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DCIS and recurrence

terri805
Posts: 123
Joined: Dec 2009

I was just wondering how many of you have been dx with DCIS and had a lumpectomy, rads, Arimidex and then later had a recurrence? My dr said that having a lumpectomy,rads and Arimidex treatment was just as effective as having a mastectomy and that the chance of recurrence was as much as someone being dx that has never had it before. Any thoughts about this?

GreeneyedGirl's picture
GreeneyedGirl
Posts: 1001
Joined: Sep 2008

I was diagnosed in 06 with dcis, it was contained, a stage 0. I had a lumpectomy and 33 radiation treatments. I was told~ a 4% chance of re-occurrence. Well, someone falls into that 4%~ and it was me, 2 years later. So, I wound up having a mastectomy on my left breast~At the time of my initial diagnosis I based my decisions on the information at hand. There was/is no family history~ I cannot change the course of what occurred but, if I could have foreseen what was ahead~ perhaps my decision would have been different. But, we can't see what is ahead. I don't mean to confuse you. Just really think about your options. And if some option you think of is not offered to you~ASK if it can be. Be very active in your health care.
I hope my information has helped in some way.
Melanie

Sharon_D
Posts: 55
Joined: Mar 2010

Leading up to my surgery in July 2009, my dr really leaned toward a lumpectomy but my husband and I discussed it and we didn't want to risk the chance of it coming back, so I chose mastectomy. As it turned out, there were 3 cancer sights and it was in 1 lymph node, so I really had no choice, but I didn't want to risk it and I am glad I took the aggressive approach. I'm 62. If I was younger, it might make more of a difference to me, but I chose not to reconstruct.

By the way, my dr told me that 4% of his patients that had the condition I had, actually tested positive for cancer. I was in that lucky 4% also!

susanleeann's picture
susanleeann
Posts: 58
Joined: Feb 2010

i figure it doesn't matter how small the percentage is--if it happens to you it is a lot! the doc may say this or that side effect only happens in less that 3% of patients, if it happens to you, it does not matter any more.

terri805
Posts: 123
Joined: Dec 2009

hi melanie,
what do you think that you might have done differently had you foreseen what was ahead? I just finished my first week of rads and then i am suppose to take arimidex.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Having a lumpectomy with rads has the same recurrence as having a mastectomy. I don't think that some women are told or informed that even with a mastectomy, they can never get all of the breast tissue. So, I think women get totally shocked when they get a recurrence after having a mastectomy. Also, rads kill any stray cells and some women with mastectomy's don't have rads. And, some have no choice.

Megan

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi Terri. I had a lumpectomy for DCIS in July 2009, had brachytherapy rads, and am on Tamoxifen. My radiation oncologist said the chance of recurrance, without Tamoxifen would be about 4%. Taking Tamoxifen would reduce that to 2%. Both he and I felt that the side effects of Tamoxifen weren't worth the 2% reduction, so at first I refused it. Then I did some online research and saw the oncologist again. He said the fact that my cancer was grade 3 pushed the chance of recurrance to 14%. Wow. Much higher. So Tamoxifen would reduce that to about 8%. Eight in 100 women would have a recurrance if they had all my factors. Hmm. I started taking the Tamoxifen. When I next talked to my radiation oncologist, he said, it's a good idea to go with what your feelings tell you to do. If you think the grade 3 is trouble, then take the Tamoxifen. Not very scientific, but my radiation oncologist is considered a god among rad oncs, so I'll continue with the Tamoxifen.

I'll be interested to hear from other women about this!
~~Connie~~

parisny
Posts: 2
Joined: May 2010

looking for a good radiation onc.
who is yours?

cassas
Posts: 3
Joined: Jun 2010

Connie,
I am replying to a post from March of this year so you may not even see it. I was diagnosed with DCIS in April of this year. On May 24th I had a lumpectomy the path report came back as DCIS stage 0 grade II. All my margins were clear to greater then 5mm. My docs are advising radiation and tamoxifen. I have been doing some research and am now finding myself so confused. At first I could not understand the need for what I felt was to aggressive a treatment plan. I felt that my cancer was too small and it is also considered non-invasive. I am considering just being very careful and having mammograms every 6months. Has your research come across any info for Stage 0 grade II or does anyone else have any advice or suggestions? I think I have just filled my brain with so much information that I am now totally confused.
Thank you for all of your information on this site. I have found it so helpful to read how others are coping with a cancer diagnoses.
Cheryl

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi Cheryl,
I don't know what I would have done without the internet. You know that there are cancer websites that are less than perfect to visit. They may have half truths or go out of their way to tell scary breast cancer stories. You DON'T want to visit those. If you find yourself there, get off. But I also read a lot of books, too. I was a bit manic after diagnosis and actually made myself sick, trying to take some action instead of waiting for this report and that test and this doctor to get off of vacation, etc. Here's a little trick, after you feel you have a good handle on just where your condition falls in the breast cancer spectrum: I would go to a bookstore, pile up the breast cancer books in my arms and find a chair. Then I would use the table of contents or the index to read only the parts about DCIS or whatever topic I was interested in. Then I'd put the books back. I owned 7 cancer related books before it was all done and I have given many of them away to other women.
Stick to the known organizations for research like Susan Komen, Susan Love Research Foundation, breast cancer.org, this one (American Cancer Society), etc. One I found very interesting is www.dciscancer.com/databases/dcis_researchlists.php It is a database for dcis research.
I was tempted to skip radiation but one margin had a speck of cancer, not at the margin. None of my docs said I should have a re-excision, that it was OK. But the research shows that the wider the margin, the better your chances of getting all, in DCIS cases. So I had asked my surgeon to 'go wide' and she did, but not in the right area, I guess. That fact, and that it was stage 3 made me decide to do the radiation and Tamoxifen as hormone therapy (I'm 7 months into that).
You are a candidate for the kind of radiation I had. Not everyone is. It was over in 5 days. Please visit this website for info about radiation options: arizona-breast-cancer-specialists.com Even if you aren't in Arizona, the website has amazing information you'll want.
I posted this information here because I want as many women to know about the radiation options as possilbe, but, Cheryl, feel free to send me a personal message if you'd like to correspond on a personal level.
~~Connie~~

NEDandHappy
Posts: 2
Joined: Nov 2012

Hi Connie, I was diagnosed with DCIS grade 3 in Jan 2012 and after 2 lumpectomies and 30 bouts of radiation I am NED. Trying to decide about Tamoxifen. Two MOs both told me it was completely up to me snd didnt really help me at all in this decision. Are you still taking Tamox and how are you doing in general? My stamina is back and I'm working to get my BMI below 25 so I am feeling good. All insights are appreciated.

NEDandHappy
Posts: 2
Joined: Nov 2012

Hi Connie, I was diagnosed with DCIS grade 3 in Jan 2012 and after 2 lumpectomies and 30 bouts of radiation I am NED. Trying to decide about Tamoxifen. Two MOs both told me it was completely up to me snd didnt really help me at all in this decision. Are you still taking Tamox and how are you doing in general? My stamina is back and I'm working to get my BMI below 25 so I am feeling good. All insights are appreciated.

gpercle
Posts: 1
Joined: Mar 2010

Hi. I was diagnosed last May at the age of 39 with bc. No sign family history. I opted for the mastectomy (right only), since breast mri, etc. did not indicate any cancer in the left. I also had reconstruction at the same time. I am soooooo thankful that I made that choice - when they removed the breast tissue and sent it off to the oncotype dx pathologists, they found another area (away from the known tumor) with microscopic cancer cells that did not show up on the mri, etc. If I would have chosen the lumpectomy, I would still have cancer in me. And, thank goodness it did not spread to my lymph nodes. I went through four cycles of chemo and now take tamoxifen. I also recently had a hysterectomy since my ovaries 'came back with a vengeance' and my estrogen levels were sky high! My doctor and I agreed that it was the best choice. Anyway, I was not considered high risk and do not carry the genes for breast or ovarian cancer, but I am totally comfortable with my decision to do a mastectomy!

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

Your doctor is right that lumpectomy and rads is as effective as mastectomy. Of course there are those who have a recurrence, but there are many more who do not. I had stage IIa triple negative breast cancer, grade 3, and choose to have a lumpectomy, chemo, and radiation. I do not regret my decision and won't even if I have a recurrence since mastectomy does not eliminate your chance of recurrence to 0. Do your research and then go with your gut. Good luck.

Mimi

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

I agree with everyone else that you need to do what you feel is right for you. In 2000, at age 47, I had a lumpectomy with radiation and started on Tamoxifen but had to stop due to blood clots. At the time of the biopsy, it was determined that I had DCIS, but when the lumpectomy was done, I also had a small amount of invasive cancer.

In 2009, DCIS was discovered in the same breast and I chose a bilateral mastectomy with immediate DIEP reconstruction. The pathology report showed the DCIS that had been found on the MRI and another spot quite a ways away.

In each case, I feel that the treatment that I chose was the right one for me at the time, and I've had peace about it.

Joyce

terri805
Posts: 123
Joined: Dec 2009

I was feeling pretty confident about my treatment with the hopes of after rads I would be cancer free but after reading posts that in some cases cancer was found far away from the original siting when a mastectomy was done and pathology found more cancer in the breast removed. I thought that cancer would show up on mri's,mammo's, and ultra sound? So now I have to worry that more could be hiding in my breast somewhere that wasn't seen? Greatttt! I thought that if it wasn't seen then it wasn't there. I feel really stupid now for thinking after rads that I would be cancer free but maybe not. Hmmm... this burst my bubble.Just like when I was told that microcalcifications are not cancer 80 to 85% of the time. Well here I am in that 15 to 20 %. I guess I will just have to suck it up and not worry or dwell on the fact that there is a chance it could come back or that there was more than was seen.

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

Terri, I hope that my comments didn't scare you. Please remember that the chances of a healthy life post breast cancer treatment are much higher than the chances of a recurrence. And, diagnostic tools are getting better and more accurate every day, so even if you do have a recurrence, it will likely be caught early and be very treatable.

Joyce

terri805
Posts: 123
Joined: Dec 2009

Your comments did not scare me anymore than I already am. I just try not to think about it or worry because it is not going to make it not happen and I don't want to spend my time worrying so when it pops into my mind I just try to block it because I don't want to think of a recurrence as a possibilty. Wow I think I am just rambling on. Sorry. I just want to believe that once I get through this treatment I will be done forever.

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

I know what you mean about being in that 15% to 20%. I feel like I got burned with those odds so why couldn't it happen to me again, with recurrance odds.... But please remember that the reason you are undergoing radiation is to kill off any remaining bugger cells that might be hiding. Although DCIS isn't invasive, the down side to it is that the cells tend to follow along ducts and start new 'colonies', again, not invasive, but widespread in the ducts of the breast. Hence, the radiation. Even though we were caught in the small percentages of cancer statistics once, doesn't mean we always will. In fact, the odds are, it's our turn to fall in the larger percentage now, right? Hope you can stay positive, Terri.
~~Connie~~

GreeneyedGirl's picture
GreeneyedGirl
Posts: 1001
Joined: Sep 2008

At the time I was diagnosed, my surgeon recommended that we spare breast tissue with the lumpectomy. I was in such shock at the diagnosis, i had been a caregiver to my mother who had passed away 6 mo earlier to renal cell carcinoma. I was still grieving her death when I got my own news. I know, that I made the decisions I did at the time-based on the information i had, plus the input of my family. I trusted in those decisions at that time. I think it is natural to look back and say, I should have, why didn't I...but, I don't dwell or stay there very long. I had really large breasts before-and I am a bit on the petite side. I love my new smaller boobies. I can zip up my clothes now!
It is important to move forward, and lay hold of the journey I have been on, and just be thankful where I am now. Healed, restored and feeling whole.
Don't let fear rob you of peace of mind. Sorry if I posted anything that caused you any confusion~that was not my intention.
Melanie

terri805
Posts: 123
Joined: Dec 2009

You did not post anything that confused me. I just go up and down with what if this and that and so on. I keep telling myself to just take one day at a time and not to spend my life worrying about things that might not even happen but sometimes I get myself all worked up worrying about stuff.I like your positive attitude can I borrow it? lol

terri805
Posts: 123
Joined: Dec 2009

Thanks for your words of encouragement. I try to be positive for the sake of my family and of course myself to but I just go through worry periods.

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

Terri, there will come a time when you'll go hours, then day, without thinking about cancer. It will be wonderful to realize, hey, it didn't even cross my mind yesterday. Beleive me, there is a good life after the treatments. Look forward to the things that you want to do when these radiation treatments are done. We went on a two week sailing vacation a few weeks after I was done. It was a great way to rest up for the post-cancer life.

Joyce

parisny
Posts: 2
Joined: May 2010

If I'm supposed to be remaining positive, and am scheduled for a lumpectomy this week, reading about finding cancer all over when there's a mastectomy has DEFINITELY taken its toll. maybe i should go off this site!

jbug
Posts: 285
Joined: Nov 2009

Glad you posted your question...i've been reading what other sisters have posted. My dx in Nov 09 was IDC and DCIS, Stage 1 and i decided on lumpectomy/rads...made my decision based on research data on long term survival differences btw lumpectomy and mastectomy...as well as potential for recurrence for me was identified as 1-2%. So, looking at the glass half full...98-99% of NO recurrence.

Honestly, i felt fear and a bit of panic when i read posts of sisters w/recurrence, women that had lumpectomies and mastectomies. But there are also lots of women that have not had recurrence. Personally i'm happy w/my treatment decision and am trusting God in being completely healed now. I'm taking tamoxifen for long term prevention and will continue to have followups...I'm working hard to move forward and not live in fear of the future.

Good luck w/your decisions...God bless...
Julie

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

I believe, ladies, that those sisters with no recurrances have moved on, do not read this board anymore, and we don't hear from them. I feel so bad for those women in the smaller percentage who end up with a recurrance. The larger group, those for whom no cancer reappears, is the group we don't hear from. Wouldn't it be wonderful if they could tell us their stories?!
~~Connie~~

cassas
Posts: 3
Joined: Jun 2010

I know the last post was quite a while ago... I have recently been diagnosed with DCIS. I had a lumpectomy on May 24th and the pathology report confirmed what the surgeon suspected. Stage 0 Grade II ER & PR receptor carcinoma. He said he believed he got it all and the margins are clear to greater then 5mm. The advised treatment was radiation daily for 5 weeks followed by 5 years of Tamoxifen. I have not decided yet whether I want to proceed. I have been doing a lot of research and am even more confused. My gut is telling me that if my cancer was so early and the surgeon believes he got it all; I have clear margins; then why would I want to expose my self to the possible side effects (and especially long term side effects) of radiation and hormone therapy? I have been reading about Hormone Balance, Nutrition and Environmental ways to boost immune function and decrease my chance of recurrence. I would be interested to know if anyone has had a similar diagnoses and what their treatment plan was.
Confused and worried :)

John_32's picture
John_32
Posts: 71
Joined: May 2010

My wife was also diagnosed with Stage 0 DCIS last year. She underwent a lumpectomy followed by a month of radiation on her breast. She could not be given Tamoxifen because she had the Triple-Negative type of breast cancer that does not respond to these drugs. She was also advised to have chemotherapy and mastectomy, but declined, and part of her reasoning was her reliance of the surgeon's statements that she had clear margins, that the cancer had been detected and treated very early, and her concern about the side effects of chemotherapy. Since then she has seemed fine, but earlier this year I began noticing personality changes and then she also began having seizures. A subsequent scan revealed that the cancer had spread to her brain. Because I would hate to see anyone else go through this I really encourage women who are newly diagnosed with this disease to be as aggressive as possible in their treatments from the beginning. I can tell you that in my wife's case, the radiation had mimimal side effects, mostly tenderness of the breast and fatigue. My mother was also diagnosed breast cancer last year (Stage IV) but has been able to take tamoxifen and has been doing extremely well with virtually no side effects at all-you would not even think she has cancer. Changing your diet and using natural products (i.e., shampoo, soap, toothpaste, deodorant, make-up, soap, laundry detergent, etc.) are also important, but you should do this as a supplement to whatever medical treatment the doctors advise, not as a replacement. Strange as it may sound, you should actually consider yourself fortunate that you *can* take tamoxifen, since merely taking a pill each day is a lot less traumatic than going through chemotherapy or having your breasts removed (the only options that were available to my wife). Of course you have to do whatever you think is best in your case.

cassas
Posts: 3
Joined: Jun 2010

Thank you John for your comments. You have certainly given me a lot to think about. I am so sorry that your wife's cancer spread so quickly. I appreciate all the responses to my questions and will definitely take this decision seriously. These sites have been a blessing to me. With all the researching I have been so confused. It is so helpful to be able to read how others have coped with similar situations.
Cheryl

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dear Cassas,

After lumpectomy last September, I was diagnosed with DCIS, stage 0, grade 3, ER & PR +.

After talking with an onocologist & a radiation onocologist I decided to have a bi-lateral MX. At the time my mother was dying from BC, my grandmother had had BC, I was BRAC1 & 2 negative. My mom had taken tamoxifen for five years and was one of the rare ones who developed an aggressive endometrial cancer. I was not comfortable with taking the Tamoxifen for that reason. I took it for six months while I waivered back and forth: Radiatian or BMX. I like you, was concerned about the long-term effects of radiation. I was 39. So after months of reading, thinking, consulting and praying I decided to have a BMX. It was an incredibly difficult decision to make, but one that I feel was the right one for me. I had very dense breasts also which made it difficult for mammograms and MRI to see what was going on. All of those things factored in to my decision. (A side note, they did not find more cancer, but they did find calcifications in the right breast that neither mammogram or MRI picked up).

You need to do what your gut is telling you to do. We know our bodies better than anybody else and we need to trust what we feel deep down we need to do.

Be informed, but ultimately do what you feel you need to do.

Bless you,
dh

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

I think Dawn said it best, do what you feel you need to do and what is best for you.

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

I am so glad you researched the archives on this topic, cassas. Invaluable informatin there. But sometimes it's good to get current opinions.

Unlike Dawne.Hope, I had only a lumpectomy for my DCIS. No family history of Breast Cancer, nor was it found in more than one spot.

Please look into having brachytherapy ("brak-ee-therapy")irradiation. I hope it's offered in your state by a practiced radiologist. I had interstitial multicatheter brachytherapy (see my Expressions) but most women seem to have Mammosite, SAVI, or Contura. The radiation is done in 5 days! No burning of your skin, either.

I have been on Tamoxifen since November. Researched that a lot and decided, since my DCIS was stage 3 (fastest growing, most aggressive), I would give hormone therapy as much of a shot as I could stand.

It was one year ago tomorrow that I heard the words, "You have breast cancer."

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Don't know about after DCIS, but there is a study (MD Anderson)that preventive mastectomies are not very helpful unless patient is ER negative. I'm ER positive and had a mastectomy in 1987 after invasive ductal, then had a preventive mastectomy of the other breast in about 1993 after 2 of my 3 sisters also had breast cancer. I had bone mets recurrence in 2009 anyway. But we did what we thought was best with the info that we had at the time.

http://www.mdanderson.org/newsroom/cancer-newsline/past-episodes/contralateral-prophylactic-mastectomy.html

disneyfan2008
Posts: 5259
Joined: Oct 2010

I had DCIS 4 1/2 yrs ago...lump/ radiation 2 wks ago mammo/ ultra sound..found something..going to see surgeon...

NOT sure what it is yet...something suspicious.

ON my 5th year tamoxifen-totally hysterectomy due to meds

I"ll find out this week..I HOPE

Denise

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