After care for BRCA+ patients who've had BC

This is a very good question.  My understanding is that everybody has an individualized care plan so it behooves us to compare notes.  Since I had all the surgery this year for most prevention of further recurrance, I was told to go on about my life basically and I would not need further scans.  The BS said that future BC would be found with BSE if that and the possibility of a peritoneal cancer is only 1%.  One of the benefits of this life saving surgery I had is to go on about my life without the major fear of being BRCA 1 with an up to 85% recurrance.  I guess time will tell.  I have a very small meningioma but even they are watched for years until symptoms cause you to seek and intervention.  If anyone on the boards have this too, please feel free to PM me.  MRI's are the saving studies for us but also pick up things that are not necesssary to treat.  I had two professionals tell me that they don't go looking for problems! 

Dr Oz had an episode this week with two opposing views from BS....one talked about not treating DCIS and the other did....perhaps it is on line.  I was surprised that BRCA was not even mentioned !  It pays to educate ourselves, doesn''t it ?

I'm triple neg but my docs haven't bothered to test me for the gene. Not important to them I guess. They also said they would only do scans if I had any symptoms-which I did last month and now have a recurrence in the supraclavicular nodes...but in the last 4 years I've only had two bone scans and two CT's. Not too bad I guess but I don't know how many is too many?

Hi Kittycat-

The supraclavicular nodes are the ones near the collarbone. Looks like we have a fair bit in common. I think we are both around 40 and your second diagnosis was nearly indentical to my first. Although my tumor was 0.9cm. They found cancerous axillary lymph nodes 3 years later.

Yes radiation can suck. The pain from the burn is something I will never forget. Just remember to always put something on it (like aloe) and don't wear any bras-I think that was my biggest mistake. Hopefully you will just breeze through it )

And yes this disease does suck!!! Bigtime!!!!!!!!!

Hi Kittycat-the first time I had a lumpectomy and radiation. Chemo was recommended but I refused. This was really just before the started using the term triple negative. Last year they wanted to take my breast off as well as chemo and radiation...I'm a difficult patient as in I don't really like chemo and radiation or losing my breast. I had surgery to remove the nodes and tried chemo once but it made me really sick. Since I can't have surgery this time I think I am going to try Abraxane. And I am also going to request some genetic testing-coz I have daughter. I'm starting to think this country is a bit behind the times with medical testing...

It certainly is weird how you both had the gene and still ended up with different cancers! It's still such a mystery! I don't have any breast cancer on my mother's side. I think there is some on my father's side. I always thought it came down the maternal side but maybe not. In the end I guess it has to start somewhere-just wish it hadn't been me!

 Kittycat

In 2008 went through dx and tx....mx, chemo, and rads.  I am also triple neg, node positive and had been seeing my doc and surgeon every 6 months opposite of each other.   Went for BRCA testing in May ''09 and got the results this May 2010 positive for BRCA 1....lucky me.    It takes alot longer up hear in Canada .  Still have the same appt. schedule with docs the only difference is I have now been referred to a high risk clinic and they will do yearly MRI's if I choose to do so.  I live 8 hours away from the closest MRI so still pondering that.

Breast surgeon said to think of the possibility of having Mx on the remaining side if I didn't want to deal with yearly scans and the anxiety that goes with them.  Also have just consulted with gyno and they strongly suggests laporoscopic salpingo oopherectomy for me (ovaries and tubes removed ) because  the BRCA 1 elevates the chances of getting ovarian cancer.  I am 47 post menopausal and done having kids, so really have no need for them anymore.  So there are alot of decisions to make ! All because of one little mutated gene !!

hi angelsaboveus, that's pretty bad taking a year to find out that you tested + for the brca gene.  my sister(passed away a year ago)had the whole series done in march 31, got the results back with in a week or two. i ha had the one series done (brca 1) May 6, 2009-results back May 12, 2009 (day after my sister's celebration of life)

Kittycat

good luck with your last chemo !  You said you were anxious about your upcoming rads.....try not to be. I know easier said than done. ! I found that part to be easier than chemo , the first one is a little hard just because you don't know what to expect but after that it was just 15 min. out of my day.  Mind you I did have the 15 day 5 boost protocol because I wasn't doing recon. so it was a bit shorter.

cassou1,Latte........before the genetic blood test I was warned it would take that long, there seems to be a huge backlog that they can't seem to catch up on. I guess it's the tedious process of going through all the genetic series.

I don't know if it would make a difference if we had to pay for it and whether that would speed things up.  I could have done it in the states and had it done quicker but it would of cost too much for me

I am positive for the BRAC gene with TNBC and one male and one female cousin and one aunt tested postivie as well.  Once my doctors found out that my cousin who was two years older than me had the gene they immediately ran base scans on her MRI and Cat Scan, took blood work and they have her coming up every 6 months and she doesn't have cancer.  My male cousin is in the Air Force once they found out the family history, my cancer and that his dad had prostate they immediately sent him to be tested for the gene, he also gets 6 month check ups.

 Several other of my cousins are scared to take to the test.