To have mx or lumpectomy

amlg1

I am so confused I thought I was definitly going for  MX,but breast surgeon thought I would do fine with a lumpectomy,and nodes removed,followed with chemo and radiation.If I get mx I still need all the treatment,because it did spread into nodes.I'm dazed and confused.

lizws

You are the only person who can decide what is best for you.  ILC does have a higher occurance to spread to the opposite breast.  For that reason alone, I chose to remove both and did expander reconstruction. 

You will know what's right for you.  Follow your gut instict.

Hugs

Liz

wallycat

Yes, it is YOUR decision.  Some women will do ANYTHING to save their breasts and are very attached to them; others, not so much.

I had 4 doctors tell me to do a lumpectomy, but for me...and this is purely MY decision, I didn't want radiation (which is typical with lumpectomy, though I realize now I could have rejected the rads).  My biggest worry was the 6 month follow-up for life... 6 months mamograms and 6 months MRI...not only cost prohibitive, but the toll on my health and emotional "freak-out" each time I'd go.

Mastectomy gave me peace of mind; my hubby was not hugely attached to boobs, and though I was giving up sexual sensations, peace of mind at my age carried more weight.

Merilee

Same here, I did not want to worry and wait for the other shoe to drop.  Once I learned there was a high chance for cancer on the other side in the future I felt like I was sporting a couple of cancer nests.  I could not get them off my body fast enough.  No regrets. I feel much better without them and the worry. Once was more than enough to hear the words "i't's cancer" come out of a doctors mouth. It was the worst moment of my life.

. You have to follow your gut. I am a strong believer in natural instincts

nash

Like the other girls said, only you can make the surgical decision (unless it's medically necessary to have a mast, obviously). I opted for a lumpectomy, but I can't tell you what you would be comfortable with.

The most important thing to remember is that the surgery you chose has no bearing on your overall survival. Mast=lump+rads.

hlya

I am very new to it and don't have much knowledge. My BS told me ILC is more multifocal and easier to spread to another one, and my husband fully support me to do bilateral masts.



But from what I read on this forum, if BC mets to other part of the body, there is no difference between lumpectomy and mastectomy, I also heard even you remove the breast it could also happen again under the scar (?? sorry anybody correct me if I misunderstood it).

nash

Yes, QAnn, you can have a local recurrence along in the scar line, in the chest wall, or in the lymph nodes after a bilat mast. It's impossible to remove all breast tissue. My surgeon told me I'd have a 5% chance of local recurrence after bilat mast, specifically in the chest wall due to my tumor location, and that was a driver in my decision to opt for a lumpectomy.

amlg1

All of you are so helpful,my surgeon is at Sloan Kettering,she also told me the survival rate is the same,either way.I did ask her about the chances of going to the other breast and she about 10%.I have been reading that ILC is easier to spread.I will be having a Pet scan Monday.I'm not attached to my boobs either,always complained they are to big,I think I jinxed myself.(lol).I'll be so lopsided ,before reconst.if I decide mx. Anyway she told me I am between stage 2&3,and they don't stage untill after pathology.My report says pleomorphic lobular.Oh by the way I am 62,and have always been healthy.If anyone has anymore input I would love hearing it.

1Cathi

Hi Amig,

Sorry you are faced with such decisions, it stinks. In 06 I was DX with ILC/ILCS and ALH in my L breast , at that time I chose lumpectomy and rads, I also trried Tamox for about 8/mo but opted to stop at that point because of terrible side effects.  From 06 until my decision to do bilat MX in 10/08, I did have several scares and some very atypical findings in my R breast, I had in total 8 biopsys on suspicious areas/lumps, 2 being excisional.  I don't say this to scare you, because you must be comfortable with YOUR DECISION, ILC is a strange one, but then in my heart and my mind, I don't believe ANY CANCER has a clear cut guide book. There are Stave 4 woman who live many many years quite well, and then a woman DX @ stage 1 in just a very short time can get mets and leave us.

When I may my choice to do the Bilat (no recon) I knew it was time and it was RIGHT FOR ME, but it has not come with complete and total acceptance everyday sence the surgery, there are sad days that I am sometimes angry and cry, but the end result - saving my life makes those bad moments pass quickly.

Amig you must truly take time to decide what is BEST for you, 

Thoughts, hugs and prayers coming your way.

Kleenex

I figured that I would start small, with a lumpectomy, knowing that if it either didn't work or if I decided I couldn't stand the risk, I could always do more surgery. You can never put things back on once they're off. I, too, was fairly certain I'd need radiation, even with mx, because of the location of my tumor, and the idea of dealing with reconstruction and radiation worried me. I couldn't see not doing reconstruction if I lost one or both. I "like" my breasts, but if medically they had to go, I'd give them up. I'm a less-is-more person medically, and so far have been happy that I started with the less-invasive surgery so that I could recover faster and get on with my radiation and then into the Tamoxifen. I've had my first follow-up, and it wasn't a huge deal at all. I'd also rather deal with a new lump in a breast, rather than a spread to somewhere else in my body. It really is a personal decision, but remember you can always decide later to do a mx or bilateral, if you find that you have issues with worrying. If you do opt for the more aggressive approach, you will find great support on these boards.

amlg1

Thank you all,I just got off the phone with my gyno,and I am so much more relieved that I also spoke to her.She feels like the surgeon that the lumpectomy should be the way.She told me I would be monitered very closely,and if anything shows up down the road we will deal with it.Kleenex those were my fellings in the begining, then I was getting myself crazy,I always say go with your first instinct.I will keep posting because I know I have to talk to you gals in the same boat.

oreolau

I opted for a mastectomy because my surgeon told me that about 40% of lumpectomy patients have to have more surgery because the surgeon can't see everything.    I also had multifocal tumors in two separate areas of my right breast, and having a lumpectomy would have left me with next to nothing anyway.   Like the others said, my concern now is the left side and getting the right testing each year to show lobular.  

amlg1

I am having my surgery next thurs.I am giving a try for a lumpectomy,if the margins still are not clear then it's mx,for me.Had PET scan yesterday hoping all is well with that.My MRI shows a 2.5cm area are they usually accurate?

nash

My MRI originally overstated my tumor by quite a bit (it measured 4.8cm on MRI, but was only 2.7cm). Basically, there was some sort of problem with the contrast and the MRI was misread. When it was reread at a different facility, they read it at 2.5cm, which was pretty close to reality.

Seabee

amig1--If you want to try a lumpectomy with ILC, don't necessarily expect clear margins on the first attempt, The exact dimensions of ILC can't be determined until surgery and a pathology report because it blends in with other tissue rather than forming a discrete lump. A re-excision is much less of a deal than the original surgery, and greatly increases the chances of success. I had a re-excision, and it was nothing compared to the lumpectomy and axillary node dissection.It also resulted in clear margins..

amlg1

thanks seabee for the info,I am nervous about the axillary dissection it does seem to me it's worse than the lumpect.I'm just wondering if I'll be able to go back to my hairdressing.I'm right handed and it's my right breast.Well I'll see soon enough about my discission,8 days to go.

ann-idiot

amig1- I have ILC and went with lumpectomy, rads chemo. Had one opinion that felt mast was a bit of a radical approach because the tumor was in the 1-2cm range. I had issue with loosing my nipple. I had 14 nodes removed (just the 1 sent. node was positive) and the lymph removal was a bit harder on me than the lumpectomy itself. I'm right handed and, of course, it was the right side. You won't be cutting hair 3 days after surgery, but you definitely should be able to cut hair again.

HensonChi

I have ILC and had a 1.2 centimeter mass.  I had a lumpectomy with clean margins the first time.  I had a wonderfu surgeon who thought it would be too radical to do a masectomy also.  I hope I made the right decision.....at this point I feel like I do.  I am almost a year out of the surgery and doing fine.  I also had 14 lymph nodes removed.  Once in a while my underarm area feels numb, but mostly I feel OK.  Good luck with your decision!

HensonChi

I have ILC and had a 1.2 centimeter mass.  I had a lumpectomy with clean margins the first time.  I had a wonderfu surgeon who thought it would be too radical to do a masectomy also.  I hope I made the right decision.....at this point I feel like I did.  I am almost a year out of the surgery and doing fine.  I also had 14 lymph nodes removed.  Once in a while my underarm area feels numb, but mostly I feel OK.  Good luck with your decision!

Seabee

Amig1--the and is indeed worse than the lumpectomy or re-excision, but if you do your exercises you will surely regain the use of your right arm. What you'll be slowest to regain, if you are like me, is not dexterity but strength. Looking at my surgical report, I discovered that they not only take out the fatty tissue with lymph nodes in it, but also a bit of muscle, so you may find that on certain rather uncommon  movements your arm gets suddenly fatigued.Interestingly enough, they also seem to remove the sweat glands, most of the hair follacles, etc., which could be seen as a modest improvement.

nim88

My wife was diagnosed with DCIS in her left breast in 2005 (Stage 0 no nodal involvement) and had lumpectomy (and follow up to clear margins) followed by radiation. At the end of March 2009 after a clear mammo, during her routine ultrasound check with her BS a shadow was found in right breast, confirmed suspicious through FNA and MRI and lumpectomy done a few days later. Found to be ILC (mix of lobular and tubular!) and there was some early stage DCIS but no microcalcification - basically a lot of stuff going on! Stage 1 cancer no nodal involvement and 1cm tumor. The treatment that has been recommended is radiation plus tamoxifen. However, we have both been thinking long and hard and my wife is leaning towards a bilateral mastectomy (BiMx) because the chances of recurrence are much lower. The BS says if BiMx is done she will do a simple Mx and put in saline implants right away - no tissue expander etc. We met an Oncologist who said if she did Mx then Tamoxifen would not be necessary even though her tumor was ER and PR +. All very confusing especially when I research this and am getting different viewpoints. Would greatly appreciate any views on the following:1. BiMx vs lumpectomy + Radx2. Tamoxifen in either scenario3. Any issue with skin sparing Mx with no tissue expansion - does that mean that more tissue gets left behind and therefore more risk?4. Experience with saline implants - understand there is a 7% chance of leakage/rupture - but are these lifelong things or need to be replaced every so often? The BS indicated they were kind of permanent unless they rupture. 5.  Is it harder to diagnose a recurrence if all the tissue is gone - i.e. will it get caught too late?6. Does it make sense to do radiation after a Mx on the right side just as further insurance for the tissue that is inevitably left behind?  My wife is 44 . Thank you for your help and I wish all you courageous ladies all the best always. I apologise in advance since I posted this elsewhere but that thread may not be active.

nash

Hi, nim88.

 1) In terms of overall survival, mast=lump + rads. Local tumors don't kill people--metastatic disease does, and the surgery one have up front has no impact on mestastises. 

2) The surgery one chooses has no impact on whether Tamoxifen is warranted or not--the biology of the orginal tumor is the driver in that decision. I'm surprised the onc you met with said otherwise, and I'd get a second opinion on that.

3) Some surgeons don't like to do skin sparing for the reason you cited--more tissue left behind. Some surgeons base the decision on tumor location--as long as it isn't close to the nipple, they're OK with it. I'd discussed this issue with my surgeon when I'd been contemplating reconstruction, and in my case she was OK with skin sparing b/c my tumor was deep, near the chest wall. I ended up with a lumpectomy, so it ended up being a non-issue.

4) I'd read that implants do wear out eventually (after 10-15 years), but maybe they have new ones that are better. Hopefully someone with more knowledge on this with come along, or you can ask over on the Reconstruction Board.

5) Diagnosing recurrence if the tissue is gone--first off, there will always be some tissue left behind, which is why one can still have a local recurrence and why mastectomies are not 100% guarantee that there will never be another local tumor or a recurrence of the first one. I'd asked my surgeon about this too, and in my case my tumor was most likely to recur in the chest wall, as it was already growing into the pectoralis muscle, and the surgeon said that implants would actually make it easier for her to feel recurrence in the chest wall b/c the implants would be pushing the muscle up. Not sure how that extrapolates to women who have tumors in different locations.

Dr. Susan Love is of the mindset that it's almost better to have the lumpectomy, b/c if the tumor does recur locally, there is more tissue for it to recur in, as opposed to recurring on the scar line or chest wall, where it is harder to treat. 

One point that my surgeon made a big issue out of was that no matter which surgery I chose, if the tumor recurred locally, it was a function of the aggressiveness of my disease, not a function of the surgery I chose.  This quote is from an e-mail where she was answering my question on the subject:

"If you keep your breast and recur, yes you probably would have
recurred instead on your muscle. But again, these are markers of bad
systemic disease, not how much you did at the beginning. When cancer
comes back locally after everything was done to clear it, that means
the disease is recalcitrant."

6) As far as radiation goes, I think they only will radiate if the surgical margin was close to the chest wall. There wouldn't be a point to radiating healthy tissue. 

When it comes down to it, if the bilat mast isn't medically necessary due to tumor location, multi-focal nature of the tumor, or the inability of the surgeon to achieve clean margins with lumpectomy, then the surgical decision is your wife's personal preference. She has to decide how much local monitoring (followup mammos, breast MRIs, potential biopsies) she can live with (and having already lived with two diagnoses, she may already feel very strongly that she doesn't want to continue down that road).

 Hope that helps some.

hlya

I had the same consideration as what Nash mentioned:  but considering ILC is multi-focal and hard to be detected even via MRI,  and MRI also found some atypia cells in my breasts,  mastectomy would give the BC cells less environment/chance to recur than lumpectomy,  I also don't really trust the saying of "clear margin".  

If mastectomy has 10% - 15% less recurrance chance than lumpectomy,  I think that's a big percentage to me.  But of course,  it really depends on whether you are a worrier or not. 

LauraLC

My ILC was found through breast reduction surgery, so I did not have clear margins.  I had an MRI with Dr. Steven Harms (well-known breast cancer guru and developer of the the Aurora breast MRI) which showed no other carcinoma.   I chose to have bi-lat. b/c of the likely hood of ILC developing in the other breast, and its sneeky nature.  And I had LCIS in both.

I chose mast. b/c of my unclear margins, if there were positive margins left, my % of recurrance was 40% with radiation. 

My goal is to live as long as possible without a recurrance, so I really had no other choice. 

Gitane

amig 1,  The MRI may exaggerate tumor size a bit, sometimes it can't distinguish well between DCIS and invasive  (where one ends and the other starts)  For the most part, it's accurate.  I hope your surgery goes well on Thursday and that the PET is clear.  G.

nim88

Thank you to all you lovely ladies for such helpful replies. I will update you as to what course of action we choose. We need to decide in the next week or so since it has been quite a while (6.5 weeks) since the lumpectomy was performed so if radiation was to be pursued we need to get a move on. However, at this time it looks like we are leaning towards a skin sparing BiMx with direct implants (saline and all done at the same time). 

nim88

Had a meeting with our BS yesterday and we are going with the BMx option - skin sparing but not NAC sparing. Surgery scheduled for June 9th since need time for Mentor to ship their new contoured saline implants. It will be a one step surgery with permanent saline implants - i.e. no TE. Implants will be placed beneath the muscle. Hopefully my wife's body accepts these implants and they last for a long time. The poor girl has been through so much like the rest of you ladies. I really feel for all of you but am encouraged by the courage and good spirit you all have shown on these boards.I will update regularly on my wife's condition. Please do let me know if you have any thoughts/comments/suggestions on the above.

She will be going on Tamoxifen after recovering from surgery. 

amlg1

Well I had my lump. Thursday,The Dr.did say she had to take alot of lymph nodes out.I am feeling so much better already.I guess June 1st I will find out my stage etc.

Merilee

Good luck, please give us your good news when it comes

jpsgirl96

Just want to weigh in quickly...I already HAD DCIS with a micro invasion (IDC) in my left breast when a "just to be safe" MRI found ILC in the right.  The ILC side had spread to the nodes also (6 of 16).  My breast surgeon (who saved my life by ordering the MRI in the first place) recommended bilateral lumpectomy, chemo and radiation.  I felt that 1)mastectomy MIGHT prevent recurrence in the breast(s) - not a given 2)I can always do that IF there is a recurrence in the breast(s) and 3)mastectomy per se does not prevent bc from metastasizing.

Anyway, I am three years out from that set of decisions.  I am "NED"; I have had every 6 month mammograms and yearly MRI's, and my surgeon just moved me to alternating MRI and mammogram.  I know many women choose what feels safer to them, but I have no regrets at all about going the lumpectomy route.

I was not quite 50 at dx.  Thinking good thoughts for you.   Leigh

Anonymous

I am a 66 yr old female in NSW, Australia. I got an diagnosis of ILC in my left breast  two days ago. I'm left handed. I had a thyroidectomy in 2003 for papillary carcinoma, I have had fibromyalgia since before 1996 plus loads of osteoarthritic joints. Also am on lifetime warfarin because I have had 3 DVTs,  although I am off the warfarin at the moment because of the biopsy and upcoming lumpectomy.

I am not madly feminine, if I had to lose breasts at this age it wouldn't bother me the way it would have 20 yrs or more ago. I am now much more comfortable with myself and fairly philosophical about life which had made this diagnosis less horrifying than it may have been when I was younger. Apart from that I have a strong gut feeling that this is just another creak in my creaking gate life and the treatment merely an oiling for the gate.

Variously the size of the lump has been reported as 6 mm then 8mm. From my point of view that is pea size :-)

I am going with the surgeon's recommendation of a lumpectomy and 2 or 3 lymph node pathology done at the time determining procedure.

I will definitely be having radiation therapy 5 days / week for 6 weeks. My fingers are crossed that I don't need to have the lymph gland removed.

I have written this because it helps me to put my thoughts down for others to read and perhaps it will help those who follow.

I will post again after my surgery in 3 days time. All the best to everyone.