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Topic: Genetic counseling/testing after BC surgery?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 20, 2008 03:42PM - edited Mar 9, 2008 05:25PM by otter

otter wrote:

Hi, all--

I am in my mid-50's and was dx with IDC last week based on a core biopsy.  None of my 1st-degree relatives has had BC.  My GM had BC pre-menopause and survived, dying of something unrelated decades later. Her niece died of metastatic BC.  Two of my mom's brothers have had prostate cancer.

Based on that family hx, my oncologist referred me for genetic counseling and probably genetic testing at a major medical center. Counseling always precedes testing at this place.

The trouble is, I have to make a decision about lumpectomy/irradiation versus mastectomy for my IDC within the next 2 wks, and the appt for counseling isn't for another 2 months.

It seems to me that genetic counseling/testing would be a lot more useful if it came before my surgery.  Knowing whether I was BRCA+ would push me toward mastectomy of the "bad" breast. If it doesn't come until after the surgery, all the test result would do is provide a warning that I need to be more diligent about detecting lumps etc.  There's no doubt I'll be doing that anyway, considering that I already have BC.

Or am I missing something in all this?

otter 

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 20, 2008 05:14PM Beesie wrote:

No you're not missing anything. 

I had my counselling appointment and testing after my surgery but in my case that was okay because I needed to have a mastectomy anyway.  I suppose that if I tested positive (fortunately, I didn't), I might have wanted to have both breasts removed at once but in truth I probably would have appreciated having time to make that decision.  So for me, there wasn't an immediate decision that was hanging in the balance.  If there had been, I know that my appointment would have been squeezed in earlier. 

In your case, you have a treatment decision ahead of you that most certainly could change if you test positive.  For that reason, the clinic should be prioritizing you ahead of other patients who don't have the same urgency.  Can you get one of your doctors - your surgeon or your oncologist - to call them to put some pressure on?   Or is there another facility that you can go to where you can get in sooner?  To me, with the decisions that you face, it's unacceptable that this information should be delayed until it's too late to impact your surgery. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 20, 2008 06:38PM - edited Sep 6, 2010 06:19PM by yellowrose

This Post was deleted by yellowrose.
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived though this horror. I can take the next thing that comes along.' Eleanor Roosevelt
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Jan 20, 2008 09:50PM LoriFL wrote:

I think most onc surgeons allow a 6 week window from day of knowing you have BC til the surgery date. I wouldn't wait any longer because your mind will start playing games with you!

I had my genetic testing done at the gyn onc but they still had to send it to a lab in Calif. They said it will take 3 weeks to get the results back.

Good luck with your decsion!

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Jan 21, 2008 11:30AM otter wrote:

Thanks, everybody.  I've pretty much decided not to worry about the timing of the genetic counseling/testing.  If they're so busy with more important things and they can't fit me in earlier, so be it.  If I were being treated at our regular regional hospital, I doubt I'd even have been offered genetic testing, much less counseling.

I'll decide on Mx vs. Lx/rads based on other factors, like my upcoming MRI.  Then, if the counselor does calculate my risk to be high when I meet with him/her in March, and/or the BRCA does come back positive, I'll deal with that then.

As for the 6-week window between dx and tx, ... I wish.  Technically, my dx was made when I had that breast biopsy last Monday.  I have no reason to think that I won't be having surgery in the next couple of weeks.  (Gad, that's the first time I've actually written that down, and my heart rate doubled!)  So I'm within the 6-wk window in that regard...but my lump has been there a lot longer than 6 wks already.  Oh well.  Water under the bridge.

otter

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-

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