DCIS - No surgery?

I know how difficult it is to hear the course of action doctors recommend for DCIS, do research and more research, read statistics and risk factors, etc.....and then, after much prayer, have to make a decision based on "no guarantees!" My first dx was in 2008......mammogram showed micro-calc in several places in both breasts; core needle biopsy in one area showed DCIS (they didn't biopsy the others at the time, wanted to check one). Next step, lumpectomy on one side and biopsy on the other.....right side pathology showed a larger area, no clear margin; left side, no cancer, but atypical hyperplasia (higher risk to develop bc). I had a second lumpectomy to get a clear margin followed by rad and Tamoxifen (had to stop taking after two months....extreme side effects....didn't want to take it anyway).



In 2011 (3 yrs later), i was diagnosed with DCIS in the other breast. I had done enough research, and my decision was a bilateral mastectomy with DIEP flap reconstruction. I didn't want radiation again. I was 60, healthy, and didn't want to face another diagnosis in 5 yrs. Two weeks after my mast w/recon, my best friend was diagnosed with bc....IDC, Stage 1. Because of what I'd gone through, she had already made a decision to have a bilateral w/recon (implants). Her pathology.......6 nodes involved AND an invasive cancer in the other breast (larger than the one she had found through self-exam - neither a mammogram or ultrasound found either).....she went from Stage I to Stage IIIa.



Bottom line......none of us know, and we all have to make the decision best for us. As my radiologist said "whatever decision you make, just know that you will live with whatever may be ahead". There are risks from surgery, radiation, chemo, etc. Possibilities of secondary cancers long term from radiation.



I feel blessed that I was able to make decisions because I was dx early (though I will never know if the DCIS would have ultimately become invasive or not) and I didn't have to go through radiation again or chemo. Cancer cells do what they want, when they want....if only we knew what was going on in our bodies! In this past year, I've had 5 friends dx with bc.......different stages, different decisions.



Whatever your decision......whatever input you get......it's your choice!

Sorry you have to join us Roxx, but the women on this site have been such a help.  I'm sure you'll find support here. 

Best wishes

I joined this site on Oct 2nd of this year....as I said previously, I was dx on Oct 1 with DCIS. Lumpectomy on Sept 6th this year. So now, the margins are not clear so I need more surgery. This would entail making a bigger margin with radiation post op or a mastectomy because the DCIS area was large. My doc says I have to see the radiation oncologist first to see if radiation would even be useful....if not, mastectomy. I just want this treatment done. I need timelines....recovery period...etc. I am a nurse and I am part time but I work full time hours. I can collect unemployment but that takes forever to collect and is only a  portion of my regular pay. My son goes to university next year and I don't want my illness to hamper his future. My head is spinning.....I will need to take tamoxifen as well but I hear so much about the side effects...Good news is, I am going to BRA day today in Toronto. Seems like it will be a good conference and it will talk about reconstruction, whjich my doctor says I will most likely need.

determined - DCIS is tricky. It is true that no one knows for sure which or when DCIS can turn invasive.  If its low grade, small in size and nice clear margins ( 5 mm in size I believe), some feel it is okay to forgo rads.  I hope the Oncotype test for DCIS proves to be helpful in helping women make a difficult choice.

My BS thought my DCIS was only a small area.  Turned out he said he had never seen so much (over 10 cm) without being invasive.  My point is, without a lumpectomy there is no way to be sure how much DCIS is in a breast.

Beesie has many informative posts on this subject.

determined,

With grade 1 DCIS, will it ever become invasive cancer? No one can say.  There are studies that suggest that possibly only 25% - 40% will ever become invasive over one's lifetime, and in some cases it might take 20 to 30 years for this to happen.  So if you have a small amount of grade 1 DCIS that isn't likely to become invasive, or might not become invasive for 25 years, why have surgery now?  It's a good and reasonable question.  

Certainly these days there are a small number of doctors within the medical community who are looking at non-surgical approaches to DCIS, and particularly, grade 1 DCIS.  The problem is that while some in medical science are starting to move in that direction, medical knowledge has not yet progressed to the point where any doctor can tell you whether your grade 1 DCIS is low risk or higher risk.  Although many cases and maybe even most cases of grade 1 DCIS are low risk, there are situations where grade 1 DCIS has been found to be hiding invasive cancer.  And there are situations where grade 1 DCIS has evolved to become invasive cancer within a much shorter time period. 

Personally, because of this uncertainty, and because a lumpectomy is a such an easy, simple surgery, I would always opt to have the DCIS removed, whatever the grade and whatever the size.  With a small amount of grade 1 DCIS, I doubt that I'd have any treatment beyond the surgery but for peace of mind - to know that it really is just a small area of grade 1 DCIS - I'd have the surgery.

If you decide not have surgery, there is a risk. But you might be okay with that. If you decide to take this risk, then usually what's being recommended is a very rigorous monitoring program, so that if the area of DCIS in your breast starts to change, at that point you can have surgery.  One thing to know, however, is that no screening method is perfect, and none can tell you when an area of DCIS is starting to become invasive - the initial change is simply too small to be detected by any films. Similarly, no screening method can tell you whether a small area of invasion might already be present in with your DCIS.  

One approach that's in clinical trial stage right now is to give Tamoxifen or Femara to women with DCIS, prior to surgery. The objective is to see if these drugs reduce the amount of DCIS present, or possibly eliminate it completely.  I believe that some doctors who are not participating in the trial may be prescribing Tamoxifen in lieu of surgery. This is something you may want to consider if you don't want surgery.

At this point, based on current medical knowledge, most experts still recommend surgery for DCIS, whatever the grade.  In 5 years, if we have a better ability to know which cases of DCIS are low risk vs. high risk, and/or if we know that drugs can be effective at stalling or eliminating small areas of DCIS, standard practice might change.  But right now, if you choose to take this course, you will be on the leading edge, moving ahead before all the data suggests that this is a feasible approach. With that, there is risk. 

Here is the information about the clinical trial that I mentioned:  
Tamoxifen or Letrozole in Treating Women With Ductal Carcinoma in Situ 

Here is a report on a small trial in which women opted for monitoring rather than, or prior to, surgery: Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ

Questions for you:  What type of biopsy did you have and what did the biopsy show in terms of hormone (ER/PR) status?  What is the assessment of the size of your area of DCIS? The risk that some invasive cancer might already be present is very low if you have only a very small area of grade 1 DCIS but is greater if you have a larger area.  What diagnostics have you had done?  Mammogram?  MRI?  

SSS1, don't worry about the first biopsy pissing off the DCIS cells; it's not an issue:

"Can a biopsy turn DCIS into an invasive cancer?  Here too, the answer is no. Normal cells turn into DCIS, which then turn into invasive cancer by a process known as tumorigenesis. This is a complex, molecular change that occurs over many years and is not affected by a biopsy."  http://community.breastcancer.org/blog/what-my-patients-are-asking-can-getting-a-biopsy-spread-the-cancer/

If it was an issue, I would have had tons of invasive cancer.  I had a needle biopsy first, then a surgical biopsy on two different areas of high grade DCIS, one that already had a microinvasion of IDC.  There were no clear margins after that surgery, so I was left with all these ducts cut open with DCIS right at the edge. If that's not an opportunity to spread the DCIS into open breast tissue, nothing is.  Yet when I had my MX 2 1/2 months later, all that was found was more DCIS, no more microvasions or invasive cancer of any type. 

Oktogo, as far as I understand it, the issues related to seeding are different for invasive cancer vs. DCIS.  

From everything I've read, I believe that seeding probably happens. Not a lot, but sometimes. With invasive cancer, this can be a concern because you are moving invasive cells to another area of the breast.  This is why removing the needle tract and/or having radiation is advisable. With DCIS, the issue is different.  If you move DCIS cells outside of the milk duct into the open tissue, they remain DCIS cells.  This means that they won't develop any further or travel through the breast, to the nodes, into the bloodstream, etc.. That was my point to SSS1. Moving DCIS cells outside of the duct isn't going to start the development of an invasive cancer.

I find it interesting that the concern about seeding is almost always discussed in the context of needle biopsies.  No one seems to worry about excisional/surgical biopsies and in fact some women opt for surgical biopsies in order to avoid a needle biopsy and the risk of seeding.  But with surgery, the breast is cut open, the ducts are sliced in half, breast tissue is moved around, and there are lot of surgical instruments touching different parts of the tissue.  It would seem to me that the risk of seeding or the risk of inadvertently displacing some cancer cells is much higher with surgery than with a needle biopsy.  

I'm not saying that to worry anyone, but in fact to ease minds.  There are so many women diagnosed with BC who have more than one surgery - whether it's for DCIS or invasive cancer - and yet their cancer doesn't progress and their diagnosis doesn't change. If seeding or aggravating the cancer is a real issue, why wouldn't we see the implications of this whenever someone requires a second surgery to clean up the margins?  Think of the number of women who have excisional biopsies that uncover cancer and who then have to go back for a lumpectomy or mastectomy to remove remaining cancer.  Or all the women who have lumpectomies without clear margins (about 20% of all breast cancer surgeries, I believe).  Those are all situations where cancer cells have been left in a "traumatized" breast, and yet it's very rare to find cases where the second surgery uncovers any advancement of the cancer, or any cancer cells that are more aggressive. As I mentioned in my earlier post, my excisional biopsy uncovered lots of high grade DCIS with comedonecrosis, and a microinvasion of IDC. Clearly my DCIS was right at the point of starting to convert to become invasive cancer. I had two large areas of DCIS, and no clear margins. If that wasn't an incubator to develop a more aggressive cancer, I don't know what would be.  I didn't have my MX for 2 1/2 months. There was a lot more DCIS found, some grade 3 and some grade 2, but no more microinvasions.  And I had a clear SNB at the time of my MX. My situation is not unique. I can think of so many women who've come through this board over the years who've had similar experiences. Their second surgery finds remnants of cancer with the same characteristics as the original findings, and nothing more.  

I hope you get the lumpectomy. I did not get the cancer diagnosis until they took the lump out. The biopsy and MRI were clear...so the lumpectomy was the only thing that gave me the proper diagnosis. I got tired of all the lumpectomies so since I had aggressive DCIS I had a double mastectomy rebuild...and my new breasts are amazing!

Did you take tamoxifen?

Thanks,

Julie

(AI) Treatment - aromatase inhibitor - for DCIS

I would like to know if anyone has had expereince with "preoperative endocrine therapy while being treated with an aromatase inhibitor (AI) (letrozole, 2.5 mg PO QD)."  See article: "Reframing treatment for ductal carcinoma in situ: Could less be more?" (Hwang & Nelson, 2012)

I am particularly interested in - "some women with DCIS may be better lumpectomy candidates after AI treatment."

"Women most likely to benefit from participation in this study are those who, because of the extent of the disease, are borderline candidates for lumpectomy. If, as in neoadjuvant studies for invasive cancer, overall tumor size is reduced, some women with DCIS may be better lumpectomy candidates after AI treatment. Although the trial is designed to include surgical excision at six months, the study will lay the groundwork for future trials of DCIS management that reserve surgical excision for only those patients at highest risk for invasive progression."

hi! how are you?

I am similar . Diagnosed with DCIS and questioning it.

I am in uk. Consultant slow to give me my Histology Report.

I am Biomedical Scientist, so interested.

At first he wanted me to have surgery, but now I am only on Tamoxifen. 

Oktogo9 hasn't posted since December and hasn't signed on to BC.org since March so I don't know if we will hear from her.... but I certainly would be interested too to hear what she decided to do.

Oktogo, thank you for checking in!  I'm glad to hear that you are doing well.  Good luck with your appointment in September.  I understand why you don't want to spend a lot of time here - there can be a lot of negativity towards those who choose a different path - but I hope that you continue to come by occasionally to update us on your continued good health!