Need to decide between lumpectomy or mastectomies for DCIS

4caseygirl

Hello everyone-

I am new to this forum and new to breast cancer.  At the end of May I was diagnosed with DCIS in both my breasts.  I have not made a decision on my form of treatment and I am having a very difficult time deciding what will be best for me long term.  My dcis was picked up in my first mammogram, age 39, since then I have turned 40 in July. I have three locations of calcification's that have been biopsied, One in the left breast, dcis, micro-papillary and solid, grade 2-3 with comedonecrosis present, no invasion  present Right breast two spots-dcis cribiform, nuclear grade 2, comedonecrosis absent no invasion present, third spot shows atypia cells-close to chest wall. I have tested negative for the BRCA1 and 2 gene. Family history-paternal aunt diagnosed with 3rd stage ovarian cancer.My head as been spinning, I have met with four surgeons, 3 have suggested bilateral mastectomy, the fourth suggesting I will do well with either mastectomy or lumpectomies.  I am afraid and confused and paralyzed by my fear.  I'm thinking based om my age and grade that maybe the bilatteral mastectomy would be the right thing to do, then there is always the SLB to worry about and the cause of lymphodema, I am very healthy and active and do not want to loose the ability of my arms. Then the idea of reconstruction and what I would need to go through with expanders and what not. I didn't mention before but I just got married in July right in the middle of all of this.  I guess I'm looking for some thoughts on my situation and how others would go about moving forward given my situation and having made difficult decisions of their own when diagnosed with DCIS.  Any thoughts would be greatly appreciated, thank you-

proudtospin

A mastectomy is a huge decision and you need time to wrap your mind around it.  I had 3 lumpies 4 years ago for DCIS, radiation and aromasin.  All was fine but this past summer, some changes and what turned out to be B9 cysts appeared.  I spend 6 weeks trying to wrap my mind around the possibilty of a mastectomy.

It is a very personal decision, one you will want to discuss not only with the docs but your family, no one else will be able to make the decision for you.

Me, if any more problems on mine, I am still working on accepting a mastectomy as the possiblity but will likely give in to it.  Best of luck, listen to your docs...mine are saying next time for sure

Moderators

Hi 4Caseygirl,

In addition to the helpful advice you're sure to receive from the other members here, you may find it helpful to check out the main Breastcancer.org site's page on weighing Mastectomy vs. Lumpectomy to aid you in this decision.

Hope this helps!

--The Mods

SJW1

Hi 4caseygirl,

In 2007, when I was diagnosed with DCIS, I only had one surgeon tell me I needed a mastectomy. Because I thought that was over treatment for a non-invasive cancer that some call a pre-cancer, I got a 2nd opinion and was told a lumpectomy would work for me just as well. 

Because DCIS is non-invasive, you can take your time, months if you like, to carefully weigh your options, talk to the experts and figure out what you would be comfortable with.

One option you didn't mention is taking tamoxifen before having surgery. Dr. Shelley Hwang at UCSF is doing trials with this in the hopes that someday this may replace surgery for some DCIS patients. See: http://www.ucsf.edu/news/2009/03/8165/dcis-not-invasive-breast-cancer-and-might-not-require-surgery

Also there is a new technique available now that some women are opting for instead of reconstruction after a skin and nipple sparing mastectomy or extensive lumpectomy. Suzanne Somers was the first in the US to use her own stem cells to regrow breast tissue. According to another DCIS survivor I know, this is now available to the average woman with good insurance. See: http://www.lef.org/magazine/mag2011/dec2011_Suzanne-Somers-Uses-Stem-Cell-Therapy-Breast-Rejuvenation_01.htm

Because of my experience, I also think it is a good idea to get a 2nd pathology opinion before doing anything drastic. Pathologists miss things and don't agree up to 20 percent of the time. I was told I didn't get good margins after my lumpectomy and they were again recommending a mastectomy. However, this all changed when I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He disagreed with my pathologists and even lowered the grade of my DCIS.

He also calculated my risk of recurrence without radiation, using the Van Nuys Prognostic Index, as only 4 percent. Because you can only use radiation once in the same area, I opted out of it. The small benefit I would get was less for me than the harms. If you opt for a lumpectomy, you will also want to know your own personal risk without radiation, so you will know if it is beneficial to you. 

Although a DCIS diagnosis is devastating, no matter what treatments you choose, you will survive this. In addition to all the standard of care treatments, you can also decrease your odds of a recurrence through various things like diet, exercise, supplements, hormone balance etc.

Please feel free to send me a private message if you have questions. You can also read more about my story at: http://dciswithoutrads.com/

Wishing you all the best no matter what you decide.

Hugs,

Sandie

 

CLC

I think that if you are unsure, you should seriously consider lumpectomy and see what kind of margins they get.  If they don't get good margins, then you go back in, armed with new information.

In my case, I knew pretty strongly that I wanted a mx.  It was not a very difficult decision for me.  I did not want radiation.  I did not want tamoxifen.  I knew that lumpectomy alone would not be risk averse enough for me.  It was straight forward.  But if it hadn't been, then I would have started with the least invasive and worked my way up, as needed.

At any rate, that is something to consider...

This is a very difficult time and I wish you all the best of luck...

Claire

LAstar

Consider getting an MRI to determine the extent if the DCIS in each breast. I read some unpublished research indicating that an MRI can be almost twice as accurate in detecting grade 3 DCIS than mammogram. Out might help your lumpectomy be successful if you go that route.

4caseygirl

Thanks for the feedback, I think my biggest concern is that I have it in both breasts, and in one it is high grade, in the other multifocal, This doubles all of the statistics.  I would consider a bilateral mastectomy but based on the grade I am afraid it will come back, one of the areas that is atypia is close to my  wall.  Am I better off with lumpectomies and radiation to avoid a recurrence on my chest wall which doesn't sound like it can be treated with good outcomes.  I am so confused and exhausted.  The drs, my friends and family are starting to loose their patients with my indecisiveness.  I wish it was black and white.  I have never been someone who could not make a decision before.  Why are 3 surgeons suggesting mastectomies and one saying try the lumpectomies, it is so confusing and overwhelming.  Can anyone share what steered them one way or another.  Am I over thinking all of this...

CTMOM1234

This is such a stressful and confusing time, dont worry about what your friends and family are feeling, take the time to gather all of the information you need -- as well as time to listen to your gut -- and you'll make the right decision. I know, I was only a couple of years older than you when diagnosed with grade 2 dcis in my left breast, and was considering mx or lump. Actually until my BRCA testing came back favorably negative, I was even considering bmx. 

I do think that an mri is an additional piece of information that you should get, particularly if the dcis is multifocal; my bs sent me for that (as well as the genetic testing) so that we could make as informed a decision as possible and it did help justify a lumpectomy rather than mastectomy. However, I reserved the right to have a mx if the info down the road dictated it. In fact, I did meet with a ps before the genetic tests came back and had decided that if I was going to need a mx or bmx, then I wanted to awaken with breasts and was going to have diep recon. 

Each of our experiences is so personal and whatever you decide, please make sure that you have good inner peace about it. For me, I just wasn't ready to lose a breast and the sensation that goes along with that, and chose a lumpectomy & rads. I wasn't ready to deal with the reconstruction issues either, which can be significant.

Others feel differently and I've seen many people state on these boards that the right decision for them was mx. I've never ever regretted my decision, and truthfully, I look and feel pretty much the same as I did 2.5 years ago except for the lump.scar which is my badge of honor having fought the good bc battle. I cannot say definitely if I'd have chosen lump+rads if I had bc in both sides, but it is likely I would.

By the way. I'm in CT, too, and had positive experiences with my surgeries, rads, and annual diagnostic mamms and ultrasounds @ Yale/Smilow. Best of luck.

cg1234

Hello, I was just diagnosed with a hi grade DCIS, so I understand the stress of having to make all these decisions.  It is very hard, but you do have time. I think many people hear the C-word and think you should get treated immediately.  For this type, you can chose to take some time and make the decision that's right for you. I think most surgeons would recommend mx because you have multi-focal and contra-lateral disease. As I think you know, this increases your chance of recurrence even with rads, and about half of those women who recur end up getting invasive disease. Part of it comes down to your comfort level with that risk vs. your desire to preserve your breasts and ability and engage in close f/u.

I am in my early 40s and am leaning toward bmx with immediate reconstruction (DIEP). It's hard to believe, but in the past year, I have had a sister-in-law, step-mother, and close colleague diagnosed with DCIS.  Even though I work in oncology, I was surprised by the recent results from several of the 15-20 year follow-up studies for women with DCIS who did lumpectomy+rads vs. mx.  For me, I'm not comfortable with a 15-18% recurrence rate over 20 years for lumpectomy + rads (plus I've already had 3 biopsies on the "healthy" side). On the other hand, my step-mother, who is in her 60s, was fine with those numbers. There tends to be an emphasis on 5 or 10 year survival rates (98%) when you talk to the drs, but if you're younger and/or have children, you need to hear the 35-40 year event-free survival rates for both treatments. In the end it's a highly personal decision, and it helps to talk to others and educate yourself. I've found the decision about reconstruction even tougher, but I tell myself the silver lining is that it's early, so at least we have some choices.  

Keep talking it through with your family and doctors, and the answer will come to you. You are the one who ultimately will live with the decision, so do what's in your heart. Good luck and know you are not alone! :-)  

LAstar

Please don't let anyone pressure you while you are deciding.  It is stressful enough.  At some point it will become clear to you.  

Since you are asking for people's thoughts, I'll share mine.  Having bilateral DCIS and multi-focal in one breast seems really rare (but that is just my impression).  If your lumpectomies are successful, that will require more widespread radiation treatment.  cg1234 has a very good point about recurrence rates and the short-time frame for which most of the statistics are calculated.  

I really wanted to avoid MX and had lumpectomy and re-excision, but both were unsuccessful.  Strangely, there was a sense of relief when the re-excision was unsuccessful because I had recently seen the recurrence rates after lump + rads and did not want to deal with this again.  I'm 9 weeks out from my BMX and hip-flap reconstruction and am mostly back to normal.  I was on the dance floor this weekend, arms above my head & big smile on my face!  The recovery from the BMX and hip-flap reconstruction took 6 weeks and was not fun, but life is excellent on the other side and I am glad that the treatment was so aggressive.  

I found this decision gruelling and, although I felt like it would end with MX, I couldn't choose MX and needed to try lumpectomy first.  Now there is no question that I did everything I could and, in retrospect, the pain and recovery times were minimal.  I wish you the best in making this decision!  Know that there is a sense of peace that comes when the decision is made!  I hope you find it soon.

Joycekeisman

HI all

in may I too was dx w DCIS grade 3 along with LCIS ,  had a lumpectomy 2 weeks ago and unfortunately no clean margins.  tumor was bigger than expected.  ALtho it is DCIS i am seriously thinking about bmx, nipple and skin sparing. and i will need to decide sooner than later. if you have had this done, can you tell me a little about the procedure and the healing time etc.. thanks  i see the plastic surgeon tomorrow morning...thanks...

LAstar

Recovery times can vary depending on what time of reconstruction you have, if you have it done immediately, your health, etc.  Your plastic surgeon will probably not suggest any reconstruction techniques that s/he does not perform.  Decide what type of reconstruction you want before choosing your plastic surgeon.  I found The Breast Reconstruction Guidebook by Kathy Steligo very useful for understanding what types of reconstruction are available.  I borrowed a copy from a local breast cancer support group.  I had hip-flap reconstruction at the Center for Restorative Breast Surgery in New Orleans.  Check out their photos at www.breastcenter.com if you are interested in reconstruction using your own tissue.  The recovery time was long (5 weeks), but TE's and implants can have their own issues so I chose the method that I felt will be best in the long run.  Best wishes in choosing your path!

MissSissy

4caseygirl, I feel for you (we all do!) - I want to add my experience as well. In retrospect, the worst part of my experience was the part you are in right now, and we all have been there - it is agonizing. I had widespread DCIS found 'accidentally' after I did a biopsy when I had nipple bleeding (the DCIS, although extensive, never showed up on mammogram or ultrasound). I decided to go with Mx because I am small breasted and Lx ws too risky to get clean margins; I also didn't want radiation afterwards. Frankly, it seemed to me that MX brought the most likely outcome of no recurrence in the future, and that trumped all else for me.  Your experience will be yours, and this forum was incredibly helpful for me in sorting out the information, but I was concerned about recovery and pain management - in retrospect I think people who have poorer experiences in those realms might be more likely to post to a forum to seek others advice. I did an immediate reconstruction with LD (back) flap - no expanders, and now, no radiation. It was a 5+ hour operation (I also had an implant done on the other side at the same time, to balance ) and I spent one night in the hospital, went home with the drains, and that was that. The drains were an inconvenience, but no pain ( I mean none - nothing even worth a tylenol), regained my energy in under a week and the use of my arm completely in a couple weeks. ( I am an otherwise healthy and fit 50 year old) One of the things I agonized over was if I should do all of it in one operation - it seems like a lot and the norm, at least on this forum, seems to be expanders - but I am SO glad I just got the implants right away. I think getting surgeons you feel really confident in will help tremendously - my surgeon had decades of experience and was described to me as basically an obsessive-compulsive type, known for taking her time and getting every last breast cell out of there. I think it helped a lot for me to know that other doctors really respected her and spoke highly of her - I also think it helped for me to realize after the fact that I had read a lot of others experiences on these forums and had kind of scared myself learning about all that could go wrong! So do remember to absorb it all, then step away for awhile and listen to what your feeling is the best course. (for me it helped to take a break from reading anything online for a few days, then sitting down with paper and pen and writing a list under my options---I eventually realized that my surgeon recommendation was the best - but it took a lot of agonizing and doing my own research to come to that understanding) You will get through it!

JamieB86

LAStar - so happy to hear things are going so well for you.  My BFF is getting married in Oct and I plan to dance the night away.  Had my exchange Aug 9 so I think I'll be good by the end of Oct. 

jill47

4caseygirl and Joyce:  Making my choice about my treatment was not easy but it came down to my choice in the end.  While my BS wanted me to have a partial mx + rads + tamoxifin (if ER+) and my PS said I was a great candidate (small breasts, age [47], no previous bc rads, good overall general health) for a NSBMX immediate reconstruction with TE's [I didn't qualify for the recon that uses your own tissue/fat] then permanent implants (that was his recommendation to my BS).  PS also said the amount of breast tissue to remove the 2cm tumor + tissue to get clear margins would of been about a 1/4 gap in my breast therefore some type of plastic surgery would of been needed if I wanted symetry.  He also warned that an irradiated breast is hard to do recon on (skin damage); so if there was recurrance, recon may not be an option for me.  My ER/PR wasn't in pathology until post op so whether I needed tamox or not was an unknown.  I had a pre-op MRI while I still in decision mode to see if there was other bc, it came up "good".  I'm a worrier and I didn't want to face the next 25+ years of my life with suspicious mammo's/biopsies (I've been getting these since age 35) so I chose the nsbmx. I am happy with my decision.  My path report came back 98% ER+/99% PR+ , my MO said I do not have to take tamoxifen. Path report found LCIS on the tumor breast and ALH on the "good" breast.  My nsbmx surgery took 6 hours + 2 nights in the hospital, honestly, it's been painful. I was on pain meds for 3 weeks, I still can't sleep on my sides and the TE's fills are finally getting better.  My decision was also financial based (I've been out of work for 8 mo's and I have terrific ins thru my husband's co.) But not working has been a blessing so I can go through all this w/out worrying about work and getting all the rest & recovery I need. Lastly all of my family and friends supported my decision and when they heard final path (even my MO made a comment) they are releaved I did what I did.  I hope you find peace with your treatment decision. Please send me a private email if you want to hear more. I'm 7 weeks out today from my surgery and feeling so much better as the days/weeks go by.  

Joycekeisman

thanks jill 47

 i saw the PS and he was amazing as was his entire staff.  the appointment was two hours long and included physicians assistant and a psychologist and scheduler and an insurance guidance person.  I dont need TEs as theres enough skin and i can save the nipple and areola.  and i dont want to be any bigger than i am, i want what i already have ut without the cancer!! so its one surgery and done.. i am very active and play lots of tennis so this is a greatsolution for me, 4-6 weeks post op and then a few more weeks of physical therapy and then i'm better than new!!!

No radiation and hormone/tamoxifen... thats huge for me..

I need a day or so to process, but it seems like a no brainer esp since i have LCIS as well.   

continued good health to you

joyce

thanks for your info 

Infobabe

Joycekeisman 

Sounds wonderful, Joyce.  That is great mediical care.  What city are you in? 

jill47

Hi Joyce, No problem, your PS choice and relationship with him/her is an important one, even though it will be a single surgery and no TE fills.  The added benefit of no rad or tamox is good too. With your active lifestyle your healing should be excellent. I am back running after 7 weeks albeit slow.  You are doing the right thing by taking a few days to digest. Be sure to post your surgery when you decide to do it under the appropriate month under before/during/after forum.  It's weird but you develop a sister ship with the girls that had surgeries the same month you did. Take care and we'll see you on the other side. Jill

4caseygirl

I really admire all of you you all seem so confident in your choices.

I think I am leaning toward the BMX , I found two new lumps in my breast last week, one in each breast.  I had an ultrasound today. The radiolgist beleives one is a cyst and the other will have a needle biopsy on tomorrow.  I hope its not anything additional, it wasn't there three months ago before I had the three steriotactic biopsies. I beleive this is a glipse into my future and the BMX might be  the safest thing to do in my case having DCIS in both breasts (who has it in both breast?) The radiologist really scared me today and said because I have dense breasts thay really can't tell what else is lurking in there.  If this is the case I'm not so sure why they said I had time to make a decision, I now feel like I waited too long and it has spread.  I know I sound dramatic but I haven't felt good since the biopsies at the end of May.

On a different not I did meet with a PS and he did discuss a NSBMX with me.  It looks like he does good work but I am so afraid of the procedure with the expanders and implants and I'm not sure if I could handle it both mentally and physically.  I do not qualify for any other type of reconstruction. I'm wondering what it will feel like to having something fake in my body,how do you move past the fear?

LAstar

I'm pretty blown away that you have found two more lumps.  I hope they turn out to be nothing serious.  You do not sound dramatic -- you sound like you have a lot going on!  

There are some discussions about different types of reconstruction in the Breast Reconstruction forum.  You will get a lot of different views there.  For some, reconstruction is an opportunity to come out of this awful process feeling even better about yourself.  There is also an interesting thread for those who chose to not do reconstruction.  I envy those that can move on without breasts and feel whole -- how much easier life must be without bras!  You can also postpone reconstruction if it feels like more than you want to deal with now.  Talk to a few PS if you have the option.

It's all a lot to get your head around  -- so many decisions to make so quickly.  The weight of it all felt crushing at times.  Trust that little voice in your head and you can't go wrong.  

Joycekeisman

Yesterday i met with the most wonderful Plastic Surgeon and his staff, including a PA nurse, psychologist, patient navigator andof course the insurance coordinator.  I was there for over two hours. He gave me options, direct to implant mastectomy with less downtime, explained in fine detail other less effective surgeries.  He even brought me  in to see a woman who had the exact same thing i would be having  and she is just five days out.  ( she totally ws fine with a stranger seeing her breasts!! as i have found with many other women who are satisfied with their post mastectomy breasts)  I 've decided to have the bilateral mx, it is right for me. i could not be normal to myself and my family if i had to go through this every three months.  bc i have LCIS it made the decision for me, much easier..

i now am waiting for a surgery date, probably within the next two weeks.. i am happy to be moving on..

jill47

Congratulations on making your decision Joyce! That is one of the hardest parts of our bc treatment.  So fortunate you don't have to get TE's and can go right to your own tissues implants. Knowing you have LCIS during your decision period on top of the DCIS had to of made it that much easier, I would of done the same.  Your final path report post op is the one you will find most interesting to see what else was lurking without you or the doctors knowing.  So cool that your PS had a current patient with your exact recon in her office and you got to see the real thing, internet pictures are not the same in fact I only looked at a few b4 my recon, I didn't want anything to change my mind. O.K. you have some busy days ahead of you as you prepare for the big day.  I'm happy you are moving on too... you have a great positive attitude that will help so much in the days ahead and your healing.  

Kd6blk

Hi, I also had DCIS, the agressive kind in my left breast and other bad tissue in both and decided for a mastectomy/rebuild. I had it Aug. 1. I am partially working from home. Today is week 3 and I am totally off drugs. I had the DIEP Flap surgery here at PRMA in San Antonio, TX.  I had had serveral lumpectomies previously. I was already misshapen as a result. I did not want to keep worrying about more stuff down the road and I wanted to avoid the poisons of radiation and any drug therapy. I see my oncologist on Friday post op. I will hear about what else was found. I was told no more cancer was found but I want to see the actual report. I am 56 which made the decision easier...it is certainly a personnal decision. Best wishes.

Joycekeisman

my surgery date is next friday,august 31... the coordinator was able to get me into the hospital of my choice, St Francis, in NY.  they are wonderful, the nurses are the best and overall the care is amazing.  so far everyone except one person agreed with my decision to have bmx.  i feel confident and comfortable, will meet with the ps, my bs and my internist all before next friday.  i'm on my way to being cancer free and that is exactly where i want to be.

thanks for the support

jill47

Yeah Joyce!!  You sound so good and confident in your decision.  Never mind that one person who disagrees with your decision, it's not theirs to make.  You will always find overwhelming support here from the girls on the forum. 

4caseygirl

Hi everyone-

I received the results back from my biopsies today, it was just compressed tissue, I'm sure from the original Steriotactic biopsy. After the procedure, well actually while I was still on the table, I had a long descussion with the radiolgist.She sees this everyday and she sees it progress, I don't think I would be comfortable taking those chances, the odds are already against me, high grade, both breasts and multifocal, good greif!  Any way I will be scheduling the BMX, now I need to decide about the reconsruction, has any one here had a BMX with tissue expanders?  Was it extemely difficult, I am a big baby when it comes to pain.

Infobabe

 4caseygirl 

You had better go over to the Breast reconstruction threads.  You will get more responses there from women who have been through it.  Also a variety of reconstruction techniques. 

cg1234

For those of you who had nipple sparing mx, did you all have dcis?  I have met with several surgical oncologists between my own appts and my sister-in-law's, and all of the surgeons were concerned about recurrence in the nipple (since all ducts lead to home).  One reluctantly said they might consider it if they could radiate the nipple, but everyone else said no way. 

4caseygirl, you've gotten through one big decision, so that's great.  As for reconstruction, you can always delay that if you don't know what to do yet.  The choices are pretty overwhelming, but the ps may rule out certain options based on your characteristics (e.g., body fat, etc).  It might be good to at least know what those options are beforehand and if the surgical oncologist can do anything to faciliatate later reconstruction (e.g., skin sparing) if you delay. My sis-in-law had a small one-step procedure (small saline implants) at her bmx, but my ps didn't feel comfortable doing that even if I stayed small (A cup). I've heard the expanders make you sore, but flexeril (or other muscle relaxer) can really help with that. Most women are happy when they get them out.  May depend on how large you go?  

kd6blk, great to hear you've done well with the surgery! I'm waiting for my date and see both surgeons tomorrow.  I know it will be rough, but hope I'm feeling as well at 3 wks out! 

  

Kd6blk

I had DCIS and was told the same thing about nipple sparing so mine are rebuilt, or on the way to being rebuilt. Stage 1 looks a bit odd...but should look nice when all is said and done. Not at week 4 yet (Wed.), and returned to work full time today...it went well.

howhm02l

Casey - I am glad you made your decision. I had BMX almost 2 weeks ago. DCIS extensive on the left and prophylactic on right - I am BRCa2 positive. I am also 40 and have 2 young children so I was concerned about the very long term recurrence risk. Plus, for me the MRI, wait, biopsy, wait, surgery, wait cycle was just too much for me.



I am having DIEP this Thurdsday, 8/30. I was not a candidate for mediate recon because the PS wanted to wait for final path to see whether any other treatment was necessary. Fortunately, my final path showed pure DCIS so no other treatment for me.



Kd-how is work going? I have a purely desk job and am trying to gauge how long I will be out. I can do a lot of work from home - computer based. Thanks for any insight.

jill47

Hi cg1234: I had nsbmx, both nipples were cored out and filled with small amount of breast tissue and skin. Since my DCIS was far from the nipple recurrence was not a concern for my BS, PS or MO.  Hope this helps.