How did DCIS turn into stage 4 breast cancer?

[grandma1]

In October 2001 I was diagnosed with DCIS first had lumpectomy then a full mastectomy when edges were not clear. I took Tamoxifen everyday. In May of 2003 I noticed a lump under my left armpit (same side as mastectomy, It dis not go away and in Sept of 2003 after a ultrasound discovered the lump was malignant I had 12 lymph nodes removed, 10 were malignant and I was diagnosed with stage 4 |Breast Cancer Now I am taking dense dosage chemo. How could this have happened? I was told with DCIS after a mastectomy I had nothing to worry about,that there was no chances of it spreading.I am very confused as no one can give me any answers.

[vermontgirl]

I just wanted to say that my surgeon and his associate takes the same approach with their patients as you apparently do when discussing a cancer diagnosis.  My surgeon was on vacation when my biopsy results came back so it fell to his associate to give me the bad news.  At the end of that discussion, he gave us his home phone number so we could talk to him later that nite once the shock had worn off and the questions started to come!  I do realize how lucky I have been with most of the medical staff that I have worked with thruout my treatment and am sure your patients have the same feeling about you.  Thanks for always providing easy to understand and honest answers to our questions!!!!

[surgeon]

amen to that!!

[vermontgirl]

Sometimes I think the words "there's nothing to worry about"  are used by some doctors a little too freely, especially when there cancer is involved.  I realize they say this in order to reduce our worry that the cancer may come back or that the lump or ache we feel might be cancer returned.  But to us, that statement means "there is a zero percent chance of this happening" and that is what we desparately want to hear and believe.  Then, if it should come back, it is an even more bitter pill to swallow as "my doctor told me this was not going to happen--that there was nothing to worry about".  I encourage doctors to put the chance for recurrance in the right perspective by saying something like:  "with the treatment you have received, it is highly unlikely that this will return but there is a very, very small chance that this may happen."  I think most patients would be appreciative of such honesty--they would not have a nervous breakdown worrying about having the slight possibility of a future recurrance and would not be as devasted if they should happen to be one of the few cases where the cancer does come back. Instead, they would be more likely to quickly pick themselves up by their bootstraps and prepare to do battle again.  Sorry for the tirade, this is just a pet peeve of mine!

[SnowWoman]

Unfortunately there are far too few doctors out there who do as you do.  I witnessed what I would hope was the extreme of this with my mother.  She first found her lump in Nov. (Lymphoma not BC.)  Even though the doctor decided it was cancer it was April/May before they did surgery and then radiation treatments doing various x-rays and scans in the meantime.  When the radiation was done they declared her healed and sent her on her way with no real plan for follow up even though there was an issue of a spot on her lung. This they had decided was a "fungus".

Less than six months later when she got sick, the doctor sent her for another x-ray of her lungs and then promptly disappeared for nearly 2 weeks.  Mom called the office daily letting them know she was getting worse but got no info on the x-ray or follow-up care until she finally got so sick she called the ambulance to take her to the hospital.  Then they discovered the cancer was in her spinal fluid, bladder, lungs, liver, etc.  She died less than 3 months later.  

On that last doctor's visit before entering the hospital, she spent over 2 hours in the doctors waiting room and less than 10 minutes with the doctor.  While she was in the hospital the doctor spent less than 5 minutes in her room when she came by each day. Most tests we never got the results from and when pinned down the doctor's response was that we didn't want to "discourage" her. Her oncologist was in the same building as the doctor and there were several times when we went there that there were people literally sitting on the floor in the hall waiting to get in to see the doctor (the PC not the oncologist).

Even though Mom had had some issues with this doctor previously, she didn't have any other health problems and rarely went to the doctor. It wasn't until she was really in need that the problems became apparent. It's important to spend time finding a physician who cares and  can give you the time you deserve before you're in a state of crisis.  If/when that time comes, you're in no place to go looking for a good doctor.

[surgeon]

Your point is well-taken: however, it's also true that people hear what they want to hear, or what they need to hear. In my practice, it's typical to spend at least an hour in the session that explains the diagnosis and options and other issues. I give written handouts as well. And yet, not rarely, it is evident later that what was heard was very different from what was said. This could, of course, be due to poor communication skills on my part. But where I work, we survey patients regularly on the care they received, and I've always gotten the highest "grades" for communicating, taking the time, answering questions, caring. There is nothing more stressful than hearing you have cancer. Everyone deals with it differently, but in no one is there the absense of "shock" which affects information input.

[surgeon]

It's true that DCIS has a cure rate approaching 100%. One reason it's not exactly 100% is that it's not possible to look at every single cell under the microscope. So some women who have DCIS could also have a very small area of invasive cancer that would escape detection; in some of those women, it could have already spread before diagnosis and treatment. Tamoxifen reduces recurrance, but does not absolutely prevent it. Yours is a very sad story. It's also pretty rare, which is good news for most women with DCIS, but not for you. I'm sorry.

[CCF-RN,MSN-rf]

Dear grandma1:  After any diagnosis, whether "pre" cancer or occult cancer, there is never "nothing to worry about."  Prudent followup should be a part of anyone's care.  Likely, this has not spread from your DCIS - because, by definition, DCIS cannot spread.  This is more likely a new primary breast cancer.  Of course, you could go back to the original mastectomy and check to see that the pathology did not have any invasive component, which then could have spread.  Unfortunately, in a person with DCIS or any invasive breast cancer, the risk is always higher that a second primary breast cancer could develop.