DCIS - really that dangerous?

[canIlaughyet?]

Routine mammogram led to "suspicious" cysts; diagnosed intermediate DCIS after needle biopsy. I'm 46, my physician says "you've probably had this for 5 years". My question, if this has been there for 5 years, what's the rush for mastectomy? I'm thinking check it every 6 months and treat when/if it begins to change.
Also concerned about recurring pain and bruising at biopsy site - can a biopsy actually make things worse by stirring around in there?

[CCF-RN,MSN-JS]

Dear canilaughyet, DCIS is an early ductal cancer in which the abnormal cells are confined to the duct, and do not yet have the ability to spread.  The difference between DCIS and early invasive cancer (that is capable of spreading) may not be detected through mammography.  It is impossible to predict when DCIS will become invasive.  Therefore the standard of care for DCIS is to remove the lump or the breast (depending on the evaluation and recommendation from the surgeon) and follow-up with appropriate treatments depending on the final pathology.

It is not uncommon to experience bruising and discomfort at the biopsy site.  A biopsy does not impact cancer growth.

[Avidhiker]

If it were me, I'd have it OUT ASAP.  Why wait for in situ to God forbid become invasive.  DCIS has the highest cure rates.  I would question why the surgeon has recommended a mastectomy rather than lumpectomy with radiation though.

[boninclyde]

Waiting for my results today. Actually they just called but I would not answer the phone. I do not want to talk to them until husband gets home from work and we can both get the news at the same time. Crazy Hugh. Scared I guess. They have pretty much said it looks like DCIS and that I need a masectomy also. I do not know why they recommend masectomy more verses lumpetomy. Mine are both wide spread and clustered calcifications so I believe that is why they want to do masectomy. I believe I would rather get it out than to wait for it to become invasive. Let you know when I get my result today.

[Under Forty Pam]

I am slightly ahead of you in the same process.  I was diagnosed with DCIS, 4mm, Stage 0, July 17.  Tomorrow is my surgery and I had 2 opinions and neither even remotly suggested a mastectomy.  Get another opinion, a lumpectomy should be enough.  After tomorrow I can tell you what is really feels like to have the surgery.  Hang in there I am just as nervous and still scared as you are.  The biopsy only tells them a hint of the information they need to really understand what is there.  They need the lump to see its entire makeup.  Start making appointments and getting it done.  Good luck.

[boninclyde]

Did you have a lump? Did you have calcifications? How did you find yours. I have small lump just behind the nipple and alot of calcifications 2 clusters and some spread out. Doctor that did my biopsy just called only to say I had DCIS maybe comedo but not for sure on the comedo. Shouldn't he have told me more? Told me to see my surgeon. I wish you all the best. I am sorry you have to go through this. Please keep us posted.

[Mrsfun44]

I also had DCIS.  My calcifications were in three different areas of my breast.  Two were stage 1 and the other stage 0.  My surgeon recommended a mastectomy also.  I got a second opinion (from a younger surgeon) who said I had a choice.  I opted for the mastectomy after discussing with my first surgeon again.  It turns out that I think I made the correct decision as two nodes were positive and my FISH test came back positive.  Both things tell me that while it was a very early stage of cancer, it was agressive.  I've done the a/c chemo and now am starting Taxol and Herceptin.  
I wish you an easy time through everything.

[Naniam]

When you see the surgeon, ask him to explain "comedo" or check it out on the web or maybe one of the web sites I gave to you earlier.  There are different terms they use like "solid" "cribriform" "comedo" and they help determine the aggressiveness of the tumor.  I am glad you finally got an answer.  I had my echocardiogam today and more blood drawn for
my liver function test - no results yet - they are just going to be OK though.  The husband and also Dad of two ladies in my Bible Study group was taken to the local hospital Tues with possible stroke.  They found a brain tumor.  Since I had to go to Baptist Hospital (NC) today for my test, another friend rode along as he was having surgery to remove the tumor.  He was found to have a brain cancer, Stage III or IV; waiting on the path report and will take a few days but surgeon said at least a Stage III.  I think that is one of the hardest things I have done since I was diagnosed - hearing another family I knew told that a loved one had cancer.  I cried and I still get emotional.
Life is so hard sometimes - that we all know well.   Blessings,

[Under Forty Pam]

I did not find a lump, only found during a routine mammogram film.  None of the doctors can feel it either.

[carme]

DCIS...bottom line, it's cancer. If you have ever had to take care of and watch someone you love suffer and die from cancer...if you have ever seen how rust on the body of a car spreads, you pay someone to grind it out and repaint it and it comes back (that's why people in that industry call rust "cancer')...you would be *** over heels to have that cancer removed!! If you have ever watched someone you love have that cancer come back in the same breast and kill them because they were too vain to have the mastectomy instead of a lumpectomy....Is DCIS really that dangerous?  I choose LIFE...the breasts served me well, but I'm fighting tooth and nails to keep from dying from this horrible disease...so I am FLAT...ALIVE...and have a good chance of beating this disease.

[carme]

I re-read my post and realize I came off a bit harsh, but this IS cancer we're talking about...not warts, not wrinkles, not grey hair. There aren't any cures for them...and there is no cure for breast cancer...yet.  I watched it come back in my grandmother, my aunt, my mother, another aunt, and another aunt. My mother never had radiation or chemo...she had DCIS. She had the second mastectomy (DCIS again...even after Tamoxifen) 13 years after the first...no chemo, no radiation...just total mastectomy. This time 26 years after the first breast cancer...my mom dies of ovarian cancer. Granted we have the BRCA2 mutation...and the women before us obviously had it too...it's still cancer and there is no cure yet. My mom was told she was considered cured after 5 years.
I participated in the first Tamoxifen trial because I have 3 daughters and had a pretty bad feeling I would be a statistic too.
Turns out my younger sister got breast cancer 1 year before me. The doctor in the trial said I was most likely protected those 3 years longer because I had the Tamoxifen instead of the placebo.
I read posts in this forum about women afraid of side effects etc...there are no side effects after you die.

[Ejr6358]

I was diagnosed with DCIS April of this year, followed by an attempted lumpectomy and now I am 3 weeks out of a double mastectomy.  I never want to have to go thru this again. However, I also had 1 lymph node test positive with cancer cells.  This is very rare but is does happen with DCIS.  So, I get a little frustrated when I hear only 1 percent have lymph nodes testing postive with DCIS so it is not necessary to test them.  DUH..I was that 1 percent so if I had not asked them to test...I would have recurred for sure.  I am only hoping for the best.  Be aggressive about your own treatment. Question....Question...Question....it is your life..is that 1 percent not worth testing for? I bet my kids would bet so.. best luck =)

[boninclyde]

mrsfun44 - How long ago were you diagnosed? Would you please tell me everything you can about your masectomy? I to am considering a masectomy. I am scared to death not of the way things will be afterwards but I am afriad of the surgery and being put to sleep. How are you now? How long ago was masectomy?

Naniam - I to am from North Carolina - Charlotte. Do you live close to NC Baptist Hospital? I will be getting care from the Blumingthal Cancer Center here in Charlotte.

ejr6358 - I am leaning toward the masectomy. Again I'm so afraid of the surgery. Not losing the breast. My husband is great. I am greatful for such support. We have both been reading up on this. I have cried everyday and night for almost three weeks now. I think I'll have a nervous breakdown. My life was wonderful just three weeks ago. I'm sure your stories are the same. Stange how life can change so dramaticly in such a short period of time. I am a housewife, surround myself with family and don't have any friends. I don't even know where my children will stay while I go through this surgery. I'll see my surgeon on Monday. How are you? Are your kids OK? Did you opt for reconstruction? I don't think I want anything else in there since it may block view of any future cancers if they return.

Please keep us up to date. To many post here that don't return to share there stories. I'll write on Monday to let you know what my surgeon says.

[boninclyde]

Even you second post is very harsh. We are trying to survive.

[Ejr6358]

I am so sorry to hear you are so upset.  I have been there and still go up and down.  But physically I am feeling better every day.  My husband has been the biggest support and friend I could ever hope for.  It is hard for me to be around friends when I am down anyway.  

All I can say to you...hold on to your husband and your family.  The surgery was not bad...I was in for 9 hours and it seemed like 10 seconds...so that is not bad.  I did opt for reconstruction..from the tissue in my back.  I am thankful that I did....the first week is not bad because you are still so numb..I would say week 2-3 was tough because feeling returns and the drain tubes start to get on your nerves.  I just had mine removed this past thursday and that has made a huge difference.

I quit looking on the internet because it was freaking me out.  The reconstruction pics were making me sick.  So my surgeon showed me his work and that made things better.

I wish I could make it easier for you....my husband knows....I have not been myself since my diagnosis.....so don't feel bad...I have gone off the deep end several times...and he was always there to catch me..it is a huge hit to a woman...it does make you feel like you are going crazy....

Good luck on Monday...I will put you and your family in our prayers.

[boninclyde]

I have the best husband and the greatest kids. So glad to see things went well for you. Good to see your family is supportive also. Such a long surgery. Did they do your reconstructive with the surgery? Look for brighter days ahead. Thats what will get me through the surgery.

[Mrsfun44]

I was diagnosed on March 3 of this year and had my mastectomy on March 20.  Looking back, it wasn't bad.  I was in the hospital 3 nights (could have gone home after 2, but doctor said I could use the rest, so I agreed).  I was concerned about the drains and how I would be able to care for them, but that wasn't difficult either.  My biggest complaint was feeling like there was a lump in my armpit.  My surgeon said I would probably feel that for some time, but it was still swollen.  Well, after reading all the posts on the underarm pain (not really pain, but discomfort), I realized that "some time" was really a very long time.  But, as everyone said, you get used to it and learn to deal with it.  Then I was very concerned about the chemo treatment.  My side effects were minimal, but I have to agree, I too, cried a lot and for no apparent reason during that time.  I finished the first part of the chemo and now am on the second part - also was concerned about the side effects of that too.  Again, I seem to be very lucky and haven't had anything to speak of.  I just decided that the time before things happen is my worst time.  Good luck and I'm sure whatever you decide, it is the best decision for you.

[Mrsfun44]

Just going over your comment again.  No, I didn't have reconstruction.  I'm 64 and decided I really didn't want to go through more surgery.  My children are grown, so I didn't have to worry about them while I was in the hospital.   My hustand is very supportive of my decision and I think that sometimes this is harder on him than me.   I had a visiting nurse come twice after I was out of the hospital, but I really didn't need that and they agreed.  My surgeon checked on her surgery every week for the first few weeks and then every other week.  Now I don't have to see her until October.  What I still feel is a tightness in my chest.  I guess this is from the scar tissue.  I know there are excercises you can do that would prevent this, but I'm not the greatest when it comes to that.

[Naniam]

Hi, I went out of town over the weekend and just returned. My liver function test returned normal this time and also my echocardiogram was OK.  I recently read an article on Yahoo under their health section that said with Adriamycin (which I had) that damage didn't show up until years later.

I live in Hickory and had my surgery here.  I think I mentioned that they were sure I had BC so they did an excisional biopsy (removed the tumor) and I was told they got all of it.  When I returned for my postop visit I was told they didn't get clean margins/edges and 4 days later I was back in for re-excision of margins and a sentinal node biopsy.  My lymph nodes were clear, however, when I returned for my postop visit once again I was told they still didn't get clean margins/edges and that he had removed a total of 8 lymph nodes.  That kind of upset me as if the first node is negative, then it isn't necessary to remove more and also we still didn't have clean edges but they had removed all the breast tissue they could without doing a mastectomy and that chemo and radiation should take care of any cells left behind.  My daughter is an RN and my son-in-law an MD on staff at University of Virginia - he has friends at Winston and ask which surgeon I should see for a second opinion.  I went and decided to take my treatments there; I haven't been sorry.  They have been extremely kind and considerate and if the least thing turned up abnormal(and I have had plenty) they checked it out and everything has been just fine.   The surgery for me wasn't so bad; the worst thing for me was the darn drain after removal of my lymph nodes.  I am allergic to anytype of tape they have to use and by the time the drain was removed I had blisters from the tape.  That really got on my nerves.  My husband has been wonderful.  I remember that I was told they felt sure I had cancer and it is one thing to be told that but another thing to actually hear the phrase "it was cancer".  You say you are a stay at home Mom and have no close friends or family near you. SOME people that I thought were friends fell by the wayside; people that I thought were casual friends have stood with me. There were times, because we own a small business, that my husband could not take me for my treatments or the Neulastra shot the next day and friends/family took me on those occasions.  I remember thinking the day my gynecologist called and told me what was suspected on my mammography films, I was just numb and scared and I remember telling God "I prayed that this isn't a mountain you would ask me to climb but for whatever reason you have chosen I needed to, I am scared and angry and just don't leave me"  For me, I can tell you that without my faith, without the prayers of many, many people and my friends, family and church this would have been a much more difficult journey.  Do you have neighbors close by that you talk to?  I don't know your personal situation and I am not prying, but if either you or your husband have family a state or more away, they may surprise you when they hear what is going on.  Keep us posted.  Ask any questions you like.  I will tell you and others your life is forever changed.  There will keep really close tabs on you the first year and then it gradually spreads out.  Much is mental attitude and you, like many of us, will decide that cancer WILL NOT rule our life.  Everyone cries, everyone ask why and more than one day I cried and said "I just want my life back"  I have my life but it has changed.  Blessing to each and everyone who reads this post; it is lengthy.  I am not familiar with the cancer center where you are going in Charlotte.  I have a sister in law who did have her surgery and treatments in Charlotte (she lives here too)and she had reconstruction surgery and she later developed lymphoma but she has been free of all cancer now for 5 years!!!!!!!

[Naniam]

One thing I forgot to say to you.  The surgeon ask me how I felt about loosing my breast (mastectomy) and I told him I preferred a lumpectomy if possible.  I did ask questions about mastectomy and if it was all done at one surgery at an appropriate interval after the mastectomy.  He told me no, that normally it was a staged procedure, meaning more than one surgery.  To be honest, I had to consider that from a financial standpoint.  My insurance deductible and copay had started all over again on Aug. 1st.  My first surgery was on Aug. 19th.  I knew that all of this could not be done in a year and would end up having to meet them for a second time plus the fact that we own a small business and it would be hard to be out for the extra surgery.  I am sure for many women that wouldn't be important; for me, it was something I had to consider.  However, as I said, I preferred lumpectomy from the beginning.  My sister in law had the tram flap reconstruction.  She hasn't regretted the reconstruction but she has said she wished she hadn't opted for the tram flap as she has had some problems with it in recent years.  Her BC was discovered about 10 years ago; then she developed lymphoma.  I didn't make that very clear either.

[healthcareguerilla]

I was diagnosed with DCIS, (just meeting minimal criteria for this diagnosis), and LCIS in my right breast in 1998.  Not discovered through any imaging.  I had a painful lump for two years, that no one thought was problematic.  All that was done was an excisional biopsy.  That was it.  And no meds following.

Responses here have run the gamut.  If I were you, I'd get a second, third, and even fourth opinion if necessary.  It sounds like you're using your head, rather than reacting and taking action through fear.  You are right.  Unless there is a fast-growing, invasive cancer, rushing to mastectomy is not necessarily any kind of 'answer'.

What helped me most was Susun (that is SusUn) Weed's book, Breast Cancer? Breast Health!  As with anything, take what you need and put aside the rest.  I did.  For one, the writings are empowering.  For another, she offers what I consider a sound protocol and solid medical information.

As you have probably researched and read by now, in-situ cancers are not guaranteed to become invasive.

There are funds available through various entities to assist.

Be well.  Be tough.  Take care.

[jrclarkbutterfly]

I am a 43 year old woman who went for my yearly screening in June.  My doctor took slides of my right breast discharge and scheduled me for diagnostic mammogram July 12th.  My discharge come back negative but in my mammogram showed a small 1/2 mass with fingers growing and of ill defined shape.  I was then sent for an Ultrasound and the Radiologist stated he didn't think it was cancer.  He had a very difficult time finding it on the test.  I went for a FNA and was told it was Fat Necrosis but need further investigating.  I am now scheduled for surgery on Friday the 4th of August.  What does the fingers mean?  Very scared!  Please talk with me I have no one to talk to about this.  My daughters try to avoid the subject and my husband is not one to talk about illness.

[central coast ca]

Yes, DCIS is serious. I was diagnosed with DCIS, stage III, comedo, multifocal in April 06.  I am having a bilateral mastectomy with reconstruction (implants) Sept 06.  I consider myself extremely fortunate because my mammogram caught it before I reached the invasive stage. I voluntarily elected to have the both breasts removed, as opposed to only the one with the DCIS for various reasons.  One, all three of my doctors, surgeon, plastic surgeon, and onocologist all stated when I asked them if I were their wife, what would they recommend, each said bilateral mastectomy.  Two, my plastic surgeon added that since cosmetics results were important to me, I would have a better cosmetic result with a bilateral.  Three, my non-DCIS breast's mammogram shows that I have benign microcalifications.  This is just how my other breast's mammo's started.  Four, I know me.  I will always be comparing the two breasts and fixating on the DCIS breast.  Last, every women I spoke to who has had a mastectomy has said that she wished she would have had both done.  I am very offended when some women question my desire to have a mastectomy, let alone a bilateral.  I choose life and my children over a boob any day and thank GOD that I am one of the fortunate ones who can have this choice.  My cousin and two aunts did not.

[carme]

DITTO!

[boninclyde]

Sorry I have not responded to you but I have been gathering info. Sorry to see in your earlier post your not feeling well. I do need to talk to you. I need your info. Just give me a few days to do more research for doctors. Also making questions for my upcoming plastic surgeon visit this Wednesday then I have to meet with anatheiologist ( ooops spelling sorry) Again Thank you so much for sharing your story. See my post just above this one and we can always talk. Your in my thoughts.

[lynnsw]

I've just read all these postings and found them to be very interesting and in some cases, informative too.  After a routine screening mammogram followed by a diagnostic mammogram, stereotactic needle biopsy was recommended for an area of calcifications in my right breast.  The report on that showed DCIS, non-invasive, and after the various options were discussed, I opted for a lumpectomy without radiation.  This was done on September 6, and I got the results of the pathology report in my follow-up appointment with the surgeon yesterday.  It turns out that the DCIS was multi-focal and also that in the margin of the area a tiny bit of invasive cancer was found.  I am now grappling with whether or not to handle the situation with radiation or simple mastectomy.  I'm not a young woman any longer....grandmother and all that....but I still like looking nice so would probably opt for reconstruction.  I've been doing a lot of reading about all of this and am thankful that there is so much good information available on the Internet.  I'm going to be referred to a cancer center in the area where I live just for consulting with them.  If I decide on the mastectomy, I'll still use my surgeon who did the lumpectomy.  I trust him completely.
I have nothing to offer here, really, other than my "story."  It helps, though, to talk about it to people who understand.  I wish all of you luck and blessings in your battle with breast cancer.