hi i am new here and...

princessnatalia

 i am 52, look 25 and am BRCA2.  in june 2006 my mother passed of several cancers unbeknownst to me.  she never told me  so when she became sick i was told shed had abt 18 months time left w her.  i had been asked to place her into hospice and i fought it till i could not anymore. i didnt understand why they would place a woman who had a year and a half into hospice but they pressed on for it until i finally said ok.  she died the following day after they told me she had 18 months.  thru the mourning and shock of it all i met a woman at the salon i had worked for and she worked in the cancer unit where my mother was.  she told me abt the testing to see if theres a heredity issue.  i was counciled by a dr from penn u and i was a candidate for the blood test.  it came back 6 weeks later showing i had 2 mutated gened of the ovarian type in the BRCA2.  the dr then went on to tell me that most woman opt for breast removal.  i had silicone breast implants for aprox  a year when this all hit.  i wasnt ready for all this but i did opt for the hysterectomy, which was a nightmare and a long story.  so here i am 2008, i was supposed to get an mri but my insurance changed and i lot my primary dr in that interim.  so i finally have found a dr which i am hoping i will like, i have called many offices and nothing clicked.  this one that was recommended to me is an internist and a friend who has cancer as well as her child says shes great and is an internist  which is supposedly better than an MD and not to rattle on, she accepts my ins!  now i havnt made an appt yet.  i am close.  scared but close. for some time now i have had itchy breasts in mostly the nipple area.  there are no bumps, no rash or redness of any kind but they itch,  there is no oozing at all. zip  just itch.  so this is something i am concerned if anyone has.  and also i am wondering is it normal to have 2 mutated genes of the ovarian kind in the BRCA2?  isnt that 2 different areas??  can anyone help me understand this?   do i have to cut my breasts off and reconstruct?  would you?   i hate to start going to the dr every week. i know shes going to refer me to somewhere.  and what abt MRI?  is the dye dabngerous? i am allergic to shellfish.  is an ultrasound better or the mri?  thanks and sorry so lengthy!  ~pat

leaf

You don't have to do anything.  Any patient can refuse offered treatments or tests.  Some people with BRCA choose to keep their breasts and ovaries and choose surveillance.  Some choose to make this decision later.  Others choose removing one or the other or both.  It is an individual choice.

The BRCA genes are very big.  Someone can have a mutation at any place in the gene. Some of the mutations in certain places are known to be significant - there are other families that have this mutation and its known to be associated with a higher risk of breast cancer.    You can have the same mutation in another place in one of the BRCA genes, and it can be of NO significance.  You can have a mutation of UNKNOWN significance - we don't know if it makes you at higher risk or not.

Itching alone is not a usual symptom of breast cancer.  Anything that can happen to other parts of your body can happen on your breasts.

Most people tolerate the MRI dye just fine.  Here's what the Mayo Clinic says:

A contrast agent (dye) may be injected into your veins through an intravenous (IV) line in your arm to enhance the appearance of tissues or blood vessels on the MRI pictures. If a contrast agent is used, your doctor may test your kidney function beforehand and may also discuss the benefits and risks of using a contrast agent during the MRI.http://www.mayoclinic.com/health/breast-mri/BR00019

My friend has an anaphylactic reaction to shellfish, and they gave her a bunch of steroids before her imaging.  (I am not certain it was an MRI.)  and she was fine.  

MRI picks up a lot of things that end up being benign.   The most recent American Cancer Society guidelines recommend using MRI for  screening for women who are BRCA positive. http://caonline.amcancersoc.org/cgi/content/full/57/2/75

Anonymous

natalia---the breast MRI is really not that bad, just a little close quarters and a little noisy. They will give you earplugs which help drown out some of the noise, but it does sort of feel like you are inside a clothes dryer with sneakers clunking around!!!!   I just try to keep my mind focused on something else and do deep breathing to stay relaxed. You go in feet first (laying on your stomach) so your head is at the open end; usually there is a mirror positioned so you can see out somewhat which helps. (I've had 3--the first 2 were head first into the machine---feet first is a lot better!). I did feel a weird cold  sensation when they injected the dye into the IV, but it only lasted about 30 seconds.  I had to have blood drawn to check kidney function for my most recent one ( a new requirement)--had to be done within 30 days prior to the MRI.  Apparently there is a chance for a fibrosing nephrotic syndrome when using the contrast dye, but it is very rare, and you don't need to worry about it if your blood tests for kidney function come out OK. (they didn't give me a choice--both facilities said breast MRI can't be done without the contrast dye--as other MRIs can). I have to have one every year (on high risk surveillance due to LCIS and family history), so I'm getting used to them now.

Good luck to you.  

Msklapkin

Hi pat,

I know this is all scary and so much information at once is confusing.

I had breast cancer and  THEN tested for BRCA.  I am BRCA+ as well and chose to have a doublemastectomy with implants and my ovaries removed.  I was 50 at Diagnosis.

The MRI is the best diagnostic tool, and is really not bad at all.  I would suggest you find a good breast surgeon- not to have a mastectomy but to be comfortable with someone who specializes in breast issues.  He/ she will be your partner thru all of this.

FYI, I had expanders put in at my mastectomy and the expansion process was only about 4 weeks.  Since you already have implants, you know what they are like.  The expander was uncomfortable but a small price to pay.  I have a great new pair of "girls" and sleep at night knowing I do not need constant mammos, ultrasounds and MRI's.

It is a very personal choice, but we are all here to help you

Good luck

princessnatalia

wow you are not to far from me, i am in toms river. it is a forever battle in my head everyday at what i should do. i have found an internist, and i plan to go to her in the coming week. i have been looking for a primary forever.  its a walk in, but i have been to a few i just didnt care for so i hope she is the one.  she takes aetna.  i do not know who to use for my breast surgeon.  who did you use ? being we are so close maybe you could give me some info on who you used  and how you felt abt him or her.  maybe that will clear alot of fears up for me. i have 2 mutated genes of i think the ovarian type in the BRCA2.  that sounds odd to me.  is it normal to have more than one mutation and does it complicate things? my mother had adenocarcinoma. she also had a breast lump for yrs and never told anyone. she had cancer cells in her lungs too.  she was afraid to do anything so she kept it a secret. i do think it would be better for a breast surgeon to tell me what to do instead of my primary. she just has to give me a referal.  any help at all would be appreciated and i really do appreciate yur answer to me. may i get in touch w you in the future and how?  i am willing to exchane phone numbers if you are willing.  thanks ~pat

princessnatalia

thank you for your response. i defnetly am not  up on all this info as it is hard since i dont know all the terminology.  its so much to diegest but i feel i can drag my feet no longer. i plan on going to my newly found primary and take it from there. i do want whats best for me so i have to put my fears aside and take action before action takes me.  the itching could be relative to pagets disease.  i dont know if i have that  but i want to be sure.  it drives me crazy to say the least. i will update anything i find out and i plan to start this coming week when i have off.  thanks so much~  pat

princessnatalia

thanks. i can see that the site here will really be a good support system. i am glad i heard abt it on the radio.  i have been holding back for some time now because of fear and just not knowing what i should do.  i really do appreciate the help.  it eases my thinking.  thank you !  now on another topic...  how do i get a signature picture? ~Pat

princessnatalia

i was wondering if you got my reply, i think i replied to myself!!  lol!   i was wondering if you could reccommend a breast surgeon since we live abt  25 mins apart. i dont know where or who to go to.  thanks pat