BRCA

[cmd2014]

I would get tested. I would want to know. With BRCA prophylactic bilateral mastectomy and oophorectomy significantly reduces risk, and having lost a good friend to ovarian cancer (who incidentally was BRCA positive), compared to that, so long as you've had any children that you might want to have, the prophylactic surgery seems like a pretty good trade-off. I also have a friend who has Lynch syndrome which puts her at abnormally high risk for endometrial, breast, and colorectal cancer. She elected to have prophylactic hysterectomy/oophorectomy and bilateral mastectomy, and has said that if she could remove her intestinal tract she'd do that too (she lost her mom to an aggressive form of endometrial cancer and her father is being treated for colorectal cancer - and if you watch someone have to go through that, again, the prophylactic surgeries don't seem so bad).

So I agree that the choices are: get tested, be positive, decide how best to manage the risk. Get tested, be negative, not have to worry, and avoid unnecessary medical testing. Or don't get tested, worry a lot anyway, and maybe not manage risk in the same way that you would if you knew (and I mean *knew*) that you were at risk.

But I also know that people cope differently with things, so no-one has a right to have an opinion about how you cope with your stuff.

 

[t-c]

In the case of Triple Negative Breast Cancer, even a “Stage I” cancer can metastasize, because it apparently behaves differently (cancer cells circulate through the bloodstream and the lymph/lymph nodes). So for those with a BRCA mutation, prophylactic mastectomy to avoid a TNBC makes a huge amount of sense to me. For most types of breast cancer, catching it early through screening carries a good prognosis. For TNBC, just waiting for your body to “get it” is very very risky.

Any Stage 1 cancer CAN metastasize — it can contain disorganized tumor cells (high tumor grade) that was luckily found before it spread — but by definition, Stage 1 cancer are usually detected in a confined area.

The “triple-negative” in Triple Negative Breast Cancer refers to the lack of estrogen receptor (ER), progesterone receptor (PR), and hormone epidermal growth factor receptor 2 (HER-2) used to characterize tumors. Unfortunately for TNBC, the common treatments (such as Herceptin) target these receptors, so therapies are limited to classic chemo (and/or surgery and/or radiation).

I want to make clear that I am not advocating for any specific response. It’s a personal decision and frankly, it’s none of my business what anyone else does with their body. All I want is to make sure people are presented with all options as they try to make a decision that’s best for them.

 

[Jambalaya]

Soo...update on this...I get my test results in a couple of weeks. Still not ready, but the truth is that I'll never be ready to hear that a test like this is positive (if it is).

Having uncovered the 5-generation family history, the not knowing was driving me nuts. And it's not as if I haven't had strong suspicions for years, anyway. I was a teenager when my grandmother was diagnosed and a very young adult when my mother was diagnosed.

In the summer, a close female relative is also getting tested, so our tests will be informative for each other.

Getting this test is the bravest thing I've done in ages.

Some people are truly sang-froid about this kind of thing, able to calmly reflect that knowledge is power, and that it's good to know where you stand. They don't worry about anything until there's a reason to worry.

I really wish I could be more like that!

 

[Jambalaya]

Phanie, have you been able to get the test?

 

[Jambalaya]

And I still have nothing to do with the relative who told me to "move on from this idea of cancer" after I told her my discovery that relatives going back many generations in the same line had the disease.

 

[junebug17]

Sorry you're dealing with this Jambalaya, and sending comfort and support to you as you wait this out, it's tough. (((Hugs)))

 

[Jambalaya]

Thanks, Junebug. I had to wait six months to get an appt. I honestly think the run-up is the worst. It's cruel having to wait so long. I was an absolute wreck in the 2-3 weeks before, and then the anxiety just kind of peaked and reached a crescendo, until I got tired of being so scared. I think it blew itself out to toe degree. But I think the wait has put five years on me!

It's not right that people have to wait so long for such worrying tests.

 

[tyty333]

You are in my thoughts...I tend to be one of "those people" who does not worry about things until something is confirmed however, I had a small
breast scare about a month ago that kept me up at night. I was really caught off guard by the "worrying" which ended up being for naught. Just
wanted to say "I get it now" and how unsettling the worrying can be.

I absolutely agree that its not fair to make people wait so long for this kind of test.

 

[Bonfire]

Hang in there. I know how worried you must be. I’m a worrier by nature, but I’ve had to deal with my own DCIS diagnosis and treatment so I know where you’re coming from. You are being proactive which is great! That’s all you can do in the short term. I find it helpful/comforting to have a contingency plan for all scenarios, I guess that’s my way of trying to control things. Keep the dialogue going here, we’ll support you in anyway we can.

 

[Jambalaya]

Thanks, tyty and Bonfire. Having breast cancer in five generations plus other BRCA cancers too, I kind of feel that my options were to wait to be blindsided or have the test and get the shock that way. Of course, there's a 50% chance I don't have it, but if I do, I think the lesser of the two evils is to get the news before anything has happened. Even though nobody likes to think that they have a gene mutation.

Thanks again xxx

 

[Tekate]

Jambalaya: you are a class act.. all the way. I have been reading your posts for almost 4 years now, I love your jewelry and I think you are strong.

I am so sorry you have to go thru this I am sorry you had to wait so long and I send you strength - woman to woman.. I hope you continue to post. I stand with you. As to your idiot of a family member, glad you are still not speaking.. she was just plain rude.

all love coming your way.

 

[Jambalaya]

Aw, Tekate, that's so nice. Thank you. I will go to bed happy tonight!

 

[missy]

Dear @Jambalaya, I am so sorry for what you are going through and sending you buckets of good luck dust.
(((Hugs))).

 

[Jambalaya]

Thank you Missy! That's very sweet of you.

I think the build-up to the test was the worst. Six months! After having it, I didn't feel so bad. I mean, even without the test, I'm pretty worried due to my extensive family history of BRCA cancers. If it's positive, I don't think I could be more worried than I already am, anyway!!