DCIS ER-/PR- ??

cailindearg

I posted here last week... 

I'm new here and was diagnosed May 21st with dcis in situ grade 3, I had a lumpectomy on May 11th but there were no clear margins. It said no "invasive carcinoma seen"

I have decided to have a double mastectomy.  I'm 43 have 4 kids ranging in ages from 10 to 3yrs. I have no history in my family. They can't fit me in for the double mactectomy until Jul 12th. (now Jul 3rd)

Just found out that I'm ER-, PR- and my doc is glad I decided to go for the BMX, she said she would be concerned if I wasn't ...wondering those of you with ER-, PR- what you're story is ???

Of course hoping after the BMX, I will be done...

BLinthedesert

Hi Cailindearg ... ER-/PR- here.  1.0cm Grade 2 apocrine dcis, 49 years old.  I decided to go with lumpectomy and radiation.  There is evidence to suggest that ER-/PR- (especially grade 3) is associated with multifocal disease (more than one quadrant), and since hormone therapy isn't useful, it does remove that "added" therapy to the mix.

Good luck with your surgery.  There is a lot to be said for both being done and not having all the incessent follow-up  

Dooley45

Hi Cailindearg..I am also ER-PR-, 1.5cm Stage 0,Grade 3. I decided for UMX ( primarily because of comedo necrosis in the cancer ). I chose only a unilateral mastectomy since the cancer was only in the one duct. I am 6 weeks out from surgery and am happy with my decision. I just felt better having theaffected breat gone versus just the lumpectomy.

Good luck to you. We all know how hard the waiting is.

P.S. I am also in the Sacramento area ( Placervillle actualy)

cailindearg

Thanks ladies !!

Dooley45, hi neighbor

CandDsMom

Hi!

I posted on your other thread.  I am sorry you have to be here too. (I think it is on my signature below but I had multifocal/multicentric DCIS (in multiple spots in multiple quadrants of the breast) ER/PR (-) grade 2-3 cribriform + comedonecrosis, turned 35 during workup for diagnosis).

Anyway, re the BMX, I had one with R sentinal node Bx over 2 years ago, and I am still good with my decision (it was the right one for me personally). That being said, it isn't the easiest thing in the world to do, and even 27 months out from diagnosis with a great reconstruction I still feel the ramifications of it.  

It definitely is better than it was at first, of course, like many women here I went through the fear of diagnosis, the agonizing wait until mastectomy, then the grief that comes alternately for what I lost (my breasts and the sense that if I didn't betray my body it wouldn't betray me, the innocence of life before breast cancer), and the physical loss, the sexual loss, the grief at "sacrificing" a healthy breast (although my final path did show some early columnar cell changes which are actually thought to be one of the first steps on the path to DCIS/IDC).  My breast surgeon thought it was way overkill to take the prophylactic breast, my oncologist said it was my choice, my OB GYN said "there is data and there is life, I think you should do it".  However, I knew immediately what my personal comfort level was, given my age, the age of my children (nearly 3 and 9 months), my family history, etc.  

I remember clearly being in my infant son's room the night before BMX, rocking him to sleep while his hand rested between my breasts and knowing that I would never have that sensation again, of each individual finger laying against me.  There is feeling now (pressure, some temperature, in small pie wedge shaped areas some more "fine touch" sensation), and my body did "re-wire" itself for the new normal eventually.  For months after my BMX I felt like I was wearing a "boob vest" of foreign things hanging off me and I was numb to my collarbones and behind my arms and even shoulder blades which was frankly an awful feeling.  I also had post op complications, severe ones requiring 4 additional surgeries over the next 11 month period.  I tell you this not to scare you, but more to reassure you that, with time (and the right MD) it all got better.  I knew from these boards to expect the strange sensations so it wasn't as shocking as it might have been. 

I definitely recommend taking some "before" pics for your own personal use - I have only looked at them a handful of times post op but am so glad to have them.  Also, strongly consider asking your BS and PS about post-BMX physical therapy. I couldn't lift either arm to even shoulder height for several months afterwards and PT helped with that immensely.  I got a handout from the BS on post-MX exercised but I was so overwhelmed with everything that it was so much better (for me at least) to go see the physical therapist in person to get specialized help.  

Also, if you are getting any nodes taken consider educating yourself further on lymphedema. I only had 3 taken but am one of the 5-15% who have LE post SNB.  It is mild, but still annoying and sometimes painful and I have to take precautions with my arm.  My BS poo-pooed the notion that I would even have a chance of LE post SNB, but here I am.

I think the biggest lesson I learned through this whole thing is that you really need a physician who will advocate for you BUT you have to your own biggest advocate.  Don't be afraid to speak up, to ask for a second opinion.  It is important to remember that no one is as invested in your outcome as you are.

 Best wishes to you as you go on this journey. 

Dooley45

Hi Cailindearg, scarey reading all the info isn't it?

 Had my 2 month appt with oncologist yeserday who supported my decision to nix the Tamoxifen - proved to be preventative in ER+ but unsure for ER-.Asked about Her2 - they don't do that for DCIS nor do they do BRCA testing since my immediate family did not have BC ( maternal g'mother at age 50 does not qualify ). Luckily for me I had no issues with post op exercises or lymphadema ,although my MX was one sided. I believe you must be pretty active with little ones running around so you're probably in pretty good shape. Think positive - you'll do just fine!

cailindearg

Hi Canddsmom, thanks for sharing, sounds like you had a really tough time and at such a young age... I can't believe the amount of women in their 30's I am hearing about with BC.

I do really like and trust my doctor, and have had a second opinion. I guess the implications of the surgery have not hit me yet.

 Dooly45, you are right scary reading all the info , I'm sort of thinking of the surgery as a boob job, in one way, trying to think positive...if they don't find anything else involved node/invasive, (which they didn't in lumpectomy) I will be opening the champagne....I will not have my post-up now until Jul 16th, which is a 13 day wait for results

PS. Found out today they changed my surgery date to Jul 3rd instead of Jul 12th !!

Dooley45

Hi Cailindearg, nice that your date is moved up! Keep thinking good thoughts and enjoy these hot "spring" days with your family. Hugs to you.

AbbyM

Similar diagnosis - DCIS ER PR negative, multi-focal and, it turns out after surgery pathology was done, multi centric DCIS was throughout breast. Also grade 3 with comedo necrosis and crib inform cells. I do have family history - my sister has breast cancer twelve years ago - but BRCA test was negative for both of us. Decided early on to have mx with lat dorsi reconstruction with direct implants at the same time but wasn't until less than a week before my April surgery that i decided to do other breast prophylactically. Just figured, if I was already having involved, long surgery, I may as well do both and worry less. Also figured I am certainly younger and possibly healthier now than I will ever be so better to do surgery now than if I needed it later. Lastly, thought I'd likely be happier with the appearance if symmetrical.



I'm two months post-surgery now and haven't yet regretted this was the best decision for me because it gives me the best chance of being DONE with breast cancer. The surgery was long and involved but that was mostly because of the lat dorsi recon. Not sure if you're doing recon immediately, if not, I hear recovery is easier. My arms are moving pretty well after a few sessions of physical therapy and I went back to work and yoga last week. Kind of miss having my own breasts and most of my front and back is still numb and scarred (much of this from the lat dorsi recon) but it's not as bad as the rapid fire decision making and the anxious waiting for surgery. I imagine I am not done with mourning my old body.

cailindearg

AbbM, glad to hear everyting turned out well. Thanks for sharing !

I will also do recon but will get TE.

Thanks Dooley, I'm trying to make the most of these Summer days with the kids before surgery...

Ami1026

Hi - another Er-/Pr- DCIS'er here.  My mom died of BC at age 44 (dx at 41), and I had my diagnosis at the ripe old age of 37.  1st mammo one year prior was clean, I found the rather large mass in my rt breast in April of this year. Talk about a complete nervous breakdown - literally had a panic attack so bad I landed in the ER.  Many tests (2 US, 2 MRI, attempted/failed biopsies) later, had a unilateral mastectomy on June 11.  Didn't really have a choice, US said the mass was 4 cm, MRI was suggesting close to 6cm and chose to light up extra stuff to make it look multi-focal and suspicious for invasive cancer. I lucked out (even my onc used that term today) and final path said it was actually only (ha!) 4cm and no multi-focal, no invasive, no multi-centric. Just a big, stupid lump of DCIS.

I do not regret the mx. I am looking forward to moving on from this with no further treatment.  My MO used the word "cured" twice today (today was my first meeting with her.) I realize that's a heavy word to use, and I don't take it lightly.  She asked me if I was willing to undergo the gene testing, since she was very worried that with no history of ANY cancer in my family (zip, zero, nothing) other than me and my Mom both under 50, that maybe I was looking at a gene mutation.  That would up my risk on the remaining breast and ovaries, so good info to have. Of course I'm going to do it.  I have a 4 year old daughter and she needs to know what she's facing.  MO brought up a good point that I hope doesn't get missed too much - gene mutations can affect boys too, so my 11 yr old son needs to know too! (of course neither needs to know now, that is a conversation for much later in their little lives.)

Funny enough, I had been been whining to DH earlier this year about my aging boobs getting droopy, and how maybe I should have a boob job.  Be careful what you wish for!!!  Looks like I'm getting it after all.....I won't complain too much, it's free after all.

cailindearg

Hi Amy,

Glad to hear you are moving on with no further treatment. A boob job also crossed my mind a couple of yrs ago and I was just thinking the same thing, be careful what you wish for !!

By the way, the MRI  I had didn't really show anything on me.

M0m2Three

Hi!   I was diagnosed last fall with ER-/PR- DCIS, 1 cm.   Up until then, I'd followed a fairly regular regimen of exercise, diet, and sleep.  I am raising 3 children.   Last fall, I had a BMX and 2 SNB removed and biopsied.   Afterward, I was told after having genetic testing (BRCA-) and meeting with the oncologist that I only needed to see the surgeon and check my chest wall routinely for any recurrence in the skin around the breast that had the tumor.   So far, I've remained negative.  

 I had DIEP reconstruction, Stage 1, in January of this year with a great result.    

 I too will likely have the MRIs annually, unless something else crops up in the blood work or routine exams.

 Good luck!!

cailindearg

Mom2Three, thanks, glad to hear you're doing great

mamabr

Hi - Another DCIS, triple neg., Grade 3, and Paget's.  Had a BMX/reconstruction and SNB.  2/4 nodes came back with isolated tumor clusters.  Even though, technically, the nodes are considered node negative, doctors are split upon opinion of the ITCs. ITCs could be the result of an invasive component that was not found on pathology or they could be a result of the prior procedures, needle and surgical biopsies.  I have one MO recommending chemo and another recommending no further treatment.  Radiation is not an option and since TN, hormone therapy not an option.  I've had 2 reviews of the pathology and they can't find invasive component, although they did note areas of suspension.  What to do?

lisagwa

Mom2three - did your dr suggest annual MRI's?

I recently had the exchange and will have breast exams every 6 months. No one said anything about MRI's. I figured I would get them every few years because of implants. Does anyone else have info about this?



Before bc, I also thought about breast reduction. In fact,when I found out I had bc, I cancelled my appointment with a general plastic surgeon. I am now more conscious of the things I wish for.

M0m2Three

@Lisagwa,    My doctor suggested 6 month screens with feeling the chest wall.   I had the DIEP surgery.   So far, nothing has changed on the surface of the chest wall/skin.   I think the MRI may be a precaution annually.   I'm supposed to follow up for my annual appointments with my GYN in August and my surgeon in September.   

 I didn't do the implants because I didn't like the idea of anything foreign in my chest after the cancer.   That was bad enough.  

Good luck to you!!   My older sister had implants and has her annual mammogram today.   She wasn't excited with the recommendation that she screen every year because of my cancer, but if it saves lives a mammogram is worth it.

 

browerl

Hi everyone new to the group here.  I was diagnosed with triple negative bc on June 7th, 2012.  I had a clean mamagram in June of last year. I found a lump (on my own) at the end of April this year which of corse came back positive for cancer.  The tumor messured 1.9 cm.  I have chosen to do chemo first (6 rounds) of cytoxan and taxotere every 3 weeks followed by complete removal of both breast, mainly because I am scared of reacurance.  I am scheduled to have my first dose on Tuesday July 17th.  I am as I am sure many of you are or were scared to death and anxious to get it over with.  I was really excited to find this site.  It helps to see that you are not alone and there is people out there that understand what you are going through.  

browerl

I am triple negative and have chose chemo first then total removal of both.  The way it shouds to me is that you really don't want this type to come back.

lisagwa

Mom2Three- You said your sister has implants and gets annual mammos. Did she have bilateral mastectomy? if so, I was told that I wouldn't need mammos anymore since my breasts were gone, just MRIs every few years. Does anyone else get mammos after bilateral mastectomy?

Beesie

Lisa, there are some women who've had mastectomies who get mammos but that's pretty unusual, particularly for those who either had no reconstruction or who've had implant reconstruction.  Usually a breast exam is all that's recommended for these women.  With implant reconstruction, because the implant is placed behind the muscle, the chest wall is in effect pushed up to be right under the skin.  So if a recurrence were to develop either against the chest wall or against the skin, without any breast tissue in the way the recurrence would be noticeable very quickly as a tiny nodule under the skin. That was explained to me by both my breast surgeon and my PS, and that for me was one of the selling points for having implant reconstruction.  It's also why it's important to still do BSEs after a MX.  As for MRIs, for those who have implant reconstruction, they are used mostly to check the integrity of the implant.  

I had a single MX and because I have extremely dense breast tissue, I have annual MRIs. The MRI report notes anything going on in my natural breast; on the reconstruction side, all that's mentioned is that the implant is intact and showing no leaks.  

Mom2three, I've always wondered how they check for chest wall recurrences for those who've had DIEP, TRAM or GAP reconstruction.  How do they "feel the chest wall" when you have the reconstructed breast in front of the chest wall?  I would have thought that either a mammogram or an MRI would be necessary to check the chest wall.

lisagwa

Thx Beesie. I always like hearing your responses. I too ended up choosing implants because I thought it would be easier to detect any possible reoccurrence without many false positives (as from fat grafting which I once considered).



Beesie, if you don't mind me asking, what type of nipple recon did you do if any? As for me, I found 3 reasonable choices and narrowed it down to 2: (1) nipple recon and (2) 3d nipple tattoo. Anyone else?

Beesie

Lisa, I decided to pass on nipple reconstruction.  I figured that there would be no way that it would match my natural nipple and from pictures I've seen, I think the appearance and symmetry is worse if the nipples don't match.  If you are having both nips done, that's different because they can be made to match and carefully placed so that they are symmetrical. But with one natural nipple, I figured I was better off doing nothing.  To be honest, the other reason I passed on the nipple is that I had reconstruction so that I have a "breast" to fill a bra and give me some natural cleavage.  I didn't want to be flat or have to deal with a prosthesis. But adding a nipple - one that wouldn't have any feeling or serve any purpose - seemed like an unnecessary procedure to me. Again, maybe if I was having both sides done I would have seen it differently but for one side, there just didn't seem to be a point. 

lisagwa

Beesie- thx for your candor. You raise some good points. I will ponder this decision as well. I think at the very least I would do 3d tattoos because it sounds easy.

M0m2Three

@Lisagwa, no my older sis hasn't had BC.   She did have breast augmentation though with silicone implants.   Ever since then, she has always been nervous about getting mammograms because she is afraid that the mammo may pop the implant.    After she's seen my experience, she is inclined to do what I did with the DIEP reconstruction if she ever has to go through BC.

 @Beesie,  I can feel the skin over the DIEP area to detect any lumps/bumps.   I can also feel the ribs/chest wall through my DIEP (a size 34B).  Any pea sized changes would be palpable to me.   I did have a double mastectomy without reconstruction for 4 months so I got used to feeling the ribs/cartilage directly under the skin.    The double mastectomy also revealed a prominent breastbone - sternum that I hadn't noticed because of my breast tissue.  

 I do like the idea of 3d tattoos since I only have a little DIEP II - microfat grafting left and don't really care for the headlights.

  Janet