CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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The current thinking is that high-grade DCIS is cancer--not even maverick surgeon Dr. Laura Esserman advocates "watchful waiting" or "active surveillance" for it the way she did for Grade 1 back in 2015. My friend who had multifocal Grade 3 ER-/PR- DCIS in one breast and ADH in the other, and elected a BMX w/o reconstruction, doesn't consider herself part of the "cancer survivor community" but instead considers herself "cured" (no chemo is given for DCIS of any grade, no radiation for BMX with negative nodes, and no endocrine therapy for hormone-negative tumors). She has put it behind her and while she admits that Grade 3 DCIS is a "pre-cancer" like a sparking electrical outlet is a "pre-fire," she feels she has nothing in common with those of us on these or any other breast cancer boards or support groups.
Thinking about what may be next for RBG is just too distressing for me right now.
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Given the 10cm's of dcis I had, if they wouldn't have found 3mm invasive, or if they would have dismissed it as microinvasion, I would have been very nervous.
I am sure RBG is also concerned. But Wa Post is saying that the prez's teachers are giving up, and the Trump family is filling the gap. He will eventually go too far, and suffer the consequences.
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chisandy- I'm in total agreement with you on RBG.
Lucy-Cute and funny.
Iris- glad you had a nice visit with your family. Sorry you're paying for it now. Hope your stomach issues resolved itself soon.
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Glad you had a good visit Iris!
I too wish all of the Crazies and everyone lurking here a very Merry Christmas! and let's hope for peace and happiness for all of us in the New Year! Thank you for being here, I count you all among the blessings in my life!
Hugs, Octogirl
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octogirl- thank you for the good wishes. Hope you have a wonderful holiday season. I, too, am very thankful for these threads to keep me informed and when needed grounded
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I turned out to be one of the 30 or so percent of dcis folks that have gone on to have reoccurance with an invasive cancer, lucky me.
So today i get together with my neighbors, hope all here have a .lovely day
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Merry Christmas (and good belated Festivus to the restivus).
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Sandy, you are so funny!!!
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Merry Christmas my crazy town friends.
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And peace to you, Molly....
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may we all have only good tests this year0
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Amen to that!
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that sounds good. Here's to clean tests and minimal SEs from treatments.
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Ditto, jo
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Amen!
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Jo, right on! I have my one year mammo/us coming up in a couple of weeks. Does the pretest anxiety/concern ever end?
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Beavernxt...I definitely still suffer from scan - anxiety before my tests ..but I'm sure the worry time before hand has shortened slightly ..stay with us , and we'll hold your hand while you wait .We all know exactly how your feeling .Hugs
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Thanks, Lucy. At the moment I have family visiting for the holidays and have been feeding 14 of us this week, so I haven't had time to dwell on it, thank goodness. But 7 will leave Saturday (after we celebrate a 13th birthday 🎂), 3 on Jan 2, and the two oldest granddaughters will go back to college by the 11th. The mammo is scheduled for Jan 7 and the radiologist has been very good about sharing her findings with me before I leave the facility so I should (hoping) have relief before seeing my BS the next week.
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Beavernxt..Gosh cooking for 14 for so long is no mean feat !!! It'd definitely be keeping your mind off your tests !!! 🌞
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Beaverntx: no, the test anxiety never truly ends....it may fade somewhat for those of us lucky enough to get a couple of (years of) clear results, but there's always the expectation of the other shoe dropping, the coming to grips with "this is how you spend the rest of your life"
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Thank you, queenmomcat. It feels something like the sword of Damocles at times, waiting to know if the other shoe will drop! Having recently seen the statistics that the peak time for recurrence is 2 years post original diagnosis I'm certain I will continue to be somewhat more concerned until past that point.
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Actually, the peak time for recurrence of triple-neg or "HER2-type," i.e., hormone-neg/HER2+, is the first 3-5 yrs. After that, espec. with triple-neg, the recurrence risk falls to "population risk:" the original chance of getting breast cancer in the first place. For us Luminal A (ER+/PR+/HER2-) gals, it's more like 8+ yrs, sometimes as late as 20-25.
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do you know what it is for Luminal b?
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Hi all! I think I found the tunnel system under CrazyTown. 5 years out and scan anxiety still persists for me. I have to go every 3 months as we are following lung nodules and lesions on my spine. Everything too small to biopsy and I was told, if I never had breast cancer these things would not be followed up on. I am now at CTscans without contrast, MRI on remaining breast has been removed from scans. I have no more usable veins on my non-lymphedema side and have been told I will need an IJ(Intrajugular) or PICC line going forward. They will attempt to draw blood from arm but even that was a no go last visit. The visit prior they blew 3 veins, infiltrated saline on one and contrast on another. As far as recurrence, ILC tends to show up after the 5 year mark and has a different spread pattern than IDC. There is a very informative Facebook group with all the latest medical information on ILC.
Love you all, I read often but have been in lurker mode. April will be one year of living in the new house and that is finally going well. If you ever want to buy a fixer....run....unless you are DIY master. I have done renovations before but everything caused my lymphedema to flare and it didn’t help that the house needed to be gutted. Luckily we had completed everything and were able to refi all of the construction cost back into the mortgage with enough equity to get approved by last September. August was one year of ownership, 7 months of which the house uninhabitable so we stayed in the detached workshop/garage. Thankfully heated and coole
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Sandy, thanks for your input, technically I'm not luminal a. The data/research I was looking at showed peaks at or near 24 months for contralateral and for metastasis. Other peaks were closer to 5 years but two at a time are what I can handle at the moment so I'm choosing the closest peaks as a focus for now! Might not even be thinking about it just now, but my one year marker is coming up and hoping to clear that one and the two year one as well...
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Wow Robin: I don't think I could deal with a renovation of that scale; I admire you!
Octogirl
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Robin..sorry you are having the stress of 3 monthly scans ..and doing the Reno as well ..
Our new build house is nearly ready to move in to ..Have given notice at the rental we're in to move Jan 28 ...Funny thing , after just organising Christmas and New Year's nearly here I'm not sure I have the energy to move house !!!
Octo ..how is your house hunting going ???
Iris ..How's the tummy ?
Beavernxt...I don't really understand how luminal a /b is diagnosed. Would you mind saying why yours is considered luminal b ?
Hi and Hugs to all ..
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Hi Lucy: we may have found the right place this time! In contracts and inspections Monday, so knock on wood they go well! It is in. great area and on a lot of land, but its a small house (has a guest room and bath though :-)). Beautiful mountain views. Fingers crossed, we can move in late February or early March, just in time for my birthday!!
I know what you mean, though, moving can be exhausting...you will love being in the new place though...
Hugs and Happy New Year to all!
Octogirl
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Lucy, as I understand it, I am luminal B because of a relatively high Ki-67 score indicating fairly aggressive growth. Aggressive growth also supported by grade 3. There are definitions on the main breastcancer.org site.
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hmm, not sure i understand the luminal b info, no idea what i was considered, only that my reoccurance hit me like a ton lf bricks and i was about 9 years out
Lucy, tummy still needs pampering but thanks for asking, i have a steak in fridge but not sure if tummy woulc approve
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