recurrence after DCIS mastectomy

Jelson

Check the Hormonal Therapy Before During and After discussion board, you will find many postings about Arimidex. ER+ DCIS had only been treated with tamoxifen but now there seems to be more use of AIs like arimidex. Sorry for your recurrence. I was aware of the possibility early on because I met up with a woman at a wedding right after I finished radiation who had just had a mastectomy due to her idc following DCIS treated with lumpectomy and radiation 20 years before. She was philosophical about it, appreciative that she had the 20 years without. I suppose low grade/high grade doesn't matter if dcis cells were lurking in your few remaining breast cells? and 20 years seem ample time for even low grade cells to grow. This brings to mind the changes that will probably be coming with regards to treatment of dcis and to me is a warning - that there is much more to making a decision about backing off of aggressive treatment for dcis than simply looking at grade. good luck in your treatment!

Loveroflife

After20, I believe there is an Arimidex thread. Best wishes. I will try to see if I can find the link

Loveroflife

Found it.

https://community.breastcancer.org/forum/78/topics...

marijen

How does a lump come back in reconstructed material? I have IDC stage IIIA, grade 3 and had surgery last week, waiting for path report.

KBeee

All it takes is a cell or 2 to escape and they can grow into a new lump. I had BMX with clear margins and recurred in 2 spots

marijen

The reconstruction material was your own body fat and tissue? Where does the Ki67 number come from - is it on the surgical pathology report?

Well at least you got perfect looking breasts out of the deal. Thanks for posting your pics and replying.

zayb

After20years, my situation is a bit like yours in that I had what is assumed to be a dcis recurrence that didn't follow any of the expected rules. It has only been 5 years for me, but when I had my right side mastectomy 5 years ago scattered, mostly microscopic dcis was found in 3 quadrant. There were a few areas of high grade, very small, with good margins at the skin level. I had triple negative in my other breast (considered successfully treated) and so was not on anti-hormonals. Since I had my other breast removed, no antihomrals were recommended after my second mastectomy. In July I had an ultrasound of my right side for what was aa palpable enlarged node. Long story but this node was not cancerous and was likely a reaction to a summer rash I had in my skin creases around my mastectomy. However, almost immediately under the palpable node was a 3 cm node. Originally given a bi-rads 4 because the radiologist could not tell what was making it so big.

Finally I had the node successfully removed along with a lot of other tissue (total of 21 nodes, plus a swath of tissue from my original mammo site that was 23 cm x 18.5 cm x 1.8 cm. On the anterior portion of this slab was a piece of skin (my old mastectomy scar, 14 cm x 5.5.cm). Cancer was only found in the single node and the node was still well encapsulated even though the cancer spread throughout. The node was virtually the same size as it had been in July even though I had surgery in early October. All the tissue was clear as well as all the other nodes. The only other finding was rare benign breast parenchyma a little farther down from the node.

Although there is a lot of information on this site and others, it has been difficult for me to get a handle on what I am dealing with. I feel so much more comfortable now that I have transferred to Penn, but all the rules about how dcis is suppose to behave don't make sense in this case I don't think. 1. Local recurrence is what to look for after DCIS and it should be easy to find especially if you haven't had reconstruction ---didn't happen in this case. 2. High grade, comedo necrosis is the highest risk (probably true) and is more like to go to the nodes ---- clearly this is not any of the high grade dcis, this doesn't appear to be growing fast at all and is highly er (95%)/PR+ and is her2neg. I am following g the treatment recommendation of my oncologist, who recommended 4 rounds of TC, but there is no way to oncotype or mammoprint a cancer that now has been infiltrated with lymphocytes. Chemo is based on the fact that it made it to a node and I am hoping it is not pointless. I will then move on to anti-hormonals and hope that the combo of surgery, chemo and anti-hormonals does the trick.

Carriek30

Hi. I haven't been on this site in several months. Since April 2015. End of last year I was diagnosed with DCIS Stage 0 grade 3. Had 2 LX and the canadian radiation treatments. Chose to not take Tamoxifin. I'm not a genetic carrier.

Had my 6 month mammogram last week. Rcvd a call that I need to go back next week for a digital mammo. I'm worried. Could the cancer not really be gone even after the LX and radiation?

Could it be something or nothing at all.

Thanks for listening.

Carrie

BunnyFallon

Hi,

I too was 18.5 years out. I had a DB MX, no chemo, or radiation, or tamoxifen

Even tho the margin was just at 1mm. High nuclear grade , comedo. What's very strange is that a reoccurance was found , on my inplant. Focally and superficial to it. I had , had pain in that inplant for years because the first plastic surgeon who put in the permanent ones ( after expanders placed during DB MX) pushed one down into an area that was not expanded. Right below left breast shelf to crease. 

When I would go to see the surgeon, he would inject Cortisone into that areas, and I went about 3 times over the past 18.5 years. Finally I had so much pain, and a lump formed there. I went to Dr. Who sent me for sonogram. The radiologist said it didn't look like cancer to him, and sent me to a plastic surgeon, because it looked like an inplant rupture and capsular con-structure. 

The PS was only interested in rebuilding my breasts, and talked about fat grafting they do now to fill in around the inplant. When I went for pre-op, his nurse could not answer my questions about checking the lump I went there for, so I doned a gown and he came in. I told hi he really hadn't looked at it. He then offered an MRI. I told them I was allergic to the contrast and probably would not show anything without it, anymore then the sonogram had. We moved surgery back, changed hospitals so they could do a biopsy during surgery. The pathology came back DCIS, but no margin, because what he took out was a 2.5 ct. Tumor. Then the PS decided to put new inplants in anyway, and do fat grafting, which includes lipo suction from my stomach and flanks. When I awoke, he had told my sister, and myself they had found  " Atipical " cells. The path reports, and pathologist told me they discussed DCIS during surgery. He just went right past the red lights and purpose for having biopsy . I'm so angry, scared, confused and hurting.

It been 3 weeks and I had an appt. with Breast surgeon, who did a high powered sonogram in her office, then a consultation. We both agree that these have to come out and more tissue needs to be excised to get a margin. She mentioned radiation afterward, if things are all good. That PS was paid $13,000 by my friend to have inplant exchange done, if everything was ok. Now he has that money and I have to deal with another surgery, and all the unknowns. I'm not sure if the inplants protected my chest wall all these years, or iif I get these out and go with nothing, am I better able to monitor , or does it just leave more scar tissue to worry about.

I have an appt. today with the PS. And I plan on asking him why he placed inplants over DCIS pathology. Really not sure what happens after the next surgery yet. The Breast surgeon tells me they will have to push this pectoral muscle back down against the chest wall again after it's been stretched over my inplants for 18.5 years. They will take more tissue, some nodes I assume, and the skin that was stretched by expanders. It seems that the 2-4% recoccurance rate, may be growing. 

Thanks for listening  

KBeee

Carrie, when there is breast tissue remaining, there is always a risk (and sometimes even after BMX). There are lots of things they may call you for, so hopefully there are just some benign calcifications there. Keep us posted

Thistoshallpass

waiting to find out if it has re-occurred this is my story.... just simple DCIS...... DM Dec 3013 nothing else.... no meds, rad or chemo THANK God! and pathology came back with cancer still behind nipple, finally decided to remove nipple Dec 2014 and have some revision for ripples with putting silk inside to cover ripples

CC started in June 2015...my thoughts.... I can live with this and wait until 2016.... I don't want any surgery in 2015 I will get nipple reconstruction in 2016 and deal with CC in both breast BUT left "cancer" breast got infected.... draining from incision site nasty pus 9 months after last surgery to remove nipple.... infection was so bad worried about to go into blood stream had to remove implant and now wait 6 months to start over for expanders then replace that implant and correct right breast from CC which has gotten worse. Felt lumps, I can see enlarged rib and have pains requested an MRI ...Dr finally agreed and now that test says... need further testing they can not rule out re-occurrence so more testing..... terrific just plain terrific.... so wanted everything to be over. scared about the outcome hate mirrors now.... prosthetic boob almost ok with clothes but CC is moving bra out of place. but it is what I KNOW is not there.... what I have to see everyday. HATE it..... oh yeah happy on the surface... live with the motto someone has it so much worse but doesn't change how I feel about me. Others give the replies.... "we don't care about that we are just glad we still have you" while I know they mean it and I truly love them for it and plain just love them anyway..... it does not change this feeling. Other advice/opinions "you don't need them..... don't worry about replacing it" it is gross..... I have one misshaped hard breast and one gone..... find myself crying out of the blue. Hear commercials about cancer programs 1 morning heard 3 in a row about different places..... oh joy try to find happy things to take mind off it but it is always there. My boyfriend and our dog and my 83 yr old Mom (with dementia that I look after while she is still in her own home) I love all of them beyond words & down deep in my soul and have the most amazing friends ever.... although Not many know about this latest situation not sure if sharing more would help. I go to support group to try and help. I am not sure what is around the next corner after next test results. I pray for all of you going through any of this..... God Bless

rosasaguirre

Hi, I'm praying for you.  I had skin sparing double mastectomy in 2/15. Reconstruction in 6/15 and minor revision in 9/15. From June through November, I had been asking everyone from surgeons, plastic and reg to primary to oncology about a tiny bump on lumpectomy scar. Everyone kept saying scar tissue.  Finally I pushed them to ultrasound and was devastated to find out that some cells were left behind right under skin in exact same place. It was still a nodule but went into muscle above implant so I had  to have another tiny surgery on December 22.  Of course everyone was alarmed that it's been there since 8/14 when initial lumpectomy was performed (maybe)  I'm still trying to wrap my ahead around how this happens.  I had to go through PET CT scans, lots of blood work and MRI.  Everything came back ok.  Now for first time I'm looking at chemo, penguin cold caps, etc.... in 2 weeks. A big part of me thinks that its all a scam and I don't want to do it.  I look ok on outside and still volunteer and am out but devastated.  I know time passes and whatever we have to go through, the future will give us options to repair  the visual imperfections.  This is so rare, how does this happen.  I'm praying everyday for wisdom, guidance, anything that directs me to final decision about chemo.  Appt is set and cold caps on their way.  I too am not telling everyone what's going on.  Just some words to say, I'm with you. Our cases sounds similar.  In hindsight, I'm wondering if chemo in 2014 would have avoided this re-occurance.  I pray your isn't that.   

Kroge6

I have a very similar case and I am so scared of recurrence. I have high grade dcis with necrosis. I am a week out of double mastectomy. One margin was positive for dcis. The doctor says they can't take any more out. I am so mad that I have lost my breasts and nipples and I still have cancer. What is your treatment moving forward. The doctors are discussing what to do to move forward.

KBeee

rosagguire, you may just have to do surgery and radiation. Hopefully all further scans come back clear. If it is ER+, HER2-, they may do oncotype to help determine if chemo is needed. You also may need to switch from Tamoxifen to an AI.

Thistoshallpass

My recurrence has been confirmed.... In Sept after left breast was infected lost it and then while waiting on the 6 month recon the right breast got infected in Dec in Sept I was complaining about pain in my sternum and finally in April the Dr that requested the CT to see if we would be able to proceed with recon also ordered a CT for the area with pain. 4/15 those 2 CTs were done and the findings were mis-read Later in April I saw my Oncologist that only went by the written report and sent me to a Orthopedic (yes Orthopedic SMH) first time ever seeing this Dr and he LISTENED and LOOKED at the CT from 4/15/16 called radiologist and had him review it with him while I waited then he came back and told me he would order a bone scan for me and that he would call my oncologist. Went for bone scan 2 days later 4/29/16 and a friend reviewed both CT & Scan I had the results that friday. Then they ordered a PET scan and it is METS to my bone. it is in a dozen places.... sternum, ribs, spine, both hip, pelvic (which is where they did the bone biopsy to confirm type) For those unaware METS is stage 4 and there is no cure (currently) not in the bone anyway. I am triple positive and I am on 3 IV meds for the rest of my life (unless they come up with something else during my days) I have had 3 chemo treatments along with the other meds and the hair is starting to shed ALOT I cut my hair to try to lighten the weight hoping that would help and I have thick hair so it is a lot of SHEDDING. I am having a tough time with the loss of my hair. No boobs and soon no hair. I have a "party" or a gathering of friends to try and surround myself with those that I love when we shave my head 6/29. Two months after KNOWING it was back. I guess I will call this my "summer do". I think it will help with the shock factor when I see people for the 1^st time. It might make it easier on all of us…. them as well as myself. And MAYBE I won't fall apart with everyone there…. Not going to promise though. But I am hoping I will get my strength from them. For those of you that have loss your hair any tips on how to handle. I know humor is the best medicine but tough to find the humor in this. I have an infection in my left ear draining. 1^st round of antibiotics have not helped and thankfully it is not painful. Pain is in the bones. Wishing you all the best and the strength to smile even when you don't want to.

KBeee

thistooshallpass, sucks that you have to deal with this. I lost hair twice due to chemo. First time I word wigs a lot. Second time I just word ball caps. That was more comfortable since it was summer. My work friends(all guys) all shaved heads with me. It made it a lot of fun, and I liked having control

Thistoshallpass

KBeee

That is a tough pill to swallow.... to lose your hair twice I am trying to keep things in perspective and find the positives.....

Save time getting ready

save $ on products, water and electricity to get ready.

BUT I would really rather have my hair....

Have a fantastic day!

LAstar

Thistoshallpass, I am so sorry to hear about your most recent diagnosis. I wish there were better monitoring options for us DCIS folks with BMX. Hugs to you as you move into treatment.

KBeee

I vividly remember the first time I went for a walk with just my ballcap on. I seriously thought people would crash their cars because they'd all be staring. I got home and thought ...well the sidewalk didn't open up and swallow me, so it must be ok. After that, I really did not think twice. I went to all of my kids' events that way, and even led several activities at swim meets and such. No one stared and no one cared. Occasionally someone would let me go in front of them at the grocery store in line. At first I did not like that they probably felt sorry for me. Then I realized that hey...I am getting ahead in line...yay me! It happened a few times, and honestly, I usually really appreciated it, even though I generally felt good all through chemo (I even did a half marathon during chemo...walked some, ran some, but I did it, and it is one of my proudest accomplishments). As far as hair, do what YOU feel comfortable with. At work, I wore something called a Polly's ponytail. That was very comfortable. There also are hats with hair that are comfortable, halo wigs, scarves. I had a friend who always wore scarves. When she went in to her son's class in middle school once, she forgot to stop at the office and sign in. She realized it when she over heard the office staff ask who just walked in. "Oh, that's Mike's mom, you know, the one who always wears the cool scarves". They thought she was wearing them by choice! And.....they thought they were cool!!!!!!!!!!!!!!!!!!

seeknpeace

hello everyone. I have been reading all of our comments with a lump in my throat. When I was dx with DCIS in January, 2004, I was not well treated. My patholgy was high nuc grade 3, comedo subtype with extensive necrosis, 2cm in size. Because of family history and funny looking places thruout the breasts, as well as prev lumpectomies, a bilat mast was preformed and a tram flap. On the first visit to my oncologist her nurse said to me "listen honey, you do not have cancer, this is only dcis". I came out of my chair and reminded her that the "c" was for carcinoma, and asked her to leave and she was never allowed back in my rooms. My thing WAY back then was microinvasion and the extreme aggresive nature of my cancer and I was treated like crap across the board for that and for questioning it. I did have a snb and four nodes removed with no invasion seen. After the fact I found a lot more breast cancer in my fam, including that my paternal grandfather died from it as did his sister. In 2015 my then 41 yr old daughter lost both her breasts to cancer. Our family is rife with this monster. Mom, aunts and my maternal grandmother and her mother died from it. So, moving on here, I found a fairly large, significant lump under my left arm close to the breast area. It was more tender Sunday and still is tender. We all know in later stages is when it is tender. And it is the size of a quarter, round. Fixed, does not move. So I am afraid. Reading of all that you all are and have gone thru, I realize how little has ever been known about DCIS. Especially high nuc grade. When my daughter was dx I went with her to see the oncand when she told my daughter she would only need to come back annually, I said so hers is not like mine? And she iced me out as in, this is not about you. Gawd. Never thought it was. And now I will not go back to her, ever. To me it was not rocket science regarding to potential of microinvasion with core needle biopsy also. I am not thinking that is my case after 13 years, i do not know what to think.

KBeee

Definitely get the lumpbiopsied

ehall

Hi ladies--its been a while. I was diagnosed at age 44 with DCIS multifocial in 2007. E+/P+ lymph nodes clean. Chose bilateral mast with lat reconstruction to never face monster again and get best cosmetic outcome.

Fast forward to 2017--March check up...everything clear. July (4 months later) pain in arm....breast care surg (same from 2007 confirms lump about 4 cm via ultrasound). Biopsy, MRI, and CT Scan confirm the same. Still E+ and P+ and now HER2 positive. Suspious activity in soft tissue chest wall and pec muscle. Started chemo--Herchphin and Prejesta plus Taxiere and Carbo on Thursday. Every 21 days for 6 months. Then review tumor for surg excision. Followed by radiation. Staged from 11B to IV...very confusing.

Traveled to MD Anderson for second opinion print to starting chemo. All confirmed GA treatment protocol for chemo but split on surgery. GA dr believe excision but MD Anderson drs recommend total removal of reconstruction. Clearly total removal of reconstruction is complicates options when you add in radiation and prior lat flap. Could opt for DIEP but that's a HUGE surgery.

It goes without saying...I chose life over cosmetic outcomes. But also know that that this field is fast moving and there may be options I'm overlooking. Thoughts orinsights?

Joycesches00

well I have read so many of these recurrence situations and Now I am one also. I.n 1998 after Dr found lump had a Lumpectomy and Rad. Thought I was good but in Dec 2011 found 3 area and DC IS I had a Masectomy on left breast using back muscle and implant. Thought this was all over with. Had Reg Mamogam only on rt breast and saw my new Dr (my old Dr retired) she stood back and never came over to examine she just said I saw your results already and your good to go. 2 weeks ago in April 2018 I feel a lump in Left breast of Masectomy. I say to my self what the he'll is this. I see jtje Doctor and she does not know what it is but assumes scar tissue or fatty lump. She goes in the next week and removes the lump. Lab results say it is a small Invasive cancer under 1cm. I asked now what . She says maybe she goes in to take more around the area, does some bone density tests, because the area under my breasts holding my braline bothers me, then but me on Aromadix or what ever it's called. They say they can not Radiate as I had that in 1999 with lumpectomy. I am getting a second opinion in 2 days. I am very upset this time especially I am part of that 2_3 percent it recures in. I feel I cannot control this beast!!

Can someone of you ladies reply how you. Are doing now it would help me

B

Joycesches00

what is the latest on your statist in Apr 2018

I hope you are doing well

Joycesches00

so how are you doing now. I hope your Cancer is in your past now