Topic: Need to decide between lumpectomy or mastectomies for DCIS

Aug 18, 2012 03:37 PM proudtospin wrote:

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

Aug 18, 2012 08:47 PM SJW1 wrote:

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: www.ucsf.edu/news/2009/03/8165...

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: dciswithoutrads.com/

Wishing you all the best no matter what you decide.

Hugs,

Sandie

Aug 19, 2012 03:55 AM LAstar wrote:

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.

Aug 19, 2012 11:25 PM CTMOM1234 wrote:

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.

Aug 20, 2012 03:20 PM LAstar wrote:

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.

Aug 20, 2012 10:39 PM LAstar wrote:

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!

Aug 20, 2012 11:08 PM JamieB86 wrote:

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. 

Aug 21, 2012 01:43 PM Joycekeisman wrote:

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 

Aug 21, 2012 03:20 PM jill47 wrote:

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

Aug 21, 2012 08:36 PM LAstar wrote:

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.  

Aug 22, 2012 10:38 AM jill47 wrote:

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.  

Aug 23, 2012 12:08 PM Joycekeisman wrote:

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

Aug 23, 2012 06:40 PM 4caseygirl wrote:

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.

Aug 27, 2012 01:37 PM cg1234 wrote:

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! 

Aug 28, 2012 12:13 PM howhm02l wrote:

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.