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?

[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.

[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.

[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!!!!!!!

[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.