47% risk- decisions on masectomy or chemoprevention

lglavish

Hi All,

I was just given a 47% risk for bc by my genetic counsler even though I've tested BRCA negative.  I also have rheumatoid arthritis which is well controlled with a biologic.  I am considering pbm because even with 'increased surveillance' a diagnosis of breast cancer would mean I would have to stop the biologic rheumatoid meds.  My RA is severe without these drugs and I would be completely disabled.  I'm not opposed to a pbm at all, but does that seem extreme with ALH and FEA?  Any input would be greatly appreciated!  I'd also like to hear what risk % others have been given and what they've decided or been advised.

Racy

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.

peanutsgal

Hello, Lisa,



I had ALH, numerous microcalcs, very dense breasts and a risk % similar to yours. I have MS and, like you have more than "just breast issues" to consider when deciding my future course of treatment. I had a history of DVT and therefore was not a candidate for tamoxifen. After several excisional biopsies, I finally asked my BS if I would be overreacting by choosing PBMX. Without blinking an eye, he said absolutely not and started the ball rolling that very day. Long story short, I had my PBMX six months after I made the choice. Insurance approved surgery on first attempt. If you have any questions feel free to PM me.

Best of luck to you in whatever you decide to do!

peanutsgal

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

leaf

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.  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.

leaf

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.

ballet12

Hi lglavish,

Why have they told you that you would need to stop the biologic rheumatoid meds even in a situation of increased surveillance?  By increased surveillance, do you mean follow-up for ALH and FEA? I do understand about chemotherapy combined with the biologics.  They both suppress the immune system, and the combined effect could be very serious.  Even radiation affects the immune system to some extent, but if one were to have a bilateral mx for actual breast cancer (not prophylactically) and not need further treatment, would that negate using the biologics?

You asked about risk %.  I was never given any specific individualized number prior to my diagnosis.  I had a previous diagnosis of ADH and family history, but was never given an individualized percent risk.  Even now, after the DCIS diagnosis, I still don't have a specific number, although the physicians give general numbers based on population studies and characteristics of the pathology (high nuclear grade, multiple surgeries to achieve clean margins, necrosis, etc.)  I haven't a clue as to what the "actual" risk percent is for the contralateral breast or the diagnosed breast.  I was pretty nonchalant about the whole thing for years.

Annette47

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.

farmerlucy

I saw a genetic counselor and he said my risk was 50%. I'd known for years I'd have a pbm if anything came up. Alh and adh did present itself . The pbm was the best decision I ever made. My onco said at my first visit "based on where the tumor was located you very likely saved your own life. " See my bio for the rest of the story. Blessings!

lglavish

Ballet12- I never said they were stopping my biologic for increased surveillance.  I did say that if diagnosed with breast cancer I would have to stop the biologic.  As far as your question about being diagnosed, having a bilateral mx, and not needing further treatment for the cancer- the answer is I would have to wait 5 years from being 'all clear' before I could resume my RA drug.  The exception is rituximab, but I'm not on that, and it may not work.  Of the 10 biologics available for RA only rituximab can be used when it comes to malignancies. 

I do appreciate everyone's input- my risk % was based on family history and the ALH.  I have dense breasts and just had an mri that came back with an area of enhancement birads3 but some of the dye infiltrated so part of the test was incomplete.  I've already had 4 biopsies in 3 years, all but one was excisional. 

I'm glad this forum is here, RA is a huge uncertainty in my life, no one can tell me when or if my current drug (third biologic) will stop working.  I guess I just am so sick of uncertainty and now this too is a double whammy.

lglavish

Also I'll add that my risk assesment was done by a genetics counsler.  My paternal grandmother died from breast cancer and my maternal aunt was diagnosed with triple negative in 2009.  I'm of Ashkenazi descent which is why I tested for the BRCA.  If I didn't have the RA to deal with I'd go with raloxifene (which has been offered) and increased surveillance, but it is not catching it early... it's catching it period that is the problem.

Racy- your last comment hit 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."

Beesie

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.

lglavish

Beesie- thanks for the reply, I am post menopause and 47.  I went through menopause very early (37) and have had no children.  I have heterogeneously dense breasts.  I have also 3 great aunts that all had breast cancer so maybe the genetics counsler is taking this into account.  She said my familial risk was only 14% but because of the ALH and other non familial factors it is much higher.  She works with an MD that specializes in genetics also.  For my own research I bought some recently published text books and although the current thinking is increased surveillance and maybe chemoprevention they really don't know- some in the field are beginning to think that lobular neoplasia may be more than just increased risk.  As far as the FEA goes that is even more of an unknown. 

BikerLee

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."

vmudrow

Just my two cents - the genetic counselor figured my risk at 40% - strong family history, ALH, dense breasts.  My surgeon though it was the right choice to have PBMX - plus I wouldn't have to take Tamoxifen.  Very happy with my decision - the whole process went well.  If you do decide on PBMX ask if you are a canidate for nipple/skin sparing  - hope all goes well.

Hugs, Valerie

cookiegal

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.