Topic: Re-occuring DCIS in 2nd Year

May 19, 2018 06:05AM - edited May 19, 2018 06:07AM by Lula73

Cas-I'm so sorry you're having do deal with this again. Perhaps I can shed some light on why they're saying mastectomy now vs another lumpectomy and more rads...there is a limit to how many rads we can have in a lifetime to each area if our body. You have likely hit that number for your breast. It is very rare that someone with a recurrence is able to do another lumpectomy with rads...think I've only ever seen it mentioned in these boards once or twice literally.

When most of us think mastectomy, the most horrible picture we've ever seen of one tends to come to mind. And the horror stories associated with TEs. That does not have to be the case. Immediate recon is an option with skin/nipple sparing mastectomy being options too. You can do immediate recon with implants or with a DIEP or SGAP procedure where they use tissue from your tummy (you get a tummy tuck in this process) or from your hip/rear (you get a butt lift in this process). Going flat with or without a prosthesis is also an option and they can make those scars look good too.

I hope this helps explain why they're recommending mastectomy this go round and helps reassure you on viable options for immediate recon or going flat. 🍀🌷

May 30, 2018 10:39PM - edited Jun 1, 2018 03:11AM by TaraLeeOm

I had DCIS by my nipple so if I went the lumpectomy route it would have been removed. So I had a mastectomy last week. It's not that bad. They put a tissue expander in, about half full. I won't need radiation or hormone inhibitors. Hopefully, I will finish with the breast reconstruction and be done.

Don't be afraid....a mastectomy isn't as scary as it sounds. And just think, the chance of another reoccurrence in that breast is very slim.

Jun 18, 2018 12:33AM aliciacantu84 wrote:

at the end, doctors suggest but the decision is yours and not for them to take!

I think you jave to put in a balance what you prefer, tu reduce the chanes of it comming back again OR to continue with the risk of recurrance but conserving your brest.

Me personaly I didnt feel so bad on loosing my brests, to me living with the fear of recurrence was worse that lossibg my brest. Because not always it comes back as ddcis, you have been blessed of it being in sutu again

But you have the right to choose and decide what risks to take and what to do with your own body.

Receive my love and ill keep you in my prayers,

Jun 18, 2018 07:31AM LAstar wrote:

The DCIS could have been missed the first time. I had a re-excision and one margin that was clear in the first LX was found to be involved in the 2nd more extensive LX. Apparently, there can be "skips" in the ducts -- DCIS isn't necessarily consistent throughout the duct.

An MRI might be helpful in determining the extent of the DCIS. That helped me and my BS realize that my DCIS was more extensive that we realized. I tried a 2nd LX but margins were still involved so I had MX. 6 years and counting with no problems (*knocks on wood*).

Best wishes in making your decisions and gathering all the information you need to feel confident moving forward.

Jul 5, 2018 09:08AM Roxy_89 wrote:

CAS - If you speak to Dr. LAGIOS a pathologist based in San Fransisco he does phone consultations and he said that if DCIS returns to the same breast after radiation that surgeons could possibly do another lumpectomy without radiation, without mastectomy. He usually refers people to have their second lumpectomy to be done with Dr. Mel Silverstein. The majority of surgeons will say that you need to do a mastectomy if DCIS returns. A small percent of surgeons are willing to remove the DCIS if it reoccurs and they wont do radiation again, they will just monitor the breast.

I am wondering how your first case of DCIS was high grade and your second case was intermediate. That seems strange to me. I was told that if DCIS arises in the body as high grade it will always reoccur as high grade. Maybe this theory is wrong - who knows.

You have to be able to realize that if you do a lumpectomy now to remove the DCIS with NO radiation there is a liklihood that the DCIS could reoccur again. Or it may never reoccur again. Nobody knows. All bodies are different. If you do a lumpectomy and they get the margins clear you can just monitor the breast with mammogram and MRI every 6 months and see what happens. If DCIS returns again THEN you can think about a mastectomy later. But why do a mastectomy now when you have no proof that DCIS WILL reoccur again in the future? Its like rolling a dice, you dont know what the future holds. If you get a mastectomy now you may always have that burning desire to know : had I just done a lumpectomy I wonder if DCIS would of returned or not?? That question will stay with you forever. But if you do a lumpectomy now and you get DCIS again then you will have had your answer. Nobody knows what each body will experience in the future. Some women get DCIS and never have a reoccurence for 8 or 10 years. Others have a reoccurence after 2 years. Others never get a reoccurence. Some women get a mastectomy and then have breast cancer emerge in the future, slight chance, but its still a 1% chance. If you try to live your life based on "What may happen in the future" you miss out on the here and the now.

Jul 10, 2018 09:10AM Cas35 wrote:

Hi to All, Thank you all so much for responding especially Roxy_89. I decided to go with my heart and have a further wide local excision to remove the re-occurring DCIS. This was after seeing two different consultants, one private whom both agreed with the original decision of an MX. However after extensive research and reading the booklet regarding an MX which put me off completely and really made my mind up for a consultant to do what I was asking. I couldn't get my head round having an MX when there is no solid evidence regarding DCIS. I had the operation on the 25th June and have had the results and all ok margin again clear. Was a difficult operation for the consultant due to the previous radiotherapy as the tissue is so different. I am extremely bruised and swollen as it did bleed inside the breast however the consultant did state it will heal but could take a while for the bruising to go. Still I' m happy still have my boob!! 

 Roxy you were right results showed it was high grade so they didn't get that right from the biopsy. I am not with the original surgeon or trust and thank goodness as I was treated so badly and since found out that I should never of had my lymph nodes out on the first operation in 2016. I am now with St Barts in London and feel more confident under their care. 

Next dilemma now is do I take the tamoxifen? Again when researched there is an argument for taking this for 5 years even if oestrogen receptor is not found in the cell. Within the London area it not even tested for this if you have DCIS. However there is research now so my consultant is happy to prescribe if I want it. My cousin was prescribed and she is in the 9th year all good but again this was outside of the London area and she had the same as me. 

Due to go back next week so will all let you know the outcome. There is so much still they don't know about DCIS and they wont if they keep hacking off breasts every-time DCIS is diagnosed. None of it really makes sense as DCIS is contained within the ducts so why on earth was my lymph nodes taken in the first diagnoses even after I kept stating I don't want them out. All they said was that we do this as a precaution as if any invasive cancer found saves you going back under the knife again. I feel it was too save money on the NHS as both advice from other consultants is they would not of done this due to the risks of lymphoedema. I would advise anyone going through this to get 2nd opinions and research. I didn't the first time as you are so shocked when you get this disease you just trust what you are told. Lesson learnt.

Jan 21, 2019 05:16PM Cat5 wrote:

greetings CAS- i agree! if i was granted a do-over, would love to have known then what we know now-

DCIS is the gray area & don't let them scare/bully you into over treatment! i skipped recommended radiation-chemo -MX and only took the arimidex after lumpectomy/sentinal w/clear margin-

do whats best for you & dont let them scare you into overtreatment! be your own gladiator-best to you sister.

Jan 27, 2019 07:36PM SwedeSue wrote:

So sorry to hear this. I am newly diagnosed and realize that a recurrence can occur despite the odds. Hoping you got the answers you needed to move forward and that everything went well.

Dec 21, 2019 02:43AM Cas35 wrote:

Here we go again it’s now December 2019 and after a six month mammogram showing more signs of Dcis. Further biopsy in January but is likely to be confirmed. I am still refusing a mastectomy. Half of me wants to leave it as no stats if it would ever come out of the ducts. As everyone having mastectomy. This would be the 3rd time of breast conservative operation but the thought of going through a mastectomy seems so much worse. Once results of biopsy I was then going to ask to fill in the breast at the same time to make it look not so dented. Not sure my consultant will do this. I could be doing this every year. Has anyone out there just left the DCIS and had nothing done??

Dec 22, 2019 03:47AM LisaK12 wrote:

I am so sorry you are having to go through this. I was in a similar situation and totally relate to what HopeWins wrote above. I had DCIS and my genetic testing came back negative. After two lumpectomies without getting clear margins, my breast surgeon recommended mastectomy. Initially, I was incredulous and just wanted her to do a third lumpectomy. She told me that in her experience, when two lumpectomies have been performed without getting clear margins, the third lumpectomy does not produce clear margins either. I got a second opinion. He recommended a third lumpectomy and radiation. I decided to take my time, do as much research as I could on the various options (including reconstruction), and think about it for a while. My breast surgeon supported giving me a few months to think about it. I also consulted with a radiation oncologist and reconstructive surgeon. My PS helped me realize that I was probably going to want to have some kind of reconstruction regardless, because I had already lost quite a lot of breast tissue with two lumpectomies, and a third lumpectomy would leave me asymmetrical to a degree that I was not comfortable with. This website was also a great deal of help. Ultimately, I decided that my highest priority was to have peace of mind that I was as free of breast cancer as I could possibly be, and that I needed that peace of mind more than I cared about keeping my breasts. So I decided on a mastectomy. After peace of mind, my second-highest priority was to give this disease as little of my time and energy as possible. I wanted "one and done," with as quick a recovery and return to my normal life as possible, preferably without having to shop for a new wardrobe. For that reason, I decided to have immediate, direct-to-implant reconstruction (without tissue expanders) done at the same time as the mastectomy -- without nipple reconstruction -- and to have the implants placed pre-pectorally so that the muscle would remain intact and I would have less trauma to heal from. I chose implants approximately the same general size as my natural breasts so that I could wear the same clothes as before. After that, I decided my third-highest priority was as positive an aesthetic outcome as I could possibly have, without compromising either of my other, higher priorities. For that reason, I decided on a bilateral mastectomy -- for symmetry -- and to later get 3D nipple tattoos.

Everyone has different priorities. Some people prefer to have the less-invasive treatment of lumpectomy + radiation for weeks if it means they might be able to keep their breasts. Some people don't mind having more surgeries or procedures or giving up more of their time, to get a better-looking outcome. Some people don't mind harvesting tissue from another part of their body to get more natural-feeling breasts. Some people are super happy being flat and don't want anything unnatural inside their bodies. Those are all valid choices for valid reasons, depending on what is most important to you. I just wanted to reduce my risk as much as possible as quickly as I could so that I could get on with traveling and living my same life, without the worry of breast cancer and constant returning for more imaging. I was fortunate to have a supportive husband and supportive doctors. My recovery was easier than expected, fairly unremarkable. I was back to living my normal life six weeks after the surgery. I still have the same upper body strength, I can still wear the same clothes, although I don't have to wear a bra 99% of the time, which is great. I have 3-D nipple tattoos that look real (but don't have the real sensation unfortunately). I have occasional itching where they removed a sentinel node, but if it weren't for that, I honestly would hardly ever think about it at all. And I don't need any more mammograms -- just an MRI every several years.

Mastectomy was the right decision for me, as the pathology results showed I had DCIS scattered throughout all four quadrants of my left breast, and had pre-cancerous changes (LCIS, atypical ductal hyperplasia, and papillomas) in my right -- none of which had shown up on testing. Only you can decide what the right decision is for you. This website is an excellent resource. Good luck!

Dec 22, 2019 12:04PM MBPooch wrote:

Cas35 - Sorry to hear you are going through this again! I had BMX with immediate reconstruction and my recovery was not as difficult as I had imagined. For me I really wanted some sense of piece of mind. To know that I did as much as I could to hopefully not have to go through that process again. Ultimately you will do what is right for you but I agree with the others that have said there's a chance that if left untreated your DCIS could become invasive.

Mar 30, 2020 10:51AM LAstar wrote:

Hi, Cas35 -- I'm sorry to hear that a microinvasion was found and sending best wishes for your surgery this week. It will be great to get the cancer out, so I'm so glad you can get the MX done quickly. The DIEP is a more involved recovery, so it will be nice to not have additional risk for complications while the hospital situation is complicated. Will you have skin-sparing MX in anticipation of the later DIEP or will you go flat? Sometimes I wish I'd just given flat a go, so it might be nice to see how you feel afterward. Wishing you a smooth way forward and a speedy recovery.

Apr 10, 2020 11:09AM LAstar wrote:

Wow, amazing to have both the MX & COVID-19 behind you! Wondering if you might have lymphedema that could be helped with lymphatic drainage massage. I hope you can resolve the swelling soon.