Topic: lumpectomy vs mastectomy - why did you choose your route?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 13, 2013 01:54PM

Posted on: Jun 13, 2013 01:54PM

ealga wrote:

Hi all, 

i was wondering if anyone could elaborate on this question. i have multifocal, grade 3 DCIS, and am contemplating another lumpectomy vs a mastectomy. my surgeon is confident she can clear the margins with another lumpectomy, and recommends radiation afterward.  BUT anecdotally, so many women I’ve talked to, even with a Grade 1 single foci lesion, opted for mastectomy.   I don’t want to undertreat OR overtreat but I am struggling to figure out why women would make this choice and what am I missing?  I'm at a very cutting edge cancer hospital if that matters.  I'd love any perspective on this.  Many thanks in advance. 

Dx 4/4/2013, DCIS, 5cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2- Surgery 5/15/2013 Lumpectomy: Right Surgery 7/10/2013 Lumpectomy: Right Radiation Therapy 8/28/2013 Breast Dx 9/23/2020, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 11/7/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Chemotherapy 1/5/2021 CMF
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Sep 16, 2013 12:22PM deafitmom4 wrote:

ealga, beesie and ariom....i have been going back and forth with this decision since july...i actually found the lump july 13 and biopsy first week of aug...i have weighed out all my options....lumpectomy will leave no breast tissue left and a deformed breast after radiation...so they said the cosmetic outcome will not be good and i will not be happy with it. I will be seeing my PS this morning and discussing with him again the best option for me...I honestly believe, knowing myself, if I had a BMX i would regret it cuz I didnt save my healthy breast. My surgery will either be Sept 20 or Oct 1, they are having difficulty getting in sooner, and my surgeon wants to do it sooner, so I have no idea when my surgery will be, I just have to be at peace with this decision....When I choose MX, the next day I feel like BMX is the right decision, then I go back to the MX then back to BMX....back and forth...my husband is being very supportive, and knowing my emotional well being, he thinks a MX would be best, but he wants me to decide....SO FRUSTURATING! and I know there is no going back once its done. He said if I do get it in the healthy breast, we will deal with it then.

Dx 8/8/2013, DCIS, 5cm, Stage 0, ER+/PR- Dx 9/20/2013, IDC, <1cm, Stage I, Grade 1, ER+/PR-, HER2- Surgery 9/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement
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Sep 16, 2013 12:40PM beesie.is.out-of-office wrote:

It sounds as though you really don't want to have the BMX, but for some reason you feel that it's the "right" thing to do.

There is absolutely no medical reason to remove a healthy breast, particularly if you don't have any significant risk factors.  Yes, some women who've been diagnosed with breast cancer will be diagnosed again, in the other breast.  But most women will not be. Some women can live with that risk; others can't and therefore choose to have a BMX.

So the only "right" thing to do is what you feel most comfortable doing.  And if neither option makes you comfortable, then it makes sense to select the option that is least drastic and that allows for more flexibility down the road.

I had a UMX. I know that I'm high risk to be diagnosed again but I simply couldn't justify removing a healthy body part for something that might - but more likely won't - happen.  I haven't regretted it for a day.  So that was the "right" decision for me.  But for others, having a BMX was the "right" decision.  So since both decisions are "right", the only thing you have to decide is what you want to do.

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Sep 16, 2013 09:25PM Starmusic wrote:

Hi Ballet12
Thanks for your reply. Yes, the SNB was weird. At first appointment, they said I would not need SNB. Then, at pre-op, a different doctor said I need it. At that time, it was very early in this BC "adventure", I didn't have a lot of info and I was too busy at the time to ponder that. Doctor says it , so it must be necessary, I thought. I asked later why did one doctor say no and the other say yes? The 2nd one was higher up, and very conservative, was the answer.....But is it true that there is little or no(?) chance of node involvement with DCIS?????
And you were able to get another lumpectomy rather than MX. That is great! DCIS is so hard to find...How could your BS look for it?

Dx 4/3/2013, DCIS, <1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR-, HER2- Surgery 5/13/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/9/2013 Mastectomy: Left
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Sep 16, 2013 10:02PM ballet12 wrote:

Hi Starmusic, regarding your question on SNB, it is not generally done anymore with DCIS during lumpectomy, only if they find micrometastases (microinvasion) during the core biopsy or an initial lumpectomy, because in that situation there is a very tiny tiny chance that there could be metastases to the nodes.  With "pure" DCIS, there is no spread to the nodes.  I'll look up the thread about snb and DCIS for you, unless Beesie gets to it faster.  They do; however, do SNB with mastectomy for DCIS.  The reasoning behind that is that once you have the mastectomy, there is no connection between the breast (it's gone) and the nodes, so they can no longer look for the nodes which would most likely show metastasis (based on flow of dye through the lymphatic system of the breast into the nodes).  So, if when they do a mastectomy and it turns out that the woman actually has some IDC, they can't go back later and do the snb, so it's done at the time of the mastectomy (actually just before it).  Some women with (what they believe to be) pure DCIS are requesting that no snb be done at the time of mastectomy because of the risk of lymphedema.  If they don't do the snb and IDC  is found in the pathology, they have to do an axillary dissection, which is removing more nodes, which has a greater risk of lymphedema, but at that point its necessary.

So, my story with the lumpectomy, the second surgeon looked for physical signs of the borders of the previous surgery.  The margins hadn't been marked, but there must have been some general location information available to her. You absolutely cannot physically see DCIS.  It is microscopic.  The only thing they see on the mammos is the calcifications.  They are essentially markers that there might be something suspicious going on nearby.  I had much more DCIS than was apparent from the calcifications.  She went in for the second lumpectomy and even took out some stuff (maybe scar tissue), which looked like it might be suspicious.  There was one close margin after the second surgery, so I went back in for a third surgery. I really didn't want mx, so I took a chance that I wouldn't have too much of a defect in appearance of the breast after the surgery (it had been my sixth surgery on that breast, actually).  It turned out to not be so, so bad in the end.  Somehow, the appearance improved after radiation, although between the last surgery and the radiation it was really not pretty.  I am happy with my decision and it sounds like you are happy with yours.  I would also not have done reconstruction for multiple reasons.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Sep 16, 2013 11:13PM deafitmom4 wrote:

Well, today i went to see my PS and discussed my feelings and struggles of being at peace with the right decision. I read all your posts in response to me, and I truly appreciate it. My PS did say, if I truly want to save the healthy breast, and if later down the road, I change my mind, there is nothing wrong with that. And that is some of the advice I received from some of ya...He said, once its gone, you cant get it back. With the UMX, I will do the immediate reconstruction with TE, and he told me once the "filling" is done, then we will discuss how to match the healthy one to the left, whether an implant or a lift, something that I am comfortable with. I am scheduled to have surgery this friday (sept 20th), hopefully will still happen(the hospital has been giving my drs problems with scheduling). He said on the day of surgery, if I want to change my mind, I can. So as of now, I feel I am 85-90% sure of UMX w TE....till then sisters :)

Dx 8/8/2013, DCIS, 5cm, Stage 0, ER+/PR- Dx 9/20/2013, IDC, <1cm, Stage I, Grade 1, ER+/PR-, HER2- Surgery 9/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement
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Sep 16, 2013 11:32PM beesie.is.out-of-office wrote:

Since you are 85% - 90% sure that you'll be having the UMX, here's another way to think about it.  Reconstruction is not easy, and the results are not exactly natural, at least not in how your breast feels (no natural movement) and not in the feelings you have from your breast (which at best is surface skin sensation).  Some women love the results of their reconstruction, some women hate the results, and most end up in between, okay with it but not overjoyed.  By having the UMX, you will find out how you really feel about the reconstruction and that might play a signficant role in what you decide to do later.  Right now you are trying to make the decision on the 'good' breast with no information.  Once you have the UMX and the reconstruction, you will know exactly what you'd be getting yourself into and that will make any future decision much easier.

Good luck with your surgery on Friday.

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Sep 17, 2013 09:45PM Starmusic wrote:

Daefitmom,I'm happy you have made a decision! Even if it is still 85%....Best wishes to you on Friday.
Ballet12, thanks for the info about SNB. Wow, I wish I had known that and been more proactive. 6 surgeries! Wow! That's great you could keep your breast. I really struggled, did not want MX ....but ended up doing it because it would be nearly 100% no cancer coming back in that breast...and did not want to keep having surgeries. But, as it turned out, there was indeed no more DCIS there!!!! So, a really really great thing would be for someone to make something that can see DCIS clearly!!! I am happy to be sure it is out and cancer free!!! After surgery 8 days, drain is out and feeling mostly good!

Dx 4/3/2013, DCIS, <1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR-, HER2- Surgery 5/13/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/9/2013 Mastectomy: Left
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Sep 22, 2013 03:42PM deafitmom4 wrote:

Well, it is officially done! I did the unilateral, and don't regret it a bit....I am home recovering...surgery was about 3 1/2 hrs, everything went good...my sentinel nodes were negative and the tissue under my nipple were negative as well so I was able to have my nipple saved. I did have 2 lymph nodes removed...I will know the final results on monday. the pain in manageable, as long as i stay ahead of it...this is my 7th surgery(all are diff), and I have never felt tired with any of them as i do this one...wowee I sleep and sleep and sleep...its been nice, no tv, no wine, nothing...been drinking fruit/veggie juices my friend makes me by the jars every day....so nice to have such wonderful friends and support. I have not yet seen my "revision", I go in monday and get a dressing change, think that might be the tipping point to teardom, but we ll see! the drain isnt as bad to have as I thought, but burns like a son of a blllelelelelelel when you milk it...oh! I do have periods of where I feel strong enough to walk...and periods where I am tired..The choice, however, I have felt at peace with it. Thank you all for your kind words and support.

Dx 8/8/2013, DCIS, 5cm, Stage 0, ER+/PR- Dx 9/20/2013, IDC, <1cm, Stage I, Grade 1, ER+/PR-, HER2- Surgery 9/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement
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Sep 22, 2013 06:58PM Ariom wrote:

That's wonderful news!

Take it easy and listen to your body. You will get tired easily, I called it "Hitting the Wall" "I need a nap NOW"...thud!:)

I chose a UMX, but no recon, same length of surgery as you too. I am now 9 months out and not a single regret either. I also have no issue with the way I look, and am rather proud of my scar. It is all about "The New Normal".

You may be surprised by your attitude to seeing your chest, we are all different. Some cry for the loss, others are grateful the threat has gone. I saw mine just hours after the surgery and was not affected emotionally at all. Just let yourself feel whatever comes up and be kind to yourself. You've been through so much, it takes time to process everything, and rid the body of the anaesthetic. 

I wish you all the very best......Take care!

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Sep 26, 2013 06:40AM Starmusic wrote:

Daefitmom,
So glad to hear you have no regrets! So glad to hear you have a wonderful friend who brings you fresh juice every day!!! There are positives to this whole experience...becoming closer to the people who really care. I believe I am savoring more every positive. My whole world has become brighter somehow...
Anyway, breathe deeply before and during the drain milking. It may help the burning. Healing thoughts sent with this message!!!! And yes, rest!!!!! I made the mistake one night not eating well, staying up late, could not sleep, paid for it the next day....

Dx 4/3/2013, DCIS, <1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR-, HER2- Surgery 5/13/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/9/2013 Mastectomy: Left

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