DCIS - alternatives to surgery?

mariposa12

Hello, 

I found out I have DCIS 4 months ago.  Because mine is high grade I have been told I need a mastectomy.    I am trying to find an alternative to surgery.  I am changing my diet/lifetstyle completely and reducing stress.  When I found out I had it I was under a huge amount of stress.   

I would like to know if anybody has DCIS high grade and if you have tried alternative methods and/or what your experiences have been with this?

Thank you and white light/healing to you all. 

  

AnnAlive

I had DCIS, high grade, three years ago. At the time, I was seeing an alternative doctor for thyroid treatment and so when I had a routine mammogram (ordered by conventional doctor) that led to a biopsy that found DCIS, I saw not only the breast surgeon the radiologist sent me to, but my alternative doctor. The breast surgeon insisted on either a mastectomy or a lumpectomy + rads. The alternative doctor offered a nonsurgical treatment of 20 IV infusions of high dose vitamin C and B17 (with a cocktail of other ingredients) over a 10-week period, so DH & I thought I should try that, with the idea that if it doesn't work, then I would return to conventional treatment: surgery. Well, this alternative doctor does not believe in mammograms and so, after all the IVs, sent me for a thermogram for confirmation that there was no cancer. Indeed, it didn't show anything, so he pronounced me cured and said I didn't need further treatment that he had planned. I had follow-up thermograms every 3 months, then 6 months, then a year, never showing anything abnormal.

The story changed in spring of 2011 when I began to notice that the breast that had DCIS, had an area of thickened skin, and an occasional rash, and had been swollen a little larger than the other breast for a few months (which I ignorantly attributed to uneven weight gain). When I went to my alternative doctor, he sent me for a thermogram, which was normal, as always. He decided to start me on the same IV treatment as before, and dummy me, I went for two of them that week. Then it struck me, without anyone advising me, that he was treating me without any proper diagnosis! Alarmed that I was in trouble, I made an appointment to see the breast surgeon I had abandoned before, and through the usual diagnostics of mammograms, ultrasound, biopsies, and scans, I was diagnosed with stage IIIc high grade IDC, as you see in my signature below, and ended up with bilateral mastectomy (with lymph node dissection), chemo, rads, and recon. My oncologist said the alternative treatment that I had most likely made the DCIS worse, and didn't take it away. It eventually became invasive. Obviously, the thermograms were worthless for me. I never returned to the alternative doctor, and won't.

I haven't included my DCIS diagnosis in my signature on these forums because I am embarrassed by the whole alternative experience that caused me to have advanced bc because I trusted that doctor. I have posted before to not trust thermograms. I don't go looking to discredit alternative methods, and rarely visit this forum, but saw your post in the active topics and felt moved to tell you my experience, to hopefully save you from it. If I had it to do over again, I would have had surgery right after the DCIS diagnosis which may have spared me from ever getting IDC. One doesn't know -- it can come back anyway, but my experience is that the alternative doctor and thermograms misled me into having no effective treatment, allowing bc to grow for a couple more years.

I know this got long, but I wanted to explain it adequately. Feel free to PM me if you wish.

Beesie

Mariposa, there was someone else who was posting in this forum a couple of months ago who was asking the same question as you.  Nobody came forward to say that they'd tried this approach. 

How were you diagnosed?  A core needle biopsy?  Have you had an MRI to confirm the extensiveness of the DCIS?  I ask this for two reasons.  

First is that if the MRI shows the DCIS to be less extensive than previously believed, you might be able to get away with a lumpectomy rather than a mastectomy.  That might be a more acceptable approach for you.

Second is that if you in fact do have what appears to be a large area of high grade DCIS, then the risk is quite high that there already could be some invasive cancer mixed in with the DCIS. There is absolutely no way that any screening method - mammogram, ultrasound, MRI, thermogram - would be able to tell if there are small amounts of IDC mixed with the DCIS.  A needle biopsy only retrieves a sample of the affected tissue and can easily miss the invasive cancer if it's not extensive. Approx. 20% of women diagnosed with DCIS via a needle biopsy end up after surgery with a diagnosis of invasive cancer, once all the cancerous breast tissue has been removed and analysed under a microscope.  This 20% is an average for all women with DCIS; obviously those with small amounts of low grade DCIS have a lower than average risk while those with large amounts of high grade DCIS have a higher than average risk.  So the risk that you might already have invasive cancer, if you have a large amount of high grade DCIS, might actually be quite a bit higher than 20%. I had over 7cm of high grade DCIS with comedonecrosis; I needed a mastectomy too (and believe me, it was not what I wanted).  A small microinvasion of IDC was found in among all the DCIS. This was evidence that my DCIS was just on the verge of progressing to become full blown invasive cancer.  So I'm lucky that it was discovered and removed when it was. 

I appreciate that you want to avoid the mastectomy and are looking for an alternative approach.  I recall that someone posted the results of a study that was done on a small number of women who had high grade DCIS and who delayed surgery.  I will see if I can find that study and will post it here for you.

Beesie

Here is a study of active surveillance on ER+ DCIS. The participants did not necessarily have high grade DCIS.  Since the "watchful waiting" approach is used so rarely on high grade DCIS, this might be the closest you get to an answer to your questions.  

Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ.   http://www.ncbi.nlm.nih.gov/pubmed/21843942

Abstract
INTRODUCTION:
An option for active surveillance is not currently offered to patients with ductal carcinoma in situ (DCIS); however a small number of women decline standard surgical treatment for noninvasive cancer. The purpose of this study was to assess outcomes in a cohort of 14 well-informed women who elected non-surgical active surveillance with endocrine treatment alone for estrogen receptor-positive DCIS.
METHODS:
Retrospective review of 14 women, 12 of whom were enrolled in an IRB-approved single-arm study of 3 months of neoadjuvant endocrine therapy prior to definitive surgical management. The patients in this report withdrew from the parent study opting instead for active surveillance with endocrine treatment and imaging.
RESULTS:
8 women had surgery at a median follow up of 28.3 months (range 10.1-70 months), 5 had stage I IDC at surgical excision, and 3 had DCIS alone. 6 women remain on surveillance without evidence of invasive disease for a median of 31.8 months (range 11.8-80.8 months).
CONCLUSION:
Long-term active surveillance for DCIS is feasible in a well-informed patient population, but is associated with risk of invasive cancer at surgical excision. 

So in this group of 14 women who delayed surgery for DCIS, 8 so far have had surgery, and of these 8 women, 5 were diagnosed with IDC while 3 had DCIS alone. 

suzieq60

Ann - thankyou for sharing your story, I'm sure it will help others here.

Natkat

Dear Mariposa,

There are MANY alternatives to surgery or combinations of less-extreme surgery with alternatives.  Personally, I think NO woman should ever need breast amputation in 21st century.  We have too much technology to do this.   please research!

Vitamin C and B-17 infusions are incomplete as a cancer treatment. 

The most cutting-edge treatments use technological diagnostic tools like ultrasound, thermogram, MRI, mammo, blood tests, lab work, etc. coupled with targeted herbal and suplement protocols.  Cancer is largely a metabolic and biochemical disease.  Good natural practitioners address this in a very sophisticated way.

Generally, all cancer treatments involve diet, lifestyle changes, detoxification.  After that, treatments are targeted based-on many individual factors.

No natural method is guaranteed to cure ... but no surgical or corporate method is guaranteed either.  I find many of the statistics used by the corporates to be biased or suspect.  I find a lot of "psuedo science" amongst the alternative crowd, but check-out the Mederi clinic and do your own research.  There are some very good, very advanced treatments out there.