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Would you want to know your cancer risk level?

Would you want to know your cancer risk level?

  • Yes

    Votes: 39 70.9%

  • No

    Votes: 16 29.1%
  • Total voters
    55
M

MRBXXXFVVS1

Brilliant_Rock
Joined
Dec 5, 2019
Messages
1,450
Would you want to know your cancer risk level?

www.invitae.com

Genetic testing for cancer gene mutations with Invitae

Invitae's genetic testing for hereditary cancer genes may help guide you and your doctor to effective management, adding another tool in your cancer fight.
www.invitae.com www.invitae.com

The benefit is being able to take preventative action and early diagnosis to optimize outcome. The downside is anxiety, possible false positive and unnecessary procedures and treatment. I'm sure it's far more complicated than those pros and cons.
 
Usually, I want to know everything and believe in the "knowledge is power" sentiment, but I do tend to be a bit
of a worrywart. I'm going to say Yes, I would want to know. I'm sure I'd come to terms with the answer given time.
 
No way. This is how the insurance companies will get to diagnose you as "pre-cancer" and raise your rates.
It's not about helping people, it's about making money.
 
No, I’d rather just keep living without that knowledge. I am not a fan of any medical interventions, so going through testing and potential treatments doesn’t sound like living to me.
 
Actually I already did a DNA test that checked for some known cancer marker genes. Thankfully for me nothing concerning, but I would prefer to know so that I can actively manage the risk, or at least screen more often.

Did this one:
circledna.com

CircleDNA I World's Most Comprehensive DNA Test

The future of health is prevention. Simple, Accurate, Affordable. Discover 500+ valuable health reports. Free shipping to 88 countries worldwide.
circledna.com circledna.com
 
I was diagnosed with breast cancer and in order to help me decide what path of treatment/surgery I would pursue, I a) made them do a PET scan and b) did genetic testing. Thankfully, I didn’t have the BRCA gene mutation, but they only test for certain (most common (or ones they know about)) mutations, not every possible mutation.

Invitae, the company in the article, is the company that did my testing.
 
I had to think about it for a bit before answering. Yes..I already know I have a risk for
certain cancers..I went early for regular screenings..and found some things could
have turned into cancer. I also had melanoma..borderline stage 3 by two top docs..no lymph node involvement so a level 2. It was close they said. I got a third opinion
after sending my chart..They said it could be radial growth phase..so much better outlook than the above. I had them treat it surgically like a stage 3. I have a risk of getting another one..so knowing my risk I get regular screenings. If I knew I had a cancer risk
for another cancer I would be vigilant with that particular one too. Knowledge is power IMHO.
 
I have had extensive testing for breast cancer genes due to an extensive family history of young breast and pancreatic cancer whose patterns are strongly suggestive of BRCA2. The company who did mine was Gene DX, and the panel covered about 25-30 genes that are known to raise the risk of breast/pancreatic cancer.

It's a very personal decision whether to test or not, and it can be dependent on other factors which are personal to you. For example, I have an insanely high level of breast density - the type that does not lessen after menopause. This means that mammograms are useless for me in spotting tumors. (My mother was the same and they couldn't see her 1.5 inch tumor on a mammogram even when they knew where it was.) So the density was a reason to get the tests in order to inform a decision about surgery, since I couldn't rely on mammos to spot anything.

You also have to understand what the answers will give you. If a mutation has already been found in a cancer-affected relative, then you know what you're looking for. So, if your relative has mutation XYZABC and you test negative for that mutation, you are a "true negative."

On the other hand, if your latest relative with cancer was never tested, and you come out negative (which is my situation), you have no way of knowing if your relative had a known mutation and you escaped it, or if they also would have tested negative despite the cancer history. For breast cancer, 75% of families with a strong history of breast cancer test negative for all known mutations. Therefore, we think there are more mutations out there which are undiscovered.

If you haven't yet identified a mutation in your family, and the tests come out negative, you are what's referred to as an "uninformed negative." That is, you don't know if your family has a mutation and you got lucky, or if you do have it and it's not showing because science doesn't know about it yet. This is my situation.

Although the tests didn't give me all the answers, it did inform my surgical decision. Since we haven't found the family mutation yet, there's no way to know if I inherited it. I can get tested again in ten years, when more mutations have been found. Now, imagine if I had a double mastectomy, a mutation was found in the family a few years from now, and I don't have it. I'd have put myself through all that for nothing.

The tests therefore led me to the sensible decision to get annual breast MRIs instead of surgery.

Hopefully this story illuminates how complicated these tests can be and how other factors which are very personal to you can come into play.

In order for the tests to be helpful, you have to have a grasp on how they work and what an answer can, or cannot, tell you.

I can say that it was a very stressful process. I had to wait six months for an appointment with a genetic counselor, and that was a real strain. In the few weeks leading up to the appointment, I was so frightened that I almost canceled it. Luckily, I was able to find telephone support from a charity for hereditary breast cancer. A mentor with BRCA1 reached out to me, thank god. (As you can see, it's so complex that discussing it with friends wasn't really helpful because, understandably, they didn't get all the nuances of the situation.) The waiting also was not fun. It's one thing to suspect a mutation, but quite another to have it confirmed. But I knew that I had to know so I could take appropriate steps, whatever they may have been.

It was a hard process and you have to know what you're getting into, and have some idea of the practical actions available to you whatever the outcome of the tests.
 
I have a lot of cancer in my family on both sides. Because they are all different cancers, the various doctors through my life have never felt that it warranted looking earlier or more carefully for me. Only one doctor even bothered to have it recorded as family history because the "closest relatives" were all four of my grandparents and not the sort or age they would worry about. When I went to the hospital after losing vision in one eye (my first symptom of MS), the doctor there told me it was almost certainly cancer tumors in my brain. She didn't know my family history. I was not surprised. It was more a feeling of resignation. I always knew I would get cancer so here it is. DH and I have talked about what I would want in event of different cancer diagnosis so we both just sat together knowing what questions I wanted answered and what decisions would come depending on those answers.

If there was a way to know more about the genetics and identity wether I do have a higher genetic risk or not, it might help me feel less certain I will get it at some point. That would be nice. I have not gotten any of the testing done yet as I feel like the current tests still leave too much unknown. I don't want to get complacent or give a Dr (or insurance company) anything to point at to deny further looking.
 
About health insurance, I thought they liked you to have the tests so that they're less likely to have to pay for extensive cancer treatment. For example, if the results qualify you for MRIs, getting those and catching anything early is much cheaper for them than treating a cancer when it's more advanced.

My doctor said that they "roll out the red carpet" for BRCA positive patients who want to do preventive surgery. I'm guessing that that is also cheaper than treating cancer due to the fact that prophylactic action doesn't involve expensive chemo drugs and the amount of expensive scans that cancer patients need. Plus all the appointments to deal with the side effects of the treatment. I can only speak for BRCA stuff, but since those mutations make you so much more likely to get cancer than people without them, I think they see preventive tests and action as the most cost-effective way to manage the situation.
 
Nope, as I could die of a freak accident any time. Hence I prefer to live life to the full while I still can.

DK :))
 
Yes I would get tested, I haven’t but would like to.

I also think there’s a responsibility to understand what you might be passing onto children or to prepare spouses, but that’s my opinion to please don’t take it as judgment.

My opinion is based on an extreme case - a very rare and debilitating neurodegenerative disease runs in my family called Huntington’s.

For example, one of my great aunts is a carrier (she had children before testing was available) and it’s 50/50 whether she passed it onto her children. Some of her children decided not to get tested and had children knowing the risks. I wouldn’t wish that hell on anyone and would’ve gotten my tubes tied if I was a carrier.

Especially if you know if rare, or difficult to treat / dangerous forms of cancer run in the family, I think it’s worth knowing, not just for you.
 
Jambalaya said:
About health insurance, I thought they liked you to have the tests so that they're less likely to have to pay for extensive cancer treatment. For example, if the results qualify you for MRIs, getting those and catching anything early is much cheaper for them than treating a cancer when it's more advanced.

My doctor said that they "roll out the red carpet" for BRCA positive patients who want to do preventive surgery. I'm guessing that that is also cheaper than treating cancer due to the fact that prophylactic action doesn't involve expensive chemo drugs and the amount of expensive scans that cancer patients need. Plus all the appointments to deal with the side effects of the treatment. I can only speak for BRCA stuff, but since those mutations make you so much more likely to get cancer than people without them, I think they see preventive tests and action as the most cost-effective way to manage the situation.
Click to expand...

My worry would be them denying that MRI or mammogram or CT scan or whatever else because the markers (that they know of) came back negative.
 
^^Mine came back negative, but I'm still allowed the MRIs because of the family history and my crazy-high breast density, rendering mammos useless. I think test results are only one part of the picture. But yes, you have to think through the consequences of all the possible results you could get - and a big one is whether there's any action you can take if the results are positive. If the test was for something that I could not do anything about if positive, I don't think I would have it. (The kids issue might change that.)
 
Nope, When your time is up there's nothing you can do about it.
 
^^ That's just not true. For people with mutations that confer an enormous cancer risk, genetic testing gives them a chance to take preventive action, such as more frequent screening. This can lead to diagnosis at an early stage when the cancer is much more survivable and when treatment is less invasive. Actions taken due to the results of genetic tests can mean the difference between a slight brush with cancer, and death.
 
Aside from the healthcare apparatus implications I’d say yes. Like @MamaBee I know I am at higher risk for certain things already and take precautionary screenings accordingly. I appreciate that information so I can be proactive about my health. Also, as a parent I am always concerned about any genetic implications for my kids’ health; for me knowledge is power.
 
Yes, but only if I could do something about it. Otherwise no.

Knowledge is power if I can take measures to lessen my risk. Otherwise I would just be worried and anxious about it without being able to do anything to change the odds and that would not be worth it to me.
 
stracci2000 said:
No way. This is how the insurance companies will get to diagnose you as "pre-cancer" and raise your rates.
It's not about helping people, it's about making money.
Click to expand...

What boggles my mind is my health insurance is allowed to deny a med I have been taking for decades and they get away with it. They did that to two of the meds I have been taking for over 16 years. It had been approved all this time and then suddenly it is no longer approved. Appeals denied. All of them. How is this legal? Pisses the he** out of me that they can do this. Physicians should be able to prescribe what is best for their patients and it should have nothing to do with the insurance company. IMO.
 
Just read the dreadful news about the collapse of a tower block in Miami in the middle of the night while the residents were asleep with no warning (R.I.P. to those who died). :(

It reaffirmed my belief that I could die of a freak accident any time, and the need to make the most of every waking moment while I am still alive.

DK :))
 
I've had it twice and drs and I have a pretty decent idea of my future chances. However its likely it will be the thing that kills me if I don't die in a freak accident.
 
missy said:
What boggles my mind is my health insurance is allowed to deny a med I have been taking for decades and they get away with it. They did that to two of the meds I have been taking for over 16 years. It had been approved all this time and then suddenly it is no longer approved. Appeals denied. All of them. How is this legal? Pisses the he** out of me that they can do this. Physicians should be able to prescribe what is best for their patients and it should have nothing to do with the insurance company. IMO.
Click to expand...

Insurance used to cover most everything.
Remember going to the doctor or dentist and owing nothing?
Now the dreaded bill shows up in the mail stating what they want from you.
And now we have to worry about calling our insurance and clearing any small procedure with them that might not be covered!!

At the dentist, they pull up a screen showing what they want to do and how much it will cost. You have the option of saying "no", and then they make you sign a paper saying that you refused certain procedures!
And now they say I am a periodontal patient and they have to do the 'special' $60 cleaning.

At the eye doc, regular check up used to be $10 co-pay.
Now they want $70, because I wear contacts.

If it wasn't for the fact that they take money out of my paycheck to pay these people, I would probably never go for a check-up ever again.
 
dk168 said:
Just read the dreadful news about the collapse of a tower block in Miami in the middle of the night while the residents were asleep with no warning (R.I.P. to those who died). :(

It reaffirmed my belief that I could die of a freak accident any time, and the need to make the most of every waking moment while I am still alive.

DK :))
Click to expand...

@dk168 I feel I can do both. I live my life with an appreciation because I’ve been close a few times to the possibility of dying. I wake up every morning grateful…I still feel I can do the testing to try to catch something that can take away my life. Doing the testing wouldn’t keep me from enjoying the life I have..It may give me more time to enjoy it. The freak accident can happen at any time but I wouldn’t let it shape how I feel about testing for cancers.
 
I already know that will probably be my fate as I have too much of it in my family.
Mother: Colon, Breast, Liver (killed her)
Father: Skin (spot on his face)
Grandmother: Breast
Half-Sister: Skin (spot on her face)
Myself: Found pre-cancerous cells on cervix and had a CKC to remove them
 
I know cancer is very complicated, but I'm a little surprised there hasn't been more advancement in treatments and cures for it given how many people are affected.
 
Targeted genetic testing for specific types of cancer? Sure. For example, in certain types of endocrine cancers there can be a hereditary syndrome associated and proactive screening can be helpful in identifying and treating associated cancers, some of which can be very aggressive (multiple endocrine neoplasia). And knowing that you have a BRCA mutation can be very empowering in getting early screening, treatment and timely surgical care. If something runs in the family it's also helpful to know if you will pass it on and your kids should be aware. Agree though that this should NOT be something insurance companies should be allowed to use to deny care/coverage. I take it from the "knowledge is power" angle and would rather know especially as there may be something proactive to do about it.
 
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