No more treatment after lumpectomy

Amain

No more treatment after lumpectomy

Amain

I had a very small area of DCIS and a needle biopsy in Oct. and wide excision 2 weeks ago.  I had clean margins; the spot of DCIS was 2mm in diameter but the amount of tissue removed was 6 cm x 3cm x 2xm.  Seems like a lot for a tiny speak of microcalcifications.  After much research and dicussion with breast cancer researchers, the top people in the field of DCIS study, I have chosen not to undergo additional treatment like tamoxifen and radiation.  I believe, as many women on this discussion board have said, that treatment for this, as yet under-understood disease, is far worse than the disease itself.  Why put all these toxins in an otherwise healthy body when there is not compounding reason (like family history of cancer) to justify it?  It's called CYA.  My opinion is this:  until I have a REAL cancer tumor, I'm not doing anything more.  If I get a real cancer tumor, then double masectomy immediately.  I believe that DCIS is the new "in" disease...something that isn't even proven to be cancer yet all the medical community wants to treat it like it is because they really don't know what it is.  Is it cancer?  No, but it could be...they just don't know.  Not to diminish those that have suffered invasive cancers, but an "in situ" diagnosis means just that, it's "in it's place" and probably won't become invasive.  Until it does, there is no way that I going to pollute my body with known toxins like radiation or tamoxifen.  Yes, you must be your own advocate and make a decision that you are comfortable with.  I saw a specialist at the Mayo Clinic and she said, "take it out and forget about it".  That's what I did and I"m sticking to the decision.  Good luck to everyone fighting this dreadful disease. 

CrunchyPoodleMama

Amain, I read where you had said this on another thread, and even though I didn't have clear margins, I'm considering taking that approach too. I DEFINITELY wouldn't do rads/drugs if I had such a tiny amount of DCIS that was removed with such large margins.

IMO, a good diet based on organic veggies, fruit, nuts, seeds, and minimal amounts of organic animal products, plus exercise, good sleep every night, and a low-stress life are better for staying cancer-free than all the rads/drugs in the world if you're eating junk food and live like a couch potato.

Kitchenwitch

You know, it's interesting. I had some polyps removed this past summer from my colon. One was an "in situ." Fun, fun, becuase they weren't sure they got it all and that was a whole Other Thing. But in all the talking, no one ever said, you'll need follow-up drugs, chemo or radiation becuase you had these polyps. In fact, my surgeon said to me, You do NOT have cancer. It's in situ - it's NON-invasive. 

But everyone knows that if left alone, colon polyps will likely turn cancerous. And the pre-cancerous and early-malignant ones will definitely cause trouble. So... isn't it a little strange that the thinking is so different when it comes to these very early and pre-cancerous conditions of the breast? 

Oh, congratulations on your decision and reaching this stage! That must be such a relief. If I can find a doctor to agree with this same course for me, I'd jump at it. Lumpectomy and watchful surveillance sounds like a wise plan.

Jelson

       Here is the van nuys prognostic indicator chart for DCIS? http://www.breastdiseases.com/dcispath.htm, there are other versions on the internet as well - so  a nice visual for you and those who might question your decision not to have radiation for DCIS of that size. With regards to why tamoxifen for someone who has had ER+ DCIS and no drugs for a colon polyp, I would think it is because tamoxifen has a proven track record for preventing ER+ breast cancer, and there is no similar preventative for colon cancer other than monitoring.  I am just providing an explanation for the difference in recommended treatment regimens, am not advocating that everyone ER+ take tamoxifen - since I am well aware of its unpleasant and sometimes dangerous side-effects!!!!  I agree that DCIS is the new in disease - the medical establishment is developing a great track record of finding/curing DCIS while not doing so well detecting and treating  young women with aggressive/invasive BC.

Jelson

baywatcher

Amain-

If I could do a redo, I would do what you are doing. Plus, I would never do a mammogram again. I would consider thermograms if I was concerned about reoccurance but I would never let them radiate me again. In my ideal redo, I would just go about my life, do self breast exams, be healthy as Crunchy says and never have routine tests. I would live a much happier life and if I developed something life threatening, I would deal with it at that time.

Good luck to you.

Janets1

Amain:
Just wondering what grade your DCIS was.......I put myself through torture until I finally decided to have the radiation and eliminate as much possibility of developing invasive cancer as possible. It was a very tough decision but since I had grade 3 comedonecrosis - which seemed the most likely type to recur as invasive -  I opted for radiation. I will always remain paranoid about what the rads may have done to me - but, then again, I would have lived with a different type of concern without it. Can't win! But congratulations on being firm in your resolve.

AlohaGirl

I also had high grade with comedonecrosis -- found on my first mammogram, what a shock! -- and after much deliberation opted for radiation and tamoxifen.  I already had a fairly healthy lifestyle but also am working on losing a few extra pounds and being more careful about what I eat.  The treatment decision is a very individual one.  With my personality, I wouldn't have been comfortable omitting treatment that had been recommended to me by a number of experts (including personal friends), because I know I would have beaten myself up later if the DCIS or invasive cancer returned.  And fortunately, I had very few problems with radiation or tamoxifen (fingers crossed that it stays that way).  I view the decision as very individual, based both on the medical specifics and personality.  I do not intend to those who have made different choices than I did in any way, I just wanted to post my own experience for the consideration of others who may come upon this thread in the future so they can see multiple viewpoints/alternatives.

AlohaGirl

I should add, a friend of mine had Stage 1 about 7 years ago and opted for lumpectomy with no further treatment.  She is very rigorous about her diet and she is doing great!

Janets1

I think this thread is a very important one for those with high grade DCIS (I don't think I would have done rads with a lower grade). We are all faced with this seemingly "optional" decision and it is the single most difficult part of the entire process after the diagnosis of DCIS (other than those women who have DCIS in more than one area, or a very large area and are considering mastectomy). My surgeries were easy, and the radiation side effects have been minimal - much less than I thought they would be. And, since I am ER negative, even tamoxifen isn't an issue. The only tough part of it (besides getting the diagnosis) was deciding on the radiation. My friends and family, as well as 6 doctors, all encouraged me to do it. Only two close friends told me NOT to do it - and neither of them has ever had a mammogram to my knowledge, although they are well into their '50's.

Beesie

Amain, I appreciate your perspective and I suspect that if my diagnosis had been the same as yours, I likely would have taken exactly the same approach that you did. 

Having said that, I think it's important to point out that all DCIS is not alike.  For a small amount of low grade DCIS, it is probably fair to say "an "in situ" diagnosis means just that, it's "in it's place" and probably won't become invasive. "  But many of the women who come to this website with DCIS don't have a small amount of low grade DCIS - they have larger amounts of high grade, aggressive DCIS (often with comedonecrosis).  The likelihood that an aggressive DCIS will become invasive is extremely high, and the timeframe for this could be quite short.  So to make a blanket statement about DCIS, suggesting that it's not serious and doesn't need any treatment beyond surgery, could lead someone with high grade DCIS to not take treatments that truly are necessary (radiation and/or Tamoxifen and/or a mastectomy), and that could very quickly lead to a diagnosis of invasive cancer.  In fact, it's been very well documented through many studies that 40% - 50% of all DCIS recurrences are not found until the DCIS has already progressed to become invasive cancer.

My wish is that eventually, once more is known about DCIS, DCIS will be divided into two different diagnoses, one being a pre-cancer, for those cases which are unlikely to ever become invasive or likely won't become invasive for many years, and another for those cases which are high risk and which must be treated just like any other cancer.  If that ever happens, we will hopefully be able to avoid some of the over-treatment that happens today when women are diagnosed with low risk DCIS (i.e. small amounts of low grade DCIS) while at the same time ensuring that those diagnosed with more serious cases of DCIS don't put themselves at risk by under-treating their cancer.   Until then, the best we can do is try to drive all women diagnosed with DCIS to make their treatment decisions based on their own specific pathology and not simply on the fact that they have been diagnosed with "DCIS". 

By the way, like many of the other women who have passed through here, my diagnosis changed as I went through the testing/diagnostic process.  My stereotactic biopsy showed only ADH; my excisional biopsy showed two areas of high grade DCIS w/ comedonecrosis along with a microinvasion of invasive cancer (meaning that my DCIS had in fact already started to become invasive) and my final surgery (a mastectomy) revealed a much greater area of high grade DCIS - basically the DCIS ran through the ductal system of my entire breast.  I mention this just to point out that breast cancer can be sneaky; what's initially seen on a mammo and found in a needle biopsy is not always all there is to it.  In approx. 15% of cases where DCIS is the initial diagnosis after a needle biopsy, the final diagnosis will be invasive cancer.

Again, all this isn't to suggest that those who have a small amount of low grade DCIS should worry or think that they have to undergo mastectomies or radiation or take Tamoxifen.  It's simply to point out that DCIS is not a single or simple diagnosis - some cases truly are low risk but many cases are not.  And what that means when it comes to treatment of DCIS is that One Size Does Not Fit All.