Treatment decision
I had a lumpectomy 3 weeks ago, and 3 of 6 margins were not clean. Based on information I found on this discussion board, I requested an MRI since it can be helpful in assessing the extent of high-grade DCIS in dense breast tissue. I saw the images today and there are 4 linear paths going from the excision site on the outside of my left breast toward the nipple. There was scatterd stippling and other areas of enhancement detected in my right breast, but the radiologist thought this could just be monitored with MRIs every 6 months. Based on the MRI images, I have a hard time imagining that I will get clear margins the second time around and mastectomy seems much more inevitable. However, now that I'm actually faced with this decision, I feel inclined to try the re-excision. Any advice?
Comments
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There is no harm done if you try the re-excision. If the margins are clear, great! And if they are not, then you move on to the mastectomy. The only downside is the possible extra surgery, but for many women, this "extra" step does turn out to be all that they need (in other words, they do end up with clean margins). For others, this "extra" step can be really helpful in coming to terms with the need for the mastectomy.
As long as you are realistic and you know the possible next steps, I believe it's always best to follow the approach that is most the comfortable / easiest to accept for you.
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This is something that we can't really decide for you, however we can give your different perspectives. You could have the mastectomy and a DIEP. That would get rid of belly fat and you would have to worry about needing more surgery later. With the re-excision you may need more then more and have to keep checking that breast.
Whatever you decide you will have support from here. There really are a lot of great people on this site.
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Thanks for your responses. Today was the first day that any of my medical team conveyed to me that a mx would be a reasonable option. they also said there is a chance that the lump would be effective. It's hard to take it all in.
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If you choose the lumpectomy over the mx, that buys you radiation. However, you may need it anyway. It is very hard to take it all in. Consider having someone go with you so they can remember some of what was said. There is a study that was done that we only remember 30 to 60% of what the doctor told us.
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I think that I'm just not ready to make the decision to have a mastectomy yet. I think I have to try the re-excision just to know I did everything I could. There are pros and cons for either path, but the time out of work and additional surgeries needed for the mastectomy & reconstruction are worrying me.
Thanks for your responses -- it's so helpful!
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I just had to make this decision. I went with the re-excision. I am not sorry, although for me it was more painful than the first surgery. I did not get clear margins and have just had a mastectomy. Three surgeries in a row did take a lot out of me, but I am comfortable with my decisions. Make sure no matter what you do, you recognize that you made the best decision you could at the time and never look back.
I was also not ready to make the mastectomy choice. I also wanted to feel that I did everything I could to save the breast. Round three, I really didn't have a choice. I know I did everything I could, and this time around there was no questioning the MX option.
I also had an invasive lump removed, so we don't have similar pathologies.
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Thanks, vballmom! I apperciate your perspective on this, and your comfort with your decisions is a comfort to me.
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Lastar... This is indeed a very personal decision. Vbalmom said it was improtant to her to try and save the breast... My first BS always follows that line of thinking... But for me, I was less concerned about saving the breast and more concerned about making the right choice for ME... knowing I am a worrier, knowing I would need another surgery to remove a pappilloma, knowing I would need radiation if I didn't have the MX... ALL of my 4 doctors told me all I needed was a lump/rads, but I wanted to be aggressive and not have to think and worry going forward... in the end I had a BMX and Hip and DIEP flaps. I can honestly say I had no pain after my MX... was driving 2 weeks post op. It is exhausting, but for me I looked at it as short term "pain" for long term gain... I gave a small chunk of time last summer for the surgery, but now and for the next 50 years, no more mammos, MRIs, biopsys, and hopefully, no more worry.
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Betsy, I agree with you that we each have to make the choice that is right for us. My choice would have been a lumpectomy but unfortunately I didn't have that option. So I had a single mastectomy, choosing to keep my healthy breast. Six years out, I'm happy with my decision but I still would have preferred to have had the lumpectomy if only that had been an option.
There is one thing that I want to clarify from your post. Having a MX or BMX does not necessarily mean no more MRIs, biopsies, and no more worry. Only about 1% - 2% of women who have a MX will develop a local recurrence or new breast cancer, but a greater number will have MRIs (to check for chest wall recurrences and for those with implants, to check the integrity of the implant) and require biopsies. Having a BMX unfortunately does not mean no new lumps or lesions, and it's not a guarantee against breast cancer.
lastar, if you are not ready to have a mastectomy and if re-excision has been presented to you as a viable option, then there is absolutely no reason to not go that route. From what you've been saying in all of your posts, it sounds as though re-excision is the approach you are most comfortable with. If that's the right choice for you, then do it and don't let anyone else's opinion cause you to second guess or question you choice. Only you know what's right for you. Good luck. Hopefully you'll get clear margins this time round.
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Bessie... for me, since I don't have implants, I will never have another mammogram... that is something I know for sure... and my MO says no more MRIs, although I would like them just for the reasons you stated... and I said HOPEFULLY no more worry... I am aware that I have a 2% risk of local recurrance.
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I am still considering both approaches, mostly because I didn't get the most confidence from my BS that the re-excision would be successful ("we can TRY"). He tends to be a bit conservative in what he takes, and I don't think that he will try to get all of the areas shown in the MRI as suspicious. I was under the impression that recovery from a MX can be as long as 2 months, but friends are telling me that 2 weeks is more accurate. I am also considering how I would feel after a successful re-excision, and I imagine that there will still be a lot of worry about recurrence. My husband and I were in bed writing out the pros and cons to each treatment over coffee this morning. His mom is an ovarian cancer survivor, and she and all the gals think I should go MX because they have seen this all too many times now. I'm going to talk with my BS again this week and try to pin him down a little more on what he plans to do and what he thinks the odds are for a successful outcome.
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Recovery can vary greatly... I can say that after the MX, my range of motion was a work in progress for about 2 months, but never had pain, and was off pain meds after 3 days... and as I said before was driving at 2 weeks... I had other issues (like lung pain from my lung not fully inflating due to anesthesia, infected port (from chemo) that needed to be removed and gave me a fever and drains in my hips from a hip flap) but recovery from the MX was not that long. I had my hip drains for 8.5 weeks, so that more than anything kept me from returning to work... plus I had an incision open and needed a do-over on my recon on the right side one month post MX... In the end I returned to work 9 weeks post MX, but that's because I could and I had those drains... all other drains were only in for a week or two.
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been trying to follow the thread.. but Bdavis (Betsy) you didn't have DCIS correct? So it could be argued that you made the decision with a much more aggressive situation than the women here?
Ladies I could give you my experience with a BMX and I can promise it was very different than bdavis.. that's the thing.. we could all go back and forth with this "it was good" "it was bad" but in the end it is WHAT YOU need, require, can handle... Please consider speaking with a therapist so that you can hear your own voice!
Best of Luck and take good care! Deirdre
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I really appreciate hearing the wide range of stories. That is something that I have really appreciated from this site and it has prepared me for the long road that treatment can be. I went into this thinking that I would have a lumpectomy then rads and be done by the end of June! You ladies have taught me that it's not always straightforward and simple, and that has been very valuable.
Speaking with a therapist is a good idea. I will contact my nurse navigator to see if there is someone who works with BC patients in particular.
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Deirdre... That is true.. I did not have DCIS, I had IDC.. and that is why we all need to make decisions that are appropriate for ourselves based on OUR diagnosis, OUR personality, OUR approach to difficult situations... I know ME, and know that after doing a wait and watch with ADH for 14 years until if finally was cancer was not something I would want to repeat... So the same could be said for DCIS, or not... We all have our own history that molds our future and so what's good for the goose is not always good for the gander so to speak... Lastar should just read everyone's input and decide which path is best for HER and HER diagnosis. No debate there.
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(bdavis) Good then we agree - it is such a very personal decision that one size doesn't fit all... It's a very important part of the decision making process to totally understand that THIS cancer is DIFFERENT from THAT cancer... and one's family history (both genetically and environmentally) is so very different as well!!!
Lastar.. good for you! I never understand why when the medical community starts giving us list of experts to see they don't include a therapist... I'm sorry this is so difficult and I wish only the best for you and the best possible outcome for all!!!
Take good care of yourself!!! Deirdre
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Hi lastar. With my dcis I went in for the re excision as I didn't mind the surgery at all the first Time so I thought why not try it. They were so sure they'd get the clear margins because they were close the first time. But they didn't . Found dcis everywhere in my breast. Very small spots but high grade and a lot of it. One surgeon said it looked like a shotgun went off...so then my decision was made for me. But it seems there is always a decision...then it was what type of reconstruction and could t decide to do one or both breasts. These forums do help a lot although there was a point when I had to step away from the Internet but as I became more accepting of all this I returned. I have decided last week to do both seeing as only 3.5mm of all this high grade dcis is all that ever showed up on my mammogram that whose to say there isn't any in the other one...so for me I feel better having it off but like everyone says its what is right for you. I am having the diep procedure. And they will test my nodes at the same time. This is stressing me out even though I am glad someone is finally doing this test, I just keep surprising them with results. Now that I have decided and met a few women who were more than happy to show me their diep breasts I am completely comfortable with my decision. They looked great I have to say and the tummy tucks were quite amazing. It's a big surgery though and maybe with any luck that will be it. Well I might get nipples made when I'm allowed after that but I don't think that's a big process. Haven't researched that yet. My friends were so happy with their diep they weren't even going to do that step...to each his own is the theme here
good luck, the right decision will come to you, it's a slow process.
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Lastar--there is so much info for u to digest--but in the end it will be u'r decision alone and I'm sure whatever u do decide it will be in u'r best interest since u are doin so much research. We all wish you the best and this has to be a very hard decision to make--when they offer options--my mind would be all ovr te place. Good Luck
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lavendarlady.... I am a BMX/DIEP/Hip flap girl here.. the diep results are indeed amazing... good luck to you... and you can actually get excited about the transformation. Have you seen the pictures n Tim Tams photo gallery?
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No, is Tim tam a person on here? Or is it a website? I am partly excited just wish I knew if my nodes were clear. That's playing with my head big time. I can't get over how nice the results are I have seen.
Chemo scares me so much, yet so many of you have done it! I think of the kids I know who have done it and i think if I have to I will just deal with it but I hate to even type the word. Trying to be positive...I mean it's dcis.....non invasive!!! Have had two good size biopsies and that is what it has remained. I must have lost a 1/2 cup size because that breast used to b that much bigger but now it actually matches my other one. But I can't wait to get them off. -
To BCO:
Disrepect is in the eye of the beholder. Your removing threads about alternatives because they are not pro chemo is really revealing about what you care about. It is not the women on the forum.
You, moderators, are censoring anything that does not align with your beliefs of a chemo only approach. You are NOT doing those of us who are suffering from breast cancer any favors, and we WILL and have found alternatives despite your Gestapo tactics. Ban me, do whatever you want to. Your not allowing newbies to be able to read all options is what is scary. To limit these women is criminal. Hope you sleep good at night but then I guess you would with all your pharma connections.
You allow disrepect by allowing rudeness to prevail....you haven't banned Black Cat, orange or digger have you? How much do you pay them to monitor the boards?
YOUR tone is nasty, invasive, controlling and scary. Why don't we make BCO stand for Best Chemical Options????
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lastar, you say "His mom is an ovarian cancer survivor, and she and all the gals think I should go MX because they have seen this all too many times now." What have they seen all too many times? They've probably seen a lot more women who've had lumpectomies and haven't had any problems afterwards, but those aren't the situations that stick in their minds. What we tend to remember are the cases that don't go well, where there are lots of problems and we hear about it for months on end. The cases where everything goes well and it's all over and done in a couple of months fade from our memories pretty quickly. So don't put much weight on those types of statements or examples. They are meaningless.
And remember too that what your mother-in-law and all the gals think you should do is completely and totally irrelevant to your decision. They won't be the ones undergoing the surgery and living with the results. It's easy to tell someone else what they should do -it's a whole lot harder when it's your body and your recovery and your future on the line. So I'll say it again. Don't feel that you should making a particular choice because it's what others think you should be doing. Don't feel that you are making the "wrong" decision if you choose something different than what people are pressuring you to do. Whatever decision you make, lumpectomy or mastectomy, make the decision because you realize that it's the right thing for you to do at this point in time, with your current state of mind, with your current knowledge about your diagnosis, and with what you know about the pros and cons of each option.
For all that everyone is saying that you should do what's right for you, there seem to be a lot of people, both in your personal life and even here on this board, who are trying to subtly (or not so subtly) pressure you into making a particular choice. I think that's unfortunate because it only makes a difficult decision even more difficult. Your situation is complicated; there is no clear answer or obviously "better" choice. I don't know what I would do if I was in your shoes. What I do know is that you should be able to look at the pros and cons of each option without having to deal with all the editorial comments and subtle pressures. Over the years I've created and refined a list of considerations for those who are making the decision between lumpectomy, mastectomy and bilateral mastectomy. I've posted it many times on this board. Some women have gone through the list and decided to have a lumpectomy, others have decided on a single MX and others have chosen to go with a BMX. So the list is not meant to steer you in any direction but simply presents things to consider about each of the options. Here's a link to a recent thread where I posted this list. See my post on April 15th. I hope you find it helpful. http://community.breastcancer.org/forum/5/topic/785488?page=1#post_2965861
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Thanks for your responses! I will not do anything that does not feel right to me. I actually ask people that I trust what they imagine that they would do in my case. Talking about the choices and weighing the pros/cons is helping me process all of it, and some people bring up perspectives that I haven't thought of. All of my friends and family are incredibly supportive of any decision I make. My MIL has had friends that have had lumps and MX and has encouraging stories either way. Those gals have lost a lot of friends to cancer, and they give a useful perspective. I am so thankful for this resource too! It is especially helpful to post a little plea and have a wide range of responses and experiences. Beesie, thanks for your very informative posts. I've learned a lot from you.
I talked with my surgeon today and he will use the MRI results to guide the re-excision. He feels I have a 50% chance or more of getting clear margins. I'm talking with a 2nd PS on Wednesday.
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Lavendarlady.. TimTam or now called nowhergirl is someone on these boards who started a photo gallery. You need to PM nowheregirl and ask for permission to see the photos...
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I just got a call from my BS with the results of my re-excision, and 3 of the 4 margins were involved with areas about 1.3 cm long. It's still DIS -- no invasion detected. He recommends MX, so it looks like I am following a lot of you down that path. I'm thinking BMX since my MRI detected a couple of possible spots to monitor in my right breast. So, the decision was made for me and I do not regret having the re-excision.
bdavid, thanks for the information about the photo gallery! This is really useful information and I really admire the women who are sharing their information.
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Lastar... If someone had suggested a year ago that I might post a naked picture of myself on the Internet I'd think them insane, but I have... and the other day after lunch with women from these boards I stood in my driveway and showed them my breast... Funny, huh? Mine are on there under bdavis.. I think its called MX, GAP and DIEP in NOLA.
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Ah lastar - Im so sorry that y of didn't get the clean margins!
I did BMW without recon.... And I was back on my bike at day six....
To recon or not recon - that is another question to consider.....
Good luck!
Lee -
Thanks for the laugh, bdavis! Never say never, huh? Thanks for posting your photos -- you have had an amazing journey.
BikerLee, I do think about the simplicity of no reconstruction. A 6-day recovery is a compelling argument!
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