Topic: Risk Assessment Appointment to discuss results

Jul 16, 2020 09:00AM Mavericksmom wrote:

Thank you Melissa! I really appreciate your feedback!

Jul 16, 2020 06:59PM Mangosan99 wrote:

Mavericksmom/Moderators, Thank you for asking/answering these questions. I am in between genetic counseling and receiving results and this information was very helpful!

Jul 18, 2020 09:31AM Mangosan99 wrote:

Mavericksmom, Thank you for coming back and sharing your experience and results for "the rest of the story."

I just wanted to add, and ask others to help me out here, but familial genetic mutations are just one aspect of risk assessment, right?

I have used the risk assessment calculator at https://bcrisktool.cancer.gov as I gather more information about risk. I add this because although my mom had breast cancer twice (once at 50 and again at 68, each primary cancers) and my grandmother once (at 73), I chose to ignore that and live in my own bubble about it--while I was also a busy working mother.

Fortunately, I am only seeing abnormal cell changes now (at 52) after routine monitoring, rather than aggressive screening. I have a daughter too and I am planning to pass along any/all information that I receive that applies to her, to include the risk assessment calculator, even if I test negative for all known genetic mutations.

What I have learned so far from genetic counseling is that my mother, myself, and my daughter are the only females in each generation so it is the only data we have. If any of us had sisters, and they had cancer too, the family history in upon itself would add risk.

I guess what I am trying to get at is that there is a good chance there are gene mutations that we do not yet know about that might explain the recurrences in our families, but they have not been identified. So, we have to pay attention to our family history as our only known crystal ball. I'm not so sure you were just "unlucky."

Depending on what my definitive diagnosis is (still trying to figure it out), I may have wished I had not considered myself so different than my mother and her mother and sought risk counseling a little bit earlier. I recall my gyn telling me a bit about it but I was sure it did not apply to me. And maybe I would have never believed it until it happened. I'm a bit stubborn that way.

Jul 18, 2020 10:48AM Mavericksmom wrote:

Ravelry, it cost me $250, which I was Ok paying. If it was going to be more, I wouldn't have had it done.

I don't know what factors in, but had I stayed with the same lab, it would have been covered. Because I went to INVITAE, it wasn't because I had previously been tested for the BRCA genes. The original lab didn't offer a test my counselor recommended for me.

Ethnicity may have something to do with it?

Mangosan99, I should clarify that the reason I feel genetic testing is pretty much a waste of money is that outside of the BRCA genes, nothing else seems to increase the risk enough to change treatment. My results didn't change my treatment/surveillance and it won't change my daughter's surveillance. My MO even said it was fine for my daughter to put off having a mammogram for a year due to the pandemic. They are just guidelines anyway. This year she will turn the age that is 10 years younger than my age at my first diagnosis.

A positive BRCA gene is a whole different issue. It does directly change treatments.

Looking back, I wish I had not been tested again. Regardless of what they discover in the future, this was the last time for me. I will never find out why so many in my family had breast cancer. I will continue with mammograms every year or two, but other than that, I don't plan to do anything more.

Jul 18, 2020 01:20PM Salamandra wrote:

No answers as to why my sisters, mother and I had breast cancer, but it isn't genetic.

I think it would be more accurate to say that there isn't a known genetic explanation. When I had genetic testing, that's what the counselor told me - there are still a lot of genetic factors they don't even know to test for, let alone understanding the impact.

Jul 18, 2020 02:23PM - edited Jul 18, 2020 02:27PM by Mavericksmom

In my case, it's unlikely genetic. My mom was 83 when diagnosed, so who knows for her. My sisters were 59 and 72. I am the only one who was premenopausal.(49)

Those sisters have daughters who are in their late 40's and early 50's as does my brother, and no signs of breast cancer. I can trace both my fathers parents and my mothers parents to the 1600's and most of their family lived well into their mid 80's to mid 90's. Why my family, mom and 3/4 daughters? Always a chance of genetics, but very doubtful. Sometimes it is just coincidence. More likely something we were exposed to. When I was little they used to drive all over our streets spraying to kill mosquitoes. In the 50's and 60's there were a lot of new chemicals and little was done to protect people from them, it was a whole different era.

The former generation (mom, aunts) and present generation (my children, nieces) basically unaffected. So what happened in the late 50's and early 60's that stopped in the late 60's to present day?

Really doesn't sound like a genetic issue to me and my counselor didn’t seem to think so either.

Jul 18, 2020 04:16PM Mavericksmom wrote:

Alice, I totally agree! I had 18 surgeries since 1980’ for various reasons, I too am only interested now in dealing with things as they happen. No more testing to find out why.

Sep 21, 2020 12:01PM - edited Sep 21, 2020 12:24PM by Beesie

Onthinice, you are correct about the choice of options, but I don't think you have a full or accurate understanding of each of the options. Or maybe you are in a place where you've just chosen to focus on the negative aspects.

"You wait and watch to be diagnosed, hoping its early, take a drug that has horrendous side effects that lowers your risk somewhat and doesn't provide protection for all types of breast cancer, and if you are diagnosed that "Golden standard" medication used to prevent recurrence no longer works for ER positive breast cancers(the most common type), or ask for prophylactic mastectomy that has a 90-98 percent chance of seeing you never experience this monster, BUT insurance will only cover this if you are extreme high risk, with many biopsies have positive genetic testing and are young enough for it to be cost effective for the insurance provider. Well, most older women get diagnosed, having a genetic predisposition is low, and many times its to late when you need a biopsy!"

"hoping its early" Well, 60% of invasive breast cancer diagnoses are localized, i.e. in the breast only with no lymph node involvement. If you add in DCIS, which is a pre-invasive diagnosis, it's more like 80%. That doesn't guarantee survival, of course, but the majority of early stage patients are successfully treated. With high risk screening, it is realistic to hope that a breast cancer diagnosis will be caught early. But again, no guarantee of course.

"a drug that has horrendous side effects" Some people do experience horrendous side effects. But many patients take Tamoxifen or AIs for 5 or 10 years with just a few side effects that are very manageable. Until someone is on these meds, they won't know how well they tolerate them.

"that lowers your risk somewhat" I don't consider a 50%+ reduction in breast cancer risk for high risk patients to be "somewhat".

"if you are diagnosed that "Golden standard" medication used to prevent recurrence no longer works for ER positive breast cancers". No. If you are diagnosed, it does not mean that Tamox. or an AI won't work to reduce the risk of a localized or metastatic cancer. And if you were on one of the meds before, you can always try another.

"insurance will only cover this if you are extreme high risk, with many biopsies have positive genetic testing and are young enough for it to be cost effective for the insurance provider." I'm sure there are cases, but I've been here a long time and I don't think I've ever seen insurance deny coverage for a PBMX for anyone who has tested positive for a genetic mutation, of any age and regardless of the number of biopsies they've had. I have also seen insurance companies often approve PBMXs for women with no genetic mutation but with a known high risk factor or sometimes even with just family history. I've seen more doctors balk at doing a PBMX for patients without an extensive history than I've seen insurance companies deny coverage. Not that I'm a fan of insurance companies - this board is littered with insurance refusal stories. But I've been surprised by the fact that PBMXs are usually approved even when the patient's doctors themselves are questioning the need.

"Well, most older women get diagnosed, having a genetic predisposition is low" Yes, breast cancer is more often diagnosed in women who are in their 60s and 70s. This is true of most diseases and is the result of the natural failure of our genes as humans get older. Only approx. 10%-15% of breast cancer is caused by a genetic mutation, and usually, but not always, these cancers are diagnosed at a younger age. That's because these individuals started life with 1/2 of the normal failure of one particular gene already done (i.e. the failed gene was inherited from one parent).

"many times its to late when you need a biopsy!" No. Only 5%-6% of breast cancer diagnoses are Stage IV de novo, i.e. metastatic at time of diagnosis.

What to ask at your appointment? Have you already had genetic testing done, and is this an appointment to discuss the results? Or is this an appointment to decide if you will proceed with genetic testing? If it's the latter, I've found the genetic counsellors are usually very good at explaining the pros and cons of testing, and what the results might mean, whether positive for a genetic mutation or not. One important question would be about the choice of the panel, i.e. the number of genes you would be tested for, and which ones. This will be influenced by family health history. These days most people get more than just BRCA testing.

Sep 21, 2020 03:07PM Beesie wrote:

Onthinice,

No offense taken. I'm just concerned that you are going into this process with such a negative outlook.

What prompted this appointment? I incorrectly assumed when you said that you were having a "risk assessment" that you would be seeing a genetic counsellor. I've talked to my Medical Oncologist about risk but I've never had a full risk assessment done by an oncologist.

I honestly don't know what will happen at your appointment. Is this 'breast oncologist' you are seeing a 'surgical oncologist' or a 'medical oncologist'? Both my Breast Surgeon and my Medical Oncologist refer patients to a genetic counsellor in cases where there is a family history of breast cancer. The genetic counsellor decides on whether genetic testing is appropriate and manages the process (lots of family history collection) and communication of the results. My MO then incorporates the outcome of any genetic testing done, and the assessment from the genetic counsellor, into his discussions about future risk.

Sounds like your process will be quite different, if your appointment is with an oncologist. So I don't know what will happen.

Sep 22, 2020 11:48AM MinusTwo wrote:

Thin - everyone's experience is different - but what you're seeing in all the threads could be useful - once you determine what you are facing. But don't try to put the cart before the horse. Many if not most of us have (had) dense breasts. I understand you have fears, but to date you have no reason to believe you have breast cancer. You are looking at preventative measures, which may or may not make any difference in the long run. And as you discovered - Dr. Google often causes more fear and harm than not. It's good that you're going to a counselor for anxiety. That should help.

We'll be thinking about you as you do your risk assessment next week. Please do come back & let us know the results. But until you have a specific breast cancer diagnosis, it's hard to answer questions that might not even be relevant.

Sep 22, 2020 12:51PM Beesie wrote:

"What you are doing right now is planning for recovery from a serious car accident when you haven't even gotten your learner's permit."

Oh, that's perfect! It describes so many posts that we see here every day. Can I steal it?

By the way, Onthinice has moved her discussion here:

https://community.breastcancer.org/forum/47/topics/877679?page=1#post_5592721

Sep 22, 2020 05:56PM AliceBastable wrote:

Steal away! I always do my best explaining through analogies. 😀