just wondering....

When you say "refused treatment" are you referring to refusing surgery? Refusing radiation? Or refusing medication?

I would never have refused surgery but I was thinking of refusing rads. After a fair amount of reading and seeing that rads drops recurrence, I decided to stop fighting it. Now I'm waiting and hoping for clear margins (and a benign biopsy) so I can just START rads and get it over with.

It's funny, but that question has often crossed my mind ---- what if I just leave it alone????   I know it could become invasive, which is a pro for the surgery .... but....I have also read about how many people are jumping into operations with DCIS --- and perhaps many years ago....women had it (didn't know it) - and were ok!!!   Since I'm still on the 'before' operation side of my mx, I am  constantly debating things in my head....

I have the same questions and concerns.  I was diagnosed in December '09 and am still not quite sure what to do.  Part of the problem is that I've spoken to so many doctors (3 breast surgeons, 1 med. onc., 1 rad. onc. and a plastic surgeon) and they all have given me different opinions on how to treat.  I've been told by some to just monitor and maybe take tamoxifen.  Some have told me I should do rads and others have said don't do rads. (Interestingly, the radiation onc. said not to do rads).  My radiologist, who does my yearly mammos. has told me if it were her she would have a mastectomy.  Right now I am awaiting further pathology report from Sloan here in NY on my tissue specimen, which is being stained to see whether I actually have DCIS or PLCIS, as there had been a differential diagnosis given between the two.  All I know for sure right now is that I am so emotionally tired from all of this. 

Mom3band1g thanks for posting this question.  I can't tell you how comforting it is to know that others are having similar agonizing thoughts when trying to come to a decision about treatment. I'm really not going wonky!

I can also totally relate to your experience Bonnie1Jean. So many doctors I thought my head would explode!

I think what you shared dsj is pretty much my take away message from my whirlwind of doctor meetings. Three weeks ago I thought all breast cancer was the same. Now after my baptism by fire, I know differently. Just to add more confusion to the mix... it looks like nuclear grade has also been found to be important in determining recurrence as well as whether the DCIS was found with mammography or palpation http://www.jnci.oxfordjournals.org/cgi/content/abstract/95/22/1692.  Age at diagnosis and density of breast tissue seem to be factors as well. 

Joyko I'm still on the before side of my treatment also (although I've got a lumpectomy scheduled for 3/10) so, like you, I'm constantly debating things in my head as well.  Am I making the right choice? The only answer I seem to hear is to take it a step at a time.  I'm thinking that the lumpectomy will show things more clearly than the core biopsy.  It might mean an extra surgery, but for me I guess I can live with that. Ignorance really is bliss in a way.  I think perhaps I'd feel better about the possibility of doing nothing if the DCIS hadn't been core biopsied. Does that even seem logical?! There's the wonky talk again.  At any rate, I'm new at this stuff, but one thing is certain and that is the feeling of strength I feel after processing with my cyberspace sisters on this board.  

mom3band1g, thats exactly what I felt---if I run and hide will this be over.

Add to that, I had a colleague who had DCIS years ago and I went to talk to her before I met with the first surgeon.  She gave me quite a positive talk and I was feeling pretty good until I went to the surgeon and was told that given the location of my DCIS, I might be better off with a mastectomy.-- my head spun--i thought this was the GoodCancer??????

Hang in there1

This is just so wretched.  I am spending the weekend waiting to have my lumpectomy and now hoping that I "only" have DCIS.  I am so angry--but don't anything to direct my anger at.  I was supposed to spending a week with my friend in Belguim next week, but instead, I am going to have surgery.  I was supposed to be teaching my classes and instead I am stewing in worry and unable to concentrate.  I was supposed to be living a normal life and now I am reduced to doing nothing except ricocheting between fear and anger.  It's almost impossible for me to believe that less than 2 months ago I had no idea that I "had" cancer.  And I could have never imagined 2 months ago that I would be considered "lucky" because I "only" have DCIS.  Actually, 2 months ago I didn't even know what DCIS is and now it seems to be the only thing in my life and my husband's.  Sorry; I didn't mean this to be so emotional.  But I'm going to hit submit anyway.

 Edited to add, of course I've read enough on these boards to know that I AM lucky just to have DCIS; I know that there is much worse.  But that's part of what makes this so hard.  I feel really lucky and really unlucky all at the same time. 

In my case, as soon as I heard the word "cancer", my immediate reaction was . . . I want a mastectomy and I want it TODAY!!  However, I really think my reaction was more based on the biopsy pathology report rather than the word cancer. My report said DCIS, microinvasion cannot be ruled out, ER/PR negative, multi focal, multi quadrant, comedo, grade 3 and other such terms. If my report had been DCIS, grade 1, ER/PR + I think (think being the operative word) I may have been less reactive and more time to digest and think things through. But 4 doctors told me my cancer was very aggressive and I had to have surgery ASAP. I don't regret it at all.

Suekb -

I was diagnosed in mid summer and didn't have surgery until the end of Jan.  I had two 1cm-ish areas of DCIS, one was grade 3 and one was grade 2-3.  I consulted with more doctors than you can possibly imagine. 

For most of that time, I woke up every morning wondering "Was yesterday the day I pushed it too far, waited too long?  Is it invasive now?"  I obsessively felt myself up.  Etc etc etc.

All the doctors I saw, with one very notable exception, told me that waiting was not a problem in terms of the cancer's development/spread, but they were concerned with my mental health falling apart from the stress.

In November, when I thought I was going to have a mast and DIEP, 3 of the surgical teams under consideration wouldn't have been able to schedule me until January anyway.

I think you need to ask a Dr. if they think waiting will matter.  My pathology is surely different than yours, perhaps waiting is even less of a concern for you.  Or maybe waiting really isn't something you should do.  I hesitate to encourage you to follow in my drag-ass footsteps, but I do encourage you to talk to your Dr. about whether waiting is OK, and asking yourself whether waiting will be too emotionally difficult.

My gut feelings: 

I don't like the BSs unwillingness to take you as a patient.  I've heard of that happening in hospitals where there is more than one BS in the same practice, but I've never heard of it happening between different institutions.

You don't seem to be all that happy with your current surgeon.  Is there anyone you can see for a third opinion?  A fourth?  However many it takes for your heart to be comfortable that this is the right person and the right surgery and the right time - the right choice for you?  (Or as comfortable as it's going to be, having to do this horrible thing to your body.  I was never happy with the idea of surgery but I knew it was something I had to do anyway.)

If you stay with your current surgeon, I say wait until summer IF the Dr. thinks it's medically OK and you think you can live with the stress.  It will be stressful knowing the DCIS is still in there.....  Make another appointment to meet with your current Dr and discuss these issues.  And see if there are any other BSs to check out.  Maybe you haven't met the right surgeon yet. 

Do some women skip treatment?  Yes, in the time I've been on this board, there have been a few women who've come through here who have skipped treatment.  But, without exception, they have been diagnosed with very tiny amounts of grade 1 DCIS.  And that's the important thing to remember.  All DCIS is not created equal.  An appropriate (or feasible) treatment for one diagnosis of DCIS may not be an appropriate (or feasible) treatment for another diagnosis of DCIS.

Personally I think I would choose to remove even a small amount of low grade DCIS, although I probably would have no treatment beyond that.  For those with that diagnosis, the risk of leaving the DCIS in place might be quite low, provided that they undergo careful monitoring.  While even a small amount of low grade DCIS might spread (as DCIS) or might eventually become invasive (studies have shown that DCIS that is not removed can become invasive within a few years or after as much as 25 - 30 years), with careful monitoring the chances are hopefully good that any changes will be caught before the DCIS evolves to become invasive.

But for those who have a more aggressive diagnosis - anything more than a tiny amount of low grade DCIS - the risks are higher.  And for those who have either a large amount of DCIS (generally considered to be 4cm or more) or high grade DCIS (either Grade 3 or any DCIS with comedonecrosis), the risks are highest.  Despite all the doctors out there these days talking about the "overtreatment of DCIS", I doubt that any doctor would tell his/her patient that it's okay to not remove larger amounts or high grade DCIS.

To make the point, we have to consider that even when DCIS is removed and treatment, if there is a recurrence, in approx. 50% of cases the recurrence is not found until the DCIS has already evolved to become invasive.  To me that highlights the risk associated with DCIS.  It is pre-invasive cancer but it can become invasive and if left untreated, there is no way to guarantee that you will catch it before it becomes invasive.  The number of us diagnosed with DCIS with a microinvasion is further proof of this.  My DCIS was not caught until it had already started to become invasive.  I had over 7cm of DCIS (a hodgepodge pathology but mostly high grade with comedonecrosis) and 1mm of invasive cancer.  Just that tiny amount of invasive cancer changed by diagnosis from Stage 0 to Stage I. This happens to approx. 15% - 20% of women initially diagnosed with DCIS - we are found to have invasive cancer as well. 

As for whether having surgery will disturb the DCIS cancer cells and increase the likelihood that the DCIS will evolve to become invasive, that's not a concern.  DCIS cancer cells, if they are moved out of the duct, won't become invasive and start to spread - DCIS cancer cells require a specific biological change to become invasive.  Think about how many of us have excisional (surgical) biopsies or lumpectomies without clear margins and who then have to go back for further surgery, either a re-excision or a mastectomy.  In those situations, the ducts are cut and the DCIS cancer cells can easily flow into the breast tissue. And yet following an initial excisional biopsy or lumpectomy, it is extremely rare to find a new microinvasion in the pathology after a 2nd surgery.  I had a very wide excisional biopsy for two areas of high grade DCIS; the results showed no clear margins and a microinvasion was found in the middle of the removed DCIS.  I didn't have my mastectomy for another 2 1/2 months yet the final pathology showed no more microinvasions and no nodal involvement, just a lot more DCIS.

The important message here is that with DCIS, the treatment plan needs to be based on the diagnosis.  With the wide range of DCIS diagnoses, appropriate treatment can range from doing nothing to requiring a mastectomy & SNB. 

mom3band1g , you always pose such good questions! 

So, my breast surgeon told me that every part of the treatment path was my choice. She said I would design my path with the options I had in front of me, but that the docs would help guide with their recommendations. Sure, I had some raised eyebrows when I started doubting radiation, and the collective group of docs (my oncologist, radiologist, breast surgeon) as a team met up about my case and strongly advised me to follow radiation treatment. They have been advised about my decision to not take Tamoxifen, and I am sure I'll have to sign every waiver in the world if I should go that route. 

My cancer is low grade, slow growing type, however. If I had high grade cancer, I would probably just do the entire course of treatment, including mastectomy.  Invasive cancer in other parts of my body scares the bejeesus out of me, but I cannot say that this experience has been a walk in the park, either. DCIS has literally stolen 2 months of my life so far, and will continue to do so until I have finished my treatment. I am sure me, a chronic worrier, will carry remnants of this forever. I have been terrified for my kids' sake, for me and for my husband. I was ready to write out my last will and testament when I found out about this diagnosis. (shame on me, I have no will so far... another to do on my long list of things to do)

As for Barry's post, I am looking for an integrated medicine approach. This has been my biggest disappointment thus far in the whole experience. As a medical community, docs are so specialized that they cannot seem to see beyond their realm of expertise. For once, I would like a doctor to look at me holistically and tell me that I am low in XX, or high in XX, and give me lifestyle changes to accomodate the problem. I am tryng to find someone with this training in Dallas, TX, but I prefer an M.D., not a D.O. or chiropractor. I want someone with the full spectrum medical background but who looks at my entire system to diagnose what could possible be going on with me. I know there's something that has thrown my hormones out of whack. Or possibly calcium. I was being monitored about 3 years ago for hyperparathyroidism, a condition that throws your internal calcium levels off. My internist finally decided that I was still in the normal range after 3 years, so I didn't have this disorder, but was still puzzled over the fact that I had 3 kidney stones in a 8 year period. 

Anyway, our bodily systems are so interrelated, and I wonder what is going on with our medical system that we cannot be more holistic in diagnoses.

 My 2 cents. But, yes, have dreamed about turning down all treatments and running away to Aruba to eat vegetables and fruits for the rest of my life.

Peace to you all,

MaryANn

Please don't base your cancer treatments on eating raw fruits and vegetables!  I know you are just kidding, but I had a friend who did that as her "alternative" cancer treatment, and she is dead now.

My personal view is--get rid of the cancer, then add the alternative treatments to your heart's content.

Beesie - your scope of DCIS knowledge is amazing and so helpful.  Thanks for your post which included the explanation about after exicision and the possibility of DCIS infiltrating.  At least I can cross that worry off my list. 

MariannaHB  - I'm in the Dallas area also and am interested in finding an MD with a more integrated, holistic approach that will augment my conventional treatment. Like Barry, one option I've found is a naturopathic doctor.  There is a group in Dallas that has a focus on breast cancer, but I'm not sure what kind of MD training they have. If all else fails, I like your idea of running away to Aruba.  Maybe we can get a group rate?!!! 

I'm glad to hear that one year later after choosing a less conventional route of treatment you are doing well Barry. I think you are a pioneer in the land of DCIS. Not that long ago the standard treatment for any breast cancer was mastecomy.  Because of some very courageous women who took part in a research study doctors eventually determined that the less radical treatment of lumpectomy and radiation gave women outcomes as good as mastectomy. Maybe those of us with DCIS are in a position similar to those brave women in the study.  It seems to me that by considering our options along with our DCIS pathology and then making treatment choices we are really charting unknown territory. I know I'm "lucky" to have the type of cancer that has such great outcomes compared to others with more aggressive breast cancers. I also know I don't feel so lucky when I find that the treatment options being offered are the same as those for more aggressive breast cancer. Can I make the choice to divert from what medical professionals deem best? Am I doing all I can or not enough? Can I live with the unknowns, the odds, the ??? I pray for peace and healing for us all. 

I have a friend who was diagnosed with DCIS in 2004. She had a lumpectomy, but no rads or meds. It came back a year later in the same breast. Again, she had the lumpectomy, with no rads or meds, but she completely changed her lifestyle. She became a vegan, eats only organic, does acupuncture, massage, etc. Also she won't get mammograms, but does thermograms instead. (I've read that thermograms are not a replacement for mammogram though.) She has not had another recurrance. I couldn't do what she did. I guess the radiation is giving me peace of mind.