DCIS is there any way to monitor progression?

Hi Ellie

 I understand your need for tests and/or treatments for DCIS. I too was diagmoised with DCIS in June 2011. I did have the suregry and they removed 9 cm of non-invasive , non-comendo DCIS. Afterwards I was given an MRI which suggested me having a mast, due to positive margins, enhanced lymph node (grade 6). My BS wanted to do a mast. sentinel node biopsy and my nipple would also be removed. I was also asking the same questions you are asking. The surgeon gave me 6 months to decide.

Since that time I have sought a second opinion, I have taken 4 months of Vit C through IV, three mistletoe shots per week (will be for 2-4 years) many supplements, gluten , diary, sugar free diet (to the best of my ability)  exercise etc.

The second opinion surgeon gave me 1 year to make up my mind. He also provided me with a second post operative MRI. Luckily the MRI showed shrinkage of theDCIS, no enhancement of the nymph node. However, the surgeon is still suggesting a mast (nipple sparing and no lymph nodes removed).

I am still not convinced I will have the surgery. For me it has been crucial to have choices even if I decide to have the mast. I believe everyone has to make the decision which best speaks to them. Presently, my gut continues to say wait and thus far my gut has not lead me to the wrong place.

I have been given much direction from a psycologist who taught me that I need to be sure I am doing the right thing for me. He has taught me to navigate the medical system which has brought about miracles. I believe that standing up for myself is a big part of my treatment plan.

I trust you will make the right decision fro you.  For me it is important to stay out of fear and away from those who suggest I live in fear,

Thanks for sharing

Hi Ellie,

I was in the same boat as you a little less than a year ago.  I was diagnosed with DCIS in June. I saw two surgeons, both of whom wanted to rush me into a mx, as the size of the mass was so large (>6cm) that I wasn't a candidate for lumpectomy and rads.  I really dug my heels in, and in hindsight am very glad that I did.  I researched, went to alternative healing conferences, changed my lifestyle and dietary habits. I convinced my bs that I should be on an aromatase inhibitor, Letrozole (like tamoxifen only for post-menopausal women) on a trial basis. I continued on that path, exercising vigorously, taking supplements, even trying some pretty off-the-wall things like the Budwig diet.  She was a physicist colleague of Albert Einstein; her cure is cottage cheese blended to a paste with flaxseed oil (yuck!!!). You can google it to read the supposed benefits for yourself. Anyway, you name it, I tried it.  I gave myself six months, during which time there was not a single day that went by that I wasn't worried that the DCIS had grown or turned into invasive cancer, despite my positive mental attitude and decidedly improved physical condition.  I felt great, and I was convinced that I had controlled my body to rid it of the invader.  However, the MRI six months later showed that nothing had changed. What convinced me to undergo the surgery was that an oncologist with whom I met said that the biopsy only encompassed a very small portion of the mass and the MRI was non-definitive so there was the very real possibility that there was invasive cancer present with the DCIS.  I then realized personally that I was playing Russian Roulette, and since I have a 14 year old daughter to raise, decided not only to have a mx, but to prophyllactically remove the good breast as well.  I never imagined seven months earlier that I would ever come to that conclusion.

So I am in agreement with Beesie, who echoed both my bs and oncologist opinions.  However, that said, I think it is really beneficial for you to take your own path and come to your own conclusions.  You should, though, take into consideration (which I did not, at the time) how large the extent of DCIS is, whether there is necrosis, the nuclear grade, etc.

It's funny.  Most people who knew of my decision to wait before the surgery were really worried for me, that I was being too casual.  After the surgery, when some other people found out why I had BMX, they thought I had been radical.  At the end of the day,  follow your gut because it is the right thing for you at the time.  DCIS is a very illusive diagnosis. As long as your doctors agree, six months is probably ok to wait.

One good book that I unhesitatingly recommend is Anti Cancer, A New Way of Life by David Servan-Schreiber, MD, PhD.  I think it should be required reading for everyone.  Explores environment, body, mind, diet in a non-sensational manner.  I think I read about the mistletoe cure in Suzanne Sommers book (which I am not endorsing) and I purchased a supply online.  I subsequently read of some dangers associated with mistletoe and decided not to take it.  However, when I tried to return it, I was going to lose so much $$ from a re-stocking charge and shipping that I decided not to send it back.  I still have it, and would be happy to send it to you for free if you would like to try it.  Just PM me with your address and it's yours.

 All my positive thoughts are with you.  I feel you, I cannot tell you how much.

And by the way, emotionally the BMX was devastating to me beforehand, but has not been so bad to deal with as I feared.  Astonishingly.  I no longer worry about cancer; I'm just trying to get through the reconstruction period.  

Ellie, honestly I don't believe that 6 months is a magic number, just a convenient parcel for the docs. To put your mind at ease, I am at UCSF, and one of the major advocates of taking it slowly is Dr. Laura Esserman, one of the main bs's there.  She was not my bs, but I spoke with her at a conference, and she basically said there is no hurry whatsoever.  You should google her, there is a very interesting school of thought regarding the immediacy of treatment and the early diagnosis as to whether it is appropriate to jump into treatment so quickly.

I was diagnosed in June, but had already planned a trip to NYC in October, and a trip to Cuba in December, both of which I was determined to make.  I did, I had a blast on each trip, put it out of my mind for those two weeks, and wasn't adversely affected by my decision to postpone.And when I did finally have the surgery, I was relieved to find out that my postponement had not resulted in a change from non-invasive to invasive.

Especially since you are Grade 2, my personal opinion is that you may have more time than your doctors lead you to believe.  And just because I wasn't able to make mine go away (I am probably older than you, with so much more overall exposure to toxins) doesn't mean that you can't. The mind/body connection is huge.

And I do relate to you about being stranded.  UCSF is a teaching hospital, so I would go for weeks at a time with no returned phone calls, which exponentially added to my stress level.  I felt that I was "only" a DCIS patient so there was no need to get back to me with any expediency. I only stuck with them because of the quality of their doctors.

And you know you can always get a second opinion, maybe it would give you piece of mind.

But you are on a very supportive network here, and almost any question you have will be answered quickly by a lot of very caring women who have gone through just about everything.  I've only discovered it recently myself, and it has made a world of difference in my life.

PM me any time if you'd like. Don't know if i've helped you at all, but hope so.

Joanne

Okay I have read this post and can't help myself by responding in an honest opinion.  If you have that large of an area why the hell would you wait!  I am sorry, but that's how I feel.  Sorry.   Here's my story,

Dx in 2005 40 years old with left breast "only" DCIS, high grade 3 with necrosis.  2x lumpectomies to get a clear margin and 37 rads treatments.  6 years ago they gave me the choice whether to go  on Tamox, because it was "ONLY" DCIS.  I did, was on for 6 months had too many side effects and stopped.  Fast forward 6 yeas dx in right breast  in October of 2011, with ONLY DCIS again.  This time had to make the decision on whether to have bmx, I decided to keep them.  2x lumpectomies and what do you know, there was IDC cancer too.  Luckily small amount only 3mm and no lymph nodes.    Guess what they didn't know there was IDC in there until they took out the "ONLY" DCIS.  And I can almost  guarantee that if I WAITED 6 more months it would have been a larger area than 3mm, and probably would have had to have chemo.    Although there is no way to know if the cancer would have happen in my right breast had I stayed on tamoxifen, I don't think it would have.  Who knows?  What I do know now is that I really have no choice but to go on some type of hormonal therapy.  I am only 46 and I don't want this to happen again!  For the love of god just get rid of the DCIS! It's not doing you any good by being in there.   Again I apologize for being so blunt, honest, but that what I feel.   BTW can I tell you how much I hate it when people say it's ONLY DCIS.  Drives me crazy!  Again I apologize for being to blunt, I will blame it on the TAMOX!  Causes mood swings!

I was diagnosed with a large area of DCIS thanks to a MRI finding it and was scheduled for a BMX 10 days later. What was the rush? My mother died of breast cancer and my sister had advanced breast cancer, too. Every six months, my breast surgeon said, cancer in the breast changes and moves around -- goes through a cycle, if you will.



For a decade, I was aggressive with my breast health screening. And as soon as the DCIS reared its ugly head I blew it up into smithereens.



No chemo. No radiation. Doing reconstruction....

Take care,
T

I concur completely with Beesie and Catrina. i too was diagnosed initially with DCIS grade 3 when I had a mammogram at age 42 for no reason other than it was offered free for woman over 40 and I thought why not. 2 weeks later I had a masectomy where they found IDC in the breast tissue and in the Sentinal Node. Another op a few days later to remove more nodes, chemo and now 5 years of Arimidex.

The reality is that until they can completely biopsy all the affected breast tissue, they cant rule out IDC. For me, the instant I knew I had breast cancer, I wanted the stuff out of me to the extent I went and paid for the operation rather than waiting a week or two more for our public system to kick in and tend to it, and Im not rich lol. That too is a decision i do not regret.

I am comfortable in my own mind that I did the right thing and that if I had not acted fast or not had the mammo when i did, by the time I was 50 i would most likely be in serious trouble. 

Good luck with making your decision 

Diagnosis: 12/4/2008, IDC, 1cm, Stage Ib, Grade 2, 1/7 nodes, ER+/PR-, HER2-

I have had mamograms, thermograms and MRI show much different things around the same time. Unfortunately, the surgery is the proof of what's actually there. That's why I chose a partial mast. instead of core needle biopsy my 2nd time around. I would rather remove it all since the first time I had a core needle biopsy it came back as only ADH and then my BS wanted a bigger sample which showed 2.5 mm of int. grade DCIS (which Dr. Lagios later changed to grade 1). I was under the care of an orthomolecular nutritionist and did a major detox and was counseled about what cancer is and how our bodies can heal naturally when given the right environment. I followed an alkaline diet and decided to take my time to research and see what I could do naturally. I left a positive margin, but the MRI 1 month later showed nothing. Mammogram 8 months later was okay as well. Then I had a year of unimaginable stress taking care of my mom who had a mental health challenge. I believe stress is a major cancer promoter. 10 months later my mammogram and MRI were birads 5 which surgery proved to be more DCIS (Dr. Lagios said it was residual, not recurrence) which was not getting picked up on mamograms, thermograms and MRIs. The problem with any diagnosis -- even a low grade DCIS -- is the stress, fear and confusion that come with it. Hearing stories of others cancer progression, while helpful in some respects, can also add to the stress. I had to be and still am very careful with my mental/spitiual state of mind around it. I could go on, but need to get to my yoga class! Peace and blessings, Donna 

Ellie, I would urge you to once again read Beesie's piece above. I personally could not have any peace of mind until i had the BMX (widespread mixed grade DCIS) to get this out of me and find out once and for all whether I had IDC as well.  It was a little too much like playing Russian roulette for me.  (I lucked out - pure DCIS.  Very glad it's over and behind me.)  

I am concerned for you from the comment that whatever is there seems to be continuing to spread.  If it were me, that news would be enough for me to do the surgery pronto, especially from reading posts of women who went fromt 0 to stage 4 in the blink of an eye. If I were getting a knee replaced, I might wait until it was convenient and my sister were available (if my sister and I were on good terms, which we're not).  An elective surgery can be scheduled when convenient.  If I thought I might have a cancer spreading, I would get it done as soon as possible.  It only takes a few cells to get into the lymph nodes and then the bloodstream.  

Donna,

The whole 3-day conference is really fascinating and watching all speakers gives many viewpoints. I updated another thread on this conference with current links.

Hi there ladies!   I am 49 and with 3 kids.. one 26, 17 and 13..   Have been reading these posts a lot.   I was found with atypical lobular hyperplasia to start of from when they did the core needle biopsy. Then was sent to a BS for review of results and scheduled a surgical biopsy to take some larger samples.  The results came back as DCIS., low to intermediate.0.6mm ( 6 cm) and some other verbage that i have no idea what I am reading. BS explained what made sense to me. She told me that i could do a excisional surgery (lumpectomy) 6 weeks of rads and possibly wil have to do hormone therapy Tamoxifen or something to that effect depending on what the oncologist prescribe, the other option would be an MX but she thinks that it is not a huge area and doing a MX would be a huge surgery, but of course up to me.  Had an MRI  to both breasts to see if the right one had something. got call, and everything beningn.   Now to schedule surgery?

Well, my husband is the one that really wants a second opinion and i guess he is right. I have researched so much for cases of DCIS and the options that he thinks I am doing the "second opinion" lol!    Dumb question: Which type of doctor should I visit for se cond opinion?  Will I need to tell my BS that i am getting a second opinion? what do i take? the pathology reports?  Has any of you had th experience of getting a second opinion and what was your final take?  it is just so confusing and overwhelming as radiation and 5 years of a drug commitment makes you wonder ...  

jackier,  i don't think there are any downsides to getting a 2nd opinion.   any doctor involved in your treatment should be used to it, and should not take it as an insult (like you dont trust them) .  I got the name for my 2nd opinion from my radiologist.  you do not need to tell your BS you are getting a 2nd opinion, but it should not be a problem to tell him/her either.

Hi aussie12 and all,

I was just thinking the same thing.... there needs to be a better system for diagnosing, understanding, caring for and managing all levels of DCIS -- and it needs to be much more individualized as no two DCIS diagnosises are the same. From a lot of women's experiences, it seems to be somewhat of a guessing game unless we do mastectomies. Often what is inside the breast is far different from what the mammograms, MRIs, ultrasounds and biopsies show. Often we hear of women whose BC did not show on any images. With DCIS, I have found there is such a discrepency from Dr. to Dr. and pathologist to pathologist. I have had 4 opinions and they all tell me something different -- from size of DCIS, grade of DCIS and treatment recommendations are all across the board. The bigger problem I see not being addressed is the emotional toil being placed on all women with a DCIS diagnosis. None of the choices are easy and I think there needs to be support groups set up locally specific to DCIS at each hospital/cancer center -- and women should be able to feel supported even if they choose to take more time and not exactly follow "standard of care" given there LOW grade status.  Despite the fact that many find invasive BC or microinvasions, there are still others who are faced with overtreatment and being shunned or criticicized for their less aggressive/more holistic treatment choices. I called a few cancer centers in San Diego and they only offer support groups for breast cancer in general, not specific to DCIS. I went to one BC support group, but felt like I didn't fit there. I flew from San Diego to San Francisco to see another Dr. and the attitude around the care and management of DCIS was night and day...I have been very impressed with what UCSF offers: great support services with DCIS booklets, videos, peer support, decision services (which included a research assistant who attended my Dr. consultation -- she took notes and recorded my visit -- then followed up with a phone call and connected me by phone with another DCIS patient who has a similar situation), DCIS forums, nutrition education, clinical trials, etc.  

Does anyone know of any DCIS specific support groups (besides these boards) -- either online or in person? 

There is so much good here with everyone sharing their experiences on these boards, but those of us who are taking a slower approach with low grade DCIS seem to be far outnumbered by those who have stories of DCIS turned invasive. I find I have a great deal in common with those on the "alternative" threads, but most have invasive BC, not low grade DCIS.

I believe a better understanding of DCIS is on the horizon!  Donna

if you want to hear my long-winded story, check out "Donna's Journey" here: www.dcis411.com