DCIS Stage 0/surgery

2»

Comments

  • warriorxena
    warriorxena Member Posts: 3
    swalters said:

    Article
    Hi Nina,

    Dr. Lagios has done research for 30 years with Dr. Silverstein on DCIS. Together they developed the Van Nys Prognostic Index (VNPI) which is based on these factors: age, size and grade of the DCIS and whether clean margins can be obtained. Patients with a score of 4-6 have a 3 percent recurrence rate, which means that since radiation cuts their risk in half,it is not worth enduring the side effects for a 1.5 percent reduction in risk.

    If that was covered in the article you referenced, then you know all this already. He has written volumes on the subject, but I was interested in your article because it was so current. I can get the info from the medical journal so will do that rather than bothering him.

    He does have a web site where anyone can get more information or find out how to contact him.

    I am impressed that your MD gave you the option of not having radiation. So often that option is not even offered.

    Congratulation on your decision to develop the healthy life style. I now prefer vegetarian food also and feel much better with this diet and with balanced hormones.

    Do you have a theory about why you developed DCIS? My theory was that I was estrogen dominant, but I am very intersted in what other DCIS patients think?

    Sandie

    Dr. Lagios
    Hi Sandie,
    Thanks for replying. I will be attending a seminar on cancer next week, and hopefully will have a theory about why I got breast cancer. I did find out that my great aunt on my mother's side and my cousin on my Father's side both died of breast cancer...so I believe there is a genetic link.
    I also believe our environment is full of toxic estrogens, and that these can cause cancer in both men and women. A healthy lifestyle may be preventative...but we should all do what we can to save and improve our water, food, and air.

    Nina
  • swalters
    swalters Member Posts: 33

    Dr. Lagios
    Hi Sandie,
    Thanks for replying. I will be attending a seminar on cancer next week, and hopefully will have a theory about why I got breast cancer. I did find out that my great aunt on my mother's side and my cousin on my Father's side both died of breast cancer...so I believe there is a genetic link.
    I also believe our environment is full of toxic estrogens, and that these can cause cancer in both men and women. A healthy lifestyle may be preventative...but we should all do what we can to save and improve our water, food, and air.

    Nina

    Breast Cancer Cause
    Hi Nina,
    I couldn't agree with you more. At a local college here recently, I heard a speaker who was a cancer survivor herself with a PHD in biology who talked about the impending environmental disaster we face if we don't work on solving this problem soon. She said it will be far worse than the economic mess we are in currently.

    I would love to hear anything you are willing to share from your cancer seminar next week.

    Thanks,
    Sandie
  • suzjazz
    suzjazz Member Posts: 17
    DCIS
    My thoughts are with you.
    I had stage 0 DCIS in 2004, and had 4 lumpectomies on my right breast before they got clear margins. (There was no palpable lump so it was very hard for the surgeon to excise the correct area)
    I was afraid I would have to have a mastectomy, but my surgeon was trying to save my breast.
    From what I have read and what my oncologist and surgeon told me, the current thinking is no mastectomy, only lumpectomy, for DCIS (does not improve survival rates) Survival rates for DCIS are quite good with only a 4% recurrence rate after 5 years, especially if you take tamoxifen.
    I hope that you have had/are having radiation, though, because that makes a big difference in survival.
    I had my treatment at Dana Farber in Boston, a cutting-edge cancer treatment center, so I have faith in what they tell me.

    If you are stage 0 then it has not spread to lymph nodes and you are in good shape.
    I wish you well with your treatment. Don't let them talk you into or out of anything. Read Dr. Susan Love's Breast Book--she was one of the lumpectomy pioneers at a time when everyone was doing mastectomies.
  • Arla76
    Arla76 Member Posts: 1
    DCIS stage 0
    I opted for lumpectomy vs mastectomy. I too work full time, and I traveled 78 mi round trip for 6 wks for radiation. Maybe I was just lucky, but I was not fatigued at all. I just had to leave work an hour early each day
  • cocomiranda27
    cocomiranda27 Member Posts: 1
    Arla76 said:

    DCIS stage 0
    I opted for lumpectomy vs mastectomy. I too work full time, and I traveled 78 mi round trip for 6 wks for radiation. Maybe I was just lucky, but I was not fatigued at all. I just had to leave work an hour early each day

    DCIS Stage 0
    I was dx in Oct. 2002 with DCIS Stage 0 grade 0. I opted for a lumpectomy. Because I was stage 0, grade 0 I didn't need radiation. The radiatologist told me that I didn't need radiation and that I should burn that bridge. She said that if I had radiation that I wouldn't be able to have radiation again to the same breast if I had a recurrance or another breast cancer. I was only 37 when dx. I'm the only person in my family that has had breast cancer, but have many family members that had other types of cancer.

    I wish you the best of luck.

    Lisa
  • sally11
    sally11 Member Posts: 5
    DCIS
    Hi, I to had same diagnosis and went through it all Lumpectomy, Radiation and then Tamoxifen for 5 years. Unforutunately it came back in the same breast 6 years later. I just had a double masectomy because I could not go through this again. I also had immediate reconstruction(Tram flap). Only the flap failed on the side I had cancer. I truly believe the previous radiation caused too much damage. They don't suggest mastecomies if they can save your breast, but if I would have known what I know now I would probably opt for the masectomy with reconstruction. Good Luck, only you can make this very personal decission.
  • phillis313
    phillis313 Member Posts: 16
    sally11 said:

    DCIS
    Hi, I to had same diagnosis and went through it all Lumpectomy, Radiation and then Tamoxifen for 5 years. Unforutunately it came back in the same breast 6 years later. I just had a double masectomy because I could not go through this again. I also had immediate reconstruction(Tram flap). Only the flap failed on the side I had cancer. I truly believe the previous radiation caused too much damage. They don't suggest mastecomies if they can save your breast, but if I would have known what I know now I would probably opt for the masectomy with reconstruction. Good Luck, only you can make this very personal decission.

    DCIS
    Hi Lauren! I too had DCIS, stage 0. Had a lumpectomy in October '08 with clear margins and followed with radiation in December. I'm on tamoxifin now, so far, so good. I really was torn and got to the point where even reading these boards was confusing. At the time of my posting it seemed everyone was opting for mastectomies and I sometimes thought I should too. Once I did calmly weigh everything out, pray, research and talk to doctors, friends and family, I was very happy and at peace with my decision. I think just finally deciding on the treatment and moving forward was a great step. I was really dreading radiation and it turned out fine. Yes, you have to schedule it daily, but I found our center very accommodating and it worked well with my work schedule. I only had about 17 seconds a day, it took longer to drive and change, etc. Some skin irritations, but creams helped and there's no lasting damage, at least on the surface that I can tell. Bottom line, and you've seen it and heard it from many of these amazing women, your decision will not be wrong no matter what. It will be what is right for you. The best advice I can offer you is don't make a decision based on fear. Weigh it all out, write it down, do what makes sense for you. Also, If you aren't already doing this, taking someone else along with you at appointments to help you remember or write down what the doctor says can be helpful. Some even tape record their conversation, my oncologist did and it was great to go back to.

    I almost feel unworthy to call myself a breast cancer survivor because my experience so far has been so minimal and nonintrusive, no chemo or extensive surgery. I don't quite want to say it's been a breeze, but I know I have not suffered to the extent or endured a lot of what many of these amazing women have gone through. Best of luck and you're in my prayers!
  • noway
    noway Member Posts: 1
    young_one said:

    OK, so I am not in the same
    OK, so I am not in the same boat that you are but I had both. Mastectomy and radiation. I am just going to echo what Jadie said- Radiation is very doable. It lasts maybe 10 minutes. It won't take up a ton of your day or evening.

    Mastectomy followed by radiation?
    Young one,
    I take it you had positive margin after the mastectomy that prompted the radiation? If so, what is the size of the positive margin? Or was it not DCIS but another stage and radiation is the standard of care?

    I had my mastectomy with immediate reconstruction in Jan 09 with a 2cm positive anterior margin, 1mm close margin in the deep area and 2mm close margin in the lower inner quadrant. Based on the large size at the anterior margin, the other areas of close margins and my relative young age (early 40s), all 3 radiation oncologists I saw are recommending 5 to 6 1/2 weeks of full breast radiation. I'm most worried about the chance of getting secondary cancer to the skin, muscle, lung and bone 15-20 years down the road although they say that this is only 1%. I'm not sure that there is enough data out there to really back up the 1% (I think it's higher and if this is the case, it may tip the scale if one weighs it against minimizing recurrence) since my online searches and discussions w/ the doctors have indicated that there are not many cases with mastectomies followed by radiation for DCIS. Did you (or anyone else on this board) uncover anything more about secondary cancer when you made your decision to receive radiation?
  • dbs1673
    dbs1673 Member Posts: 203
    noway said:

    Mastectomy followed by radiation?
    Young one,
    I take it you had positive margin after the mastectomy that prompted the radiation? If so, what is the size of the positive margin? Or was it not DCIS but another stage and radiation is the standard of care?

    I had my mastectomy with immediate reconstruction in Jan 09 with a 2cm positive anterior margin, 1mm close margin in the deep area and 2mm close margin in the lower inner quadrant. Based on the large size at the anterior margin, the other areas of close margins and my relative young age (early 40s), all 3 radiation oncologists I saw are recommending 5 to 6 1/2 weeks of full breast radiation. I'm most worried about the chance of getting secondary cancer to the skin, muscle, lung and bone 15-20 years down the road although they say that this is only 1%. I'm not sure that there is enough data out there to really back up the 1% (I think it's higher and if this is the case, it may tip the scale if one weighs it against minimizing recurrence) since my online searches and discussions w/ the doctors have indicated that there are not many cases with mastectomies followed by radiation for DCIS. Did you (or anyone else on this board) uncover anything more about secondary cancer when you made your decision to receive radiation?

    DCIS w/ radiation
    I also had a diagnosis of DCIS, had a mastectomy, and also needed radiation due to the margin. Mine reading was .7. I certainly don't want to minimize your concerns about what my be down the line in secondary cancers but I have no regrets or doubts about following my oncologist's advise to have the radiation. 36 rounds of treatment is what I needed to know that I was doing everything humanly possible to keep the beast away. I had other factors to consider as well since I had the expanders put in at the time of the mastectomy. Fortunately everything went fine and there was no damage done to the expanders or the process other than it has taken longer to move forward with the implants. My position all along has been that this is not a dress rehearsal, this is the real thing....do it right the first time for there can be no second time. At my check up a couple of weeks ago, my surgeon asked me if I had any regrets about anything thus far. I can honestly say I don't. What ever you decide will be the best for you. good luck
  • lauralew
    lauralew Member Posts: 1

    DCIS Stage 0
    I was dx in Oct. 2002 with DCIS Stage 0 grade 0. I opted for a lumpectomy. Because I was stage 0, grade 0 I didn't need radiation. The radiatologist told me that I didn't need radiation and that I should burn that bridge. She said that if I had radiation that I wouldn't be able to have radiation again to the same breast if I had a recurrance or another breast cancer. I was only 37 when dx. I'm the only person in my family that has had breast cancer, but have many family members that had other types of cancer.

    I wish you the best of luck.

    Lisa

    In decision making stage: Help
    Lisa or anyone with low grade DCIS,

    I am not sure if you are getting messages from this message board but I would love to find out how you are doing and who your physician is. All I am hearing is that my options are lumpectomy and radiation OR mastectomy. I am looking for someone to support lumpectomy without radiation. Is there any other research besides the Van Nuys study? For some reason the surgeon I consulted with does not value that research. I have not read it yet but I am hoping to find it as well to review.

    Thanks for your help, I appreciate your time.

    Laura
  • spa34
    spa34 Member Posts: 2
    DCIS Stage 0
    lauren08,
    i, too, was diagnosed with DCIS Stage 0 exactly 3 yrs. ago December 2006 @ the age of 52. The startling news came just 3 days before Christmas. I was opposed to mastectomy as well, but tried to stay focused & did exactly what you're doing...take it a day @ a time.

    However, unbenounced to me i was @ the mercy of the only breast surgeon available, who didn't know what she was doing. She removed almost 30% of the breast tissue in the right breast & still didn't get clear margins. She had the papers ready for me to sign @ my follow up appointment for double mastectomy. i began to quiver, twitch & shake uncontrollably, but by the time i neared home a calm came over me. I was then on a mission to get a second opinion & i did just that. Within 48 hrs. i was seen by one of the best breast surgeons on the eastern seaboard. Someone was watching over me as the breast surgeon looked @ me after reviewing bloodwork, mammogram, breast MRI & biopsy results that i was never a candidate for mastectomy. Finally, i could breathe a sigh of relief. She then performed a second lumpectomy within 3 mos. post first lumpectomy with clear margins no residuals.

    With a previous history of pulmonary hypertension I was referred to radiation & medical oncologist, but radiation & chemo were not an option for me. Now, just three years into taking tamoxifen i've been diagnosed with very unusual thickening of the uterine lining & i'm faced yet with another biopsy. When does it end?

    i don't have the answers for you, but follow your gut feeling. If you feel a second opinion is necessary then you should do it for peace of mind. i was glad i did. Good luck & God's speed!
  • susie09
    susie09 Member Posts: 2,930
    spa34 said:

    DCIS Stage 0
    lauren08,
    i, too, was diagnosed with DCIS Stage 0 exactly 3 yrs. ago December 2006 @ the age of 52. The startling news came just 3 days before Christmas. I was opposed to mastectomy as well, but tried to stay focused & did exactly what you're doing...take it a day @ a time.

    However, unbenounced to me i was @ the mercy of the only breast surgeon available, who didn't know what she was doing. She removed almost 30% of the breast tissue in the right breast & still didn't get clear margins. She had the papers ready for me to sign @ my follow up appointment for double mastectomy. i began to quiver, twitch & shake uncontrollably, but by the time i neared home a calm came over me. I was then on a mission to get a second opinion & i did just that. Within 48 hrs. i was seen by one of the best breast surgeons on the eastern seaboard. Someone was watching over me as the breast surgeon looked @ me after reviewing bloodwork, mammogram, breast MRI & biopsy results that i was never a candidate for mastectomy. Finally, i could breathe a sigh of relief. She then performed a second lumpectomy within 3 mos. post first lumpectomy with clear margins no residuals.

    With a previous history of pulmonary hypertension I was referred to radiation & medical oncologist, but radiation & chemo were not an option for me. Now, just three years into taking tamoxifen i've been diagnosed with very unusual thickening of the uterine lining & i'm faced yet with another biopsy. When does it end?

    i don't have the answers for you, but follow your gut feeling. If you feel a second opinion is necessary then you should do it for peace of mind. i was glad i did. Good luck & God's speed!

    Old Post
    Spa, I don't think Lauren will probably reply to you as her post was in January of this year. This is a really old thread that you have responded to. Sorry. I wish you the best!

    ♠♣ Susie ♠♣
  • spa34
    spa34 Member Posts: 2
    susie09 said:

    Old Post
    Spa, I don't think Lauren will probably reply to you as her post was in January of this year. This is a really old thread that you have responded to. Sorry. I wish you the best!

    ♠♣ Susie ♠♣

    old post
    sorry, i misread the date. thanks for enlightening me. i'm overdue for an eye exam...LOL!
  • jfm1968
    jfm1968 Member Posts: 1
    chiming in late here
    Hi there,
    I just wanted to share that my mom was diagnosed with stage 0 breast cancer about 10 or more years ago. She was very against radiation and chemotherapy. Her doctor recommended a lumpectomy (which she had done) and follow up radiation treatments as you had said. My mom refused the radiation. She did the lumpectomy only, and took the temoxifan (sp?) for quite a while. She is considered a long term survivor, and is still cancer free today at age (almost) 75. I was very afraid when she refused the radiation. But she stood strong and followed her gut...and well there you go! I just wanted to share! Jen M.
  • hopeful in tally
    hopeful in tally Member Posts: 56
    jfm1968 said:

    chiming in late here
    Hi there,
    I just wanted to share that my mom was diagnosed with stage 0 breast cancer about 10 or more years ago. She was very against radiation and chemotherapy. Her doctor recommended a lumpectomy (which she had done) and follow up radiation treatments as you had said. My mom refused the radiation. She did the lumpectomy only, and took the temoxifan (sp?) for quite a while. She is considered a long term survivor, and is still cancer free today at age (almost) 75. I was very afraid when she refused the radiation. But she stood strong and followed her gut...and well there you go! I just wanted to share! Jen M.

    DCIS
    I was so happy to see this DCIS series on the website. I was just recently diagnosed with DCIS and am starting radiation this week. I would love to hear some recent updates from these "posters" from 2009. My understanding of a DCIS diagnosis and removal with clear margins (quadrectomy)is reason to be optimistic. I had LCIS markers which is why the Tamoxifin will be in order once the 7 weeks of radiation is complete. I recently posted a question asking about breast reduction. I am curious if anyone with the DCIS diagnosis had considered breast reduction to lessen the chances of reoccurance. I spoke with my Oncologist and he suggested it may be an option down the road. We are blessed with this website and the ability to share our story and learn from one another. I look forward to your input.
  • peppopat
    peppopat Member Posts: 1
    swalters said:

    DCIS Stage 0
    Lauren,
    You are not the only one who only wanted a mastectomy as a last resort. I did not want one
    either and did not need radiation or tamoxifen.

    I was diagnosed with intermediate grade DCIS in June of 2007. The first surgeon I went to said I would need a mastetomy. I asked for a 2nd opinion. The 2nd surgeon said she thought she could do a wide excision and have it look acceptable.

    I had surgery in December of 2008. My pathology report said they did not get clean margins. I consulted with Dr. Michael Lagios, a world renown DCIS expert pathologist to get a 2nd opinion. Turns out he disagreed with my post-surgery pathology report. He said they had gotten all the DCIS and I did not need more surgery. Pathologist often interpret the same data differently.

    Dr. Lagios has a website and a breast consultation service. My surgeon told me about him. You just call the number on his web site and make an appointment to talk to him. You can also have him review your pathology slides if you want a 2nd opinion now or after surgery.
    His assisant Sheila will call the lab and request they send your pathology slides to them. If you have insurance, it will probably cover most of the cost.

    Dr. Lagios (with Dr.Mel Silverstein) also developed the Van Nys Prognostic Index (VNPI) which is based on your age, the size and grade of your DCIS and if they get clean margins. If you fit the criteria and get a low enough score like I did, there is very little benefit to doing radiation. (Since my calculated risk of DCIS recurrence using that scale was only 3 percent, it was not worth it to have radiatin to reduce my risk by one half.
    You can google the Van Nys Prognostic Index and see if you might qualify for skipping radiation. By the way, you can only do radiation once.

    Recent studies on tamoxifen are showing it is of questionable benefit also. I say do the research and then do what you are comfortable with.

    Hope this helps. No matter what you choose you have very good odds.

    You are not alone.
    Swalters

    did u opt out of surgery?
    Hello Swalters.

    I ama regular to breastcancer.org. While scanning the different threads I came across your name, suggested to me by another victim, along the way. Is it my understanding that you were diagnosed with DCIS and have opted out of surgery? I ask because I have not found someone, like myself, that has known of DCIS for a while now with no plans for surgery in the near future. Speaking from my own experience with the "wait and see" approach, the intentions for treatment have become VERY fluid.

    So, my short question is, " have you opted out and how long have you known of your Dx?

    Most appreciative for your time,