Do not treat your DCIS lightly!

hindsfeet,

I'm going to echo what many will most likely say. Do not beat yourself up over this! We can never undo the past. I know you gave it your all to not over treat and to look at some alternatives. I know you had some Herceptin, but experienced cardiac problems. You did what you thought best set the time and made decisions that you thought would work for you. Isn't that what we all do, with no guarantees, regardless? If your post is meant to be a cautionary tale, it will help some, no,doubt. Be good to yourself and take good care.

Caryn

Because the DCIS audience reading this will have a whole variety of different DCIS diagnoses, while I agree with Hindsfeet's message about grade 3 DCIS, I would put it a bit differently:

TREAT YOUR DCIS AS APPROPRIATE FOR YOUR DIAGNOSIS

Some DCIS truly is low risk and doesn't need all the big guns. But other cases of DCIS potentially present a greater risk than some small, non-aggressive invasive cancers. 

A 3mm single focus of grade 1 DCIS is a world apart from a 3cm grade 3 DCIS with comedonecrosis.  

And when you get into multi-focal DCIS or when there are close margins with a grade 3 DCIS, that's when the risk of recurrence starts to skyrocket - and keep in mind that 50% of DCIS recurrences are not found until the cancer has evolved to become invasive.

A tiny low grade DCIS is probably a lot closer to ADH than it is to
invasive cancer or even a more serious DCIS diagnosis. Personally I'm
not a proponent of leaving any DCIS in the breast, but there are many
cases that are low risk enough that surgery alone is adequate.  

But then there are the cases of DCIS that are aggressive and where you really do need the big guns. 

So my message is:

• EVERY DIAGNOSIS OF DCIS IS DIFFERENT.

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• UNDERSTAND THE SPECIFICS OF YOUR DCIS DIAGNOSIS. 

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• WHEN IT COMES TO TREATMENT OF DCIS, ONE SIZE DOES NOT FIT ALL.

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• DON'T THINK YOU UNDERSTAND DCIS BASED ON GENERAL ARTICLES YOU READ - THOSE ARTICLES ARE NOT TALKING ABOUT YOUR DCIS.

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• TREAT YOUR DCIS AS APPROPRIATE FOR THE SPECIFICS OF YOUR DIAGNOSIS,
  BASED ON THE RECOMMENDATIONS OF YOUR DOCTORS, INCLUDING 2ND OPINIONS IF
  THERE IS UNCERTAINTY.

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Edited to add:  Hindsfeet, in reading your post, I noticed that you reference "seeding" a couple of times when you are talking about your HER2+ invasive recurrence.  From my understanding of how cancer progresses and spreads, the likelihood that the spread of your cancer beyond the breast was caused by seeding, or by any delay in having surgery, is practically nil.  You had a very aggressive, relatively large tumor developing and growing in your breast for a period of time that could have been as long as 2 to 3 years.  Those first cells that started your invasive cancer sourced from the time of the previous DCIS recurrence (or even the original DCIS diagnosis a year earlier than that); there is no way to know precisely when those first invasive cells broke through the duct, converting the cells from DCIS to Invasive cancer. It could have been any time after that first diagnosis. 

The fact that there was no evidence on scans that there was any cancer beyond the breast when you were first diagnosed with the invasive recurrence doesn't mean that it wasn't there - in fact, it almost certainly was already there, just too small to be detected.  Your invasive cancer likely sat in your breast, too small to be detected, for a year or 2 years or 3 years, giving it plenty of time to spread.  In the scheme of that time frame, a bit of a delay before surgery isn't much, if any, of a factor.  And even if the biopsy did move a few of those invasive cells, it would be pretty strange for those few cells to quickly travel out of the breast and start to spread through-out your body in the short time frame between the biopsy and your surgery.  Much more likely that some of the cells from the much larger mass of the primary tumor moved into your lymphatic system or bloodstream at some point during the years that the invasive cancer was growing in your breast.

Most women diagnosed with breast cancer, either invasive or DCIS, have a needle biopsy at some point.  Many women have delays before surgery.  The risk that either of these events will lead to the development of mets is pretty much zero.  I wouldn't want anyone to be concerned.

I'm so sorry that you are going through this.  Even if you had treated your DCIS more aggressively,  there would have been some probability of recurrence.  We get such mixed messages with a DCIS diagnosis - it's overtreated, it's not even cancer - so you have to trust that you were making the best decision at the time.  Thank you for sharing your story and reminding us to stay vigilant.  

Hindsfeet, I'm so sorry! I'm a relatively newly diagnosed mucinous type IDC.  I read that board a zillion times when I was diagnosed and remember reading your discussions. Are your mets from your mucinous tumor or DCIS? 

Thank you Bessie! 

Hindsfeet, we are sad to hear of your announcement and can but wish you all the best. Our hearts are with you. You'll have lots of people "in your pockets".

The Mods

Hindsfeet, I am also sorry to hear about your recurrence and am sending you good thoughts and hope that you find the best care and treatment available as you seek a second opinion.  I'm a little confused about your story if you don't mind clarifying.  When they did the mastectomy, did they do a sentinal node biopsy or do anything to test the lymph nodes? Sorry for my confusion.

Nancy, I'm right there with you in the "scared camp."  I also had extensive estrogen-negative DCIS.  My margins were okay (closest approach was 5mm to the skin), but I worry about whether a mastectomy plus no other treatment is sufficient.  My grandmother had invasive breast cancer and developed a new primary after a mastectomy.  She was lucky though and survived again.

I agree with Beesie's comment that each person needs to treat her DCIS individually, which means that those of us with the aggressive, multi-focal kind have to take every precaution.  The question, though, is what precautions are enough.  We are only going on the best information we have available and the knowledge is constantly evolving so it is hard to know what to do.  I try to eat a healthy diet (lots of cruciferous), exercise, take low-dose aspirin. Who knows if it helps? I also worry about sufficient surveillance. 

Like you, my DCIS did not show up on ultrasound or mammogram although it was picked up on an MRI. Initially, my doctor was doing six-month clinical breast exams.  After consulting with Dr. Lagios (he is a very caring and wonderful doctor), my team now has me on alternating cbe's and MRI's plus cbe's.  Dr. Lagios noted that my initial DCIS had no calcium receptors so a recurrence would be much less likely to be found on a mammogram so hopefully an MRI would do better. I am grateful to him (and others) for this kind of close, critical thinking about the particulars of my individual DCIS, but I'm still scared.  

Hindsfeet, I am so sorry you are going through this, I pray you don't beat yourself up over your decisions. We do the best we can at the time when we are going through a tough situation like this. (Hugs)

Bessie, you are awesome, I knew a lot of questions to ask my RO today because of you and others. I had a very very small, low grade DCIS that my MO said I needed RT but my BS said he did not think I needed RT. I was so anxious over the disagreement until I met with my RO today and she was sort of on the fence but was leaning towards no RT but closely following and concurred with MO and BS about tamoxifen. So I am leaning towards no RT as I really don't want to over treat, 

I feel I am on the other end of the spectrum that everyone is talking about in this thread. Not all DCIS IS THE SAME, I can only make the best decision for MY stage and grade of DCIS. It is a scary thought though, to know if the decision you are making is the right one, nothing is a guarantee so I will make my decision and not look back and if I have to deal with this again I will make those decisions as and if that time arise. Just wanted to add my 2cents

@Dogsneverlie, I can relate on on the smaller breast, deformed issue I have had two excisional biospies and a lumpectomy, two of the procedures in my left breast. I had no ideal that my breast would look like this after my lumpectomy, my BS surgeon took out a lot of breast tissue for a large complex selerosing lesion that my DCIS was hiding in and the lesion was deep in my left breast.

As I heal it looks as if my breast is getting smaller and smaller and I have a pretty big dent as well, I too have thought about reconstruction, don't think I will do it but I have thought about it. 

You should not feel guilty about wanting reconstruction, lumpectomies can cause our breast to become deformed, depending on how much tissue is taken or how you breast heal etc etc. so if it is something that you feel you need then you should do it for yourself, GUILT FREE!!!

Thank you very much - I know I need to come to grips of some sort - I am always amazed with how many different emotions one can go through and wonder where the guilt comes from.

I think reconstruction is the very least a woman should be able to want/have after going through all this scary s***.  My lumpectomy breast, after rads, is smaller than the other, noticable, but not so much so that I would look at fat injections, etc.  If there is much more shrinkage over the next year or two, as can happen, however, I defintely will.
Hindsfeet; I am so sorry for your situation.  Not because I think you can't live a life of quality fror many years (I do), but because it's just the scenario we all fear.  Stay strong; l I know you will. xx

mefromcc:  I was wondering why you refuse radiation?  I hope you will share, just curious.  I was terrified of radiation however I went with the RADS - I was diligent about applying Eucerin like 5-10 times/day - - NO EXAGGERATION.  Anytime I could, I slathered that stuff on!!!!!!  If you have radiation, would that mean you would not need a mastectomy?  My heart goes out to women who have no option but the mastectomy.  Would you mind sharing why?  Thank you!

Donna

I didn't have radiation either, but I was stage 0 grade1, and my DCIS was very tiny. My MO, RO and BS finally agreed that I could skip RADS. My MO and RO said that if it had been a grade higher or even bigger they would have pressed me on having the RADS.

Mefromcc, I too was wondering why you skipped RADS with grades 2&3. Thank you for sharing why.