Posted on: Jun 13, 2013 12:54PM
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.
Posts 241 - 270 (327 total)
Feb 13, 2018 11:53AM Ladymalu wrote:
Thank you for your kind words everyone.
Just for clarity tho:
I am gettin Dbl MX to HOPEFULLY avoid the chemo, radiation, and further Mammograms to follow the Method of Operandi I’ve been experiencing in previous biopsies.
Your support through empathy and not sympathy means more than you’ll know....or maybe you do.
❤️
Feb 13, 2018 01:06PM Rrobin0200 wrote:
I chose a BMX to hopefully avoid radiation and tamoxifen. I wanted the most aggressive approach possible. I didn't want to go through mammograms, US and biopsies again. I didn't want to have to worry about the what ifs.
That being said, I know that what ifs still lie ahead. BUT it was for my peace of mind and I have zero regrets.
Feb 22, 2018 05:29AM - edited Feb 23, 2018 03:42PM by Linda19152
Feb 23, 2018 07:42AM Faithonfire wrote:
Hi,
I thought I would check in with some fresh perspective on this topic after I had made my choice to get a skin saving nipple saving double mastectomy January 9 after finishing a total of 16 rounds of the strongest treatments of chemo started July 6 for braca2 stage 3 invasive ductal carcinoma with an unidentifiable mutation.
Our goal here was to treat me as quickly and aggressively as possible to keep me encapsulated so I waited until the largest tumors shrank enough to be safely removed before reconstruction surgery that had already hit my lymph system on left.
I agreed to use the same team of doctors that cured my mothers breast cancer 3 years ago with just radiation and a lumpectomy but failed to test for Barca 2 at the time because insurance did not deem it worth covering back then!!! They NOW will be testing our entire genetic line that requests it free of charge as a START to making it up to me!
If I had a chance to plan my options at ALL I would have opted for radiation first then a double mastectomy the same way but even that was more humane than I could have hoped for. I would have been more receptive of the idea of giving up the additional 3 organs that function fine fully disconnected and are disease free currently. It strikes me as arbitrary and insane of a expensive legal demand made of me during treatment of my disease as forcing me to pay for several pregnancy tests knowing full well it is NOT possible after a documented thermal ablation in 2008 on top of complete current celibacy! I’m a tad insulted by the implications the insurance company’s like to use to challenge coverage promised by calling it voluntary or experimental or not worth covering!!!
One issue at a time I will set it straight rest assured but the most frustrating and misleading reason to have a double mastectomy is that it eliminates ALL future risk of returning. I thought that too at first but even the relief of knowing I will NEVER endure another painful breast biopsy made it all worth it to me! I had been staked for years in a row for my calcifications and told they were all benign and could NEVER cause breast cancer back in 2009!
Not one of them can look me in the eye to this day knowing I could never sue anyone for that level of ignorance not to mention how many years of agony it put me through just to obtain the validation of a proper diagnosis in time to save my life at all!! I want every doctor alive to remember ME the day they fork over their malpractice insurance payments!
For those who had lymph system damage like me it does NOT because it is systemic system and resides beneath the rib cage as well so while reducing risks is a positive goal, we need to be honest about the degree of total risk reduction obtained on a case by case basis ONLY!
No two patients respond the same to treatments of all kinds so it needs to be a much more responsive process interactive to all that data they live so much to charge for testing only to ignore the results if they even arrive in time to matter to the patient paying for it ALL!
Remember these people ALL work FOR you and if you don’t like the treatment of the week they are pushing without providing accurate ranges of options or valid studies WITHOUT financial incentives to recommend less safe and much more expensive options PLEASE feel free to WALK away and find a second opinion from a honorable professional who has the respect to discuss your options free of personal bias and willing to show you the respect you deserve during your experience with them from start to follow ups!
Best of luck to everyone
I’m in and out of the hospital with minor complications but still not out of the woods yet because the unexplained weight loss is getting worse and nobody can tell me why. Feels like square one again but bald hated and humiliated for ALL the promises that have YET to come true for me. I guess it was my fault for believing in people I trusted with the care of my life to at least have the decency to be honest with me about it.
I’m doing my best to change things by forcing answers to be applied to SOLVING the problems instead of becoming just another opportunist trying to make a buck off it all! Every dirty payment received to perpetuate human misery for profit will face the price one day and I know it could never be worth the cost of being caught delaying a potential cure for profit!
I think that’s worth more to me than any amount of money
Mar 16, 2018 02:34PM dh1124 wrote:
Hi Bessie, I am in the midst of making this decision as well. I have a large calcification area 7 cm in one spot mid breast and i am fairly large chested. My doc seems to think she can still do a lumpectomy. I do have 40% dense breast but my breast doc says she has no problem seeing in my mammograms. In all my 6 core samples I only had 1 with less than a mm of dcis. and my doc says the core samples were all on the mark. So she think the dcis may be small it is just i have a large calcification. Have you heard of this before ?. i am 56 with no family history of breast cancer .. my dcis is er and pr-- and grade 3.. I have been told by a radiologist friend that a great percentage of er and pr-. is grade 3. If i go the lumpectomy route i have heard more docs are taking the sentinel node just to make sure.
Mar 16, 2018 02:53PM Ingerp wrote:
dh--just adding one more data point. My lumpectomy two years ago was 8cm x 6cm x 3.3cm. I still have a lot of my breast left. I was also DCIS, ER-/PR-, Grade 3. My mother had what was probably DCIS around age 62 (and she's doing great at 89) but no other cancer in my family. My BS said it was 50/50 as to whether to check the sentinel node so I said let's not. It would have been negative, and I am pretty nervous about LE. I also elected to go lumpectomy this time. I like my breasts and will only cut them off if that's my only option. (Fingers crossed it doesn't come to that.)
Mar 16, 2018 04:35PM Faithonfire wrote:
hi Bess, Dh,
My mother had a lumpectomy 4 years ago on her right side and radiation without chemotherapy and she is running laps around me these days! Her breasts were not as dense as mine but she did not have such an advanced case of idc so she got to keep all her lymphs. The difference of recommendation between what they thought was best for a genetic identical disease in a woman 35 years older than I was when diagnosed shocked us both!
My case was the same identical form of braca 2 breast cancer that she and mine was twice as aggressive and I believe it was because I only breastfed 2 of my 3 children and had to bind off as a triple d cup and it was shortly after that my calcifications presented as a big problem!
I only lost 3 sentynl lymph nodes on my left side but both my nipples had calcifications I had biopsies for years and they all came back fine and not cancer but back in 2008 they claimed that the medical community did not KNOW calcifications CAN turn into invasive ductal carcinoma back then so a lot of our time spent in diagnostics were wasted checking wrong systems instead.
The fact that the insurance company did not deem the genetic test medically relevant enough to cover at the time so I let them know that a simple blood test could have saved my life MUCH sooner so they will now cover my entire bloodline free of charge whenever they ask now!
Sometimes family history can lead doctors astray without proper context or other members tests to compare as both my parents had colon cancer too
Point is, I got a double skin saving mastectomy and I am one of the first trials of a nipple saving procedure after all the calcifications were removed and they were banked just above my c-section scars so if they pass the integrity tests and can be used they will be replaced when my permanent implants go in, if we can’t use them the repair tissue will be taken from graft removal site to create replacements with fresh tissue as they do now anyway.
I did not even think I was able to be considered but it is going great and I am very happy to have the opportunity to advance the field at the same time!
I wish I could have avoided the double mastectomy but I had very few options left by the time I was diagnosed properly.
If you just want them to look the same after a lumpectomy and you were a larger cup size like me they can do a simple uplift which makes them even with surgery but no implants at all, just shifting your own skin and fat around to fill the divot as my mom calls it! She didn’t have any reconstruction at all and you cannot tell even in a swimsuit so it’s a personal choice that must consider health first in my opinion.
I gave up my mostly healthy right breast organ so the genetics pathology department could study the progression of my disease better and I knew my odds of recurrence was so high it wasn’t worth trying to save after seeing so many women in our family have to have the other removed in under 5 years when they tried.
Hope that gives a little perspective for you and it took me 4 interviews before I found a breast reconstruction specialist I was willing to let work on me and she was more informed about new techniques than anyone else in the state!
Best of luck to you and before deciding on ANY surgery... make SURE you see images of their previous work before deciding ANYTHING and I highly advise taking someone else to the meetings because it’s critical to have an advocate by your side for later review of all the information.
Mar 16, 2018 05:02PM strawberrybubblegum wrote:
LadyMalu, MX doesn't mean you can avoid radiation 100%. I had unilateral MX and the margin wasn't clear so BS recommended radiation. I told her I needed another option than radiation. Luckily, my uncleared margin was close to skin, so we had another surgery where she took out a big piece of my skin and cleared the margin. So no radiation is needed for me.
My point is, MX doesn't mean the margin would be clear; it doesn't mean you don't need radiation. There're many cases in this community who had BMX and were asked to do radiation. There're couple cases where patients had BMX and still had a re occurrence. This sucks. I wish I had known this before I had my MX. Knowing this probably wouldn't change my decision, but at least I could have set my expectation right.
Hope you recover well!
Mar 19, 2018 08:06PM dh1124 wrote:
How did you take radiation . ? any side effects and what kind did you have ?
Mar 20, 2018 03:09AM Faithonfire wrote:
hi dh,
I am still on the fence about the discussion about radiation or not but I am not done with surgery reconstruction yet so I just decided to start tanixafin pills in meantime because I had a 95% clear rate but they recommend rediation follow up post surgery for anyone under 98% clear or a total response which are rare from what I hear.
My mother chose radiation instead of chemo after her lumpectomy but no lymph contamination like me either.
she already had chemo and surgery once with colon cancer under 10 years prior and was late 6o post menapausal so we both want more information on ovary removal benefit vs risk and quality of life is a primary question we are seeking more accurate information about our braca 2 diagnosis and what their recommendations are currently being based on.
I’m keeping an open mind and being as proactive as I can while I have healing problems that delay everything else and it’s frustrating but I feel much better armed with the most accurate information to base my decisions on because when we KNOW better we DO better!
Best of luck and prayers for a safe and speedy recovery to you all!
Mar 20, 2018 01:41PM Faithonfire wrote:
hi dh,
My mom said the side effects were much better on radiation only vs chemotherapy. She described skin irritation no worse than a sunburn, slight sensitivity to light so a good pair of sunglasses helped a lot and mild thinning of her hair. She didn’t watch her hair come out in fistfuls like I did on chemo even when she lost all hers the first time so it was easier for her to experience herself than to see me and help me go through it but beautiful you charity really helped us both embrace the changes that we know are only temporary with the best care in the world from these wonderful people helping us on our journey!
I hope you meet many amazing people on your way to making your choices and fighting through each day one at a time
Hope that helped but I’m just so CLOSE to not being within their official recommendation margins for radiation therapy that the clinical study being done right NOW on the total benifet vs risks we know are severely increased with reconstruction mastectomy patients and heart damage of direct beam exposure is enough to make me decide to NOT do radiation before study confirms my theory years after I up my risk factors even more proving it! I’ve not got enough life left in me to keep doing that bereft if any compensation other than a half hearted apology of the medical community caught delaying updating treatment methods for pure profit at cost of future health of patients! I’ve lost enough generations of my family to such nonsense holding up TRUE progress in the industry. I can’t put a price on that but it hardly means it’s FREE or a pass on morality showing up to demand recognition of the damage such mistakes make to REAL cases like ours!
Proton radiation therapy is much more precise but only cleared to use in infants not adults because it’s cheaper to fry an adult than take the time to adapt a very promising field expansion for delicate work as is in tiny bodies already deemed worth the cost of proper treatment doses when they can still get away with learning from the mistakes they can profit from until held accountable one legal groundbreaking case at a time!
Wish me luck and I wish you all the same as you seek what is best for you and your care plan!
Apr 1, 2018 04:41PM atomicblonde wrote:
Ingerp- thank you so much for your post. I’m having a lumpectomy this Friday. I have a ~3 cm tumor per mammo and ct at 1 o’clock. surgeon says by feel she’s thinking 5cm. ??? I had to walk this back from a presumptive mastectomy to lumpectomy, and mainly thanks to courage from posts like yours. I’ll get to keep most of my lymph nodes, no small thing. I just couldn’t rest w post mastectomy decision of implants or big rebuild. Until it dawned on me that I might be facing a false dilemma.
I’m overflowing DD. She’s saying loss of 20-30%. So what’s that, a D ? I have PS doing the closing and reshape of the other. I’m hoping for great results.
So thanks for the help ! I really appreciate it.
I have built my profile yet so apologies.
E+P~HERS- Grade2. <3cm.
atomicblonde since the 90’s...
Apr 1, 2018 05:23PM Ingerp wrote:
My BS said I’d have a “shark bite” when all was said and done but honestly I don’t think about it. The incision was a little below where I can see it without looking in a mirror so it really is not in my brain space. Still healing from this most recent surgery but it was a smaller chunk than last time so, again, I think it’ll become no big deal.
Apr 3, 2018 04:15AM jaymeb wrote:
Hi FaithApr 9, 2018 11:29AM CarlaJG wrote:
Hello. What surgery (lumpectomy or mastcompy) did you specialists recommend?
Apr 9, 2018 12:39PM - edited Apr 9, 2018 12:49PM by Lula73
CarlaJG-Unless you test positive for a BC gene or have multipe areas throughout the breast/large area of the breast,they often will not point you in one direction or another. It's up to you.
Apr 9, 2018 02:02PM Paco wrote:
I don't understand something: those who have chosen mastectomy over lumpectomy to avoid radiation, I get. But I don't think a mastectomy is a replacement for both radiation AND hormone therapy. As far as I understood it, the radiation and lumpectomy OR mastectomy is to reduce the possibility of a local recurrence while the hormone therapy (Tamoxifen or AI) is to prevent distant recurrence. I think hormone therapy is still recommended for some after mastectomy.
Apr 9, 2018 02:36PM Lula73 wrote:
I think for DCIS some can skip hormone therapy. Those with triple negative obviously can skip hormone therapy. And some women look at their oncotype score, run the numbers and decide that the risk of recurrence/mets difference between taking hormone therapy and not taking hormone therapy is so low that it isn’t worth it to them and they skip it. Everyone has to make that choice for themselves. In my case, even though my numbers came up low for recurrence/mets I still choose to take an AI because I’ve already fallen into the bad side of a low risk category: The average risk for a woman to develop breast cancer in her lifetime is 12%. That means that the average chance of a woman not developing breast cancer in her lifetime is 88%. Sounds like very good odds that you won’t get breast cancer, right? And yet, here we are...
Apr 9, 2018 04:06PM amygil81 wrote:
My DCIS was in several places within my breast, so I had to go straight to the mastectomy. I was sorry to lose my breast, of course, especially the sensation from my nipple. But I'd survived bone cancer as a teen. My breast surgery was small by comparison, and I didn't need chemo. I cried plenty when I saw myself one-breasted in the shower, and again when I got fitted for my prosthesis, to fill out my empty left bra cup. But it could have been far worse. Living with only one breast is fine for me.
This is an intensely personal decision, and only you can decide what is right for you. I wish you the best in figuring out what that is, and in all your BC journey.
Jun 14, 2018 09:51AM - edited Jun 14, 2018 10:01AM by ctmbsikia
At the 1st consult with the BS she said to us, this is totally treatable. Stats of mx vs lump + radiation were the same. For me, which I understand it's a very personal decision, I went the less invasive route. Well, plus it was football playoff season-the thought of watching a game in a hospital was just not going to happen. I wanted in and out same day and wanted a shorter and easier recovery time. Turns out 4 days post op my team won a super bowl and I went to the parade!!! I was euphoric to get that off my bucket list!!
Recently had my 3 month follow up and am doing well. I was happy to see my diagnosis as DCIS listed 1st now and all those invasive words on my pathology are just that now, words, it's all gone and I am feeling well. I off to MO next to start hormone therapy which I trust will be added protection for these abnormal conditions in my breasts to not grow any more cancerous tumors!
Best wishes to all, happy Thursday!
Aug 12, 2018 01:48PM zandra1213 wrote:
I opted for mastectomy for both breasts. I have lived with biopsies and suspicious mammograms since age 18. I am. 66 so maybe having mastectomy with reconstruction was easier decision. Once I realized cancer was growing in my right breast I wanted them off of my body. Living with suspicious breasts I had already made the decision I would have both removed if I got cancer. My sister had breast cancer at age 35 and mastectomy and a survivor. She had the other one removed later because having suspicious mammograms is torture.
Aug 12, 2018 09:03PM Moderators wrote:
zandra1213 thank you for sharing your experiences. Your story, and that of your sister, can be very helpful to others. Please keep sharing. 
Sep 26, 2018 11:56AM Elena1963 wrote:
Hi
In April 26 th I heard that I had cancer. MX of right breast was done , the report displayed non invasive caner, DICS . ER+/PR+ . I was recommended
Letrazole for 5 years. Another opinion from another Doctor -was MX is enough ,no pills. I am not taking pills ,but I am in doubts if I am on the right way or not.
What do you think who had DICS ER+/PR+ .Are you taking hormone pills?
Sep 26, 2018 03:04PM tlfrank wrote:
I had DCIS grade 3, lumpectomy, radiation followed by Tamoxifen.
Sep 27, 2018 02:15PM Elena1963 wrote:
But did they offer you an option , for example,MX, without radiation and Tamoxifen
Sep 27, 2018 04:43PM MBPooch wrote:
I was diagnosed with DCIS and Pagets last October and opted for a BMX with direct to implant. I'm in the Chicagoland area and went to one of the best oncologists. Lucky for me he is also the husband of a good friend of mine. He assured me that without an invasive cancer there is no need for radiation or tamoxifen. He stressed this multiple times. I had a sentinel node biopsy done on the affected side that was negative. When he called to give me my final pathology report he said I'm fairly certain I will never see you in my office again, go on and enjoy life! I don't know if there would be any difference between having a single or a double MX but I'm not sure why that would make a difference. Of course there's always that little voice that makes you second guess every little ache and pain but for the most part I don't think about cancer every single day anymore. Wishing you the best!
Sep 28, 2018 08:04AM Elena1963 wrote:
Thanks MBPooch.
You wrote that had BMX,one was prophylactic?
Sep 28, 2018 03:53PM Tresjoli2 wrote:
https://community.breastcancer.org/forum/68/topics...
Beesie in my opinion had the best guidance for thinking about Mastectomy vs. Lumpectomy...
Dec 1, 2018 07:51AM lila3357 wrote:
Hi Beesie,
I have read your posts over the years as I go through my own journey. I was diagnosed with DCIS high grade and ADH in the left breast in 2010 and had lumpectomy and radiation. I was told had both areas been DCIS that would not have been an option. Since then I have gone through what my Dr's call a "vigilant" watch.....which include, on average 6 month mammograms, ultrasounds, etc and as a result some negative biopsies and 2 lumpectomies (right side) for ADH (high grade,in fact there was some debate (different pathologists)if one was actually DCIS. Earlier this month I was diagnosed with high grade DCIS now on the right side and am faced with the decision of lumpectomy, radiation and most likely hormone therapy to follow OR going for a mastectomy...i would choose bi-lateral. My Drs support either decision and ultimately leave it up to me to determine what i will feel most comfortable with.They believe that statistically the survival rate, etc are identical. Soooooo, here i am really struggling with which is right for me! I "think" that taking the lumpectomy route is sort of the easy way out bc i am familiar with the process, but that at this point MX is the "wiser" decision, but I am more afraid of the unknown and all the difficulties associated with the more difficult surgery and reconstruction. Anyway I am looking for any insight, that might help me one way or the other. I really feel stuck in my own head at this point. Meeting with my surgeon again on 12/6 to have a long conversation and to hopefully schedule surgery and make a plan.
Appreciate any thoughts
Jan 18, 2019 06:11AM ucfknights wrote:
hi girls.
My mom was just diagnosed with DCIS high grade and it’s <1cm. We are doing lumpectomy and 5 day partials rads.. radiation begins if the margins are clear? How long does one have to wait for another lumpectomy if path results don’t come back clear?