Surgeon Refused Excisional Biopsy

Lisa123456

Hello everybody,

I've just joined this board. I'm 49 and perimenopausal. I have no history of BC in my family. One month ago I was diagnosed with classic LCIS after a vacuum-assisted CNB. My LCIS was presented as a cluster of suspicious microcalcifications on my first ever mammogram. My GP delivered the diagnosis as a "I'm sorry, but you have cancer" line, which, obviously, was a shock to say the least. She didn't know anything about the condition and didn't bother looking it up before seeing me, but referred me to a general surgeon at my local breast center. I had an appointment with him yesterday. Right before the appointment, the nurse who processed my intake papers told me I don't have cancer. Because I spent 3 weeks reading on the subject, I knew there would be some back and forth on this, so I asked if she thought my LCIS cells were malignant or benign, and she said benign.

The surgeon sent a junior resident doctor to do a physical exam before the actual appointment. The resident also said I didn't have cancer but a cancer marker. The surgeon said my pathology report stated that the findings were concordant with the radiology findings and in such cases he doesn't perform surgical biopsies. I told him that according to my research, there's a 25% chance of an upgrade to an invasive cancer after the excisional biopsy. His response was that this research date was outdated because with newer CNB techniques, they take larger samples which allows for better diagnosis. He also said my lifetime risk of developing BC is 30% and he'd recommend enrolling me in a high-risk group at the breast center for the follow-up. Also said he'd refer me for an MRI to have a baseline image. I asked if I could get a referral to an oncologist in case I'd like tamoxifen, and he said "okay, sure, but I don't know why you'd want tamoxifen considering risks and side effects". The whole appointment took 5 mins. I felt like they brushed me off, but here in Canada we can't really shop for doctors and get 2nd opinions (I tried, and the other surgeon's office told my GP's office the surgeon only takes cases with proven cancer diagnosis). So, basically, it seems that when someone is diagnosed with LCIS, the breast center has to act somehow even though they think it's just a nuisance.

I read all the topics under the LCIS section of this board and many of them were very helpful. Any advice would be greatly appreciated.

Here's some details about me: I had my first period very early and my only child was born when I was 35. I breastfed her for 18 months and had a bad case of mastitis towards the end of breastfeeding on the same breast that has LCIS now (wonder if there's a connection). I've never been on the pill. Had tons of chest and dental X-rays when I was a child. I've always been healthy and slim (5'6" , 95 lb), small-breasted, on a healthy diet (no junk food, no eating out), rather active but had little to no actual exercise.

Here's how I changed my diet and lifestyle so far:

- Eliminated alcohol (I've never been a drinker, but now I don't touch it at all).

- Eliminated all added sugar (except what's in regular non-sweeten bread and things like that).

- Consume all my meals within an 8-hour window and fast for 16 hours every day.

- Take 2000 UI of vitamin D3 drops

- Drink 1 cup of dandelion root tea every day

- Take 3 tbsp dandelion leaf water extract every day

- Eat hemp hearts

- Walk at least 30 mins every day

I don't really believe in very restrictive diets, such as vegetarian, raw, no dairy, no carbs, etc. I do realize that I need to add exercise to my daily schedule.

I'm considering tamoxifen for 2 years. If anybody has had experience with tamoxifen gel, would you, please, share? I'm not sure it's been approved by the FDA though.

Also, how do people find clinical trials? Do oncologists suggest them to their patients?

Thanks for reading and, again, any input would be greatly appreciated.

MelissaDallas

Here is the draft of the most recent NCCN Guidelines for Physicians showing the most recent changes. They are saying now that monitoring instead of excisional biopsy following core biopsy may be appropriate for some women. I had to just search the page for LCIS and go place to place. Interesting.

http://ladiesfirstproviders.vermont.gov/sites/ladi...

leaf

Just about everything concerning LCIS is controversial, so expect almost every medical professional will give you a different opinion.

Several papers, even in the last 10 years, have given different opinions whether or not to excise the surrounding area following finding LCIS on core biopsy. This recent paper says about 60% of UK breast surgeons would excise, 20% not excise, and the rest no clear pattern. http://www.ncbi.nlm.nih.gov/pubmed/26492902

One of the downsides of getting a surgical excision is that you definitely will create scarring, which will make future mammograms more difficult to read. Obviously, one upside is that _if_ you in the minority, and do have invasive breast cancer in addition to the known LCIS, you will have found the invasive breast cancer at an earlier stage now than if it is detected later.

If you haven't seen my many posts before, know that, except perhaps for having an extensive family history suggesting a BRCA mutation or chest Xray TREATMENT (for example for lymphoma, or being near the Chernobyl nuclear explosion), our breast cancer risk models to predict who will get breast cancer is 'better than a toss of a coin, but not by much' - in other words, the toss of a coin would be 50% correct and 50% wrong; the modified Gail model was correct about 60% of the time and wrong 40% of the time. http://jnci.oxfordjournals.org/content/98/23/1673.... . The modified Gail model automatically excludes LCIS women. So if they can't figure out the risk of the 'average' woman, how well do you think they can figure out the risk of an LCIS woman (unusual condition, where they don't really know the risk of the group, let alone an individual.)

I wasn't referred for a clinical trial, but I have many other medical issues that would muddy the waters.