Apr 17, 2011 06:23AM - edited Apr 17, 2011 07:06AM by leaf
I have an anxiety disorder too. For now, I have chosen tamoxifen, and will be finishing up my 5 years this fall. I have yearly mammograms and twice-a-year clinical exams. (My core biopsy showing LCIS and nothing worse was in Dec 2005.) This is all that is recommended by NCCN. nccn.com/patient-guidelines.html (click on patient guidelines on the left side, LCIS is listed on page 9.) I am not trying to imply I am 100% happy with my followup, but it does follow the NCCN guidelines.
I had a 2nd opinion on my pathology report (which turned out the same), and a 2nd opinion at an NCI-certified major institution. I was not very happy with them. I wanted to know more about my risk. I was told my lifetime risk was 'somewhere between 10% and 60% lifetime risk, but probably closer to 10%. If you want more information, you'll have to go to journals.' I did, and had a lesson on how little we know about breast cancer risk prediction. In 2007, they said they offer LCIS women yearly mammograms, twice-a-year clinical exams, and offer tamoxifen. This follows the NCCN guidelines.
There is little about LCIS that is NOT controversial. Part of the problem is that LCIS (and nothing worse) is uncommon.
There is no huge rush to begin tamoxifen (if that is what you choose to do) after an LCIS diagnosis. The average incidence of invasive breast cancer in the LCIS (and nothing worse) population is about 0.5-1% per year (assuming you do not have anything worse lurking.) They try to reduce the incidence of 'something worse lurking' by doing an excision of the area if you were diagnosed with LCIS and nothing worse by a core biopsy (as opposed to an excision.) Roughly, 20% of women who were found to have LCIS and nothing worse on a core biopsy get 'something worse' after excision. They are not doing the excision to remove the LCIS, but to see if there is something worse lurking in the area.
It took me about 3 months to get my initial appointment with an oncologist.
I know of no studies that look at the lifetime impact of tamoxifen on LCIS women. Tamoxifen was first routinely offered after the results of the NSABP P-1 and STAR studies. (The STAR study recruited women 1999 - 2004.) Only about 10% of the STAR study participants were LCIS women. www.ncbi.nlm.nih.gov/pubmed/19... The STAR study compared tamoxifen and raloxifen use, and found they both cut the risk of future invasive breast cancers by about 1/2. There were 4 deaths from breast cancer in the tamoxifen group and 2 deaths from breast cancer in the raloxifen group. Note that about 70% of the STAR study participants had a first degree relative with invasive breast cancer, thus were at higher risk for BRCA, which carries up to about a 90% lifetime incidence of breast cancer.
The state of breast cancer prediction FOR INDIVIDUALS (even from the general population, not LCIS patients) is in its infancy. We know reasonably well how many women in a group may get breast cancer, but we have a VERY POOR idea which of these women will get breast cancer. If the state of the art is this bad for the general population, you can imagine what it is for the unusual LCIS women. jnci.oxfordjournals.org/conten...
Yes, it is possible to get advanced breast cancer after having LCIS and nothing worse. Many things are possible. In this 2000 website they cite that 2 out of 214 women with BRCA who opted for prophylactic mastectomies (these women are at much higher risk of breast cancer than the 'garden variety' LCIS woman) died. jco.ascopubs.org/content/23/24/5534.full.pdf
But in the Chuba et al study, LCIS women had less advanced diagnoses than women from the general populaton. (See figure 1, p. 5538 bottom) jco.ascopubs.org/content/23/24/5534.full.pdf About 1.5% of LCIS women compared to about 5% of women from the general population had tumors >5cm in size. (They don't specify stage though.) Note these women were LCIS women that were diagnosed between 1973-1998, thus did NOT have tamoxifen, and probably much poorer mammograms, ultrasounds, and probably no MRIs.
In the much smaller Port et all 2007 study (more recent) www.ncbi.nlm.nih.gov/pubmed/17... they had no LCIS or ALH patients that were diagnosed with over stage II.
I know of no studies that specifically look at LCIS women and the effect of diet, exercise, etc. Presumably, diet and exercise are good for breast cancer risk and your general health, but I know of no studies that actually look at this.
Tamoxifen is normally given for 5 years, then stopped (except in the advanced breast cancer/metastatic situation). I know of no studies that look at the lifetime effect of tamoxifen on LCIS (and nothing worse.) At least one of the reasons why they normally stop at 5 years is from the increased incidence of uterine cancer after 5 years.
It is hard to judge which of the usual treatment options you wish to follow:
Most women with LCIS have disease that can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. The use of tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women. The NSABP-P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months. Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.)
Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.Treatment Options for Patients With LCIS
- Observation after diagnostic biopsy.
- Tamoxifen to decrease the incidence of subsequent breast cancers.
- Breast cancer prevention trials, including the National Cancer Institute of Canada's trial (CAN-NCIC-MAP3 [NCT00083174]), for example.
- Bilateral prophylactic total mastectomy, without axillary node dissection.
You may or may not agree with the NCI or many breast surgeons. (My breast surgeon refused to do prophylactic mastectomies on me. I have a weak family history and classic LCIS. You're not going to get a mastectomy if you don't have a surgeon who is willing to do them.)
I am NOT advocating one treatment choice or another. That is an EXTREMELY personal and individual choice.
There is no huge rush to decide, assuming you have nothing worse than LCIS.