Best Of
Re: Triple Negative BC & Older Women
I'll chime in as real newbie-- recently diagnosed TN 56-year-old the last of July. I had a CT brain scan and a neck to knee PET scan just today- to come up with a complete diagnoses and staging.. Now I have the weekend wait... having fun yet??? **sigh**
You bet it bothers me that "older women" seem to be the stepchild of the studies since the numbers of us appear to be smaller.. While my heart TRULY bleeds for these younger women, and right now I worry about my own grown daughter, it would be nice to have more studies for those of us who DO develop this later in life. I feel sick for such young women to be hit with TN, so don't get me wrong. This is uncharted waters for so many of us as it is. Surely older women should be considered since we DO indeed develop TN. Hello!? Here I am, and so are you posting in this thread.
My mother had early onset BC yet I have no idea of what kind. She had a radical mastectomy on her right breast after finding a very palpable lump.. Mine was easily found also.. like it popped up overnight. I digress. There's no other family history on Mom's side of the family, nor my Dad's who are all now deceased. Even my baby brother died of the chronic form of leukemia Mom had. I'm very familiar with cancer as it's hit my birth family with a vengeance. My Dad died of pancreatic cancer also 3 weeks after diagnoses.
In Mom's case she survived the breast cancer treated (at around 38 years old, I think).. About 30 years later died from complications of chemo to treat what I think was a late diagnoses for acute myloid leukemia. She lived 3 weeks from diagnoses.
All I know right now about my own diagnoses is a poorly differentiated invasive ductal carcinoma from 4 tissue samples acquired from a needle biopsy. I also had an MRI which only confirmed this diagnoses with no other findings.. And of course it's TN.
Discovering that own my own thru my path report was a huge kick in the gut. I was ready to fight breast cancer.. I'd never heard of this form though. And yes, It WAS confirmed by my new oncologist.
Everything has happened so fast.. but not fast enough after reading about the invasive nature and distant reoccurring rate of TN.
I plan to get tested for BRCA mutations as I have a 37 year old daughter and 3 beautiful granddaughters, one who is approaching her teens.
Even my oncologist was surprised I was over 50. It could be taken as a compliment, however in reality I think it had more to do with the fact that most of her patients are much younger. She does the most breast cancer cases in the state. What she can't handle, such as cases where her TN patients have mets she sends to Baylor. She feels the true experts for this particular cancer is best treated at Baylor, as the so-called-mother of TNBC doctor is there with her research team.
Filtering all this information in such short time has been a real kick in the behind, but I'm hoping and praying for clean scans and and a low stage to start.. as I'm ready to do what I can to beat the crap out of this nasty beast.
Sorry this turned into a novel.. my first post.
I'm so glad I found you! Peace of mind seems a thing of the past.. though I desperately wish it for all of us, at ANY age! Take care... ![]()
Need help anyone else had anything else come back on their pet scan
Hi I am 37 years old I have recently been diagnosed with IDC triple negative and went for a pet scan the scan come back and said that the area hasn't spread anywhere else but the scan did pic up something in my colon area they weren't concerned at all really but now I have to wait yet again before I even see oncology to have a colonoscopy done. I really thought after my pet scan I would get on with doing something proactive like getting treatment now I feel right back where I started extremely scared and frustrated just waiting to be told I have cancer in my colon as well. Has anyone else experienced this? And did you have a better outcome than what you thought I'm going crazy again I had excepted my breast cancer and was determined to get on with the fight this has set me right back and I feel deflated and I haven't even started any treatment yet the constant wait for scans then results is driving me mad because what am I waiting for the long I wait with no treatment the worse it's getting I am really frustrated any advice would be very much appreciated
Re: Can we have a forum for "older" people with bc?
Cindy - thanks for taking us to Ireland with you! We didn't have nearly as good weather when we were there. So true about the English's treatment of the Irish - but then I don't think they treated any of their "minions" very well.
By the way Chris, thanks for the referral about New Amsterdam. Certainly true in Virginia too.
Sandy, don't beat yourself up about the "wish you had known." I think you have to go through it to know what to do. We were very fortunate that we have USAA insurance and if anything, we got upgrades with some of the replacement items. But still we had to leave the rental before everything was done and had clothes spread out everywhere because our closet wasn't finished.
Petite - love what you showed us of your cabin. How big is it? How isolated? Looks like lots of forest.
Betrayal - I know Jackie's shoes were big, but thanks for trying to fill them. Sounds like we all appreciate it.
It's been hot here but not nearly as many "over 110 degree days" as last summer. We also are having sporadic rain like the Chicago area is.. The east valley always gets more than we do but the next town over where I play golf got over 1/2 inch this week and we only got enough of a drizzle to make the dogs not want to walk. Almost like the weather was respecting the town boundaries. I've continued to play golf regularly but always early, only 9 and with an ice towel. Ken and the dogs walk over a mile in the morning but other walks are obviously not much.
Belle is still here. No discussion about her return home so who knows…. She's generally a good little girl although is more of a barker than Mutz ever was.
Happy belated birthday, Betrayal. Our 59th anniversary was the 14th. Talk about romance - we bought each other new lamps for our respective offices.
Haave a good week, everyone.
Marge
Re: BCO In Memoriam thread, Part 2
KBL Kris was so helpful, knowledgeable and genuine with her advice. Big loss for our community.
Tanya
Re: BCO In Memoriam thread, Part 2
I always meant to meet up with her in Mt. Vernon but never got the chance. She was posting through 7/31, never recently mentioned difficulties with her kidney cancer or treatments, and mentioned doing all sorts of mundane routine activities like feeding & tending to feral cats as well as her pooch "Li'l Red;" so I suspect it was something sudden and (I hope) painless and/or peaceful related to her cardiovascular issues. She was the glue that held several BCO threads together; and we should continue posting there to honor her.
Re: Can we have a forum for "older" people with bc?
Petite, gorgeous cabin! Enjoy it as the perfect escape.
Betrayal et al, I am beyond furious but it's partly my fault because I relied on our "public adjuster" (who swooped in even as the CFD was still on-site, but I didn't sign the contract with them until I checked out their stellar reviews on BBB). The public adjuster runs interference between insured and insurance company, as well as works with the restoration project mgr. and hires the contractor. I didn't know any better, and now I may have to sue (of course, I have no shortage of colleagues who do this kind of litigation and do it well).
I am indebted to Carrie, our ex-HK, who flew up to help with the pack-in—guiding the restoration guys as to what goes where. We still have two days (and truckloads) to go on that. I wish she hadn't retired and moved south a month before the fire, as she is extremely experienced with this sort of thing: in 2012, her house caught fire when the crack house next door did and the flames jumped the gangway, destroying that side of her house (structurally). She had to have a "gut job" done, but was back in only 9 months. She, like we, had State Farm—and her "public adjuster" was also on-site while the CFD was still working. BUT her public adjuster was on the North Side (ours is in Hinsdale, out in the west 'burbs) and her restoration company is up here in Glenview (ours is in the far south 'burbs). Her public adjuster & project mgr. kept her apprised constantly, having her meet with the contractor and architect. She & her DH were able to drop in unannounced to monitor progress. State Farm used direct-deposit to reimburse them, but our idiot State Farm adjuster insisted on paper checks (sometimes sent to the wrong address—we couldn't access our home over the winter—and one was even stolen and so had to be stopped, reissued and sent here to Lincolnwood). By contrast, our project mgr seemed AWOL and every time I asked him & the public adjuster for progress reports, all they could say was that city permit process was very slow (true) and they were "on it." As I mentioned earlier, the city inspector finally OK'ed the house and issued the Certificate of Occupancy in June—turns out, the house was still not habitable except as perhaps for "indoor camping." The paint job (even before I learned this week it was with the wrong type of paint) and some electrical work was, respectively, sloppy and incorrect.
The biggest mistake Carrie pointed out is the worst and likely to make us wait till mid-Sept to move back: they used flat paint for the walls & ceilings throughout—even in the kitchen and baths. I did not know this, as the last time we painted our decorator (who has since moved away after a dispute and gone under) knew exactly what type to use and who to apply it (the "Jesus People" who were far more competent than I expected)—and it lasted perfectly for 37 years until the fire. She had chosen Benjamin Moore inside & out, eggshell for kitchen, satin for bathrooms, which is why it held up so well for so long. The 3 Stooges (old Polish guys, not disparaging ethnicity or age but just inexperience and language barrier) apparently bought the cheapest contractor-grade flat paint in bulk. We were given the ability to choose paint color, carpeting, cabinet style ("white Shaker") and countertop (black granite)—but were not informed as to brand or type of paint, as it wasn't on our dime (like it had been 37 years ago) but on State Farm's. I was just so relieved that work was finally proceeding that I didn't think to question.
Flat paint is disastrous for kitchens & baths, especially baths w/o exterior ventilation like ours. It can't be wiped clean, and due to high-humidity environments like baths is prone to bubbling & mildew. Bob wants to know why we just can't move in, travel for a couple of years and then repaint—but we explained the damage would have occurred early on and maybe required re-drywalling (and mold remediation) before repainting (and the house would be unsaleable). Alternatively, he thinks we should sell & downsize—but with Chicago area prices still sky-high (and a shortage of available houses) we'd be paying as much as or more than we'd get for the sale, for a smaller home. Not to mention having to winnow down our stuff even more. Rents are also through the roof in Chicago, and I'm not willing to relocate.
I pointed all of this out via texts to our public adjuster (who, during the delays kept telling me I was worrying too much and that we "wouldn't be homeless," as well as not understanding what we deemed unsatisfactory); he replied "you should have complained earlier but I'm working on it." He said he will meet with us this coming week, and I elaborated further exactly what's unsatisfactory; he replied "what is your deal today? I said I'll meet with you this week." When I asked for a date & time, he replied "I don't know yet."
Now I know things are very different now than they were in 2012—exponentially more flooding, wind/hail/tornado damage in northern IL, and fewer available workmen (especially immigrant). But still, it shouldn't have taken this long. When I pleaded with our State Farm adjuster to extend our rental coverage (at the rate they pay, which is a $2K/mo "insurer discount" over what we're charged), he pointed to the policy language which states SF is not responsible for the costs of delays caused by us or the contractor, and said we should go after our public adjuster & contractor. It's my fault for not demanding to see the name of the contractor and its licensure (which I now know are nonexistent), but all of this was on me—managing the progress, dealing with all sorts of administrative shit including utilities, changes of address, and of course my own health challenges starting with my broken foot & ankle last fall. No help from Bob, who just takes out the garbage & recycling and knows even less about household stuff and construction than I do (and I had to educate myself over this past year). His folks, parsimonious as hell, were DIYers but knew squat about how to do it properly, which is why their house was such a pit by the time his mom had died and his dad moved from NY to here to live his final 2 years with us (another horror story I won't get into).
So I will have to insist on the right type of paint and the right brand—and refuse to pony up for it. At least with brand-new flat paint as the surface, no sanding or priming will be necessary before applying satin or semigloss; but latex paint (can't use oil based due to VOCs), even if it dries in 24 hrs, takes 30 days to cure properly (which is why I could still smell it after 6 weeks, likely because it was such cheap stuff). So even if we move back, we'd have to go to the gym to shower and continue dining out for at least a month.
And I never thought about stuff like doorknobs (which were not replaced).
Other than that, Mrs. Lincoln, how was the play?