I waffled long and hard over what I would do and met with two plastic surgeons during my surgeon shopping phase. Of the plastic surgeons I met with I liked the one who advocated delayed reconstruction so they could be sure all cancer was gone best. I still remember him explaining his philosophy to DH & I--something like "some people think women aren't strong enough to wake up from surgery and look down and not see a breast. I think thats insulting to women & that women are strong enough and that the very best thing I can do for my patients is make sure that they don't have to go back in for more surgery/treatment before I do my reconstruction."



But in the end, I decided if the lumpectomy didn't work I would skip reconstruction. I hated the idea of a numb thingee on my chest. I don't want the risks of DIEP or TRAM. My DH was totally supportive--he likes boobies but he likes mine and didn't want some sham replacement [men are so good with words!!!! ;-) ]


Now you need to do your research and make the decision that is right for you. Take your time. Do all the reading and talking you need to be comfortable. If you don't feel comfortable and ready to decide, Remember the "good" thing about DCIS is that we get the time we need to make decisions. I was diagnosed on November 16 and didn't do my surgery until the following February, nearly 3 months after diagnosis. My team was fine with that.



best wishes!