DCIS Stage 0/surgery

lauren08
lauren08 Member Posts: 29
edited March 2014 in Breast Cancer #1
I was diagnosed with DCIS stage 0 on 12/30 after a stereotactic biopsy.
I have been back to see my surgeon & I am having a wide excision localization with wire guide in mid February.

I am trying to just think this ONE DAY AT A TIME while I continue to work my full-time job.
My Dr. said after the surgery we will wait & see what the lab results are.

Is there anyone out there that has this & NOT Needed Radiation? I don't have an oncologist yet. I just don't know how in the world I would be able to handle working all day then going to radiation 5 nights a wk for 6 wks & still be able to function at work. I am in the field of medicine. I don't think I will be able to handle it psychologically.

I have read SO MANY WOMEN have opted for the masectomy. AM I the ONLY one who is strongly against a masectomy?

I have heard about second opinions but I am very happy with my Surgeon. How do you get a Second Opinion on lab results?

Any feedback is greatly appreciated.
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Comments

  • Chellebug
    Chellebug Member Posts: 133
    Hi Lauren,
    I was not the

    Hi Lauren,

    I was not the same stage as you; but from what I understand, if a lumpectomy is chosen, it is followed by radiation. The idea is that the prognosis for a lumpectomy f/b radiation is the same as a mastectomy without radiation. The prognosis is not the same if you opt out of radiation. You would need to speak to a radiation oncologist.

    I did have radiation for 28 treatments. It is not so bad in the first few weeks, other than the nuisance of going in every day. You'll get some fatigue later in the treatment, but it is managable.

    When I was diagnosed, I took a good look at my schedule and my commitments/responsibilities. I kept some and dropped others. It was good to have something to do that was outside of 'cancer.' Too much empty time makes the mind wander....that's not such a good thing. I think you will be able to handle work both physically and psychologically. That's not to say it will be a walk in the park. But it is managable.

    I don't know how to get second opinions on lab results.

    I'm sorry that you have to face the new year with this. But you are very wise in taking it ONE DAY AT A TIME.

    Chelle
  • Eil4186
    Eil4186 Member Posts: 949
    slides
    Lauren, I had a lumpectomy. My cancer was stage 1 with negative nodes. At first I panicked and asked my surgeon for a mastectomy but he took the time to go over the stats on the longterm studies on mast. vs lumpct. He explained that as long as the lumpectomy has clear margins, and the cancer has been removed, you add radiation, then it is just as good as a mastectomy in terms of long-range survival. And, it doesen't make any sense or do any good to remove perfectly healthy cancer free tissue(entire breast) along with the tumor.

    Also you can have your slides sent to any lab/hospital you want to get a senond opinion from another pathologist.
  • Eil4186
    Eil4186 Member Posts: 949
    slides
    Lauren, I had a lumpectomy. My cancer was stage 1 with negative nodes. At first I panicked and asked my surgeon for a mastectomy but he took the time to go over the stats on the longterm studies on mast. vs lumpct. He explained that as long as the lumpectomy has clear margins, and the cancer has been removed, you add radiation, then it is just as good as a mastectomy in terms of long-range survival. And, it doesen't make any sense or do any good to remove perfectly healthy cancer free tissue(entire breast) along with the tumor.

    Also you can have your slides sent to any lab/hospital you want to get a senond opinion from another pathologist.
  • mimivac
    mimivac Member Posts: 2,143
    Lumpectomy here, too
    Lauren,

    I opted for a lumpectomy as well. My surgeon made it clear that it was a perfectly viable option that would not affect my survival rate. I am stage 2, with clear nodes. As for needing radiation, most people who opt for a lumpectomy will need radiation to make sure that the breast tissue there is totally clear of cancer cells. But everyone's situation is different, and you will discuss these issues in detail with your surgeon and/or oncologist and radiologist. Please don't start worrying yet about how you will handle radiation, your schedule, etc. It will seem overwhelming that way. Take it slowly and give yourself the time and permission to take care of yourself and make the best decisions you can. You will be able to handle whatever comes your way.

    Mimi
  • lauren08
    lauren08 Member Posts: 29
    thanks
    Thank you Girls for all your thoughtful words and advice. It means so much to have you to talk to because people who are not in this situation don't know what to say or almost always seem to say something to make me more upset.
    Too many questions that I don't have the answers too really works on my nerves.

    Today I just wasn't my usually bubbly self at my job & a regular customer noticed & said something. I just replied I didn't feel well all along thinking buddy, if you ONLY KNEW!

    This is why I feel its going to be way to hard to deal with this & still be there if I have to go through Radiation. Of course I'm not financially secure so I Need to work for my health insurance. The woman at my Dr's office said something about a medical leave if it came down to it. I was out 6 wks for a hernia operation several yrs ago which was my only operation ever other that giving birth to 2 children naturally over 20 yrs ago! I was brave then but Now I feel like I'm such a big baby in my older age!

    I will try to hang in there emotionally. My surgery is scheduled for 5 wks away.
    Lots of time to have a million different emotions & moods! Haha!!

    Please keep in touch. I need the support.

    Thanks again.
  • cruf
    cruf Member Posts: 908
    lauren08 said:

    thanks
    Thank you Girls for all your thoughtful words and advice. It means so much to have you to talk to because people who are not in this situation don't know what to say or almost always seem to say something to make me more upset.
    Too many questions that I don't have the answers too really works on my nerves.

    Today I just wasn't my usually bubbly self at my job & a regular customer noticed & said something. I just replied I didn't feel well all along thinking buddy, if you ONLY KNEW!

    This is why I feel its going to be way to hard to deal with this & still be there if I have to go through Radiation. Of course I'm not financially secure so I Need to work for my health insurance. The woman at my Dr's office said something about a medical leave if it came down to it. I was out 6 wks for a hernia operation several yrs ago which was my only operation ever other that giving birth to 2 children naturally over 20 yrs ago! I was brave then but Now I feel like I'm such a big baby in my older age!

    I will try to hang in there emotionally. My surgery is scheduled for 5 wks away.
    Lots of time to have a million different emotions & moods! Haha!!

    Please keep in touch. I need the support.

    Thanks again.

    DCIS
    Hi Lauren! I was Dx 8 years ago with DCIS Stage 0. I initially had a lumpectomy but my margins weren't clear so I was given the choice of having radiation and hoping all the cells were gone or having a mastectomy and knowing all is gone and not needing radiation. Both my husband and I decided that I should have the mastectomy and reconstruction and not go thru the radiation and worry about whether the cells would return. It's 8 years now and I never once wished I had done it differently. In fact, Lately, I've been wondering if I should have had both taken and then not worry about it again!I think the lumpectomy was the right way to go initially, but when the margins weren't clear, I didn't want to worry about the radiation and what if....You have to do what is best for you. As I said, I'm happy with the way I did it. Please, if you have any questions, feel free to e-mail me here and I will try to help you. Good luck with your decision and surgery! HUGS!! Cathy
  • Jadie
    Jadie Member Posts: 723
    lauren08 said:

    thanks
    Thank you Girls for all your thoughtful words and advice. It means so much to have you to talk to because people who are not in this situation don't know what to say or almost always seem to say something to make me more upset.
    Too many questions that I don't have the answers too really works on my nerves.

    Today I just wasn't my usually bubbly self at my job & a regular customer noticed & said something. I just replied I didn't feel well all along thinking buddy, if you ONLY KNEW!

    This is why I feel its going to be way to hard to deal with this & still be there if I have to go through Radiation. Of course I'm not financially secure so I Need to work for my health insurance. The woman at my Dr's office said something about a medical leave if it came down to it. I was out 6 wks for a hernia operation several yrs ago which was my only operation ever other that giving birth to 2 children naturally over 20 yrs ago! I was brave then but Now I feel like I'm such a big baby in my older age!

    I will try to hang in there emotionally. My surgery is scheduled for 5 wks away.
    Lots of time to have a million different emotions & moods! Haha!!

    Please keep in touch. I need the support.

    Thanks again.

    Radiation
    Hi Lauren

    Radiation is very doable. I too had to work through treatment for insurance and just to live. I scheduled my radiation for early in the morning and then off to work I would go. I got along very good. A little tired by the end but I think it was everything (dx, chemo and rads) not just rads.

    If you feel that you need help with emotions and nerves I am sure you onc will give you something. Zoloft and Xanax worked wonders for me.

    Do be careful who you talk to. Surround yourself with family, friends, people you love and positive people. I will go a step futher than one day at a time and tell you to live in the moment. You have caught your cancer very early and you have a lot to be thankful for.

    Please do keep us posted. We are here for you.

    Hugs
    Jadie
  • young_one
    young_one Member Posts: 67
    Jadie said:

    Radiation
    Hi Lauren

    Radiation is very doable. I too had to work through treatment for insurance and just to live. I scheduled my radiation for early in the morning and then off to work I would go. I got along very good. A little tired by the end but I think it was everything (dx, chemo and rads) not just rads.

    If you feel that you need help with emotions and nerves I am sure you onc will give you something. Zoloft and Xanax worked wonders for me.

    Do be careful who you talk to. Surround yourself with family, friends, people you love and positive people. I will go a step futher than one day at a time and tell you to live in the moment. You have caught your cancer very early and you have a lot to be thankful for.

    Please do keep us posted. We are here for you.

    Hugs
    Jadie

    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.
  • swalters
    swalters Member Posts: 33
    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
  • lauren08
    lauren08 Member Posts: 29
    What if margins are clear after a wide excision?
    Didn't have my surgery yet but just want to know if anyone has had DCIS Stage 0 & gotten clear margins after a wide excision & not had Radiation?

    I know these will be questions for my Dr. but I want to hear if anyone has done this differently.

    I have read that they usually follow up the surgery with the Rad trmts.
    I heard you can only get Radiation trmts once so if you can clear margins can Radiation trmts be skipped? My question is if you do Rad trmts & then the cells come back wouldn't your only possible option at that point be masectomy?

    From what I can remember at my visit with the surgeon discussing my upcoming wide excision I think I heard him say that if it comes back with clean margins we are done, & if there is more around the perimeter then the Radiation?

    I have several wks before the surgery but I am trying to gather as much info as I can so whatever my lab results are I can make an educated decision.

    Thanks you for any & all responses to these questions.
  • mmontero38
    mmontero38 Member Posts: 1,510
    lauren08 said:

    What if margins are clear after a wide excision?
    Didn't have my surgery yet but just want to know if anyone has had DCIS Stage 0 & gotten clear margins after a wide excision & not had Radiation?

    I know these will be questions for my Dr. but I want to hear if anyone has done this differently.

    I have read that they usually follow up the surgery with the Rad trmts.
    I heard you can only get Radiation trmts once so if you can clear margins can Radiation trmts be skipped? My question is if you do Rad trmts & then the cells come back wouldn't your only possible option at that point be masectomy?

    From what I can remember at my visit with the surgeon discussing my upcoming wide excision I think I heard him say that if it comes back with clean margins we are done, & if there is more around the perimeter then the Radiation?

    I have several wks before the surgery but I am trying to gather as much info as I can so whatever my lab results are I can make an educated decision.

    Thanks you for any & all responses to these questions.

    Hi Lauren: I opted for a
    Hi Lauren: I opted for a mastectomy, but from speaking with other survivors, any time you have a lumpectomy, you automatically get radiation, even if your margins are clear. My niece had clean margins and she had to go through radiation also and no chemo. Hugs Lili
  • swalters
    swalters Member Posts: 33
    Radiation
    Lauren,
    You do not need to get radiation if you get clean margins and have a score of 4-6 on the Van Nuys Prognostic Index.

    Please read my comments on Jan 14 for a more thorough explanation. There can be serious side effects with radiation. Please email me at lovetennis60@aol.com if you want to discuss further and I will be happy to discuss this with you.

    You have many options. Do what you are comfortable with,
    Sandie
  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    swalters said:

    Radiation
    Lauren,
    You do not need to get radiation if you get clean margins and have a score of 4-6 on the Van Nuys Prognostic Index.

    Please read my comments on Jan 14 for a more thorough explanation. There can be serious side effects with radiation. Please email me at lovetennis60@aol.com if you want to discuss further and I will be happy to discuss this with you.

    You have many options. Do what you are comfortable with,
    Sandie

    QQQ????
    Lauren, hopefully this helps a little in your question and answer needs--I had dcis stage 0 and contained-I had a wire location procedure done to give the surgeon a "map" of clean margins for the lumpectomy (which was large)followed shortly by 6 weeks of radiation. 2 years to the date of diagnosis microcalcifications showed up in my mammo in the same breast, different area, and my option was a mastectomy. Breast cancer has not run in my family, I am the first and only so far to be diagnosed.
    Hope i've helped a little.
  • young_one
    young_one Member Posts: 67
    swalters said:

    Radiation
    Lauren,
    You do not need to get radiation if you get clean margins and have a score of 4-6 on the Van Nuys Prognostic Index.

    Please read my comments on Jan 14 for a more thorough explanation. There can be serious side effects with radiation. Please email me at lovetennis60@aol.com if you want to discuss further and I will be happy to discuss this with you.

    You have many options. Do what you are comfortable with,
    Sandie

    There are also serious side
    There are also serious side effects to not treating cancer.
  • warriorxena
    warriorxena Member Posts: 3
    DCIS and Radiation
    I was diagnosed with Stage 0 DCIS and had two lumpectomies to achieve clean margins. I was about the long-term effects of radiaion, so I got second opinions from reliable oncologists. One of them suggested the following article which I found very helpful,
    "Should all parients Undergoing Breat Conserving Therapy for DCIS Receive Radiation?" It was published in the 2007 Journal of Medical Oncology, authors are Melvin j. Silverstein,MD and Michael D. Lagios, MD. Although this article is somewhat technical, it has valuable information that could help you make your decision.

    I made the decision not to have the radiation...your case may be different. Six months later, my mammogram was negative for suspicious calcifications.
    I also am embracing a "wellness" lifestyle, taking food supplements, exercising, practicing meditation, and losing weight- 20 lbs so far.
    Have decided to commit myself to listen to my body, take care of myself, and be the one to make future health decisions based on multiple sources of input. The final decision is mine, and I must live with the consequences.
  • swalters
    swalters Member Posts: 33

    DCIS and Radiation
    I was diagnosed with Stage 0 DCIS and had two lumpectomies to achieve clean margins. I was about the long-term effects of radiaion, so I got second opinions from reliable oncologists. One of them suggested the following article which I found very helpful,
    "Should all parients Undergoing Breat Conserving Therapy for DCIS Receive Radiation?" It was published in the 2007 Journal of Medical Oncology, authors are Melvin j. Silverstein,MD and Michael D. Lagios, MD. Although this article is somewhat technical, it has valuable information that could help you make your decision.

    I made the decision not to have the radiation...your case may be different. Six months later, my mammogram was negative for suspicious calcifications.
    I also am embracing a "wellness" lifestyle, taking food supplements, exercising, practicing meditation, and losing weight- 20 lbs so far.
    Have decided to commit myself to listen to my body, take care of myself, and be the one to make future health decisions based on multiple sources of input. The final decision is mine, and I must live with the consequences.

    DCIS and Radiation
    I too was diagnosed with Stage 0 DCIS and got clean margins after Dr.Lagios reviewed my post surgery pathology report. I also embrace a "wellness" lifestyle,taking quality supplements,eating no meat or dairy products, and taking bio-identical progesterone, all under the supervision of a very wellness-oriented doctor. While this may be too extreme for most,for me it is worth it if it means I never have another biopsy.

    I would very much like to read the article you quoted, as Dr. Lagios served as my mentor through my whole ordeal even though he lives in California and I live in Michigan. Can you tell me what web site I can find it on? I tried but couldn't get it to pull up.

    Sandie
  • warriorxena
    warriorxena Member Posts: 3
    swalters said:

    DCIS and Radiation
    I too was diagnosed with Stage 0 DCIS and got clean margins after Dr.Lagios reviewed my post surgery pathology report. I also embrace a "wellness" lifestyle,taking quality supplements,eating no meat or dairy products, and taking bio-identical progesterone, all under the supervision of a very wellness-oriented doctor. While this may be too extreme for most,for me it is worth it if it means I never have another biopsy.

    I would very much like to read the article you quoted, as Dr. Lagios served as my mentor through my whole ordeal even though he lives in California and I live in Michigan. Can you tell me what web site I can find it on? I tried but couldn't get it to pull up.

    Sandie

    article
    Hi Sandie,

    I did not get the article from a website, it was given to me by an MD doing cancer research. Since you know doctor Lagios, why not get in touch with him? I would be curious if he has written more on this subject.

    I have also pretty much given up red meat, eat only chicken and fish on occasion. It doesn't seem like a hardship at this point...I actually prefer the vegetarian foods.

    Nina
  • ohilly
    ohilly Member Posts: 441
    mastectomy
    I'm not trying to convince you of anything, but just tell you my experience: I had two mastectomies at two different times, one was preventive (I have the BRCA gene, which means it would have been more likely that I could get cancer in the other breast and I wasn't going to wait around for that to happen) and the other was for cancer. I am very, very happy with my decision. I had immediate reconstruction, and my new breasts look and feel pretty good. I do not regret it at all. My own personal opinion is that if I had had a lumpectomy, I would be constantly worrying if they DID get the margins. No matter how good a surgeon, surgeons are only human. Also, local recurrence is somewhat higher with lumpectomy (although the survival rate is the same as mastectomy), and I never, ever wanted to go through chemo again if I got even a local recurrence. I was also glad I didn't have to do radiation because of the potential effect on your heart and it would be very hard to have to go every day.

    So there you have my experience, for what it's worth.

    Good luck with your decision!

    Ohilly
  • swalters
    swalters Member Posts: 33

    article
    Hi Sandie,

    I did not get the article from a website, it was given to me by an MD doing cancer research. Since you know doctor Lagios, why not get in touch with him? I would be curious if he has written more on this subject.

    I have also pretty much given up red meat, eat only chicken and fish on occasion. It doesn't seem like a hardship at this point...I actually prefer the vegetarian foods.

    Nina

    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
  • Margaret A
    Margaret A Member Posts: 1
    DCIS Stage 0
    Hi Lauren,

    I too, rec'd a diagnosis of stage 0 DCIS in Dec 2008 and I just had a lumpectomy on Jan 22. My oncologist says I do not need either radiaiton or chemo, so not everyone does.
    However, she took a 2nd lump out while she was there and found LCIS, which is a marker that I am at high risk for developing further cancer. Now I must make a decision about what to do next..... 6 mo exams as a high risk patient, mastectomy, or drugs (although they probably won't work for me.) I'm praying about it and researching it.

    Good luck with your surgery.
    Margaret