I’m glad that you are feeling better after having had an opportunity to vent and read the responses here. Vent here whenever you wish to.
I am wishing your daughter a quick and complete recovery and praying for all of you who love her so much, that you may feel loved and supported so that you can offer the same to her. It sounds as though she is in the best possible circumstances to be facing this situation (supportive family, top notch medical team, health insurance, youth). And hopefully this situation will show the health insurance company that they should not force women to pay for a mammogram out-of-pocket if they’re not 35 or 40, or whatever age the insurance company thinks they ought to be
Thinking of you and your daughter. And of course the fiance, who probably has no idea how to navigate this! So many people are affected when one person is ill.
@deb922 — it’s certainly understandable why you’re upset and angry. I’m glad this is a safe place for you to vent and your dear D has excellent support and caught this early.
Treatments for breast cancer is really quite advanced and folks have excellent outcomes. There was stigma about it and in some circles there still is. One if my best friends had stage 4 breast cancer recently and was given a grim prognosis. She had treatment and continues to do extremely well and is looking to get 10th anniversary since treatment.
Sounds like your D is in excellent hands and will do just fine.
Best wishes to your daughter for an easy treatment and full recovery. It can be devastating when a dx comes out of nowhere. It changes a person & I hope your daughter is able to take advantage of the therapy options most cancer centers offer.
My mom was dx with BC when she was 62. I was dx with non-invasive at 46, and two of my sisters followed with invasive, one of them with a recurrence a couple of years later. Colon cancer on my dad’s side, but since he died when I was a teen, we just have it as history and no further info.
Mom had the genetic testing done first, then I did. Both of us negative for all the genes. My 2 sisters tested with the same results. I had a consult with another geneticist this year when DCIS showed up again, but since the genes they test for hadn’t changed, no redo.
My recollection of insurance paying for testing is having cancer or immediate family/1st degree relatives having had similar cancers. Myriad used to offer financial assistance, but I don’t know if it’s still available.
Since I had DCIS, I fell under the standard of care of yearly mammograms and MRIs, alternating every 6 months, all covered as preventative. Ordinarily, if something is found, follow up tests move to diagnostic & you get to pay. Lucky us.
After biopsies and 2 excisions in the past year, and having already undergone radiation, I elected to have a double mastectomy. Reconstruction will happen in a year or so. A roller coaster of emotions still.
My MIL passed away in 2020 and no one has a clue what surgery she had for a “female problem” a long time ago ( bloody secrets). We all hope it’s nothing our girls need to be concerned with.
I understand what you’re feeling. D2 was diagnosed with a triple positive breast carcinoma when she was just 25. D had a mastectomy, chemo and immunotherapy (all while she was a full time med student). She survived and celebrated her 6th cancerversary this summer by doing ovarian cancer surgery on a patient. (“Six hours of surgery is a great way to NOT think about what this day is…”) D2 also chose to have a prophylactic second mastectomy a few weeks ago even though her wedding is just 7 weeks away. (Because she said her risk is too high and she never, ever wants to go through cancer treatment again. Also she wanted to get it done while she knew she had really good medical coverage and could pick a surgeon and plastic surgeon she knew and trusted.)
I’m sorry you are going thru this and your daughter is going thru this. It’s truly an awful thing to happen, but you both will get through it. Hang in there.
D2 had extensive genetic counseling after her BC diagnosis. She has a mutation that wasn’t recognized even 10 years ago. Although we did have information about cancer cases/deaths in the family, the genetic counselor said many of them weren’t useful because the individuals were too far removed from D2. (great grandmother, second cousin-once removed, great aunt) Or the cancers in nearer family members were unrelated to her specific mutation. (Mesothelioma, malignant thymoma)
I know you feel very angry with your MIL right now and it’s certainly understandable. There is a whole of unfair stuff happening right now to your daughter that is easy to feel angry about. (Feeling angry is better than feeling powerless. Ask me how I know…,) But try not to let it interfere with your relationship with her. Even if your MIL gave you the correct information, it may not have helped the genetic counselor. Since your MIL doesn’t have the BRCA gene, she may not be aware there are more than a dozen other mutations related to breast cancer.
Best wishes to your daughter, you and the rest of your family.
Your MIL comes from a different generation. It’s hard to remember now, but it was a huge deal when Betty Ford went public about her breast cancer diagnosis. Nevertheless I get feeling irked.
I agree that Blossom gave great advice about seeking out a support group.
So sorry you and your mom are going through this. Best wishes for a rapid and successful treatment.
Family secrets are amazing- I apparently had a baby brother who died shortly after birth with some genetic anomalies. I found out about him when I was in HS and my grandmother mentioned it in passing, as a time reference for something! I don’t know exactly what the genetic issues were, but I sure worried during my pregnancies!
One thing about Ambry that they do with Lynch is once you have a positive test they will test any family member up to 3 months after your diagnosis for FREE. You can contact them directly or ask the genetic person. It’s a wonderful service and we have used it. Not sure if it applies but would definitely ask. Good Luck.
@deb922 so glad you found some relief posting here.
Not to hijack your thread at all, but my 33-year-old niece was diagnosed with cervical cancer and is being treated at Memorial Sloane Kettering hospital in NYC. She and my sister-in-law stayed with me in Brooklyn while everything was being set up (they live in St. Croix, US Virgin Islands) but they are now at Hope Lodge where they take the shuttle to MSK every day; radiation M-F, chemo once a week. My niece was given entry to a wonderful support group on Zoom that she told me was really a comfort. I hope your dd has this option as well, and maybe you too!
I am another parent with a young adult adoptee from China. Very scary to have zero family history.
Zoom support groups can be a helpful option for many folks in this Covid time. They transcend geographical boundaries, as long as there’s a meeting time which works.
I have first hand experience with this exact thing. 3 yr ago, I was diagnosed with breast cancer. It was caught with a mammogram. At suggestion of breast surgeon and based on my own gut instinct, I got genetic testing done through a genetic counselor at the cancer center. I don’t have BRCA. I have a mutation in the ATM gene, which also causes breast cancer.
BRCA is the genetic mutation which most people are familiar with, but there are actually a few of them other than BRCA.
Based on the genetic test results, it was then recommended that I get a double mastectomy. Pathology lab results after the fact showed that I had cancer in TWO spots in one breast and pre-cancerous cells in one spot in the other breast. So cancer would have shown up on that side eventually, too.
In my case, like yours, there was family history.
Some general thoughts to consider:
don’t bother talking this out w/your MIL anymore.
your MIL probably doesn’t want to admit that this is coming from her side of the family. Given her generational slant on this sort of thing, that’s understandable. At the same time, it’s not like your MIL caused this. It’s just something that happens. You can’t control your genetics. It’s out of your hands.
Once cancer treatments are all done and you’ve hit the 5 year mark and no recurrence has happened, my oncologist said that you’re usually pretty golden.
if your daughter wants to have children some day, she should consult with the oncologist about that to discuss options.
My kids are 14 and 16 and were 11 and 13 when I was diagnosed. Oncologist recommended for them to get genetic testing at some point, but not necessary right away. She said also that if they do test positive for the ATM gene like I have, then they should start getting mammograms much earlier (I think it’s age 30?) and to get them annually.
a breast cancer support group in your daughter’s area could be very helpful. I found it to be very helpful when I was going through it.
Your daughter (and you as well) might find that as she goes through the treatment process, that you don’t have any extra “spoons” to put up with ridiculous nonsense like your DH being defensive about his mom’s ‘bad genes.’ That’s ok. It’s ok to not have enough mental or emotional capacity right now to give a rip about your MIL’s feelings on this. This isn’t about your MIL’s feelings. It’s about your daughter.
There’s more known about ATM than you might realize. For example, according to ATM Gene | Center for BRCA Research, women w/this gene have a 20-60% higher chance of getting breast cancer than someone without this gene. This gene is also associated with prostate, pancreatic, stomach, and colon cancers.
If you have other children, they, too, should get genetic testing to check for the same genetic mutation that your daughter has. Even if any of your other kids are male…the reason being that ATM can cause cancer in men as well. Also, if your son has the ATM mutation and he later on has children, he could pass along ATM to his kids.
My sister doesn’t have kids, but she got genetic testing after we found out my test results. We learned that she, too, has the ATM gene. So she has to go every 6 months for a scan and it alternates between a breast MRI and a mammogram. That will continue pretty much forever for her.
Also, note that according to that UCSF link I posted above, in order for somebody to have the ATM gene mutation, it means that they had to have inherited the mutated gene from BOTH parents.
This means that if your daughter has the ATM mutation, she inherited 1 copy from your DH and one copy from you.
A lot of people who are carriers of stuff like this don’t even realize it.
That is not what the link states. If someone has an ATM gene mutation they have on creased risk for cancers. If receive the gene mutation from both patents they have AT.
Note that men can get breast cancer, though only about 1/100 the rate that women get it. But male breast cancer should be of concern to any female relatives in terms of checking for a genetic connection.
Of course, other cancers associated with mutations in ATM, BRCA1, or BRCA2 can also affect men as well as women.
“ The ATM gene is typically associated with an autosomal recessive condition called ataxia-telangiectasia (AT). AT is characterized lack of muscle coordination (cerebellar ataxia ) at an early age, dilated blood vessels (telangiectases ) in the whites of the eyes, immune defects, and a predisposition to certain cancers, particularly leukemia and lymphoma. For an individual to have AT, he/she would have inherited a changed, or mutated, copy of the ATM gene from both parents. This means that each parent of a child with AT is a carrier of an ATM mutation. It is important to note that carriers are not at an increased risk for developing the neurologic features of AT but do have an increased risk for breast cancer.”
Two copies of mutated gene = AT (a neurological condition) and increased cancer risk
One copy = no AT, but still increased risk of BC.
So someone who developed cancer and was found to have an ATM mutation did not necessarily inherit a mutated copy from both parents.
Sorry I haven’t responded today. I’ve been out of town visiting my in laws. Which predicated my post yesterday.
On that front, I dropped any mention of what she told or didn’t about her family history. It’s over for me, I wasn’t angry. I was just frustrated with her. It’s a common feeling
@WayOutWestMom thank you so much for your post. It really was helpful to “know” someone who has gone through the same with their child. I think the scariest feeling is when your kid goes through things. You have no power and boy do you wish it wasn’t them. In fact I would do anything for her not to have to go through this.
It’s hard to thank everyone with this format. But to those of you who also have the ATM gene or any other mutations, thank you for explaining things.
@BunsenBurner thank you for explaining how gene mutations work.
My daughter’s first chemo infusion is over. She said it went well. I’ll be there for the last infusion. She’s young, very healthy otherwise and very fit. Those are good things.
We will have more hurdles to go through after chemo and radiation. And reconstruction surgery. Having children has its own set of issues.
But when she walks down that aisle and gets married, it will be the most joyful wedding ever! That has yet to be thought of or planned now.
And @oldmom4896 or anyone else, please highjack this thread! I’d be thrilled for anyone else to find support here. I’m sure it has to be hard for your niece. Very glad that you live in NYC and are able to house them and support them. Good medical care is so important
We have our genetic counseling on Wednesday. Hopefully we will get more clarity after it.
My son just had a baby girl. So he will get tested and although the baby had genetic testing as a precaution during pregnancy, they probably didn’t screen for this as we had no idea.
We will hopefully find out the “source” of the gene mutation and my daughter wishes everyone who could be affected, be tested. I hope they do.
bloody secrets). We all hope it’s nothing our girls need to be concerned with.