lumpectomy vs mastectomy - why did you choose your route?
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As a newbie to all this, dx'd 7/8/13, I really appreciated everyone's input in making this decision.
I have met with the BS and next Monday I meet with both the RO and MO. My dx is DCIS-MI, the path report said there were so few invasive cells that they lost them in resectioning. I was told I am on the fence between Stage 0 and Stage 1. I have had a previous biopsy about 9 years ago, in almost the same spot as this one, that was benign. Since my mother passed from bc I am strongly leaning toward doing a MX. But I am still going back and forth. The surgery is set for Aug 13, I do my pre-op July25 so have to decide by then. I know I will feel better when I make the decision.
In the back of my mind I have always felt bc was a probability, but at the same time telling myself no, not me. Well, it is me now and I am overwhelmed. I feel like I am living in jello and everything is in slow motion. I've been reading so much my head is swimming!! I've read alot here too and really appreciate all the info.
I went through similar emotions last year in Feb when I was dx'd T2 Diabetic, but that was a totally unexpected shock to me. I've worked really hard getting that controlled and am at the low end of normal. I plan to fight this the same way.
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GrammaB, I am so sorry to hear what you're going through.
I too, had a Mother who had BC, she had a radical Mx in '94, just 4 months after my Dad passed away.
I always had that niggling feeling that I would face BC too. I was fortunate, I was Dx early with DCIS grade 2/3.
I know it isn't for everyone, and I wouldn't presume to advise one way or another, but for me, a Mx was a no brainer. I didn't even really consider a lumpectomy, and I knew I wouldn't want to do Rads, if there was any way to avoid it.
I was used to seeing my Mother with a UMX, so there wasn't any surprises, so to speak. She had a sensational attitude to it, and a great sense of humour, so she paved the way for me to have a good experience.
I can honestly say, apart from having a few hiccups, an infection, seroma and hematoma, and a weird one called Mondors Cording, I really haven't had a bad day. I haven't experienced any emotional issues, and I have absolutely no problem with the way I look. I have settled into wearing a prosthesis, or not, depending on how I feel.
There is definitely a difference, a "New Normal" to get used to, but it isn't all bad!
I wish you all the very best, and the clarity to make this decision. Once you've made up your mind, you'll feel better. Take care!
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Thanks Ariom! I appreciate you sharing your story. As every day passes, I am leaning more and more toward MX. I have never had an issue with the left breast so I don't think my ins co will go for a BMX, but if they would I would go for that and be done with all the worrying.
I was just thinking today that I may not even go the recon route. I so seldom wear a bra anyway and the few times I "dress up" (which isn't often here in the boonies in MT) I could just wear a prosthesis and not subject myself to the additional surgeries. You can tell I am not overly attached to my breasts!!
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I am in Australia grammaB, so our medical insurance is quite different, but from my experience here on BCO, I believe your insurance companies will do BMX for symmetry. It is something you could investigate.
If you aren't really motivated to go the recon route, then your surgery will likely be easier to recover from, it will certainly be much shorter in duration.
As I mentioned above, I have had absolutely no regrets about not reconstructing, and that's with a "D" cup still on the other side. I can contain that "puppy" with a firm shapewear tank and go prosthesis free and bra free whenever I want. It isn't a big deal at all. I have been known to duck out to the supermarket only to discover I am prosthesis free, and hadn't really noticed. No one ever seems to stare or appear to notice.
I think you'll do just fine!
Let us know how you're doing......((((hugs))))
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When I asked my surgeon about BMX she was pretty sure ins wouldn't cover the other breast unless there was a dx there too. But I will call my ins company after I get through all of Monday's appointments just to be sure.
I'm already visualizing myself with a flat chest (hopefully both sides) wearing my tank tops and not worrying about anything. With prothesis/prostheses if I need "boobs" for anything.
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You have a great attitude grammaB!
If you do go BMX, you can decide what size "Foobs" (fake boobs) you want at any given time:) We have some threads on here that have lots of advice on lingerie, foobs, swimwear, shapewear etc. I have been researching for the past 6 months and have found many great options.
Good Luck with it all. I'll look forward to hearing how you are doing!
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grammaB I just happened upon a thread here called "Will Insurance Cover a Double Mastectomy"
If you search for it you'll find information that the writer posted about your Federal Law.
It may be of help to you when you speak with your insurance company and Surgeon.
Take care!
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Sorry to be slow in answering. I healed up pretty well from both lump and reex but now 3 weeks out having some pain just in a tiny area of the incision. But not terrible. Think I may have it looked at tomorrow. I had a PET scan to make sure I could have the rad done at my close cancer center vs having to drive 40 min. to hosp that has more sophisticated machine but onc-rad called and she feels we can do it here. They made my mold and marked me up and hope to start rad next week. I just want to get on with it as we've had vacation planned since before all this and I want to be finished and feeling good. The onc will discuss which estrogen inhibitor after that. Keep us posted on your situation. I am feeling positive and have a strong faith which helps. Good luck.
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Bumping for CultivateGratitude
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Hello all. This place is certainly helping me to make decisions and about the way I feel. My dcis was just outside of the aerola. I had already had a biopsy the year before when bs found a thickening. And with dense breasts he couldnt see begind it. Itnwound up being fibrous tissue. Year later found dcis that never showed up on mam or sonogram. Bs knew me and watched me for 10 years due to high risk. He knew all my medical hist. Because of my skin, and issues, he could do lumpectomy and rads, but really didnt like what rads could do to my skin. I had a left uni. I thought if I kept a breast, I might can go on and it wouldnt bother me. I will sound vain now, but I am trying to make a decision now for mx on other breast with no cancer. my sister had bc at 26, mother at 73, me at 53, I was lucky it was found early. No lymph, other had itmin lots of lymphs. Cousin now diagnosed and it goes on. Here is my vain part. My uni bothered me from day 1, in how I looked, how I felt as a woman my interaction with hubby, and my prost. Prot is so hot to me its been such a bother for the whole 4 years. Just hate it. I saw ps, yesterday. I had spoke to bs earlier about all of it. Even the no sex with hubby because of how I felt, not him. Bs says understands my thought and fear of other breast. Something was found in my mom's uni after 10 yrs c free. I just guess that, I feel vain in a way, because part of my choice is symetry, but because I want to come out of this mess with my mind. Its been a long 4 yrs of struggle every day. I am lucky it ws found, but feel it ruined my life at same time. I think this is the longest post here. Sorry, just needed to talk. Family risk is so very high. Fear every 6 months at testing now also.
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Hi Mepic,
My oncologist referred me to a surgeon to discuss my options after being diagnosed with midgrade dcis. The surgeon is adamant that I should have lumpectomy and radiation since, in his words, "You don't have cancer or even pre-cancer"! I told him I wanted a double mastectomy with reconstruction. Like you, I am not concerned with keeping my breast. And, more importantly, I don't want radiation. Surgeon told me to go to plastic surgeon to see what he said. I have now seen the plastic surgeon, who said he's willing to do what I wish and that he would talk with surgeon who would then call me so we could set up a date. I have still not heard from the surgeon. I don't feel like I'm being unreasonable or "a hysterical female". Did you face any of these problems? Thanks, Frustrated
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Interesting that "You don't have cancer or even pre-cancer" but they are not only recommending lumpectomy but also radiation. I admit radiation was a deal breaker for me.
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I had a excisional biopsy (lumpectomy really) found I had DCIS and I did not have clear margins. the choice I made after I talked with my family and my BS was to do a BMX. Ths BS said that with mine it was like taking a piece off of an iceburg but you never know what is under the water. I had very dense breasts and was already doing mammograms and sonograms every 6 months. He was going to have to go back in anyway to get clear margins.When he went to do the BMX, hehad to scrape my chest wall to get clean margins.
I am 50 so still young with early twenty to late twenty year old children and one grandson with another grandson on the way. I did get to keep my nipples and I just had my expanders put in two weeks ago. My PS once he gets these filled to how we both like them, he will put just a bit more in then I have to wait six months before he will put the permanant implants in.
Has it been easy? No, but I would not change my decision that I have made. By the way, my BMX was done on May 17th. I know in my heart and in my head I did the right thing for me and my family.
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I read Bessies suggestions on what to consider when making a decision. I am 41 yrs old, and discovered a lump in my left breast just cuz I felt some soreness, like a bruise, and I knew it couldnt b from doing chest exercises. I have never done a mammogram, no do i do self exams. I got a mammogram done and ultrasound and biopsy, and sure 'nuff biopsy showed DCIS, and hormone sensitive cancer. I went thru the process of meeting with drs from radiation to PS...becuz I have small breasts (size A), and the size of my DCIS and being in different places in my right breast, and the fact that you can feel a lump, and you CANNOT feel DCIS, they all suggested a MX...I will be having surgery soon, and I am still struggling with the decision to do a single or BMX...i was tested BRCA neg and i have no family history of breast cancer. My paternal aunt may or may not have had it, noone in my family can confirm it. I have a very low risk of developing BC in my right side, but the question is...will I b playing the "what if" game for the rest of my life? I am not at peace with either decision, whether I chose a MX or BMX....I am a marathon runner, and physically active. How have any made the decision btwn MX and BMX when there is no history and low risk of recurrence? To save the healthy breast or not? I have only a day or two to make my decision......
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Hi deafitmom,
Sending my empathy. It is so hard making these decisions. Are you comfortable with the number of opionions you received?
All the best...
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deafitmom4,
I don't see why you only have a day or two to make the decision. You know that you need to have the MX, so that decision is made for you. The decision on what you do with your other breast can be made now, or it can be made in a year or in 3 years or 10 years.
If you choose to do nothing now with your 'healthy' breast, then all the options remain open to you for any time in the future. However once you have a MX, there is no going back. So if you are uncertain about what to do, I believe the better choice is to leave open all your options. A MX - and particularly a prophylactic MX - is too big a decision to make if you are uncertain. Many women have made the decision to remove their remaining breast a year or 2 after having a single MX. And many other women have been glad, a year or 2 later, that they made the decision to have a single MX and kept their healthy breast.
There really should be no reason why you have to make a decision about your healthy breast now.
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I agree with Beesie, it is far too big a decision to make in a hurry.
You will find so many different stories here on whether to keep the healthy breast or not.
I am a UNI, and have no regrets about keeping my other breast. I had lots of people telling me I should lose the other for symmetry, but I just didn't feel I needed to, and am so glad I didn't bend under that well meaning, pressure.
I have just been for my first follow up and Mammogram, and although it will probably always be a stressful thing to do, noone wants to hear that Dx again, it was fine.
I wish you all the best with your decision!
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Beesie, thanks for a great tool for us who have to think about lumpectomy or UMX or BMX!!!!
Deafitmom, for me making the decision was the hardest. I did not want MX, but once decided was at peace.....This was my situation:
DCIS, stage 0
lumpectomy + radiation was the plan BUT after LX
No clear margins and the specimen was not oriented (is this really sloppy, or what??????)so there was no way of knowing where to do another LX. (After that 1st surgery, got a 2nd opinion and new surgeon.)
For stage 0, MX seemed way too invasive to me. I have totally changed my diet, talked with macrobiotic 2- time cancer survivor. But that could not promise a cure.....So, I opted for least invasive with still nearly 100% BC clear. One week ago, UMX, no reconstruction. I heard about so many problems with reconstruction, especially from athletes. I am not an athlete, but play violin so I did not want any problems with muscles! Happy flat , one side, my dear husband also VERY happy BC is gone. I met a woman with BMX and rconstruction done by the same surgeons I was scheduled with ( lucky coincidence!) She was very happy 3 years out. She looked really good. But I just really did not like the idea of something fake in my body and all the extra surgery. I guess each one if us has to make a decision we can live with! BTW, there was NO DCIS in the breast they took out......and they didn't know until they took it out....I hope that changes soon, a way to see DCIS during surgery. Sorry to digress from original topic.....Best wishes to all of you and thank you so much!!! All your comments, research, pains and joys have been so helpful in learning how to deal with this. I am so glad I found this discussion!!!!!0 -
Hi Starmusic, I had the same situation with the first lumpectomy. There were no clean margins and the pathology was also not oriented. I went to a second surgeon at a major cancer center. She did a second lumpectomy and looked (physically looked) for where the previous surgery had been done. It's a tricky process. After that surgery, there was still one close margin. She told me that if I chose mx at that point, they might find no DCIS in the pathology. I decided to go for one more lumpectomy with wide margins. It was done and everything was clean, but radiation was, let's just say, strongly recommended (grade 3, necrosis, etc.) Probably if I'd gone to the second surgeon from the get go, I would have had success after two surgeries rather than three. She might not have succeeded after one, since there was way more DCIS than was visible on mammo, and my stereotx biopsy had only shown ADH, so they weren't even going for clean margins. It was really a large excisional biopsy. Anyway, glad your situation worked out. I still have the anxiety about the hormonals, and haven't committed. Hopefully, you don't need to worry about that!!!
I just noticed from your signature line that you had a sentinal node biopsy with the lx. That's something. A snb but no marked margins (crazy). What was their reasoning for doing the snb with a lumpectomy?
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I agree with Beesie as well. If you are uncertain about the other breast and not comfortable with it then don't do it. I had a uni end of July, BRCA negative result helped me in my decision to uni mx. I am 39 yrs old. I asked my BS is she felt I was making the right decision about only doing one and she agreed it was a good decision. She is very upfront with me and said listen, you are young, you just got married it is tough enough to lose one let alone two. She said if I wanted to do the other one at a later time I could. I am happy with my decision. It is a bit of a pain to be lopsided right now while I am getting my fills with TE but amazing products out there to help with that until ready for implant. On the upside, I can sleep on my right side sometimes
I hope you find peace with your decision and don't feel pressured to do both if you aren't feeling it.
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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.
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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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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?0 -
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.
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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
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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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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!0 -
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.
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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!
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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....0
