Would you want to know your cancer risk level?

[lala646]

This is a really timely question for me. I knew my family has survived a random assortment of cancers - Mom had a very rare carcinoid lung tumor (not related to smoking), Dad had prostate cancer (which also killed his father) and melanoma, paternal aunts have had vulvar cancer (yikes), and chronic lymphocytic leukemia. My older sister was recently diagnosed with endometrial cancer, and underwent a full hysterectomy a few weeks ago. Her surgical follow-up is this coming Monday, where she will learn the results of her genetic screening. They've tested her for BRCA, and a gene that brings an increased risk of colon cancer which is somehow more common in patients with endometrial cancer. Her results will very much determine if I need to be tested for the same. Being in her 40's, she's the youngest in our family to receive a cancer diagnosis, and though her prognosis is very good, it's hit us like a ton of bricks.

I intend to be on this earth for as long as possible, and hope to enjoy that time to its fullest. If genetic screening will help me accomplish that, I won't hesitate.

 

[PinkAndBlueBling]

Definitely yes! I prefer to be proactive with my health, rather than reactive. Also, I would want my children to know so that they can take any actions to stay healthy.

 

[MRBXXXFVVS1]

Are insurance companies actually able to deny coverage due to "pre-cancer" diagnosis if you're already insured with them?

 

[Garnetgirl]

I haven't read all the responses, so please excuse me if I repeat something. I voted "no". For many types of cancer, I think that assessing one's risk is done by determining where one 'fits' in a statistical model. So definitely not.
On the other hand if there was a history in my family of a certain cancer that was heritable, if there was a genetic test for it, if early diagnosis with treatment improved survival rates, if there even was a treatment for it, then yes.

 

[Jambalaya]

gene that brings an increased risk of colon cancer which is somehow more common in patients with endometrial cancer.

Is that the MUTYH mutation, Lala? I was positive for that. If she has it, I'm here for you!

 

[missy]

Are insurance companies actually able to deny coverage due to "pre-cancer" diagnosis if you're already insured with them?

I don't know the official answer to this question but I am confident that the unofficial answer is yes. Meaning that no matter what they say their actions speak volumes. One sent supposed to be denies health insurance due to preexisting conditions but it is made economically challenging to obtain coverage for certain diseases one has.

No matter the answer however I still vote yes. If I can do something about it 100% yes. The earlier you diagnose many diseases the better one's prognosis. Why not give yourself every chance for good health?

Also for those who make the argument about destiny and what will be will be I respectfully counter a different point of view. There are certainly things beyond our control but then there are things within our control. The wisdom is to know the difference and take action when you can make a difference.

 

[lala646]

Is that the MUTYH mutation, Lala? I was positive for that. If she has it, I'm here for you!

She's not good on providing me details, so I don't know yet. Good news is her lymph nodes are clean, so they think they got all the cancer during the surgery, but it's already been 4 weeks since the surgery, and the genetic results still aren't available. We're both anxiously waiting.

 

[LilAlex]

Would you want to know your cancer risk level?

Almost none of these things are clinically actionable on any level. That's why your doctor does not tell you to get them -- or do them for you.

A lot has been made of genetic association studies showing a few percent increase in the risk of this or that dreaded disease. Even stupid dietary associations typically have far larger "effect sizes" -- although the risk of confounding is a lot higher there.

EDIT: Oops -- "after a cancer diagnosis" is different. But that is usually genotyping of the tumor and not of the patient.

 

[Jambalaya]

^^ It depends. Certain mutations that sharply raise the risk of many different cancers are very actionable in terms of extra screening and/or prophylactic surgery. Breast, colon, ovarian, endometrial, pancreatic, to name just a few. But a mutation that raises your risk of Huntington's or Alzheimer's, not so much.

I know someone who has one case of breast cancer in their family, and it was post-menopausal. That single case didn't ring any alarm bells. However, her son now has pancreatic cancer, and it turns out they have a BRCA2 mutation. Had the mother been offered genetic testing, he would have had pancreatic-cancer screening, and two little kids would not now be losing their dad. It's situations like this that make some doctors say ALL breast cancer patients should receive genetic screening.

When it comes to many of the cancer mutations, there is a LOT you can do.

 

[voce]

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.

Cancer is, aside from congenital genetic mutations, a disease of aging.

The body is, when young and healthy, a delicate complex balance of processes. Unfortunately, when we age (cells replicate, DNA replicates without repair), processes repairing DNA slow down, and the telomeres protecting our DNA get shorter and shorter. When you have no telomeres left in your DNA is when your body is failing. Cancer can result from mutated or damaged DNA just as it occurs from inherited genes.

Thus, instead of chasing a million different types of cancer resulting from the same cause of damaged DNA, it is my opinion we should just focus on researching the handful of root causes for most cancer cases. Full disclosure: my opinion is influenced in a large part from the ideas of David Sinclair, a Harvard researcher and author of the book Lifespan. In the book he talks about what we can do to help keep ourselves young at the cellular DNA level, not at the muscular level, and prevent disease rather than to treat it.

 

[Mary Queen of Scotch]

Yes. I would implore anyone with a family history of melanoma, breast, ovarian, pancreatic and/or prostate cancers to get BRCA testing if possible (and certainly anyone who has personally had one of those cancers should, IMO).

As I briefly mentioned in another thread, I lost my mom to breast cancer a few months ago. She was only 60 years old, otherwise healthy as a horse, and her disease was treated aggressively from the get — all the way up until the bitter end (her wishes). But it was a bad, bad cancer, and here we are. She’s gone. The world’s a crappier place.

My aunt — my mom’s sister and best friend — also had breast cancer. Twice. This was years before my mom’s diagnosis. It was suggested to my aunt that she get BRCA testing after her second go ‘round, but she chose not to. Her rationale was that she didn’t have any daughters, plus she had shitty insurance and didn’t want to spend many hundreds out of pocket on the testing. (She’s also generally a bit of an ostrich when facing anything that is not strictly sunshine and lollipops.)

If she had made a different choice, she would have learned that she is BRCA positive. My mom would subsequently have been tested years ago and found out the same, and she could have then taken the prophylactic measures necessary to, you know, live. To put it mildly, I resent this aunt for her choice.

My sister and I have since been tested for the BRCA mutation (my baby brother is still in his teens but will eventually get it done, too). I’m negative. My sister is positive. I have a little guilt about my status; my sister has a twinge of anxiety about hers. But neither of us have an inkling of regret about seeking out that knowledge. FWIW, my sister’s results have not affected her health or life insurance premiums, but it has opened up a whole wide world of preventative measures, research/clinical trials, counseling, and other resources and support (she’s in her mid-20s, for reference).

It’s true that nobody gets out of this world alive, as others in the thread have pointed out, but it’s my observation that there are better and worse ways to go. And accepting the inevitability of death doesn’t mean you can’t also want the most (quality) time you can get!

 

[missy]

I am so sorry for your loss @Mary Queen of Scotch

 

[Mary Queen of Scotch]

I am so sorry for your loss @Mary Queen of Scotch

Thanks, Missy. And I hope I didn’t kill the discussion with my drag of a post! Had a little too much wine with dinner last night, which apparently turned me both maudlin AND preachy. What a delightful combination...

 

[missy]

Thanks, Missy. And I hope I didn’t kill the discussion with my drag of a post! Had a little too much wine with dinner last night, which apparently turned me both maudlin AND preachy. What a delightful combination...

Not at all Mary. Please always feel free to share your thoughts and how you are feeling here. PS is a very supportive place to be and not only for admiring and sharing and enjoying bling. I have made some special friendships here for life and I treasure the jewel that is PS for that reason.

 

[Mary Queen of Scotch]

Not at all Mary. Please always feel free to share your thoughts and how you are feeling here. PS is a very supportive place to be and not only for admiring and sharing and enjoying bling. I have made some special friendships here for life and I treasure the jewel that is PS for that reason.

Looks like the effects of last night’s Chardonnay have yet to wear off — your reply just made me tear up! Thank you again for your kind words. I have only been on PS for a very short time, but it doesn’t take long to see how special this community truly is!

 

[Bonfire]

@Mary Queen of Scotch
Please accept my sincere condolences on the loss of your beloved mom. Thank you for your heartfelt and powerful post, your mom was a warroir. All the best to you and your family.

 

[Jambalaya]

@Mary Queen of Scotch, I am so sorry for your loss. That is a tough pill to swallow, especially with the mutation history in your family.

I lost my mom to breast cancer, too, a few years ago. It will get better, you know. It takes time - a lot of time - and although you never stop missing them and you never forget them, it does become much easier to bear.

I'm very glad that you are negative, and I'm so glad that your sister is forewarned. Forewarned is forearmed. And there are great advances happening now in gene editing, which one day should be able to fix these mutations. They're coding errors in our DNA, and can theoretically be edited like you'd edit a spelling mistake in a Word document. It's named CRISPR, and it's thought to hold a lot of promise. Your sister is still very young, so hopefully she might be able to benefit from gene editing one day.

I understand your feelings about your aunt. My dad's side needs to get tested for similar reasons, and they won't. It is SO frustrating.

I'm so sorry you have to deal with this whole BRCA thing. The strain these mutations can cause is huge.

Hugs,

J.

 

[Jambalaya]

@Mary Queen of Scotch - your sister might already know about this, but there's a great organization for people who have hereditary breast cancer in their families and/or BRCA mutations. They offer many resources, information, and also telephone counseling from people who have the same or similar mutations to you, and it's free. It's named FORCE - Facing Our Risk of Cancer Empowered.

https://www.facingourrisk.org

 

[Kaycee2018]

I am so sorry for everyone's losses. I know first hand the pain of caring for and loosing loved ones to cancer. Most recently, I lost my mother (12 years ago), father and very close uncle (11 years ago), and a very close aunt (9 years ago). All cancer. I does get easier, but it is never the same.

This topic really hits home with me, particularly now. I have a long, torrid family history of cancer. Both sides. Every blood relative for as far back as I have knowledge has died from cancer of various sorts (with the exception of those who died from tragic accidents like drowning, etc.). Every. Single. One. Most in their sixties, none past 72. Parents, grandparents, aunts, uncles. Breast, pancreatic, colon, esophageal, lung, etc., etc. The list goes on and on. Despite all the concerns about being denied insurance coverage, paying higher premiums based on the results, etc., I consulted with a geneticist back when genetic testing was first generally offered to the public, but insurance was very iffy on paying for it. After going through the flow charts based on my lifestyle, family history, etc., the genetic counselor surmised that it was not likely my insurance would cover it because most of family's history was considered "environmental" based on the types of cancers, their lifestyles (smokers), etc., so I didn't get tested.

Time went on, more family died from or were diagnosed with cancer, and genetic testing advances were made, but I never went back for another consult. I felt that regardless of the results, I would always feel at higher risk since the testing is only as good as the medical technology at the time. Plus, being "young" and living a healthy lifestyle (nearly a lifelong vegetarian, avid gym nut, always a healthy weight, and on top of all my screenings), I held out a glimmer of hope that the geneticist was right...that it was more environmental vs. genetic, and the cancer stopped with my parents. I was wrong. I was diagnosed with breast cancer last month, at 46 years old. Fortunately, thanks to regular screenings, it is small and early. I am a candidate for lumpectomy, but I've elected to go with a more drastic treatment. My labs were just sent off for genetic testing (results can take weeks). Even if the results don't reveal a anything (again, the testing is only as good as the technology), I am 100% certain there is a genetic link and no one will ever be able to convince me otherwise.

Had I done genetic testing all those years ago or subsequently as advances were made in the testing, it's hard to say if I would have done anything prophylactically based on the results. Even with my diagnosis, making the decision to go with a far more drastic treatment plan than "needed" has not been an easy one. But I am finally at peace with my decision and looking forward to getting this cancer out!

 

[Jambalaya]

@Kaycee2018, I'm so sorry that you are going through this. Big cyber-hugs to you ((((Kaycee)))

If you don't already know about it, there is a wonderful resource: https://www.breastcancer.org. It's reputable and is often recommended by onologists. It's run by oncologists, including one who has had breast cancer herself, Dr. Marisa Weisz.

In the discussion forums (click on "Our Community" in the top right of the home page), you'll find sections and threads for every kind of breast-cancer situation by age, cancer grade and stage, threads for people undergoing surgery, different types of chemo, plus threads about how to manage the social and emotional sides of breast cancer, and threads for when treatment is over about moving beyond cancer. There are also threads about genetic testing. The community is very supportive and helpful, and there are many posters who have been through it and help new people along.

There is also an organization which offers one-on-one mentor support. It's entitled Imerman Angels. https://imermanangels.org.

I'm not sure where you are located, but there's an organization which offers some free housecleaning for people going through treatment - although it's location-dependent, I believe. It's named Cleaning For A Reason. https://cleaningforareason.org.

More hugs xxxx

P.S. Some areas offer free transportation to appointments and/or free parking validation. Parking can really add up during treatment because the appointments can be long. Many towns/cities offer various discounts and benefits for people going through treatment, so it's always worth googling to see what, if anything, is available in your area.

 

[Kaycee2018]

@Kaycee2018, I'm so sorry that you are going through this. Big cyber-hugs to you ((((Kaycee)))

If you don't already know about it, there is a wonderful resource: https://www.breastcancer.org. It's reputable and is often recommended by onologists. It's run by oncologists, including one who has had breast cancer herself, Dr. Marisa Weisz.

In the discussion forums (click on "Our Community" in the top right of the home page), you'll find sections and threads for every kind of breast-cancer situation by age, cancer grade and stage, threads for people undergoing surgery, different types of chemo, plus threads about how to manage the social and emotional sides of breast cancer, and threads for when treatment is over about moving beyond cancer. There are also threads about genetic testing. The community is very supportive and helpful, and there are many posters who have been through it and help new people along.

There is also an organization which offers one-on-one mentor support. It's entitled Imerman Angels. https://imermanangels.org.

I'm not sure where you are located, but there's an organization which offers some free housecleaning for people going through treatment - although it's location-dependent, I believe. It's named Cleaning For A Reason. https://cleaningforareason.org.

More hugs xxxx

P.S. Some areas offer free transportation to appointments and/or free parking validation. Parking can really add up during treatment because the appointments can be long. Many towns/cities offer various discounts and benefits for people going through treatment, so it's always worth googling to see what, if anything, is available in your area.

Thanks so much for all the useful information! Very thoughtful of you to put all that together. I was aware of the breastcancer.org forum. I've been checking out some posts over there, but haven't joined. Seems like a very helpful community. Fortunately or unfortunately, I was my mom's caregiver during her breast cancer journey, so I am pretty familiar with "process". Sadly, not much has changed in terms of treatment options since then. My surgeon is actually the same surgeon who performed my mother's mastectomy all those years ago (and more recently, my mother-in-laws lumpectomy). I am glad to see there are so many more resources available now. At the moment, I am focusing on getting through the surgery part of it. One step at a time. Though I am very curious what the genetic test results reveal, especially now that they are linking other genes besides BRCA to various cancers. I always assumed I'd get a cancer diagnosis at some point in my life, I just didn't expect it this soon. But I'm hopeful the early diagnosis gives me a better prognosis than my late family members. Thank you again for your kind words. I'll definitely be looking into Imerman Angels and Cleaning For a Reason. *cyber-hugs*

 

[Jambalaya]

I'm glad you're on top of everything, Kaycee. You said you couldn't wait to get the cancer out, and yes - I'm sure it will be a big relief for you! Fingers crossed for that day to come soon!

You said that whatever the genetic tests show, you're sure that the cancers in your family are genetic and that no one will ever be able to convince you otherwise, and that the tests are only as good as the medical technology. I agree completely and I feel exactly the same way, because there are five cancers in my family that together form a clear BRCA2 pattern (would probably be more if my mother hadn't been an only child) and my tests were negative. I feel the same way as you do about it.

I am incredibly sorry that you've suffered so much loss. It just isn't fair.

 

[Bonfire]

@Kaycee2018 I had a bi-lateral mastectomy 2 years ago.
If I can be of help let me know.

 

[Kaycee2018]

Thank you, @Bonfire . I appreciate the support. I hope yours went well. Mine is in two weeks. It’s nerve wracking, but I’m certain I’ve made the right choice.

 

[Bonfire]

Thank you, @Bonfire . I appreciate the support. I hope yours went well. Mine is in two weeks. It’s nerve wracking, but I’m certain I’ve made the right choice.

I don’t regret it for one millisecond! may I ask what type of reconstruction you are having? You will do just fine!
(Sorry for the thread jack)

 

[Kaycee2018]

I'm glad you're on top of everything, Kaycee. You said you couldn't wait to get the cancer out, and yes - I'm sure it will be a big relief for you! Fingers crossed for that day to come soon!

You said that whatever the genetic tests show, you're sure that the cancers in your family are genetic and that no one will ever be able to convince you otherwise, and that the tests are only as good as the medical technology. I agree completely and I feel exactly the same way, because there are five cancers in my family that together form a clear BRCA2 pattern (would probably be more if my mother hadn't been an only child) and my tests were negative. I feel the same way as you do about it.

I am incredibly sorry that you've suffered so much loss. It just isn't fair

Exactly! The technology just isn’t there yet. I’m amazed at how slow the progress against cancer has been.

Thank you again. While it isn’t fair, I feel incredibly fortunate. I just hope it stops with me.

 

[Kaycee2018]

I don’t regret it for one millisecond! may I ask what type of reconstruction you are having? You will do just fine!
(Sorry for the thread jack)

I am having delayed-immediate implant reconstruction. My plastic surgeon feels he gets better results by waiting a week after mastectomy for the tissue to heal a bit before reconstruction (vs. immediate direct to implant reconstruction at the time of mastectomy). So two surgeries a week apart. Don’t love that, but I’m all for “better results” LOL How about you?

(also sorry for the thread jack)

 

[Bonfire]

I had tissue expanders implanted during the same surgery as the mastectomies.
Little by little they were expanded with saline in my surgeon’s office. I had my expanders swapped for silicone implants two months after the mastectomies. My plastic surgeon was the same “better results”. I wondered if you were going the autologous route.

 

[missy]

@Kaycee2018 sending you bucketloads of healing vibes and well wishes. May everything goes as smoothly as possible and soon you will be on the other side of this. Feeling strong and well and completely recovered. Gentle hugs.

 

[Kaycee2018]

@Kaycee2018 sending you bucketloads of healing vibes and well wishes. May everything goes as smoothly as possible and soon you will be on the other side of this. Feeling strong and well and completely recovered. Gentle hugs.

Thanks so much, @missy