So much for cautious optimism - just got the results from the web site and I’m positive. Phooey.
I guess I may have dodged a bullet by not developing breast cancer yet - I admit I’ve been far too cavalier about keeping up with the mammograms. I’ll need to schedule a visit or call with the gyn to talk about what if anything to do differently from here on out.
Additional screening for ovarian cancer would seem to be in my future. I know that prophylactic ovary/fallopian tube removal is often recommended; I’m done with those parts, so that would not be a big deal. Prophylactic mastectomy is also an option; while mine serve more of a decorative purpose now than a functional one, that would be a bit tough to do.
I had been feeling pretty smug, thinking that at nearly 65, the lack of breast cancer suggested I dodged the bullet.
I’ve got a telemedicine appointment with the gyn next week, and am planning on booking a consult with a breast surgeon to discuss options (she’s someone we knew years back, before she went to medical school, and luckily for us, settled in the same area we live in). I also need to seriously consider evicting my ovaries and fallopian tubes.
I was stunned at how much difference breastfeeding makes in one’s risk - up to a 50% reduction. I’m glad that turned out to be easy for me and the kids! Of course, cutting a 60% risk by half still leaves the girls and me at 30%.
I just sent in a saliva sample for cancer risk screening to Myriad last week.
My father was diagnosed and treated for Ductile Carcinoma in Situ last Fall at age 88. Post-treatment genetic testing found a pathogenic variant of the CHEK2 gene, which gives some increased risk of various cancers. So I asked my primary doc if I could get tested to see if I lost the coin toss. She had to refer me to Rocky Mountain Cancer Center, which sent me to a call with a genetic counselor from Myriad. They, in turn, sent a report back to RMCC that my father’s result and family history of cancer justified the test, and the doc at RMCC (who I’ve never met or spoken to) ordered it. It’s the genetic risk screening for cancer that includes everything except BRCA–Dad wasn’t positive, and neither is Mom.
Myriad mailed it to me, and I spit into the collection tube and mailed it back. Their estimate on my out-of-pocket for the test is $0–I suspect it may be slightly more than that, but no more than around $250. I’ll get the result in a few weeks.
A friend of mine told me she had just gotten some sort of kit in the mail, that she was going to deal with over the weekend. Likely the same thing you’re doing.
I had sent her a text message saying “It’s good to be positive about stuff, right?”
then another one saying “…unless it’s a BRCA test!”.
Yikes on your father having DCIS. Is all well now?
I dropped my gastro a message about the genetics results. I can’t find any consistent info online about whether this increases my risk of colon cancer; likely it is not helping any, at least - and I’m already on an annual schedule for THAT little bit of fun. At least mammograms only take a few minutes and do not require the medical equivalent of high explosives!
That’s kind of my basic thought on my personal risks. My Mom, as mentioned elsewhere, has colon cancer. Her father died of colon cancer. I don’t really care what the current state of genetics says - I have to assume I’m high risk. I’m currently on the three year plan.
Mom also did have breast cancer, a long time ago. Isolated data point, of course.
If others are looking for a cheap way to be tested, i think you can still join the WISDOM study. They enroll women 30-74 who haven’t had breast cancer, and part of their intake is genetic testing relevant to breast cancer.
Thanks for asking. The DCIS was caught very early, thanks to my sharp-eyed mother noticing a suspicious red spot near one nipple. No post-op chemo or radiation required.
That said, he’s physically and mentally much declined from a year ago. They did both manage a trip from Florida to Colorado for our son’s wedding last month, so that was a happy thing. I’m going to visit them for his 89th (and my parents’ 61st anniversary) in a few weeks. I’m feeling some urgency to see them more often.
Sorry to hear about your positive result. Here’s hoping that regular screening will catch anything early. Cancer treatment in general seems to have improved massively in the past few decades. A friend of ours who never got her age 50 colonoscopy (and she’s a nurse!), was diagnosed with stage 4 colon cancer last year (mets in the liver). Chemo worked, and she’s scheduled for surgery soon to remove what’s left of the primary tumor to become cancer-free. The surgery is not without risks, but I’m amazed at how well everything has gone.
Yikes on your friend! I’ve often told here of how my first colonoscopy, at about age 50, was an afterthought as the gastro wanted to do an upper endoscopy, and I said “while we’re at it…”. A friend was diagnosed with stage 4, at age 49. After a year of misery (chemo, radiation, surgery - she has a permanent colostomy), they think they got it all. Treatment options have improved all around.
I have a telemedicine session with the gyn Monday. Someone from her office called today to tell me of the test results - I think I surprised her by saying “yep, already know, got a session scheduled”. She mentioned MRI and more frequent screenings, and a referral to a surgeon.
Right now, I’m leaning toward getting the ovaries / tubes removed sooner - at 65, I’m pretty much done with those. I have not ruled out mastectomy / reconstruction; that, I think, would be harder emoting emotionally. On the other hand, it’d be nice to have perky boobs for the first time in 50 years!!
Oh yeah: my 36 year old niece (daughter to the brother who had prostate cancer) is BRCA1-positive. I’ll see her next weekend. It’ll be interesting to hear what her plans are.
Oh, and I got a message back from the gastro that BRCA1 DOES increase my risk of colon cancer - slightly so, I gather, but it would explain a lot of my history (not that I don’t have other confounding factors, including being minus a gallbladder, and until recently being obese).
I sent a reply asking if that affected my screening schedule - currently annual colonoscopies, but I don’t know if that needs to be increased. or perhapse remain annual even if my screens quit showing the rapid appearance of large polyps even on an annual schedule.
Interesting timing on an article at Washington Post - talking about patients having online access to test results before their doctor has had a chance to review them. This is exactly what happened this go-round. I saw the results on Wednesday. Thursday, I called for a telemedicine appointment. Friday, THEY called me (a colleague, as my doc was out of town) to drop the news. I think that doctor was a little surprised at my “yep, I know, already scheduled a followup” (and I have had time to do a fair bit of online research and put thought into where to go from here).
Today’s appointment, by the way, is an excellent example of the perfect use of telemedicine. No exam needed, just Q&A and possibly some referrals. It’s in just over an hour.
Had the telemedicine visit, and basically it went as expected. Doc was set to refer me to the cancer group affililated with our county’s largest hospital system, which I nixed - my son was born at the flagship hospital, any surgery would likely be performed there, and the experience of my son’s delivery was awful enough that the only way I will ever go there again is if I’m found unconscious somewhere.
She DOES know the other doctor I was thinking of seeing (a breast specialist, whom we knew years back before she went to med school) and highly recommended her - with a different hospital system. She suggested that the breast doc would be able to refer me to a gyn onc and genetics counselor in that system (my gyn does not know the doctors in the other system as well).
I called the breast doc’s appointment line, and they are supposed to call me back to make an appointment. This was yesterday. No callback yet. Luckily in my case this is not urgent - I could have seen another doc in the group tomorrow, but want to hold out for the one I know.
I expect I’m looking at an MRI in the near future (a friend who is high risk says she has an MRI each year and a mammogram - basically one or the other every 6 months). That will help guide what, if anything, I do beyond extra screening.
I’m still shaking inwardly at how cavalier I’ve been over the years about mammograms - I’ve gone 2 or even 4 years. I should not have gotten away with it this long.
Update: I see the breast surgeon in about 12 hours. My appointment was originally later in the month but she had a cancellation for tomorrow, so here we go. Shit’s about to get real.
I could have seen someone much sooner but really wanted to see this specific doctor, as a) she’s someone well thought of, b) she’s someone we know personally, and c) given the clean mammogram from July, it didn’t seem super urgent.
(OK, maybe TOO real; I am recovering from a fairly nasty bout of diarrhea with a spectacular bout of barfing at the very end).
My husband is coming along with me. He keeps standing there, staring at me, looking bereft. Which I get… but on several occasions I’ve kind of snapped at him to go do something else, as this does basically nothing to help me.
And, the upshot is pretty much what I’d been thinking.
Ovary / tube removal as soon as possible; I’ve got a call in to the scheduling person at the gyn oncologist’s office to set up an initial consult, then yank 'em. The breast doc says that since there is not the kind of screening available for ovarian cancer that there is for breast, tubes/ovaries go first - ovarian cancer may not be quite as prevalant as breast cancer but it’s harder to catch early, so…
And we’re good with watchful waiting on any kind of mastectomy, given that I still show no evidence of having breast cancer. I get a breast MRI in a few weeks. Assuming that’s okay, I will basically alternate that and mammograms every 6 months, until Something Bad shows up, or I decide to have a preventive mastectomy.
I did find out more about the RRM (risk reducing mastectomy) process. It’s improved a lot in recent years, I gather, in terms of cosmetic and functional (nerves etc.) effect. So if I do go that route, it might be less traumatic. But I’ve got enough higher-priority stuff going on right now.
The breast MRI will be a different kind of fun. Gadolinium contrast - which is not radioactive, so I won’t have any fun Hulk superpowers. Just… get stuck with an IV, then lie on my front for 40 minutes or so while BANGABANGABANGAbangabangaBANGABANGABANGABANG goes on around me. I recently had a chest CT which involved iodine contrast (also non-radioactive, but with that lovely “peed my pants” feeling) but also had the advantage of a dose of nitroglycerine at the outset. I told my husband “I’m not radioactive, but I might explode!”.
You’ve really got to aggressively monitor the possibility of Ovarian Cancer because it is almost impossible to detect until it is too late. Chris Evert lost her sister to Ovarian Cancer because, by the time anyone knew she had it, it was stage four. The doctors told Chris that there was a high risk factor, so she thought she would get tested just to be sure she was okay. They found stage one Ovarian Cancer.
At this point she is cancer free. She says that her sister saved her life even though she lost her own.
As I mentioned upthread, in my experience ovarian cancer is nothing to mess around with. Hope your surgery goes well and you have a fast and easy recovery, Mama_Zappa.
These days, who knows whether they’d do the BRCA testing at that point. And of course you hear horror stories of doctors dismissing “minor” symptoms as “hysterical women”.
My niece may have inadvertently saved my life. She found out from ancestry or 23andme or some such then later had it confirmed. Those can turn up all sorts of surprises, some of the family drama sort (you’re not really my father) and some like this. With no family history of breast cancer, this wasn’t even on my radar.
Yeah - as the doc said, they simply don’t have good tools for monitoring this, and of course it’s asymptomatic until it’s too late.
While my risk is (slightly) reduced by having taken birth control pills for a few years, and a recent pelvic exam didn’t turn up anything obvious, we all know that’s not perfect. I don’t know how reliable even a transvaginal ultrasound (the dreaded DildoCam) is. Right now I’m in the process of scheduling the gyn onc consult, and arranging some other testing so I can get cardio clearance.
