DCIS and recurrence

terri805 said:

I am feeling somewhat nervous
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.

i agree
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!

cassas said:

DCIS & radiation therapy
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

similiar diagnosis
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

Dawne.Hope said:

similiar diagnosis
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

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

cassas said:

DCIS & recurrence
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

websites
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~~

crselby said:

websites
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~~

Hi Connie, I was diagnosed
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.

I had DCIS 4 1/2 yrs
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

KellyCoe said:

DCIS and recurrance of cancer

I am scheduled for a lumpectomy on Jan.4th after a dx of DCIS suspected to be stage "0".  I had questions of the staging since only a local biopsy was done.  My MRI is tomorrow.  I have large, dense breasts, a 10 yr younger sister with a MX and chemo, my mother had breast cancer too long ago for genetics testing to have been done (my tests won't be back for four weeks).... and I feel I've been led down the road of lumpectomy only to find something else is there, some recurrance in the near future.  I'm 68, still ski, love to travel, go birding, still very active.  I'm scared at this point.

what's your update?

Hi KellyCoe.   You've read my posts to this topic over the years.  Thought I'd update you on my situation as it may pertain to your situation.  My DCIS came back 6 years after my initial diagnosis, first one June 2009, second one April 2015.  As you read, I had a lumpectomy, brachytherapy, and took Tamoxifen the first time.  I only took that for 1.5 years because it was causing changes in my uterus.  My oncologist said, "It's only DCIS" so I stopped it.  I rejected the option to take an aromatase inhibitor fearing the joint pain side effects.  I felt sure I was done with it and had gotten it all.  The second time, the DCIS was found just anterior to the lumpectomy site, the side of the lumpectomy tissue where a speck of DCIS was found in the margin in 2009. No docs said I should have another surgery for wider margins, I guess because it was IN the margin, not AT the margin.  In any case, there must have still been some DCIS in the duct work heading in that direction.  It took 6 years to grow big enough to see on a mammogram.  I have heterogeneously dense breasts but I don't think that was an issue here.

Standard of Care says that a recurrence requires a mastectomy.  I was panicking, because that would have meant a double for me because my breast are SO large (it was called macromastia) that the unbalance would have been a problem for my neck and shoulders.  I pursued having a second lumpectomy because: #1- I had lots of tissue to spare and could still look pretty normal, #2- I'd had brachytherapy, not whole breast radiation, and so it might be possible to remove the tissue affected by radiation, then have whole breast radiation after the second lumpectomy, and #3- the grade of my cancer was intermediate, which was lower than the initial grade in 2009: high grade.  So I found doctors at Cancer Treatment Centers of America who would go along with my desire to have a second lumpectomy.  I had an oncology breast surgeon remove the new cancer, the fibroid filled lumpectomy cavity, and the hardened tissue surrounding it.  Then a plastic surgeon removed more tissue to reduce my breast and closed it nicely.  The incisions didn't heal well because of poor circulation due to the 2009 irradiation effects on that tissue.  It took 4 months but they finally healed.  Then I had the best news of my life.  The Genentech company made studies on some genes and their predictive effectiveness for DCIS samples.  In 2009 they only had studies on invasive cancers.  My Oncotype DX test results showed that radiation would have very little effect on whether or not my cancer would recur.  Now those results would hold true statistically only for first time DCIS, but I'm going to assume those gene tests would also apply to a recurrence.  The research was not done on recurrences.

When the biopsy was done in April 2015, there were clearly residual calcifications of DCIS left behind, heence the need for the second lumpectomy.  The day of that lumpectomy, 3 months later, no calcifications could be found so only the "clip" left behind during the biopsy could be used for directing the surgeon to the area needing removal.  When the removed tissue was examined microscopically, there was no DCIS found.  Where did it go?

I did not have radiation and moved on to having the other breast reduced to match.  That tissue, when examined, showed no DCIS or abnormal cells at all.

January 1 I started taking Aromasin.  It is a drug that has its share of side effects; it has a profound effect on a person's body, so I don't do this lightly.  But it seems a prudent thing to do since my DCIS has shown up twice, and it was not low grade either time.  Like everyone says, you must be comfortable with what you choose.  Just ask for all kinds of tests, because the more you know about YOUR cancer, the better suited the treatments can be.  There is so much about the treatments that affects us for the rest of our lives that it is essential to do as little as possible to be sure as possible you are rid of your cancer! Some people need to reduce all ambiquity about their situation to as close to zero and others, like me, can live with the thought of recurrence.

I hope to hear that the MRI showed nothing new, that the DCIS was localized, and your genetic tests are good news.  It's all scary but gets better the more answers you have and as you get a plan in place for treatments.

~~Connie~~