What would you consider high risk?

Umm with all due respect aquariusgi, DCIS IS a cancer, it is just not an invasive cancer.. so there are truly cancer cells in the duct when dx'ed with DCIS and if left there long enough there is concern (and some evidence) that they can become invasive cancer.. It's about doing what makes you feel safe IMO.. and we have all freeked out - doesn't make it any less for one of us than another..

Anytime we have been dx'd with LCIS or DCIS we are high risk. 

Barry I do understand that it is a weight each day to wake up and wonder if you are doing the right treatment.. when is your next mammo?

Best

Deirdre

barry, there are two type of risks that you face.  You may or may not be high risk for one but you certainly are "high risk" for the other. 

The first is your recurrence risk.  You had high grade DCIS a year ago; it was removed and then recently, you had a recurrence.  It's been removed again.  I don't know what your recurrence risk would be now - your oncologist is the expert on this - but it depends on the size of the margins and the amount & aggressiveness of the DCIS.  Without radiation & Tamoxifen, Grade 3 DCIS usually is considered high risk to recur, however if you had very large margins, your risk may be lower.  Or perhaps because this was a recurrence already and now has been removed, your risk may be lower.  I don't know.

The second risk is your risk to get a second breast cancer - a new cancer, unrelated to your current DCIS - at any point in the future.  Anyone who's had breast cancer, whether it was invasive or DCIS, is considered high risk to get breast cancer again.  The fact is that one of the most significant risk factors for breast cancer is a previous diagnosis of breast cancer (including DCIS).  The rule of thumb that I was told by my oncologist is that once you've had a diagnosis of BC, your risk to get BC again is approx. double that of the average woman your age.  What your risk actually is depends therefore on your age and on any other risk factors you may have.  Again, it's your oncologist who should be able to explain what your risk level is.  In my case, I'm 52 now so my risk to be diagnosed with a 2nd BC sometime in my life is about 20%, vs. 10% for the average 52 year old woman.

Being high risk isn't a comfortable feeling. This is why some women choose to have bilateral mastectomies.  For me, I know that I have a pretty high risk tolerance.  Certainly for the first few mammos after my treatment, I was very nervous.  I think I started to get nervous about 2 weeks before the appointment.  But I'm now 3 years post diagnosis and for my last mammo, I honestly didn't get nervous until I walked into the room for the test.  So I'm okay living with my risk level, but of course I know that doesn't change the fact that I am high risk. 

Aquariusgi, as you suggest, please do more research.  While both LCIS and DCIS are often grouped together under the "Stage 0" umbrella, generally LCIS is considered to be a high risk condition, whereas generally DCIS is considered to be pre-invasive breast cancer.  Here's how it's explained on this site:

Despite the fact that its name includes the term "carcinoma," LCIS is not a true breast cancer. Rather, LCIS is an indication that a person is at higher-than-average risk for getting breast cancer at some point in the future. For this reason, some experts prefer the term "lobular neoplasia" instead of "lobular carcinoma." A neoplasia is a collection of abnormal cells.  http://www.breastcancer.org/symptoms/types/lcis/

So, is DCIS actually cancer? The answer is yes, because DCIS is an uncontrolled growth of breast cells. On the other hand, it is a cancer that doesn't behave like most cancers. DCIS hasn't started to break through normal tissue, which means it's not life-threatening like invasive cancer. However, DCIS still requires careful medical treatment.  http://www.breastcancer.org/symptoms/types/dcis/

Barry,

My recommendation is that you ask for a referral to an oncologist.  You've had breast cancer - you should see an oncologist.  A surgeon is not an expert on risk levels; that's the oncologist's area of expertise.  A surgeon is also not an expert on any treatment other than surgery.  Of course they've seen a lot, they have opinions and they can advise you, but the expert on which treatments are most appropriate to reduce risk after surgery is the oncologist.  You don't need to see the oncologist on a regular basis but you really should see him or her at least once so that you can get accurate information as it relates to your specific situation.  I'll be honest and say that as youv'e been going through treatment - both initially and with the recurrence - I've been surprised at some of what you've been told about risk levels.  Now that I realize that you've never seen an oncologist and the information has all come from your surgeon, it makes more sense. 

In my case, since I decided on no additional treatment after my mastectomy, I saw the oncologist only twice.  The first time we discussed my risk level and what additional treatments I could consider.  My oncologist actually recommended against any other treatment because he felt that the risk/benefit equation didn't work out in favor of the treatment (based on my specfic situation).  I then went away to mull it over & do my own research and my second visit was a final discussion about my decision.  My oncologist was happy to continue to see me but agreed that there really was no need since I wasn't on any treatment.  So we left if open - if I have a concern, I can set up an appointment but nothing is scheduled. 

Please, get yourself to an oncologist.

 I do hope you are able to get the reconstruction too..I wish you all my best!!!

Stefie,

Yes, this does matter.  If the BRCA genetic mutation is in your family, while you have to inherit it directly from one of your parents - it doesn't skip a generation - it's possible that your parent had the gene but never developed cancer.  Not everyone does.  There also are other cancers that are related to the BRCA mutations - ovarian cancer, prostate cancer and to a less degree, pancreatic cancer, stomach cancer and some others - so sometimes there might not be a history of breast cancer but these other cancers instead.

When I had my genetic testing, I was asked for the health history of my parents, my siblings, my aunts and uncles, my cousins, my grandparents.  All of that is necessary to assess if there is a likelihood that the BRCA gene might be in the family. 

If you haven't seen a genetic counsellor, it might be a good idea to see one.  That doesn't mean that you need to take the BRCA test but the counsellor will assess your family history and can tell you if he/she thinks there's a reasonable possibility that the gene might be in the family.  Then you can decide if you want to be tested or not.  

TO ALL THE WOMAN OUT THERE PLEASE GO AND GET CHECK UP AND BE AWARE.

Shelley you've tested negative for BRCA, so I think your counseller is likely correct. Don't forget that BC is a very common disease, and seperate occurences in a family may not always have a genetic component. Has your aunt taken the test?

Shelley, the BRCA genetic mutation is related to more than breast cancer.  While breast & ovarian cancers are the cancers that someone is at most risk for if they have a BRCA genetic mutation, in fact the risk for quite a few other types of cancer also increases.  So it is possible that a history of these other cancers could be a sign of the BRCA mutation being in the family.  In your case you tested negative even though you have many of these other cancers in your family but this is important information for those who haven't been tested yet and who are wondering whether it's possible that the genetic mutation might be in their family.  For more info on this, see the various links that I've provided below.

As for whether your children are at greater risk because you and your aunt have had BC (and because of the history of other cancers in your family), there is in fact no way to really know.  As Elaine suggested, because BC is so common and so many women get it, the fact that you and your aunt both had BC is most likely not related to genetics - it was probably just the luck of the draw and the odds.  I've had BC, as have my mother and her sister but like you I tested negative and my genetic counsellor told me that technically my risk, and the risk of other women in my family, is likely no different than average.  But she also explained that while I tested negative now, there's no guarantee that I'll always test negative -  this is because it's expected that there will be new variations of the BRCA genetic mutation discovered in the future. Additionally, pretty much all geneticists agree that there probably are more 'cancer' genes than just the ones that have been identified so far.  So while the current BRCA gene mutations aren't in your family, there might be another gene - one that's not yet discovered - that's causing some or all of the cancer in your family.  And that could increase your children's risk.  So what it comes down to is that nobody knows.  Because of this, some geneticists say that if you test negative for the BRCA gene, you can assume you have average risk, while other geneticists say that even if you test negative, if there is a family history of BC or other cancers, your risk may be elevated.

Here's the info on the other cancers associated with the BRCA gene:

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"Although mutations target breast and ovary, a broader spectrum of cancers also occur with statistically significant elevated frequencies....Additional sites at risk included stomach, pancreas, prostate, and colon. The increased risk ranged from about 20% to 60%, with the greatest increases in risk in stomach and pancreas."                                                                 http://www.ncbi.nlm.nih.gov/pubmed/16369438

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BRCA1 Mutation  - increased risk for other cancer types, such as prostate cancer

BRCA2 Mutation  - increased risk for other cancer types, such as pancreatic, prostate, laryngeal, stomach cancer, and melanoma    http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs.html

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"A woman's lifetime chance of developing breast and/or ovarian cancer is greatly increased if she inherits an altered BRCA1 or BRCA2 gene....These women may also have an increased chance of developing colon cancer.

Men with an altered BRCA1 or BRCA2 gene also have an increased risk of breast cancer (primarily if the alteration is in BRCA2), and possibly prostate cancer. Alterations in the BRCA2 gene have also been associated with an increased risk of lymphoma, melanoma, and cancers of the pancreas, gallbladder, bile duct, and stomach in some men and women."   http://www.cancer.gov/cancertopics/factsheet/risk/brca

There aren't 3 breast cancer genes.  The two most common single genes that increase your risk of getting breast cancer are BRCA1 and BRCA2.  There are others, though.  Many of them are quite uncommon.  Some of them have multiple names.  One of them is PTEN (Cowden's syndrome).  When I was genetically counselled in 2006, they said there had only been 200 people worldwide, ever , who had been completely diagnosed with Cowden's.  Cowden's gives an approximate 25% lifetime risk for breast cancer, much less than the risk of BRCA1 or BRCA2.  There are other gene abnormalities in other genes that put you at higher risk for breast cancer.  

Only about 15% of breast cancer is thought to be due to single mutations in genes that are passed on by heredity.

Some families have very strong family histories (such as EVERY female in the family has gotten breast cancer), yet when tested, they are negative.  This means there are probably breast cancer gene(s), or combinations of genes, that infer a strong family risk.We don't know what genes these are, or if we do, they have not yet developed a commercial test.

This is a field that is changing.

A board certified genetics counselor in cancer prevention is the person who knows the most about this.