I wish I had more than supportive words to share on a post, like the ability to bring you dinner or a quiche or flowers, or bring you coffee and let you vent any and all feelings in person.
But…there are so many of us rooting for your daughter, and for you as you support her. Please keep the updates coming (only if you are comfortable to do so) so we can continue to try and offer cyber comfort.
Glad things went well today, and sending more hugs from here, as well as a listening ear.
Your daughter is lucky to have you for her mom.
The first chemo infusion takes the longest because the drugs have to be administered slowly in case of a serious allergic or other reaction. Subsequent infusions will take less time. I think D’s went from 6-7 hours initially to 3 by the end.
Don’t hold your breath over finding “the source”. Some mutations are idiopathic (they arise spontaneously). We were never able to find the source of D’s mutation. Neither her sister nor I carry the mutation. And it was impossible to test the paternal side of the family. DH died in 2005 (drowned in a rafting accident) and he was an only child. DH’s father died in 2006 (mesothelioma), and his mother in 1973 (lupus). However, neither of the sides of DH’s family had an excess of cancer deaths or breast/prostate/colon/thyroid/kidney cancer diagnoses which should have been the case if D’s mutation were present according to D’s genetic counselor.
Sometimes there just aren’t any answers. Be prepared for that.
I hope your daughter’s wedding is a glorious and joyous event! I know she’ll get through this ordeal and make it out the other side because she has the love and support of her family. Best wishes to all of you.
I’m in a the wisdom study, too! The genetic test was a major incentive to join.
Today was our genetic counseling session.
We misunderstood a bit. The appointment was only for my husband. We thought it was for both of us but that only my husband would be tested for a genetic mutation. But after our questionnaire, they deemed only my husband was qualified for genetic testing. They were confused why I was there.
He has cancer on both his mothers and father’s side. Ones that can be genetic. My daughter’s gene mutation could come from either, or neither.
I told the counselor that our daughter wanted us both to be tested. But she said if my husband tests positive for the gene mutation our daughter has, it would be highly unlikely I would also have the mutation.
The counselor’s view was that my husband should be tested for his health and the health of family members who don’t have cancer now. She was unsure how genetic testing would be beneficial for our daughter and her embryos. That testing for the embryos should come from my daughter and her partner, not her parents.
The session was surprising very stressful for me and I was pretty short with my husband. The genetic counselor told us pretty much what we expected.
The counselor said that insurance would pay for my husband to be tested but unless he tests negative for any gene mutations, I wouldn’t be covered. She then said that it would only be $250 to test me, maximum. I’m a little confused, I told her our daughter was very adamant that both her parents be tested.
I’m having a bit of trouble with some of the questions I’m being asked.
Like, do you think her fiancé will stay with her after her cancer diagnosis?
Do you have a date for the wedding?
The wedding will be planned after the cancer treatment.
My husband says people are just being curious, I feel they are being insensitive.
My husband also keeps telling me I’m not telling him everything. I know I am, he shuts down after one piece of information imo. But he gets upset that I’m not being forthcoming. He has terrible hearing and my daughter’s voice is very difficult for him to hear. So I also feel like I’m translating everything she says.
Our married kids have paid out of pocket for all their genetic testing. It’s expensive and it was a pain… but if you want to have kids and you’ve got some wonky stuff in the family history, it’s worth doing IMHO. One kid has an HSA from work and so it was “out of pocket” but it was out of the health account so it didn’t sting quite as badly.
I think your D’s gynecologist can refer her to a genetic counselor to discuss her long term fertility…
Hugs. You are now in the fifth circle of hell.
Did you find a support group? You won’t find everything helpful… but based on your last post, one of the key takeaways is that YOU aren’t responsible for managing everyone else’s feelings. So the stupid and insensitive things people blurt out? You get permission from the group to say, “Hey, that’s incredibly insensitive”, or “Why would you ask such a hurtful thing?”
Big, big Blossom hug.
She has a fertility doctor and her own counseling. She wants us to be tested. I don’t think it’s a hard ask.
I was confused that this counselor couldn’t answer why her genetic counselor wanted both of her parents tested.
My daughter has already had extensive genetic counseling and fertility treatments. Besides her out of pocket maximum, they’ve already paid $10,000 on the fertility treatments
Pay the $250 and get it done. This counselor doesn’t need to sign off on a reasonable request from your D’s medical team!!!
I think I’m just feeling very raw today. My husband and I were very adamant that we wanted me to be tested as our daughter asked. She still denied it
I’m sorry that you can’t get tested right now.
The genetic counselor told us when our mom was going to be tested, that they look for cancer in the immediate family/1st degree relatives and test accordingly. Since at that time she, as well as 2 of her daughters, had been dx, testing for her was approved. Since she didn’t have any mutations in the BC-associated genes and our dad had died and he had a first cousin with BC and his father died from colon cancer, we were able to get tested. Nothing genetic found, so we are just unlucky or there’s a mutation that hasn’t been discovered yet.
If you can swing the cost and the geneticist will order the test for you, get it done. If only to ease your mind.
My hopes continue that your daughter has an easy time with chemo and goes forward with a long and happy life.
I’d be upset, too. You wanted to be tested and for whatever reason (it’s still confusing to me, too) she wouldn’t approve it for you? (Do you have to be approved for such? Or can you insist and then pay the $250 to make it happen?)
You’re trying to give your D some information so I can understand being very upset and frustrated that the one thing D asked for (for you and your H to be tested) is hitting a speed bump or road block.
Any challenge feels like a huge boulder so no wonder you’re feeling additionally vulnerable. I’m so sorry. Don’t give up. I know you won’t. I feel for you!!!
Re: husband, Could you write it down for him? It’s true, upsetting info is hard to hear even without hearing problems.
Perhaps your own physician could order.
Maybe a medical geneticist could help.
See so many specialists such as at Yale. Maybe genetics specialists for second opinion near you or via telehealth.
Anyone can draw your blood and send it to Ambry. Just ask your doctor to do it. Also the genetic counselor kinda can’t say no. They are under a doctor there and just ask the doctor to draw your blood.
A friend’s daughter (36 yo) was just diagnosed with “stage 2-3” breast CA which is in a few nodes 
They are starting chemo, then surgery, then radiation .
Your frustration is valid! This genetic counselor is bad at her job. It is her job to listen, get to the kernel of what patients are needing, and give answers that patients can understand. If patients leave saying “I just can’t understand why she did what she did” then it means she failed in her job. It’s not about you, it’s about her weakness as a clinician. This is what I always say about doctors (but it applies to any medical worker): “Remember that 1 out of every 20 doctors finished in the bottom 5% of their class.” Sounds like your genetic counselor is one of these weak ones. Call back, insist on the testing. Tell them that your daughter’s genetic counselors are insisting on the testing. Insist on talking to the doctor if she refuses. Or make your husband do it! If he can’t hear what is being said on the phone then maybe he will get new hearing aids. The reason you feel beat down is because you are being pummeled by bullcrap from all sides!
How well are genetic counselors, physicians, and other health care workers trained and evaluated on how well they can explain medical stuff to patients who have no medical background?
Genetic counselors, in particular, are supposed to be well trained in this. Doctors and other medical workers have multiple things they must accomplish (diagnosing, treating, leading etc) in addition to explaining. But really the total job description of a genetic counselor is to explain difficult scientific concepts to lay people. So if the OP (clearly a very intelligent and invested person) is leaving the appointment saying “Wait? What!” the genetic counselor has failed.
I’m feeling much better today.
I think that the counselor doesn’t see many people such as us. My daughter has already been diagnosed with cancer and she has the additional embryos.
I think the counselor sees people with cancer and talks about how genetic counseling helps them and their relatives. We are kinda upside down. And she’s not an expert on fertility.
So while I’m not ready to say she was terrible, she might have been out of her particular expertise.
My husband told me that we will get me genetic testing because that’s what our daughter wants. She is no shape to have any children right now so we have time. At least 2 years according to my daughter before she can even consider pregnancy.
As I understand the field, this is critical for genetic counselors, important for NP’s and PA’s, much less important for physicians in specialties (but a little more important for primary care, including geriatrics and peds).
All of my providers now send a survey after every encounter (including Telemed) and at least half of the questions deal with this topic… much less about “was the office clean and was the receptionist courteous” which was the case 5 years ago, and MUCH more about “did you understand what was being said during your visit, were your questions answered, do you have follow up questions and if so, do you feel comfortable scheduling a phone call with your provider to review those questions”, etc. I think the large groups which have bought up small practices realize that to be competitive, you can’t have uneasy patients wandering around feeling like they’ve been diagnosed with something they don’t understand, OR, don’t really understand the treatment plan they’ve been given. The outcomes for patients who don’t take their meds correctly (to pick an obvious example) are terrible… so the large med management companies understand that evaluating the team on their communication skills is critical.
If you visit a small practice still owned and operated by a couple of docs… I’m not sure they measure, evaluate, or care about communication. They are too worried about cash flow and keeping the doors open right now.