How many out there are being treated for DCIS?

Hi again Maryleigh,

More than happy to answer most of your questions but am inclined to think that some need to be answered by the experts as everyone's situation is different.  Yes, I did have clear margins after the second lumpectomy and this is probably why radiotherapy and Tamoxifen was my best course of treatment.  Mastectomy was never raised with me but I have told my oncologist that if I was to ever have a reoccurrence I would want to have one.  My DCIS was found via normal screening.  I was being screened yearly anyway as I had experienced a breast infection some 6 years ago and it was thought best to keep a more regular eye on things.  Turned out that the DCIS was in the same breast and region as the infection had been.  I have asked the question about whether the two are related but just get told maybe, maybe not.  I got a "call back" after my mammogram in October 2012 and it went from there ie. core biopsy, first lumpectomy surgery, further surgery followed by radiotherapy four months on.  I was prescribed the Tamoxifen right from the very beginning.  I cannot give you a definitive reason why as my copy of my initial pathology report has gone missing.  Now that everything has settled down and I have gotten through my first "mammoversary" unscathed my surgeon asked me if I would like to pursue reconstruction/reduction surgery.  I have large breasts with a reasonable amount taken out in the end.  I estimate that I have one breast now two sizes smaller than the other.  I had been having problems with my neck and right shoulder the past few months which is thought to be as a result of the uneven weight.  So along with a bit of reconstruction work it was considered a good idea to also undertake the reduction.  For me it is not about what it looks like as opposed to the comfort factor.  My surgeon's name is Diana Hastrich and she is located at The Mount in Perth.

I have to admit that I am the sought of person who just goes with the flow and tends not to ask too many questions.  I have complete faith in my GP, surgeon and oncologist and just do what they advise me to do really.  I think this attitude surprises some people but I am comfortable with it and that's the main thing!

Hugs and best wishes to you,

Vicki   

Hi Deanne,

thanks for replying to my blog and sharing your story. I'm so sorry you have had to go through all of this. I think the fact that you would not hesitate to have a second mastectomy (if it showed up in the other breast) says it all. I guess ultimately the aim is to avoid invasive cancer, and the need for further treatment, at all costs. I took part in the Sussan Women's Fun Run in Melbourne last week, and could see just how many women are affected by this. It was certainly sobering.

Thanks again for your feedback,

maryleighxx

Hi Vicki,

I have so many questions following your post to my blog. First of all, thank you for taking the time to talk to me as I agonise over all of this. Did they clear the margins after your second lumpectomy? I understand they won't do radiotherapy unless the margins are clear. Was mastcectomy ever raised? How was the initial DCIS found? What exactly is reconstruction and reduction surgery? Is that offered following multiple lumpecomies? Did you have hormone receptors, and is that why you are on Tamoxifen? What is the name of your breast surgeon? She sounds like the sort of doctor I should be talking to. Whew, sorry to ask you all this, but that was my first reaction when I was told of more DCIS. I asked why we couldn't do more lumpectomies, and radiation. It is in two different places, so would be quite extensive surgery in itself.

Glad to hear all clear at your mammoversary,

best wishes

maryleigh

Hi Sillysam,

thanks for taking the time to answer my call and for sharing your story with me. Can I ask what grade DCIS you had? And did you have any other treatment before mastectomy? As you said the testing systems can give false information, my MRI showed no sign of DCIS at all. The only way to really know what is going on is by looking at it under a microscope. I guess it is my mind-set that is holding me back from making a decision. I am also in south-eastern Melbourne (sort of, I live two hours away in a coastal area), have you found any sort of support group in your area? Thanks for your good wishes, and I also wish you all the best

Maryleigh

Hi Maryleigh,

Yes, I was diagnosed with DCIS but after I had my lumpectomy the pathology report came back that it was not "in situ" and that they needed to go back for more to get the clearance margins.  In the second lumpectomy I also underwent sentinel node biopsy during surgery which was clear, thank god!  I was put on Tamoxifen pre initial surgery and have been on it ever since.  I also underwent 6 weeks of radiotherapy.  Last week I had my first "mammoversary" which included a lengthy and thorough ultrasound check.  All was clear but there are still those dreaded calcifications around.  I've been offered reconstruction and reduction surgery which I have decided to take because I believe that in the process of doing this they will be able to remove at least some of those calcs along with all the other good reasons to go ahead with it.

I have always been told that it is the calcifications that are considered pre-cancerous.  DCIS is just the least invasive of the bc kinds as it is considered to be contained or "in situ".  It would however appear that even though one may be initially diagnosed with it being "in situ" it sometimes ends up that it is found not to be.  Like in my case.

BTW - I have a breast surgeon who fits in the category of not wanting to perform a mastectomy unless she is really sure it needs to be done.  She even told me the other day that she gets horrified when she sees all these young women going out and having their breasts removed because they are considered to be in a high risk category.  In other words, she is very confident in the treatments that are on offer these days.  Does this make our choices any easier?!  Not one bit!

All the best,

Vicki

Oh also - Im from Victoria. Eastern suburbs of Melbourne.

I had DCIS and treated it with a mastectomy. 

It does sound radical - but I 'think' anything that can spread in the milk ducts could be potentially more dangerous if goes untreated. 

Testing systems can be so wrong and miss DCIS completely and DCIS can turn into invasive very quickly or very slowly. 

I dont think it is a pre cancer at all. to me its cancer. i would do it all again in a heartbeat. 

there are some other cancers that show early cell changes and they are pre-cancerous changes and your body can sometimes correct these all by theirselves. our bodies are amazing things. However i do believe when you have DCIS it is treated as invasive as the body cannot get rid of these cells naturally. 

But like i said. this is just what i think. i have no studies etc to show u ... its just how i understand it. 

Good luck! 

Hi Louise,

thanks for listening to my story. I had read that article about calls for a rethink of DCIS, and Dr Esserman's comments, so it is difficult to make an informed decision. Some doctors (mainly US doctors) say it is not cancer, and may never progress further while others, (including two specialists I have seen) say it is a pre-cursor for invasive cancer. It could take 10-20 years to arrive, (low to intermediate grade) no-one knows.  In my case it is the multifocal nature of the DCIS that is concerning, and things have been popping up (four papillomas) over the past 10 years. There is obviously a lot of stuff going on in that breast. I have an appointment for a second opinion in two weeks.

What is IDC? I fully understand your path considering it was high grade DCIS, thank you for sharing your journey. I am so glad you are happy with your choice. I guess it is that sense of peace that I am searching for.

I'll keep you posted,

XXXMaryleigh