CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Oh, Maribellaz, feeling for you and your news. Try to remain strong. Once we (husband and I) met with the surgeon, reviewed the diagnosis & a treatment plan was formulated, it was easier for me to share with family. Hope that you are able to meet with your docs soon to formulate a plan. Please feel free to express your feelings, questions, rants, etc. here. We all understand.
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Pull up a chair, Mari...we have all been there and are here for you...as others have said, having the plan will help!
Lucy, you will be happy to hear that I am starting to plan a trip to Oz, tentatively in September of 2021...with hubby this time. So, mark your calendar! :-) will keep you posted...
For whoever asked why they couldn't use q-tips instead of the testing swabs...(Iris?)... I don't know the full answer but I've seen pics and those swabs are at least four times as long as your average q-tip: apparently they have to go way back in the nasal cavity....
Hope all stay well!
Octogirl
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Yup--those swabs are quite long because the virus hides out in the nasopharynx (all the way to the back of the nose where it meets the top of the throat). They are wooden, and have to be able to be twirled when they reach "the target." And of course they need to be sterile to avoid being pre-contaminated with (and perhaps introduce) pathogens. Q-Tips won't cut it.
Maribellaz, so sorry you have to go through this in these trying times. We've all been there to one degree or another. When you meet with your surgeon, and are told the type (DCIS, IDC or ILC), hormone receptor and HER2 status, grade, and tentative size (which will give a preliminary "stage"), you will learn your options and be able to put a plan into action.
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yeap, i was the one asking why not old q tips, sort of thought as you said, just on a frustrating day for me I guess. Yesterday was seriously cleaning of my fridge. It is located at a tough spot in kitchen and taking the shelfs out to clean the inside is a real nightmare. But got most done, I just kept resting a lot in between shelves. Still got the little shelf where cheese and deli stuff goes, hope to do without pulling it out as it would be an issue.
Ok, off to lunch, also did a bunch of cooking yesterday, roasted spagetti squash and some chili to go on top. I got eat it all week but more likely will freeze some.
Welcome to the new person and to all, stay in and safe
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Maribellaz - sorry about the lump being cancer. It is hard to hear, but you seem to have a positive attitude and I think that does help. Just seems harder when we all are dealing with the coronavirus at the same time.
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hi -
It’s a bit tough getting appointments w this virus. But most are willing to do a teleconference as soon as they read all reports. I read my report and it is DCIS - I actually haven’t spoken to my gyn he never did call me to tell me the news or go over anything - or refer me to a team of specialists. I’ve had my good friend refer me to her team at Sloan and my former gyn gave me the name to where his family goes.
I’ve got the wheels in motion - anyone know of alternative medicine - ?
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Maribellaz - That is very sad to hear your gyn was not helpful - I would get a new gyn. I got the news from my gyn, she fully discussed what the probable)treatment would be (& this was accurate) referred me to the breast surgeon, who took it from there. In my opinion, while I use alternative medicine for some things, would not rely on it for cancer treatment.
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Hi Meribellaz, I am so sorry you had to join us but you are in a great place here. Lots of combined experience plus a lot of experts weigh in with great information and recommendations. Your situation sounds a lot like mine. I had postponed my yearly mammogram (I had huge dense breasts and never missed a mammogram) in 2012 because we were in the process of moving. I was upset at myself when I found out I had cancer in June, 2013 but I later learned from my breast surgeon there was a good chance it would not have shown up six months prior to the mammogram that caught the cancer. In fact, when I had to have extra films because my regular mammogram had a few suspicious spots, the radiologist told me I was fine and to come back in a year. I asked to see the mammogram so she pulled it up on the computer. I did not like the white line and micro calcifications I saw so I requested a biopsy. The radiologist disagreed with me but scheduled the biopsy because I was concerned. It turned out to be cancer. Had I gone in 6-8 months earlier, it may have been missed. Your initial diagnosis is DCIS, that is very good. With DCIS you are at stage zero, which is good news. It sounds like you have things in place and will be getting your appointments lined up soon. Corona virus or not, it will never go fast enough. YOU want (and need) answers yesterday. Yes, we know that feeling.
Like you, my gynecologist never called to tell me either. The breast center called me to tell me I had breast cancer and they were the ones to set me up with a breast surgeon. They set me up with a very good doctor and I was very pleased. Sloan has an excellent reputation. You will be in good hands. Hang in there, like all the kind ladies have said, this is the really hard part. Once you have your complete diagnosis and a treatment plan in place, you will feel better. We are here for you.
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mari....I go to the sloan facility in Middletown, my onc there is serena wong. I like her a lot and trust her treatment. I am stage 4 now but in 08 i was treated at Hackensack for dcis. Unfortunately I reoccured in 15. My old onc suggested I change to closer to home. Man but that was a good decision.
Not sure which location of sloan you are considering but it is a great place.
Welcome to Crazy Town!
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Octo ..Woo-Hoo !!! We are both very excited that you and hubby are coming to visit !!!! Now we'll have to plan some fun outings to do !!!!
Hugs to all
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hi - I will be going to their NYC location. I would like to have two opinions before anything. The other dr is from Northwell LIJ and I have a video consultation tomorrow. I’ll see what he suggests.
What was your treatment for 08?0 -
Maribellaz, there is new guidance for bc treatment during the COVID pandemic--my own breast surgeon was part of the team that co-wrote it:
https://www.breastsurgeons.org/docs/statements/ASB...
Generally, the goal now is to avoid exposing both cancer patients and their care teams by minimizing in-person doctor-patient interactions and avoiding facility visits--especially with hospital resources strained to the breaking point. They've worked out a "triage" system for treatment (priority A for life-threatening and/or extremely painful complications of MBC, priority B for patients receiving chemo (later-stage or TNBC) or targeted therapies, and priority C for DCIS, early-stage IDC or ILC. The recommendation now for DCIS is neoadjuvant endocrine therapy for ER+, and either very short-course radiation or observation for ER-. They suggest surgery should wait till the pandemic danger passes, and if performed lumpectomy is now preferable (if mastectomy is done, they recommend against reconstruction). Even for early-stage Luminal A IDC with a low OncotypeDX score, the recommendation is just endocrine therapy--not even radiation if the patient is >65. For those who are already in between lumpectomy & radiation (such as my husband's medical partner), radiation can safely be delayed 20 weeks.
Even screenings are being cut back: no routine mammograms, and for MBC patients no routine scans or tumor marker testing for staging. Any treatments that can be self-administered should be (with online guidance if necessary). No more Prolia shots or Zometa infusions, no more DEXA Scans. (Glad I had mine before all this). Treatment of mets should be to arrest progress and relieve pain.
Talk to your team at MSKCC--they may or may not concur, but the surgeons & oncologists who wrote the guidelines come from some of the most renowned breast cancer centers in the US, UK, and Japan.
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maribelle.....my treatment in 08 was lumpectomy, radiation and 5 years of aromasin. In retrospect, it was around the time folks were starting to talk about staying on the meds longer, of course, now I wish I had
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sandy, sounds like what my mskcc doc is doing with me, no pain, last pet was canceled, onc is doing phone meeting, not sure if the chemo will resume the end of the month as I have been off for the last week. Right now, virus seems to have moved south to mid jersey as in my town and county. Maybe they will have me back on one of the pills.
Not what will occure for me end of month as not looking forward to a trip to the hospital for infusion...
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Hello lovelies,
Maribelle, welcome and sorry for the diagnosis during this messed up time. You found a good support here in crazy town.
Iris, I think about you often. Nice to hear that you are doing okay. Octo I vaguely remember something about your tumor. I am so sorry you had to go through that. Sandy, adding your housekeeper and her husband to my prayers. Hi Celia, m0mmy, Lucy and anyone else I missed.
I have a Tele-health appointment with my surgeon on 5/19. Apparently my IPA approved it because I asked for an extension. I can feel the lump pretty easily. I am hoping it's nothing. Sandy I had a seroma as well. Maybe it's that. Anyway being at home with little company is making me crazy. I'm so worried about getting sick that I make myself feel like I am. I saw my grandson and daughter a couple times and let my housekeeper come back so then I panic about feeling under the weather today.
Stress, grief and anxiety over my job and this darn virus is not good for me.
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Maribelle, I'm so sorry that you are dealing with this during these uniquely stressful times. I have been treated at MSK's Manhattan breast center these past five years. I have received nothing but good care and have been especially grateful for the united approach to treatment. Their insurance department is excellent and proactive. Good luck to you--let me know if you have questions.
Sandy, I hope your housekeeper and family are okay.
Molly, hoping your telehealth appointment is helpful.
Glad things are going well, Iris.
We're doing okay, just waiting it out like everyone else. We had a diversion the other day: 20-year-old son--now home and doing college online--went into the park for an early morning run, as he's been doing every couple of days. He came back a few minutes later and said he'd been bitten by a dog, with a bleeding half-moon on his calf where the animal had actually broken the skin. He found rabies info on the CDC website, and we called his former pediatrician, who said wash it, use antibiotic cream, let us know if you want an appointment. The next morning he went out at the same time that he'd been bitten and found the dog and its owner, who confirmed that it was up-to-date on rabies shots. The bite is healing, and my son is going to avoid canines with strong herding instincts in future runs.
Thinking of you all. It occurs to me that the world has become Crazy Town, and Crazy Town is the world.
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Rainny, glad to hear it turned out OK for your son.
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rainny, that is terrible about your sons dog bite. 2 of my nephews and one of my neices all had dog bites as they were growing up. I confess I am very cautious when I see dogs, only ok with if someone has them on a leash anc controling them.
I agree, the Msk insurance staff is amazing. I have never had an issue or payment question with them. Once when my onc prescribed new med....blood thinner......pharm thought my payment too much and researched my insurance for any help, he came back and said you have a good part d plan. Course i do go into the catostrophic thing due to all my asthma meds
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Molly, when I found my "lump" on the 4-yr-old scar this Oct. I totally freaked out. My MO got me in to see my surgeon right away, and she in turn sent me for an ultrasound. The radiologist probed it and said "I think I've got some good news for you, but let's take a close-up mammo just to be sure." After that mammo, he called my surgeon into the room while he did another ultrasound. They showed me the screen, and the mammo film: an extremely shrunken tumor-cavity seroma, totally surrounded by contracted scar tissue! My surgeon even discharged me from her care, and my June 2020 annual routine bilateral screening mammo has been moved back to Oct. (And under the new guidelines, perhaps not even then). So take a deep breath, and in the words of Peter Pan (from the original musical) "now think lovely thoughts." Bet you'll be fine!
Rain, whew on the biter not having been rabid! Herding dogs do tend to nip to get their charges to "congregate" and move together--and that dog probably thought it was just doing its inborn job. (Gonna warn my son, because his dog is a Jack Russell/cattle dog mix). But good call on the antibiotic--always indicated for a bleeding pet bite. (I say this having on the receiving end of two cat bites, one on my face).
Saw my housekeeper yesterday--she came over while her DH was in dialysis so I could slip her paycheck through the door. They're both feeling great--in fact his appetite is back with a vengeance!
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Hopefully that is the case Sandy but I have implants after mastectomy so not sure if I would still have anything leftover from the seroma.
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Hi Ladies..hope your all ok...with so much going on, and with such a big family there is always something happening...Then with this virus nonsense..stuck in the house etc...its enough to drive one crazy.......well through all of this I had a birthday....85 years old, and my kids were so upset they could not be with me..but I have to show you there solution for getting it done..
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Ducky, I logged in to see your post and it was removed. I hope all is well.
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ducky, where've you been? Bummer that you deleted your post. We miss you.
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Well we have had a bit of good news in my state. Hospitalizations are dropping, this trend started started late last week! Hoping it keeps up!
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M0mmyof2 - That is good news for CT. My sister lives in Fairfield County (Stamford), which has had very high numbers.
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IL has moved up to #4 in the country for confirmed cases. Of course, that's because we've ramped up testing past the 10,000/week goal--the proportion of tests-to-positives has fallen from 21% to 17%.
Sorry, but I'm staying put. Nobody can put a gun to my head and make me (or anyone else) eat in a restaurant, buy clothes & tchotchkes we don't need any more (much less try on what's been on other people's bodies), get my hair & nails done, attend events (or perform at them) or travel for vacation. I'm not laying down my life for anyone else's lifestyle, leisure or looks. NOBODY should.
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Celia, I’m in the northern area of New Haven county. My county is not as bad as Fairfield, but it’s pretty high here. The third highest county here is Hartford county. I am so disgusted by the idiots that are protesting to reopen the state too early. I am not happy about the situation, but if the measures we are under help with a decline in cases, so be it!
I can wait for the hair salons to reopen. My stylist (and friend) texted me yesterday to check on me and to say that she’ll be ready to do my hair when the salons open again. I reassured her that it is on my list as soon as I hear they are open. They don’t do walk-ins, appointments only! She was thrilled and said she couldn’t wait to see me again. She’s the only one here that I will allow to do my hair. Told her my bangs were irritating the daylights out of me as they were well past my nose and constantly getting in my way, so I trimmed them with a pair of embroidery scissors.
I’m hoping that my eye doctor will be among those to open safely first. I know I am probably going to need new glasses.
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We are doing a slow opening. I have given my dog home grooming, but he refuses to let me do anything around his eyes. Inability to see his eyes has interfered with my relationship with him. I found out last night that groomers will be allowed to do curbside pickup, and I told Tippy that this was going to an occasion to celebrate.
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Nice!
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Our state parks are reopening (with social distancing and a 2-person-per-boat limit) on Friday. Garden centers & nurseries too--good thing, because my basil plants died overnight from being rootbound. Need more, plus soil and bigger pots. My little pharmacy/deli hasn't called to tell me they got their letrozole in--I refilled it Fri., they said it'd be ready yesterday,. and I wasted a trip there & back. They said they'd call and deliver it to me today. Still waiting, of course. I have 20 pills remaining from my original NovartisUK Femara stash (exp. date 4/19, but MO said in a pinch it'd be ok for an extra couple of years). If there's a shortage of this drug now, my decision on when to stop taking it might be taken out of my hands. (The other two AIs are inferior, acc. to my MO, and more expensive. And Tamoxifen is not an option, period).
This a.m. I began to get up to feed the cats and found Happy had thrown up some clear frothy fluid again (had been several weeks since he'd done so). Cleaned it up, disinfected the upstairs bath, and crawled back into bed when Bob said "Don't go into the kitchen." I asked him why, and he said "when I went down for my snack during the night, a jar of marmalade fell out of the fridge and broke." I asked him if he had at least picked up the biggest shards of glass (I knew he wouldn't even try to clean up the mess itself) and he replied, "no, but I was able to stop the bleeding and take a shower." Say WHAT??? "There are bloodstains on the floor," he added as an afterthought. (I just bought him comfy house slippers but he doesn't bother to wear them). I freaking hit the ceiling--it's bad enough that he goes downstairs in the middle of the night and eats sloppily like a bear at a campsite, tearing pieces of cheese and cold cuts with his bare hands, leaving crumbs everywhere, not even putting his dirty dishes in the sink or paper plate in the trash. But this--especially after cleaning up cat vomit again--was the last straw. "Don't worry," he said, "if you show me where the stuff is to clean it up, I'll do it." Yeah, right--I had to figure out how to clean it and what to use, because this was a first. How could I show him if I didn't know exactly what to do? I stormed back downstairs, grabbed the heavy-duty rubber gloves, the Swiffer Wet Jet, vacuum cleaner and paper towels. Took me half an hour. Then it was time to disinfect the downstairs surfaces, unload the dishwasher, feed the cats, go to the bathroom,take my pills. I was up nearly 2 hrs. before I could even make myself a cup of coffee, much less lunch.
My sole consolation is that these days, even celebrities have to do their own housework, laundry, and homeschooling.
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