47% risk- decisions on masectomy or chemoprevention

I am not familiar with the use of genetic counselling in predicting the chance of bc when BRCA -. In fact I have never heard of this before. Is this testing common and reliable?



You ask whether having a PMBX seems extreme. Well, the possible consequences for you if you do get bc seem extreme.



I think it might be worthwhile to get opinions on other options from a breast surgeon and your RA doc before making a decision.

Genetic counseling was a prerequisite for me. Insurance would not approve surgery without it.

You are going through a lot.  I don't know about the RA part of it, but can give a bit more of an idea about the bc risk assessment.

I have classic LCIS, and a genetics counselor gave me a 30-40% lifetime chance of getting bc.  A genetics counselor said I was at low risk for a BRCA mutation, so I didn't get BRCA tested.

Eventually, I went for a consult at an NCI-certified center,and the bs gave me a '10-60% lifetime chance of getting bc, but probably closer to 10% than 60%.  If I want better numbers, I need to go to the literature.'  So I did.

I found this article in an academic journal. http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf

To make a long story short, essentially it says that, while we know pretty well the breast cancer risk of large groups of women (at least populations in the US and Italy), our models for predicting breast cancer for individuals is really, really poor.   Before I read this paper, I didn't realize there could be a difference. It looked at the modified Gail model (which is routinely used for people in the general population, such as http://www.cancer.gov/bcrisktool/) and at another model that included other breast cancer risk factors such as breast density.  For both models, when used for individual women, the 'models were better than the toss of a coin, but not by much.'  Specifically, 59% of the women were predicted correctly they could have breast cancer, but 41% of the women were not.  Compare this to a 50% to 50% chance of a coin toss. 

These models may not apply if you had a BRCA 1/2 mutation, or if you had chest radiation treatment (such as for Hodgkin's disease.) 

I am NOT advocating one treatment choice or another.  That is a very personal choice. 

However, I am suggesting  that your figure of '47% lifetime risk of breast cancer' in a BRCA negative, no history of chest radiation treatment woman has a lot of uncertainty in it.  In other words, I do not think they know the '47%' figure very well for you.

As far as my own situation, I was told by my bs upon entering the room for the first time before I had my excision that she would 'fall over in a chair if I wanted BPMs.'  On a 2nd opinion at an NCI-certified center, the bs said she 'would not advise BPMs for me, but they would not bar the doors if I wanted them'.  Unfortunately, the latter bs was not in my insurance network, so I would have to pay roughly 80% out of pocket.  So my choices were restricted due to cost.  No one (unless they are stranded in the Antarctic) is going to have surgery unless a surgeon agrees to do the surgery.

Just to concur with what Leaf said - I think that the current ability to predict who and who will not get bc is not very good.   For example, according to the models she referenced (both gave the same answer) there was a only 1.7% chance I would be diagnosed at the age I was.

You have to make the choice that's right for you, but personally, I wouldn't place a ton of stock in that 47% figure.

Lisa, personally I'd say that a PBMX is not extreme if your risk is 47%. 

However, with ALH and FEA, and with just one second degree relative on each of your family having had breast cancer, I'm surprised that a genetic counsellor assessed your risk to be as high as 47%. Neither ALH nor FEA increase risk to that level. Family history can be an important factor but single cases of breast cancer among second degree relatives aren't given much weight when it comes to assessing family history. One is considered to have a family history of breast cancer either if one or more first degree relatives (parents or siblings) or multiple 2nd or 3rd degree relatives all on one side of the family (grandparents, aunts, uncles, cousins) had breast cancer or related cancers such as ovarian and prostate.  From anything I've read, having only one second degree relative on each side of your family with breast cancer likely doesn't increase your risk by much or even at all.

As for having dense breasts, how old are you?  And do you know your degree of density?  Scattered fibroglandular densities?  Heterogeneously dense?  Or extremely dense? For women who are pre-menopausal, having some level of density (scattered fibroglandular or heterogeneously dense) is the norm rather than the exception. For pre-menopausal woman, it's the highest category of density that is really the concern in terms of increasing breast cancer risk, and even at that, this is more of a risk factor for post-menopausal women (who normally do not have the same level of breast density).  On the other hand, if you are post-menopausal and have extremely dense breasts, then certainly your risk will be considerably higher than an average woman your age.

I appreciate your concerns with regard to RA.  I know that there are some discussion threads on this board among women who've had BC and who have RA.  You might want to do a search on this board to find those threads and maybe contact some of those women to see what approach they are taking.  Given your concerns, certainly I can understand your desire to do something now, before you are diagnosed.  But I'd suggest that you may want to dig a little deeper into your risk assessment before you use the "47%" figure as a key factor driving you to have a PBMX.

This is a hugely personal decision...

If I had your health and birth family history, I wouldn't hesitate.  I would go for the bmx.  Chemo sucks. Long term side effects suck.  

I base this on my experience having gone through chemo.

Having a surgery like this when you're health and strong is far easier than when you HAVE to have it because you've got cancer...

Just my two cents.

I wish you peace around this decision - whatever you decide. I hope you are able to feel confident in educating yourself and in communicating with your health care team.  It's a difficult decision.

At the end of the day, my choice to have the bmx rather than lx/rads or even smx has contributed to my sense of calm and peace in my life. While the bmx does not lower my risk of metastatic disease, it does drastically reduce my chances of a new cancer and my chances of a local recurrence.

Good luck.

PS - I agree about Racy's last comment hitting the nail on the head-" You ask whether having a PMBX seems extreme. Well, the possible consequences for you if you do get bc seem extreme."

Would you be able to keep taking the meds if you had the surgery? If so, that really might be a good rationale for going ahead.

Here is something to consider, some women have surgery and a quick easy recovery and some do not. I feel like when you are looking at risk numbers they don't bring up the physical issues that may or may not arise.

Frozen shoulder, mastectomy pain syndrome, infections, even a slight chance of lymphedema.

I am not telling you what to do, but I do feel that doctors sometimes minimize side effects, or perhaps we have trouble focusing on them.

I am just thinking that if you are already dealing with RA, the last thing you may want is the risk of more rehab issues.

I am biased, I spend several very difficult months disabled by side effects that I never fully realized were a possibility.