Genetic Testing Required for Surgery

[ridleysw]

My question: Have any of you been required to obtain genetic counseling before surgery?

My consultation (DI w/ grafts) was in September.  During the consult, I asked about genetic testing for BRCA because there's cancer in my family (my mom died from lymphoma, maternal aunt had breast cancer).  The doctor looked over the history and told me she thought my risk was borderline - not enough key people and diagnoses to classify me in the "high risk" category that merits testing, but enough to not rule it out if I were interested.  She offered to connect me with the hospital's genetic testing department if I were interested in having it done before surgery.  After talking it over with my therapist, I decided not to get the testing.

A week ago, I finally got my surgery date.  February 4th.  After so much waiting (including the one year on T rule from insurance and then waiting for the consult which was several additional months), I was so ecstatic.  All the hoops and steps were done.  I had my date.  I was just waiting to hear whether they were going to have me get a mammogram before the surgery.  Easy.

But then the surgeon's office called.  The doctor is requesting I go see the genetic counselor before my surgery.  IF the genetics counselor determines that I "should" get the test, my surgeon wants to postpone my surgery until we find out whether I have the gene so they can schedule my surgery to include an oncology surgeon to take out absolutely all of the breast tissue.  Testing requires 8-10 weeks between insurance pre-authorization (2 weeks), test taking, and the results getting to the doctor (4-8 weeks).

I would have jumped through this hoop in September had they asked and required it for surgery.  That is why I asked - I was curious if I should.  Now, my surgery date is in jeopardy because of this new hoop.

My appointment with the geneticist is Thursday.  I have plead my case to the surgeon's office, and am waiting to hear back (they told me Tuesday because of the holiday weekend).  I am asking that they move forward with the surgery, as planned, after I get the test and as we wait for the results.  I've offered to sign whatever form they need me to sign to accept the risk that, should I have the gene, I went against medical advice to remove extra tissue.

Has anyone been required to get genetic testing for surgery?  And did the surgeon require the results before operating?

[Alexthecat]

I looked into that test but I never asked the surgeon. I hear the test alone is like $500. I opted for a pathology during surgery instead.

[ridleysw]

The doctor already does pathology during surgery for all patients, which we discussed during my consultation.  I am lucky in that my insurance will cover all but $100 of the gene test (assuming they approve the pre-authorization request), but I am also concerned about being flagged as a high-risk patient in my medical records if I do, in fact, have the gene.  Having the GID diagnosis is enough of a concern with insurance.

[FTMax]

My surgeon presented DI to me as a cancer preventative method. She said that during the procedure she'd be taking all breast tissue that had the possibility to be cancerous. So in her procedure, my breast cancer risk dropped to basically nothing. What is your surgeon doing that is different? Why would it matter if you have the gene, if they're just going to remove the tissue anyway?

ACA made it illegal to deny coverage, charge more, or deny treatment based on health status or pre-existing conditions. So I wouldn't worry about the testing flagging you in any way that's going to affect your coverage.

(If this sounds argumentative, I don't mean it to be. Genuinely confused.)

[Bimmer Guy]

My surgeon presented DI to me as a cancer preventative method. She said that during the procedure she'd be taking all breast tissue that had the possibility to be cancerous. So in her procedure, my breast cancer risk dropped to basically nothing. What is your surgeon doing that is different? Why would it matter if you have the gene, if they're just going to remove the tissue anyway?

ACA made it illegal to deny coverage, charge more, or deny treatment based on health status or pre-existing conditions. So I wouldn't worry about the testing flagging you in any way that's going to affect your coverage.

(If this sounds argumentative, I don't mean it to be. Genuinely confused.)

Maybe the surgeon is talking about removing the lymph nodes, like they do in regular mastectomy?

ridleysw, if this is the case, you will have a different looking chest than the regular top surgery.  There will be more removed. 

Max, my understanding is that after top surgery trans men's chances of cancer is the same as natal men, it is not completely gone as the lymphs are not removed as they are in a regular mastectomy.  That is why ours are called subcutaneous mastectomies.  At least, that is my understanding.

[ridleysw]

Exactly what Bimmer Guy said - the surgeon is talking about removing the lymph nodes and all breast tissue to do a more complete mastectomy if I have the gene.  And yes, this definitely means the results will be different.  It also means extra recovery time. 

The lymph system is important, and the idea of compromising it "just in case" so I have less of a risk for breast cancer is bothering me.

I am asking for top surgery, and now the surgeon - after already scheduling me for surgery - is asking me to change it to a prophylactic mastectomy if I have the gene.  I'm 29 years old.  This just doesn't seem right to me.  Even if the test didn't mean delaying surgery several months more, this request is not sitting right.

FTMax - you didn't seem argumentative at all!    I am confused about this, as well.

[FTMax]

Huh! You learn something new everyday. Thanks guys

I would agree with your feelings. It seems excessive this late. Of course, youth doesn't mean anything in terms of cancer, but at the stage in the game that you're at having already scheduled and planned, I feel like an informed consent waiver would be appropriate.

Did they happen to mention if you do have the gene, what the % chance of cancer is with the lymph nodes removed, and with them left intact (just regular top surgery)? I'd be curious to know. That would help me make the decision.

[ridleysw]

I plan to ask about all the risk percentages in my appointment on Thursday, and with the surgeon if she is still going to require the genetic testing before surgery.

[Alexthecat]

When I had my surgery they did not remove all tissue so that they could shape it properly. I will still need mammograms with a wand, I have nothing to fit in the boob squisher. Just thinking out loud here but if you did get cancer down the road would it be as bad? There would not be a big breast in the way or as much tissue to get infected. If they did have to cut it out I can't imagine it being a longer recovery than top surgery.