Mar 13, 2019 11:44AM kber wrote:
Thank you for the well researched links and questions. This was very helpful.
Posted on: Dec 24, 2018 12:00PM - edited Mar 23, 2019 02:36PM by Beesie
Years ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. Over time I continued to refine the list and add to it, thanks to great input from many others. Over the years I have posted this many times, and although I don't spend much time on this board anymore, a number of the long-time members here have continued to re-post it when the question comes up. In reviewing the post, I have updated a few of the considerations based on new research, what is now available with reconstruction, and new issues I've seen raised on this board. I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings. I posted this yesterday in someone else's thread but upon thinking about it, I decided to start a new thread instead, so that the post is easier to find, since so many people ask about it.
Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term. Please note that this list is specifically written for those who have invasive breast cancer; some of the considerations are different for DCIS and I posted a similar list for women with DCIS on the first page of this thread: Topic: lumpectomy vs mastectomy - why did you choose your route? (DCIS)
Before getting to the list of considerations, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX or BMX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale, it's important to look at the research to see if that's really true. What the research has shown is that in most circumstances, long-term survival is the same regardless of whether one chooses a LX with radiation, a Unilateral Mastectomy, or a Bilateral Mastectomy. This is largely because it's not the breast cancer in the breast that affects survival, but it's breast cancer that has moved beyond the breast that could lead to the development of a metastatic recurrence. The risk that everyone with invasive breast cancer has is that some breast cancer cells might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy with rads or a MX or a BMX, as a rule doesn't affect survival rates. It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation.Decision Making in the Surgical Management of Invasive Breast Cancer—Part 1: Lumpectomy, Mastectomy, and Contralateral Prophylactic Mastectomy
***UPDATED*** Now, on to the list of considerations:
I hope that this helps.
And remember.... this is your decision and yours alone. Don't make the decision based on what someone else (partner, parent, child, friend) wants you to do or based on what another breast cancer patient did. How someone else feels about each of these considerations, and the experience that someone else had with their surgery and recovery might be very different than how you will feel and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!
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Mar 13, 2019 11:44AM kber wrote:
Thank you for the well researched links and questions. This was very helpful.
Mar 13, 2019 12:58PM astyanax66 wrote:
Awesome list of research! Definitely a great set of readings.
Only my experience: If I had had more sick leave and (sorry, this is just me), not married, I would've gone for BMX. I know there are no guarantees, but it would have eased my mind. I was pretty ragged after 12 weeks of Taxol and 5 weeks of radiation (and there were physical changes as well). I had challenges with the AI, but I'm managing okay on Tamoxifen. I had my ovaries out several years before BC due to benign cysts. Still, things are going pretty well. :)
Thank you again,
Mar 21, 2019 06:40AM ts542001 wrote:
thank you so much for you post.
going today to surgeon, had IDC 18 years ago treated with lumpectomy and rads right breast and dcis left breast - just lumpectomy, now IDC in left breast and seriously considering BMX with reconstruction, have had enought mammo's and mri's dont want more rads.
is there a similar post somewhere on reconstruction - different types to consider, recovery issues, reconstruction after rads?
Mar 21, 2019 08:23AM el7277 wrote:
That is a lot of good info. I am IDC stage 1, 1.7 cm grade two. I will have my last chemo on April 4 (6 of 6) and will continue herceptin every 3 weeks for a year after. I met with my surgeon yesterday and she supports my wanting a double mx for reasons of sanity. Neither she nor my mo can feel anything left of the tumor and will have mri tomorrow. The surgery will tell if it is in fact cPR. I do not want to live constantly feeling and wondering what could be and having mamo and mri every 6 months. It is a very personal decision and not an easy surgery but I have none since diagnosis I would go that route. We all need to do what we feel is best for ourselves for continued wellness...mentally and physically.
Mar 23, 2019 01:36PM jessie123 wrote:
I just had to make this decision and honestly it was the hardest decision I have ever made in my life. This post is going to help a lot of people --- it needs to forever stay in the forefront.
Mar 27, 2019 06:22AM April0315 wrote:
what a wonderful post! I, too, just went thru this agonizing process of making this decision. Ended up figuring out all that you mentioned and linked too, but would have made life easier to have just read this post. Hope it helps others in the future (I’m sure it will). I am doing lumpectomy with radiation on the cancer side and have 2 open surgical excisions on the other side to remove a bunch of clusters of ADH. I am not a worrier by nature and know I will be very compliant with all the follow ups needed. But after trying to sort this out for myself realize how it’s such a personal choice and only the person it’s affecting can make that choice. Still waiting on a surgery date.
Thanks again for the information!
Mar 27, 2019 09:51AM santabarbarian wrote:
I think many of us instinctively lean towards one or the other but I imagine a lot of people are in the middle and torn. This is a very comprehensive list of thoughts to consider.
I am very athletic -- tennis, hiking, pilates-- and part of my leaning towards the less invasive surgery was being able to resume a lot of my loved activities... I felt like MX/LE might make some of that much harder and for me that would be a quality of life issue.
I just finished rads last week -- so I am at *peak* skin irritation from rads, and it's uncomfortable... bad sunburn, w/ peeling. I had 28 sessions which is a lot. But it is tolerable... more tender than painful. I am so looking forward to a healed boob!!!
With TNBC I will get a lot of follow up regardless... I am so happy I kept my breast and I am very happy with the cosmetic results-- enough not to monkey with it further... very good symmetry consideing a chunk of flesh came out. My BS did an excellent job. As soon as the skin heals I am DONE with treatment! Which is exciting!
If radiation is scary to people, re exposure to lungs/heart: look into proton radiation. I was covered for my left sided TNBC. The skin BS is the same as regular rads, but nothing passes through the body. The proton is programmed to go into the tissue of the breast and to release all its energy there. No exit dose. Not every area has a proton center. Mine does not. I went to NJ for mine (since I used to live in NYC and have many friends there.) I was able to have fun with friends up till the last week of rads, and that made it pass quickly.
Jan 5, 2020 03:12PM Cowgirl13 wrote:
Bumping for all you newcomers. The is excellent and should very much help you with making your decisions.
Jan 5, 2020 03:48PM redhead403 wrote:
I had large areas of microcalcifications and density in both breasts. I am older so I could have opted for unilateral mastectomy, tbh I couldn't bear the thought of US, mammogram, and MRIs, some every 6 mos,, followed by biopsies etc. My life expectancy is 16 years based on tables. I am still depressed just being diagnosed with breast cancer. I had a strong family history with no brca but a variation of unknown significance. My mother was diagnosed at 80, Treatment was hard on her.
Jan 5, 2020 06:56PM MinusTwo wrote:
Beesie - so glad this was bumped. I agree, it it an excellent presentation. Thanks
Jan 6, 2020 11:08AM - edited Jan 6, 2020 11:15AM by JRNJ
Thanks Beesie. Three things I want to add that I feel are deficiencies in the system that can affect decision.
1. Radiation with Mx. When I found out lumpectomy automatically has radiation but Mx does not I was very disturbed with this. I don't think any surgery can be sure it got all the "cells". I went for double mx with anxiety, ended up with 2 positive nodes, lymphovascular invasion and extra capsular extension. The RO recommended radiation based on the lvi. I was ready for a fight, but didn't have to. If you look at the NCCN guidelines BINV-D , it states that patients with Mx and 1 or 2 positive sentinal nodes (macro), should have ALND, due to the assumption they are not doing radiation. As surgeons are moving away from ALND, this implies to me Mx should automatically get radiation if no ALND. Guidelines clearly indicate to me one or the other. My BS would not discuss this logically which is one of the reasons why I am not going back to her. I also think nodes with micrometasis should be offered radiation. I shouldn't be happy about having 2 mm in my node to meet the criteria, but spent 2 weeks of SEVERE anxiety over this issue knowing I had one positive node post surgery, not knowing if it was micro or macro, waiting for surgical pathology report. I also asked BS if chest wall would be radiated along with the nodes and she took this as an insult because she got clean margins. Then RO said yes it would.
2. ILC: The studies don't really separate ILC and IDC and don't account for special considerations of ILC. As it is very hard to detect on imaging, especially mammo, doesn't always form lumps and LCIS is not detected on mammo, I didn't want to spend the rest of my life wondering if the imaging was accurate.
3. Post Mx screening: I am also very disturbed that there is no screening for Mx. I haven't figured out how to deal with this yet, except to get silicone implants just to get MRIs, when I really don't want silicone implants. Maybe as time goes on I'll be happy I don't need to get all that screening. But once in a while would be good.
Jan 6, 2020 02:03PM MountainMia wrote:
One other thought on lumpectomy vs bmx -- if someone isn't keen on lumpectomy because of concern of later asymmetry, and wants to do bmx because with reconstruction they might be more symmetrical, that isn't necessarily a problem. You can have lumpectomy in the cancerous breast and reduction in the healthy breast to make it match more closely. This can either be done as surgeries at the same time, or at different points in time. I had my reduction surgery almost 7 months after the lumpectomy and almost 2 months after radiation was over. That was in mid-November. Today I had my final follow-up appt with the reduction (plastic) surgeon. He and I are very pleased with the symmetry and basic aesthetics, and it should still get better from here.
Jan 6, 2020 03:41PM Beesie wrote:
JRNJ, you said: "When I found out lumpectomy automatically has radiation but Mx does not I was very disturbed with this. I don't think any surgery can be sure it got all the "cells".". I would be concerned about whoever told you that rads are sure to be not required after a MX. While that is usually the case, there certainly are plenty of instances where rads will be required, even after a MX. I explain this in the very first bullet of the considerations.
I do mention ILC in my discussion about contralateral risk, but probably should add a better explanation about the screening issues that could affect both breasts, for those who choose to have a lumpectomy. Thank you for this input.
I already have a bullet that discusses the issue of lack of screening after a MX - see the bullet 6th from the end.
MountainMia, that's a good point about the options to achieve symmetry after a lumpectomy. Another thing for me to add next time I do an update. Thanks!
Jan 7, 2020 10:01AM JRNJ wrote:
Beesie, We are agreeing, I was commenting on what you said. "It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation."
I agree with your statement that this is important to note and wanted to highlight it. But also think the system is deficient and guidelines are a little gray, but with the right RO it might be ok. You shouldn't have to pick lumpectomy over Mx in order to get radiation. Radiation is "automatic" with lumpectomy, but not "automatic" with Mx, in accordance with NCCN guidelines BINV-1 and BINV-2. With lumpectomy and negative nodes NCCN calls for radiation of breast area and to "consider" nodes. For Mx, BINV-2 says "no radiation' if tumor less than 5 cm, neg nodes, and margins greater than 1mm. If 1 to 3 pos nodes "strongly consider" radiation, if 4 nodes pos, than radiation.
What my BS actually told me before I found the guidelines is no chemo or radiation with Mx if less than 4 positive nodes, which I realize now is not necessarily the case. There are other considerations. And I was concerned with many things she told me and will not go back to her due to misinformation, lack of information, and many other things that happened. I do know other people with Mx that did not get radiation or chemo. I personally couldn't live peacefully with neither treatment, but I know others feel differently.
Jan 7, 2020 02:32PM Beesie wrote:
JRNJ, thanks for the clarification. That's a very interesting perspective, one I hadn't considered. On this site I have reads hundreds of times (not exaggerating!) comments to the effect that someone is choosing to have a MX specifically so that she can avoid radiation. That leads to posts explaining that sometimes rads will be recommended even for those who have a MX. And I've read so many posts where someone bemoans the fact that she had to rads despite having the MX. So most often, the fact that rads usually isn't given after a MX is considered a positive selling point in favor of having a MX, and people who have a MX expect or hope to not require Rads. You are looking at it from the flip side, noting that rads, including rads to the nodes, is an effective treatment to reduce recurrence risk, and it may be concerning to pass on rads just because someone is choosing to have a MX.
As for chemo, if your BS tied the need for chemo to your choice of surgery (lumpectomy or MX), as well as to the final pathology, that's flat out wrong. If the pathology and/or genetic make-up of the cancer (i.e. the findings from an Oncotype or Mammaprint test) suggests a moderate to high metastatic risk, then chemo will be recommended regardless of the type of surgery the patient had. Similarly, if the pathology and/or genetic make-up of the cancer suggests a low risk of mets, then chemo will not be recommended, whether the patient had a lumpectomy (with or without rads) or a MX (with or without rads). This is standard practice and isn't some unusual treatment protocol, and it's scary if your surgeon presented misinformation about this. A good reason to not go back to her for sure
Jan 7, 2020 02:40PM Cowgirl13 wrote:
JRNJ, it sounds like a second opinion could be very helpful. I found my oncologist who was a second opinion for me. Absolutely love him and have been with him for 10 years.
Jan 8, 2020 06:50AM Badluckbdaygirl wrote:
Wow! I just read this thread and it has a lot of good information. When I found out I had BC, I immediately decided for a double mastectomy and never waivered. I’m glad I wasn’t on the fence and had to decide. I think we all have our reasons. I am 46 and have been dealing with call backs since 31. The anxiety wasn’t worth it and my lifetime risk is 30% so I felt that even if they got this one out, I would inevitably get it again. My breasts are extremely dense. The crazy thing is after MRI,s 4 mammos, ultrasounds, etc. they never found the LCIS/DCIS next to my invasive until after the surgery and even my BS said the LCIS alone, he thought I made the right decision. I just couldn’t deal with this process again even if it continued to be early stage. Now don’t get me wrong, I’m in the reconstruction phase and it’s not easy.
The one thing I do struggle with is no recommendations for rads or chemo. Will Tamoxifen be enough? I am going to question my MO when I meet her next week as apparently they don’t even want to give me an Onco test which I will demand.
I will say that I have had several women whom are dealing with it again and told me they wished they had taken them off the first time and many of these women alsohad rads/chemo. I think it’s all a crap shoot in the end.
I wish it was more clear cut because so many of these studies conflict with one another it seems. Just like what foods to eat😂
Jan 8, 2020 09:53AM - edited Jan 8, 2020 10:03AM by JRNJ
Beesie and Cowgirl13, Yes, I wanted to be aggressive and saw radiation as an effective treatment. But am getting a little scared now of side effects such as lung cancer since I have smoked casually. And need to work out reconstruction around treatments as already had one failed attempt with infection, but feel like cancer treatment is the priority. But regardless of bad BS, RO was clear right away, after I finally met him 2 months after dx, he recommended radiation and I didn't need second opinion. My chemo story is more complicated and discussed on other threads. The short version is I fell into a gray area, and wanted to be aggressive. MO sent me to Rutgers, they said no chemo. I wasn't happy with this so went to Sloan for another opinion and they said yes to chemo, but CMF, which I am doing now.
Also note, I think the studies showed overall survival similar, but local recurrence much higher with lumpectomy. You can correct me if you've seen otherwise.
Badluckbday, I struggled with this too. You shouldn't "give up" radiation because you decided mx. But I have positive nodes and you don't, so hopefully you'll be fine. But I made the decision not knowing if I had positive nodes, and stressed about no radiation. Although my BS was saying lumpectomy for a while, due to my huge LCIS that kept getting bigger in different scans, in the end, I had to get the mx in right, left was voluntary.
Jan 8, 2020 11:16AM dysonsphere wrote:
I need to decide about my upcoming surgery very soon. So far, I'm leaning toward a lumpectomy with a bilateral reduction/lift, followed by radiation. My initial reaction was to have a BMX with reconstruction. However, the BS seemed to think it was too radical for my diagnosis. Since my visit with BS, I've read a lot of research that seems to agree with her. There isn't any significant improvement in the recurrence rate and I will be saying goodbye to my natural breasts forever. I think its an almost impossible decision to make, sinceI would have to lose my breasts forever when there is a 3%ish chance of recurrence. At the same time, will I regret it 5 years down the line. Ack!
Jan 8, 2020 11:39AM Badluckbdaygirl wrote:
It sounds as you have been through the ringer. I agree with you that that has been my understanding. I also noted you had LVI. If I had, I would be opting for rads/chemo. It’s sounds like you’ve done all the right things.
dyson, my mom did lumpectomy and rads six years ago and is fine. She second guesses it sometimes, but for now is on the clear. The doctor explained to me (when we thought we were only dealing with a small IDC), that lumpectomy with rads and a double mastectomy had equal outcomes for survival and I agree that literature supports that. I felt with my density and young age (if I were my moms age I probably would have chosen differently), I was bound to get it again and he agreed there was a higher chance. And, at least for that one breast, I did do the right thing is I probably would have had to go back and get a uni anyway after finding more during surgery. A lot of mine was centered around anxiety and he said having my density naturally increases my rate of breast cancer anyway and I’m nowhere near menopause and mine was er. I think you are making a good decision. A double is a far greater surgery with more risks.
There doesn’t seem to be a right or wrong answer for surgery or treatment. It’s crazy🙄
Jan 8, 2020 12:52PM - edited Jan 8, 2020 12:56PM by Cowgirl13
I don't want to hijack this thread as my post is about rads but I just wanted to say to JRNJ that I am 10 years out from radiation and I haven't had any side effects (this far). My tumor was left side at 2:00. I was 63 when I had radiation and had the hypofractionated protocol which is about 19 rounds. It was very easy and I didn't have any burn or blisters. I slathered Aquaphor on my breast and under my arm. Again, I don't want to take away from the intent of this thread as it is about Lumpectomy w/Rads vs UMX vs BMX. I should post this in the radiation thread.
Jan 8, 2020 02:35PM Beesy_The_Other_One wrote:
Sometimes, the location of the tumor is what dictates rads, even with an MX. Within fifteen days of diagnosis my tumor exploded in growth and an MRI indicated it had invaded the nipple (when it was nowhere close at the biopsy). Even though I had a BMX and had a complete response to chemo, the concern that it could have gotten into the skin (like inflammatory), was what drove radiation in my case.
JRNJ, I found radiation to be the easiest part of my treatment and I had a full thirty with boosts. Where I received radiation, the technology they use to protect your heart and lungs is similar to what the military uses with surface to air missiles. In NJ, you should be able to find a place that does everything they can to protect your heart and lungs.
Jan 8, 2020 07:44PM JRNJ wrote:
Badluckbday, Cowgirl13 and Beesy: Thanks for the radiation support. On right side, so easier on heart. My main paranoia is lung cancer. My mom died of it. But she was a heavy smoker. And yes, LVI was my ticket to radiation. Which disturbs me because NCCN guidelines also recommend it for positive nodes and I don't know if they would have given it to me without the LVI, but I can't keep dwelling on it, I got what I wanted. But that is why I commented on this thread, because the "system" is inconsistent regarding lumpectomy vs. Mx.
Dyson, Its a really hard decision, I dwelled on it for a while. I was almost swayed by wanting a tummy tuck, lol. My PS told me single Mx, we can do DIEP, double I need implants. But in the end I didn't want to worry the scans would miss something for the rest of my life. But I have ILC, which is harder to detect. You need to follow your gut. I didn't know there would be so many decisions we would have to make. That is the worst part.
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