Re-occuring DCIS in 2nd Year
In 2016 I was diagnosed with DCIS and had a wide local excision 2.5 mm high grade DCIS and radiotherapy. On my 2nd year mammogram have been diagnosed of intermediate grade DCIS and I believe 1.7mm however this has not been fully explained to me as to exactly where it is but possibly near the existing scar. I had a very bad experience of being told and not explained to fully just told a Mastectomy is necessary and I can have re-construction. Based on the fact that its come back in the 2nd year and the radiotherapy hasn't worked. I have asked for a 2nd opinion from a different trust under the NHS but still do not feel comfortable as they didn't have my full details. I cant seem to trust the NHS. I understand that they all sit in a room and discuss this but it should be fully explained and I still don't have a clear explanation as to why this cant be taken away again and see how it goes under the existing scar. I now have to find a private consultant that will take time to explain fully and if there are any other options as I don't want to go down the route of a mastectomy. Please can anyone recommend a surgeon locally to greater London or Essex. Very scared, worried and cant stop crying.
Comments
-
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. 🍀🌷
0 -
Thank you Lula for your response. I know I cannot have any further radiotherapy. My cousin had the same and refused mastectomy so she went for a private consultation and happened to be her original surgeon. He went in again under the same scar and removed the DCIS and then she was put on the drug tamoxifen. I don't see why I cant try this too in the first instance before having a mastectomy. Wondered if anyone out there having the same problem. I don't think I ever want to go flat but still cant see why I cant have the DCIS removed again if with a clear margin and see how I go before the dreaded mastectomy of which I just don't think I can go through. I am definitely getting a further private opinion but now trailing through a surgeon to choose.
0 -
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.
0 -
CAS35 I understand your fear of having a mastectomy as I was diagnosed in February with DCIS in my right breast. I wanted to choose to have just a lumpectomy. My BS Said she would do a lumpectomy but my DCIS was very close to the skin, large ( 7 ccm) and also close to the nipple so she felt the outcome of lumpectomy would be cosmetically challenging and nearly half of the breast would be lost. I had 3 other BS’s and my pathology report reviewed again to help me decide if a lumpectomy was enough or was a MX the way to go. All 3 BS agreed that MX was the best choice if I wanted to put this cancer behind me. I also would be able to avoid radiation treatments. I had a ULX in April and started immediate reconstruction. A tissue expander was placed at the same time as surgery filled with 120cc’s of saline. It helped to wake up from surgery with at least some form to my breast as opposed to nothing there at all. I’m still in the process of weekly fills and my last one caused some discomfort as we are getting close to the size I need to be. When my exchange surgery is done, my PS will do reduction & lift to my left breast so they are symmetrical. I know it’s scary but I believe I made the right choice medically.
0 -
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,
0 -
Cas - I am sorry you are going through this again. Did you ever get an Oncotype DX type of genome testing on your tumor after it was removed? A recurrence in 2 years makes me think your BC is aggressive. Do you have other family history of BC besides your cousin? Every BC is different and you would need to get more information about your BC and your cousin's to make a fair comparison to see if your treatments can be the same. Why don't you go to your cousin's Dr for a second opinion?
0 -
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.
0 -
Cas
I was told that if DCIS recurs in the same breast it would mean a mastectomy because I had radiotherapy the first time, that reaches the absolute limit for the amount of radiation in one place.
In the UK small and low grade areas of DCIS are often treated by surgery alone, and that leaves the option of further surgery and radiotherapy in the future if it recurs. When DCIS comes back, 50% of the time it is DCIS again. But if you've already had radiotherapy, or it is invasive the next time, you've run out of options. There is no way to be certain everything has been removed by surgery alone, so you would run a huge risk that something was left behind. I'm guessing you already had radiotherapy if the original tumour was high grade?
It's tough thinking about having a mx if that's not what you want. That said, I've talked to a lot of women who have been happy with the outcome, and there's a lot of options for reconstruction at the same time so you could come round from surgery with the reconstruction completed.
Nonomimi, the Oncotype DX test isn't used for DCIS, only invasive cancer. There is an Oncotype test which is used for low and intermediate grade DCIS to determine whether there would be any benefit from radiation therapy.
0 -
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.
0 -
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.
0 -
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.
0 -
Thank you for your reply yes had an MRI and it was all clear in both breasts before the 2nd operation. It wasn't that big only 15 mm so once this swelling and bruising goes I have another year until that dreaded mammogram. Keeping my fingers crossed but deep down I know eventually it might be the MX but will be in a better position to have to face it when I feel there is no choice.
My best wishes to all of you whom are going through this dreadful disease.
Thanking you all for your support and comments. It has been a great help knowing you are all out there understanding the fear we all go through. xxx
0 -
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.
1 -
i wish i had your strength-
0 -
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.
0 -
Cat5: Chemotherapy is never recommended for DCIS.
0 -
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??
0 -
cas35 you are brave and I'm sorry you're dealing with this. It's such a scary journey. As others have said, mastectomy is scary but the results are typically really good and the recovery is temporary.
I agree there's more to be learned about DCIS, but it is known that 80% of IDC starts as DCIS. Also, I noticed someone said 50% of DCIS recurrences are DCIS, but didnt add that the other 50% of these recurrences are invasive. You need to follow your heart but DCIS can and does become invasive cancer. Thats not a gray area. Scientists just don't know when or why this happens. I'm risk adverse and that unknown made me decide to do a bmx for my DCIS. I had DIEP and am 4 months out and feel great. With the exception of some scars, you would never know I had a mastectomy. Theyre not perfect but 100% look like real boobs. My risk of getting breast cancer is now a fraction of the general population. This was an easy trade off for me but I recognize losing a breast, or both, is a much higher price to pay for others.
Unfortunately none of us have a crystal ball so all we can do is make the decision we're most comfortable with. I hope you have peace with your decision and most importantly, great health!
0 -
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!
0 -
Cas, I completely understand that you don't want to have a MX. I didn't want one either. But it is not correct that there are "no stats if it would ever come out of the ducts".
There have been several studies that have looked into this, and what is universally agreed is that there is approx. a 50% chance that recurrent DCIS will develop into an invasive cancer. A number of the studies have also found that the risk of recurrence and/or the risk of developing an invasive cancer is higher for grade 3 DCIS.
Here are some articles and studies that address this:
Genome evolution in ductal carcinoma in situ: invasion of the clones (2016)
"Long-term follow up studies of patients with DCIS have shown a substantial difference in the progression of low-grade versus high-grade DCIS, with only 35% of low-grade DCIS patients progressing to have IDC over 50 years, while 50% of high-grade DCIS progressed to IDC over 3 years."
Surgical Excision Without Radiation for Ductal Carcinoma in Situ of the Breast: 12-Year Results From the ECOG-ACRIN E5194 Study. (2015)
"Patients were enrolled onto one of two study cohorts (not randomly assigned): cohort 1: low- or intermediate-grade DCIS, tumor size 2.5 cm or smaller (n = 561); or cohort 2: high-grade DCIS, tumor size 1 cm or smaller (n = 104)....The 12-year rates of developing an IBE (ipsilateral breast event) were 14.4% for cohort 1 and 24.6% for cohort 2. The 12-year rates of developing an invasive IBE were 7.5% and 13.4%, respectively....For patients with DCIS selected for favorable clinical and pathologic characteristics and treated with excision without radiation, the risks of developing an IBE and an invasive IBE increased through 12 years of follow-up, without plateau."
Overdiagnosis and overtreatment of breast cancer: Progression of ductal carcinoma in situ: the pathological perspective (2006)
"The studies to date indicate that DCIS of all grades has the potential
to progress, though high-grade lesions progress more rapidly than lower
grade lesions and are more likely to lead to metastatic disease and
death."Characteristics associated with recurrence among women with ductal carcinoma in situ treated by lumpectomy. (2003)
"The 5-year risks of recurrence as invasive cancer and as DCIS were 4.8% (95% CI = 3.7% to 6.8%) and 4.8% (95% CI = 3.8% to 5.8%), respectively, for women with low-nuclear-grade DCIS; 11.8% (95% CI = 9.9% to 14.1%) and 17.1% (95% CI = 15.5% to 18.7%), respectively, for women with high-nuclear-grade DCIS..."
Ductal Carcinoma In Situ of the Breast: Controversial Issues (1998 - this is old but the data makes the point that the risk of recurrence is very high with small margins and high grade DCIS)
Eight-year probability of local recurrence by treatment: Nuclear grade 3 (high nuclear grade) (n = 185), Excision only
Margins ≥ 10 mm (n = 56): 6%
Margins = 1-9 mm (n = 71): 39%
Margins < 1 mm (n = 58): 73%
Ductal Carcinoma In Situ: What Do We Know Now? (2002)
As for what happens if you forgo surgery, there are several trials currently underway, but here are the results from one earlier very small study:
Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ (2011)
"Retrospective review of 14 women...8 women had surgery at a median follow up of 28.3 months (range 10.1-70 months), 5 had stage I IDC at surgical excision, and 3 had DCIS alone. 6 women remain on surveillance without evidence of invasive disease for a median of 31.8 months (range 11.8-80.8 months)."
.
I know that there is a lot written about the over-treatment of DCIS. I don't disagree that some cases of DCIS are over-treated. But all DCIS is not alike, and there is no question that some cases present a very high risk of invasive cancer, whereas other cases present a much lower risk. Just as it's not necessary for someone with a low risk diagnosis to follow the treatment protocol designed for those with an aggressive DCIS (this is what all the 'over-treatment' articles are talking about), it is dangerous for someone with a high risk diagnosis to follow the treatment protocol designed for those who have an indolent DCIS.
Your DCIS is grade 3. Your DCIS has recurred twice (if your biopsy comes up positive). If this second recurrence is still DCIS and not yet invasive cancer, you should consider yourself very lucky. I know others on this site who were not so lucky. Some now frequent the Stage IV forum, and some are no longer with us. That's not to scare you - from where you sit today, the odds that you will progress to metastatic breast cancer are very small - but to make the point that there is a real risk. It's not an unknown. All that is unknown is whether your particular case of DCIS is one that will eventually break through the ducts and possibly even spread into the body, or whether your particular case of DCIS is one that will always remain DCIS. Unfortunately at this point in time there is no definitive way to answer this question, although some of the factors related to your diagnosis (high grade, 2 recurrences) lean towards the more aggressive scenario. If you are diagnosed again through this upcoming biopsy and if your diagnosis remains pure DCIS, you can choose to reduce your risk of mets to less than 1% now, or you can take your chances.
1 -
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.
0 -
Hi everyone thought I would post an update. I was told my DCIS is now 3cm and is with microinvasion. So now so scared and made the decision to have a diep reconstruction. Took me a while to come to this decision but now all cancelled due to the current climate. Not sure if I was scared of the huge operation or dying of the coronaviris. Now my consultant has confirmed I can have the mastectomy this week and will have the reconstruction at a later date. Still very scared but keep telling myself I will hopefully be cancer free. Thank you to all out there for your support. Was so hoping my DCIS wouldn’t return but now the inevitable is luming. The surgeon stated there will be more scaring as not doing reconstruction at the same time. I can see why no large operations taking place. Have to think I’m lucky really. There was no choice to make really in the end how could I sit and wait thinking the cancer could spread. Keeping my fingers crossed. Keep safe and well everyone.
0 -
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.
0 -
Hi everyone thank you for all your support. I have had the MX on the 2/04/20 waking up to being told I was covid-19 positive. I wasn’t aware I was being tested the day before. Didn’t have any symptoms of this so feeling lucky. Was surprisingly pleased how well I was. However now its Easter Friday and have swelling and feeling uncomfortable. Think I have a seroma and have contacted the breast nurse. I was hoping to wait until the next apt with my consultant next Friday. Pleased thinking the cancer has gone but now have to go through recovery again when diep flap reconstruction is done and who knows when this will be. Still feeling very humble to be here, stay safe everyone xxx
0 -
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.
0
