triple negative bc!!! mastectomy or lumpectomy?? help!!!!

Godisgood99

Hi all, my mom has tnbc and has done4 treatments of chemo her tumor has shrunk 40%.now is time for surgery and we don't know if we should do lumpectomy or mastectomy, and don't know if we should do radiation..? Dr.is saying with a mast.we can avoid radiation but our surgeon is really pushing for a lumpectomy. We don't know if her limpnodes were involved or not because she did have her chemo first. Any advice would be greatly appreciated, we are so scared of this tnbc and this is all still so devastating.I'm doing all the research I can to try and help my mom make the right decision.

Moderators

We're sorry that your mom and you are facing these tough decisions, but there is information and support here. There's an article on the main Breastcancer.org site called Mastectomy vs. Lumpectomy that may help you, and you'll hear more from members sharing their own experiences.

The Mods

Godisgood99

Mods, thank you for the great info.

wrsmith2x

Since it doesn't say how old your mom is its difficult to give any advice based on that.  However, I will tell you that if I knew then what I know now I would have done the mastectomy.  I had a lumpectomy and then a recurrence MADE me have to do a mastectomy.  Maybe, just maybe, I would have not had the recurrence?

Good luck to you and your mother.   I pray for the day without BC.  Namaste'.

epgnyc

First off, let me say that your mom is lucky to have you as such a good source of support through this.  I was diagnosed in 2002 with tnbc and had a lumpectomy based on my surgeon's recommendation, followed by radiation.  Nine years later I had a brand new tnbc in the same breast and it was much bigger and more involved than the first one.  I had a mastectomy the 2nd time and, in hindsight, I wish that I'd had the mastectomy to begin with.  Reconstruction was going to be much more difficult because radiation had done a number on my skin, leaving the only option as DIEP reconstruction with a 13-hour surgery.  Because of that (and my age) I opted for no reconstruction.  I know that it's easy to make decisions in hindsight but that I often think if I'd had a mastectomy in 2002 I probably wouldn't have had to go through this a 2nd time.  That being said, I'm still here and am feeling good almost a year out from my 2nd round of treatments and surgery.  I wish both you and your mom the best of luck with the rest of her treatments and making a decision that she's happy with.

dusterella

I'd go for the mastectomy. TNBC is nothing to mess around with. I actually went for a double, because I do NOT want this coming back in another few years in the other breast. But then, I also have a BRCA1 mutation.

Age would have a lot to do with the decision. And if she's been tested for the genetic mutation. I'm only 34 and have the mutation, so I want to have at least 40-50 more years of being cancer free, thus I went for the double mastectomy to improve those odds.  

Good luck, and hang in there! 

Luah

You are going to get lots of anecdotal advice on this subject. But in my opinion the best thing is for you and your mom to read and research scholarly articles carefully, compile a list of questions, and discuss the matter thoroughly with her doctors. There is no difference in survival between Lx and Mx; studies show there is a slightly higher chance of local recurrence (over 12 years, 10% versus 5%) with Lx versus Mx. TN is aggressive, however it is more likely than ER+ breast cancer to recur at a distant (rather than local) site... and this is why systemic treatments like chemo are so important for us... more so than the surgical decision. Still, some women feel more comfortable with one choice over another and other women must manage the elevated risk of recurrence that comes with being BRCA+. These are all considerations, and your mother's doctor should be able to articulate the risks and benefits. 

Good luck, your mother is lucky to have such a good support! 

KSteve

I personally had a bilateral mastectomy.  I, too, had chemo first and I had no evidence of disease in any tissue or nodes at surgery time.  I also had radiation following the surgery.  I have no regrets at all.  They would have done a lumpectomy for me since my tumor had literally disappeared, but I wanted a BMX from the beginning.  The surgeon (who I respect tremedously) told me after the fact that she would have made the same decision if she were in my shoes.  It's a personal decision that your mom will have to make.  There's no right or wrong answer.  I am surprised that she wasn't told anything about lymph node involvement or not because it would have been evident on the MRI and Petscan, which I would assume she had before starting chemo?  Did they say what stage your mom is, size of her tumor, or anything?  Some of that might factor into her decision.  I personally didn't get my genetic testing until after all of the treatments, so that didn't factor into my decision.

 It's awesome that you're an active part in your mom's recovery.  Sounds like she's done a great job of raising you! 

Take care,

Kathy

Jen78

I started with a lumpectomy and decided during chemo that I wanted a BMX.  Both my surgeon and my oncologist told me that they were glad I'd decided to go that route and that they would do the same thing in my shoes.  I'm also 34 and wanted to hit it with everything I could so that I could move forward and not look back.

Godisgood99

Thank you all for your support and opinions! Really made my night reading all of these:). My mom is 62 yrs old, they said she was stage 2 with 4cm tumor, no evidence of nodes being pos.but did say that one node looked a little thickened but nothing more than that. We have decided to go with the mastectomy, but what concerns me is I think that she should have radiation also just to throw all she can at it, but our oncologist is saying that she won't need too unless durring surgery they go in and see pos.nodes. but I know that they won't see any because she did chemo first which means the nodes will be clear, that's my guess due to her tumor shrinking so much from the chemo I imagine her nodes would be clear....?

Godisgood99

Ksteve,thanks for the great info. did you have nodes involved prior to chemo? If so is that why you had to do radiation? How long have your been Ned?

dusterella

My surgeon said I probably wouldn't need radiation, due to the mastectomy and no nodes being positive. But I didn't do chemo first...I actually still haven't even seen an oncologist yet! (my surgery was just done on June 15th.)



I'm praying for no radiation and very light chemo, but I also want to make sure we get every last tiny microcosm of this cancer, so it's a conundrum.

Godisgood99

Dusterella, I agree Def push for radiation even if you have a mastectomy since you didn't do chemo first. Reason being you don't know if your tumor would have responded to that particular chemo.my moms chemo was light compared to dose dense and she did hers every 3 weeks which was not bad at all. I hope you get this!!

Godisgood99

We don't want radiation either but its better to do it right the first time around I think just to be safe...:(

bexH

I went with a lumpectomy and radiation just for a reduced healing time.  I am only 41 and a mother of 3.  I did not have chemo before surgery.  I chose LX so I can get to chemo faster.  Praying for guidance for you and your mom.  You will be guided to the right choice for your mom.

bexH

What grade is her cancer?

Godisgood99

Bexh, thank u for the kind words and support. My mom is stage 2 grade 3.but stage 2 only because of the size of the tumor , it hadn't spread to nodes they said.

Godisgood99

Bexh, thank u for the kind words and support. My mom is stage 2 grade 3.but stage 2 only because of the size of the tumor , it hadn't spread to nodes they said.

kathleenhutson

Hi there...what a wonderful daughter you are...you remind me of mine:)

I have triple negative.  Diagnosed in September 2011. I found the lump under right breast, at the crease of my breast.  Very difficult for mammogram to pick up the tumor.  Only ultrasound could see the tumor.  Just at 2 cm.  Three lumpectomies: First Surgery November 9, 2011- no clear margins. Second surgery Dec. 9, 2011- no clear margin. Third Surgery Jan 3, 2012- no clear margin.  Began 8 rounds of chemo, every other week, finished May 15, 2012.  First surgeries were done with University Hospital of Cleveland, Ohio.  I switched to Cleveland Clinic for Chemotherapy and decisions of what to do.  My surgeon with Cleveland Clinic is the pioneer in nipple and skin saving procedures.  Decided for masectomy on June 25, 2012 and healing at this time.  Happy with my decision.  My surgeon made my incision longer under my right breast, to my armpit, took out all breast tissue, and kept skin and nipple.  The plastic surgeon finished the surgery with expander to be filled once a month until desired breast cup size is reached.   The permanent breast implant will be placed somewhere around October. There is no plan for radiation since there is nothing there to radiate.

 Had I known what I know now and met my surgeon from the Cleveland Clinic in September 2011,  I would have had a masectomy, skin saving and nipple saving in September 2011, with chemo and called it a day.  I was not armed with all the information.

 Couple pieces of advice for your momma...ask for a port right now. This will relieve her from trying to find a vein for blood draws, chemo and labs.  Mine is in my left part of my chest. It's placed under the skin. Also, the worst part of the chemo, for me, was the after effects.  The chemo tore up my digestive system, where my rectum developed bleeding, fissures and and extreme pain.  My oncologist introduced me to the Cleveland Clinic colorectal doctor.  She performed surgery on my rectum on June 6.  Still pain, however, healing.  The colorectal doctor stitched fissures and botoxed my sphincter to keep it from spasm, giving my rectum a chance to heal.  I would recommend your momma, as soon as she experiences pain from her rectum, to get the lidocaine jelly and apply to that area.  I used a sauve from a compound pharmacy in Cleveland that helped a little, but had to have  surgery, anyway.

 I had the BRAC 1 and 2 gene checked.  I DO NOT have the mutation.  That means I will not pass this breast cancer onto my children.

 If you or your momma have questions, please do no hesitate to ask.

Godspeed and Good Luck-Kathleen Hutson

June-Rose

Hi, I had a triple negative cancer, and the breast specialist wanted to do a lumpectomy.  They always start off trying not to be too radical, but left the decision to me.  This was the hardest part.  I decided on a bilateral mastectomy, as I didn't want it to come back to haunt me.  I had this done at the end of February, and have just finished chemotherapy.  The breast specialist now says I did the right thing.  I had expanders put in at the time of operation, and when I feel up to it will have a second operation to remove the expanders and replace with implants (small ones!).  I feel I've done all I can.  I am 58 years old.

Can't wait for my hair to grow now.  

Good luck for your Mum and her decision making. 

Godisgood99

Thank u all for your support u are all a big inspiration. My mom ended up having a mastectomy by choice:), now she will finish up chemo with 4 more treatments . My mother did not have any lympnode involvement but they did remove 3 for testing. Now we are trying to decide if we want to do radiation after chemo. What do you all think? Is radiation good to do just incase there is something small left behind or isbit just unnecessary?

joannnc

I am happy all went well with your mom and that the nodes were negative.  When I was in treatment they usually did not do radiation if you had a mastectomy but protocol is always changing.  I really cannot advise you about this.  Your mom will be just fine.  Hugs, JoAnn