Surgery tomorrow & wondering about BRAC tests

Sparrow,

You are dealing with so much right now. Given your mother's new information, you'd have to meet with a geneticist to go over your family history, get your blood drawn and then wait 2-3 weeks for the results. Stay with your original plan, deal with what you do know, then plan to get testing at a later date, if your mom tests positive.

I was 47 when I was first diagnosed, my sister was 36. After I was diagnosed the second time, I went for genetic testing and I am BRCA 2+. With the recommendation of my geneticist I had a hysterectomy with bilateral Salpingo oophorectomy...everything out. After going through "chemo-pause" I figured my hormones were shut down...until my second diagnosis was ER+ PR-. My sister was tested and she is also BRCA 2+. We get it from my dad, as his mom died of breast cancer and he's had colon and kidney cancer. The strange thing with him is that he hasn't expressed the cancers in our BRCA "list", but has had colon and kidney cancer. We have no idea where his cancers came from or if they are hereditary. I am in three different studies, hoping something will be found to help others.

I have two sons, two daughters and three grand-daughters, so far. They all know my BRCA status and will each need to decide if they want to be tested. I have another sister and brother and they are choosing not to be tested. It is a personal decision for each of us.

Best of luck tomorrow and with all decisions you will be making. Take each day as it comes and focus on THAT day. There's a web site called FORCE at www.facingourrisk.org, which deals with BRCA 1&2...

Linda

Dear Sparrow, I've just gone through a wide excision which found extensive DCIS followed by a Mastectomy which found residual DCIS and IDC.  Unfortunately, sentinel node wasn't done in my case and now we're looking at doing something else.

 My Mother and Sister, both BC premenopausal; all of my aunts on my Fathers side, plus various cousins too.  My cousin and I were both tested for BRCA 1 & 2 and found to be negative; this doesn't negate the genetic tendency that is going on through my family, it just means that we are positive for these particular genes. 

Follow your prescribed path tomorrow and good luck.  Take each day and make your decisions based on sound advice with a clear mind and not something done in haste.  Rest today, clear your mind as much as you can.  My Niece told me on the way to the hospital for my surgery..Aunt Janice, the expectations for your performance today are pretty low!!!  I laughed about that all the way to the OR!! 

Good luck!!!

Sparrow, I wish you all the best for your surgery. If they are offering an overnight stay for you, don't decide before the surgery. You may want to go home, you may not.

As far as the genetic thing - on my father's side I have 2 aunts who had breast cancer, another aunt who had colon cancer (which is considred related somehow) and my grandma had ovrian cancer. BRCA 1 & 2 negative. My genetic material is part of a study now, done by researchers who realize that BRCA 1 & 2 are not the only genes that give you a predisposition for these cancers. I had a single mast, and am planning to have my ovaries removed since I have a number of risk factors for ovarian cancer. I'm postmenopause so that's not an issue. I haven't yet decided about mast on the non-bc side, but I'm seeing my onc in a couple of weeks and plan to discuss it then.

Whatever your genetic status, you don't need to decide yet what to do.

Leah

Hi, Sparrow -

You are getting good advice, I think. The important thing to do first is to get the known evil spots out - you can always look into more surgery for possible "prevention" purposes later. A genetic counselor said to me (I had lumpectomy) that the bigger deal if a woman turns out to be BRCA positive after a diagnosis of early stage breast cancer is the OVARIES. There's no way to monitor them, and your risk for ovarian cancer is much higher with either of the BRCA gene mutations. When you have lumpectomy, your breasts are carefully watched for signs of new problems, so you don't necessarily have to rush and have bilateral mastectomies...

I had a single lumpectomy with sentinel node biopsy, and I went home the same day. 30 minutes away - not a huge deal, and it was great to be back home. Although I'd had a motion sickness patch that the anesthesiologist put on due to me mentioning that I sometimes had issues with motion sickness, and this led me to actually FEEL sick later. I read somewhere that people who get motion sickness can often be predisposed to having nausea after anesthesia, and that one should tell the anesthesiologist this. So I did, and she slapped a patch on my neck. Several hours after the surgery, I was feeling pretty good, but my mouth was SO dry - it was driving me nuts! I read through my information about my medications, and it was the patch that was causing the dryness. I had no instructions as to how long to leave it on, so I removed it. And within about 2 hours, I got nauseous - like motion sickness - and it lasted all day. If I had it to do over, I'd either skip the patch to start with, or I'd leave it on for much longer. My point for you is to make sure you know what they're giving you and how long you should take or wear it!

I hope it all goes well and that you will be recovering comfortably at home soon!

Coleen

Janice,

I agree, it sounds like we're all experiencing some of same things around the same timeframes  and can most certainly be of great support to each other.  I'm so sorry that you've gone through so many health problems over the past couple of years and now have to deal with BC.  My surgeon did mention that now that I am stage 1 that I may be eligible for Oncotype DX.  I plan to discuss this with the Oncologist on the 9th.  Prior to my surgery, as a stage 2a, I was told by everyone that I would need chemo as part of my treatment.  So, I've been mentally preparing myself to begin chemo at the end of this month.  Now, with the new developments, I'm not sure what to think.  If I can, I will go through with the Oncotype test and go from there.  My surgeon told me that alot of people end up with scores in the middle of the range and that they really haven't figured out the best way to treat people with mid Oncotype scores.  She told me about a trial that is going on for this purpose only and told me that I might want to consider being part of it if I end up with a middle of the road score.  The trial is called TaylorX.  It randomly assigns people to recieve hormonal therapy alone or chemo and hormonal together.  I'm hoping that mine come back either low or high so that I don't have to make a decision of whether to get chemo or not.  It was hard enough making my surgical decision and I still wonder if it was the right one. 

Tamara,

The surgeon told me that the re-excision will not be as bad.  I did ask her if there was any other anesthesia that could be given to me.  She said that they may be able to do a twilight sleep with lots of localization to the breast.  So, I guess that I show up tomorrow and see what they plan to do for me.  I tend to have motion sickness and have been told that this is why I have a harder time with anesthesia.  They did give me things to counteract all of that but as with Kleenex, it didn't work.   UUHHHGGG!

By the way, I didn't mean to overlook your comment about your mom being in stage 4.  I can't imagine how difficult that it must be to have all of these things happening at once.  How is your mom doing?  My mom just went through testing to find out why her blood counts are all wacked out. They were testing her for lymphoma or luekemia.  The tests and scans came back negative last week so they are still trying to figure out what is wrong with her.  It's very stressful.  My heart goes out to you - it's so hard to deal with our own cancer diagnosis and then to have a mom fighting cancer at the same time seems unbearable.  My prayers are with you. 

Linda, boy your family has gone through the ringer with cancer.  It sounds like you've made some good decisions on how to deal with your positive BRCA results.  Many blessings to you and I hope that your brother and sister remain disease free! 

Hi ladies,

Surgery went well.  They gave me a different cocktail and it made a huge difference.  I am, however, in more pain now than I was last week.  I don't get it.  Anyway, I also got some "other" news from my surgeon yesterday.  Apparently, I am moved back to stage 2a.  Pathology actually found that I had two tumors and only listed the largest of the two in my path report (1.3 cm).  The other one was < 1 cm.  The two apparently were joined by a "thread" and so now they are calling them one.  The size of the tumor has put me back to 2a.  Well at least I enjoyed being a stage 1 for a week.  Honestly.  I'll meet with the onco next week and see what he has to say.  I'm probably going to need chemo for sure now. 

Tamara,

Your mom sounds like a rock star.  Don't feel like a whining baby.  You caught your cancer early but you still have cancer.  And, CANCER SUCKS!  By the way - no cute shoes in surgery

Lisa

Hi Friends!  We spent a lovely, relaxing, quiet weekend up at our cottage..warm, sunny, perfect way to spend some time!

Okay, where to start?  Lisa, because I switched Dr.'s in mid-stream, we're not 100% sure what I am, so they're staging me on the mastectomy findings only, but my Dr. (who was pretty irate) said it was an impossibility that I didn't have invasive cancer on the wide exc. biopsy, and absolute impossibility..so I may be in the same boat as you, I just don't know it!!!  I'm glad you came through the surgery okay though; my core biopsy hurt much worse than my WEB, very little to no pain at all with that (for a change!)

Tamara, I can relate, my mother had a heart attack..we found out 3 years later!  I don't know what it is about them, but they like to keep these things to themselves.  The BC, though, I was in high school when she was diagnosed, no keeping that one quiet!  Make sure you tell us right away about your score!  I'm out of town that day for a meeting, but I'll hop on line as soon as I get home!!  XXXX (fingers crossed for a low score!!)

Coleen, I've heard the same, so they're going to have me have MRI's with US on my left breast from now on; my mammo showed almost nothing and here I sit 4 months later with a mastectomy..go figure!!  My Dr. said the US will help alleviate the false positives you get with the MRI's, but will give us the heads up we're going to need from here on out.

We saw my PS on Thursday, he's more optimistic; the tissue looks better, but he still took out another 150 cc's of saline from the tissue expander and kept the drain in too.  I go back on Tuesday; he said that there is still a chance that he'll have to remove the TE. but it does look better.

I got a call Thursday evening from Genomic Health; They received the tissue sample that day, they've spoken with my insurance company and everything is a go; results should be back to my oncologist in two weeks.

My onco did talk to me about the TAILORx and I'm looking into it, everything about this has gone against conventional wisdom, so I'm expecting either an intermediate score or a high score.  If it's an intermediate score, I will go into the trial; if it's high, I have options; I may have an axillary node dissection; if they're clear, then aromatase inhibitor may be fine..I guess we'llhave to see!

I'm sure I'll be talking with you when the time comes!

Janice

Janice,

I'm so glad that you had such a wonderful weekend.  We had wonderful weather here in Wisconsin too.  I was able to get out an enjoy the mild weather and sunshine which improved my spirits.  Keep us up to date on TAYLORx.  They mentioned that to me as well when they thought that I was stage 1.  I'm not sure if it's off the table or not but will find out today.  I just want to get going with something.  I feel like I'm a ticking time bomb.  I found out that I had cancer on July 7/22/09,  I didn't have surgery until 8/26 and then again on 9/4.  So, here I am, 6 weeks out and I'm still unsure of what's going to happen next.  I guess that I'll find out more today.  However, I don't even think that an Oncotype test has been ordered for me yet.  If I have to wait another 2-3 weeks to find out my score, I'm going to go out of my mind.  I'm sorry about your bad experience with the TE.  I can't imagine how uncomfortable that must be. 

Tamara,

Great news on the clear margins.  I'm crossing my fingers for you that you won't have to do chemo.  I too have long hair (not as long as yours) and I love it.  I would rather have another surgery than lose my hair. I know that this sounds very vain and stupid, but, I'm just being honest.  I know that once I start chemo that I will look and feel like a cancer patient and I don't want to go there.  However, I want to do whatever I can to kill this cancer so I will pull myself up by the boot straps and walk bravely forward into the unknown.  I meet with the Oncologist today so hopefully I'm one step closer to getting on with adjuvant therapy - whatever it will be. 

Why do they think that you are having this fluid build-up under your arm?  I'm glad that they were able to drain it to give you relief.  Glad also to  hear that your mom is in good spirits - God Bless all of us.  We are all rock stars!  There are no greater heros than those fighting diseases like BC.

Lisa