Can we have a forum for "older" people with bc?
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Elizabeth Kuebler-Ross has always been a huge inspiration to me. This is one of my old time and all-time favorites.
Learn to get in touch with silence within yourself and know that everything in this life has a purpose. There are no mistakes and no coincidences; all events are blessings given to us to learn from.
Elisabeth Kuebler-Ross
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orknitter. so glad you have decided to come in and formally participate with us. I think we are a great group because while we are glad to offer any thing we can to those just starting their journeys, we also concentrate on just everyday getting along. Sharing things, we do or want to do, new solutions for old problems, little poems, funny memes and just celebrating life no matter what is going on at present.
Carole, I hope with all my heart, we all get well and stay well. We all work for so long and it seems all wrong to then have to spend a lot of time trying to stay well. I think I'd still be working if I could and it hasn't been great to spend so much time in retirement having to be somewhere for some sort of treatment for anything. So, today I'm visualizing wellness for all of us.
I have nothing on my calendar for the rest of the week so lots of time to get some things done I've been sort of hoping to do. I try not to actually PLAN. Seems things go awry much faster and easier if I do. If I just move along and don't use date and time so heavily, it goes easier and a lot smoother. I do have that sort of dreaded chore of complete clean-up of cat boxes today. I really love the ones we finally purchased this last time and wish we had one more at least, but they are in some ways a struggle to clean. Lots of parts, two tops that fit over the pan, but also two pieces of a step up tray to go into the box that catches a lot of litter off little feet as they depart the box. Still, they are great if a lot of work. Better than any we have tried to date. We have been rescuers for more than 30 yrs. so we have tried a lot of litter and a lot of boxes.
Canary, I've enjoyed hearing about the hockey. I lived in Detroit, Michigan for 8 yrs. (back in the Gordie Howe/Bruce Macgregor days) and spent many happy hours at the Red Wing Stadium in Detroit. I knew almost nothing about hockey beforehand I married and moved there but my MIL then was a Canadian, so I was destined to the exposure, and it took pretty well. I don't watch hockey anymore but enjoy hearing about it. Stimulates good memories of long-ago games that were so very exciting. There was not much fighting back in those days — mid-60's — although once in a great while.
I hope you all have a fantastic day. Saying hi to Chris, Harley, Taco, Cindy and anyone not yet posting today.
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Thank you all for the warm welcome to this group.
I just got my report back and am trying to make sense of it using the available research. I have a follow-up appointment with the breast surgeon on Monday and oncologist next Friday. The original markers from the biopsy are mostly still holding except for some information related to the stage. The margins are clear, and she went in a second time during the surgery to make sure of that (read from the report). The Oncotype will provide the next steps, whether Chemo + Radiation + AI or Radiation + AI. One sister had a IDC 3mm - no radiation but AI for 5 years. The other sister was IDC 5mm pre-menopause, Radiation/AI both. Oncotype wasn't routine then.
Final report just received:
HISTOLOGIC GRADE: II/III(MODERATELY DIFFERENTIATED)-MITOTIC ACTIVITY: 1 (MITOTIC COUNT: 1 / 10 HPF)-TUBULE FORMATION: 2-NUCLEAR PLEOMORPHISM: 2-3-NOTTINGHAM SCORE: 6 / 9
INVASIVE TUMOR SIZE: 8 MM TUMOR FOCALITY: UNIFOCAL BIOMARKERS (FROM BIOPSY SW25-3199): ESTROGEN RECEPTOR: POSITIVE (>95% OF CELLS, STRONG)PROGESTERONE RECEPTOR: POSITIVE (>95% OF CELLS, STRONG)-HER-2/NEU (IHC): NEGATIVE; ASCO/CAP SCORE 1+ / 3-Ki-67: < 10%
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I never knew how to successfully read the medical reports received during my cancer days. I often go in a medical dictionary and look up almost every word, but frankly, the Avon Navigator (if they are still used) or the others on your team (surgeon and oncologist) should be able to answer any question you might have. I would make a list, so you don't forget anything. Questions will pop up later anyway, but you will get more and more comfortable as you go.
I would not worry about trying to find others with more or less your exact dx. as no one is alike, not in dx. and not in response to treatments. We are so individual in that way so better to get your answers from those who are treating you. Not to say that you can't ask questions here or anywhere on BC. Org but you are a unique person and that will come through everything you do and every treatment you might have. Glad you are through that part and I'm glad that you had two positives and one negative. Triple negative can present difficulties not generally found elsewise. Clear margins - fantastic.
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Thank you @illinoislady this is a journey. I will find out what’s next soon enough. In this moment, I am in a good place. ❤️
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Catherina - there are many, many threads on this site where members are discussing active treatment issues. Look below at some of the categories below. When I was in active treatment I was interacting with lots of other members. Now that I don't have to think about cancer on a daily basis, enjoy threads like this one where we usually discuss everything else in our lives.
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@orknitter and @catherina - I’m so sorry for the reason you needed to join us but we warmly welcome you and are happy to offer support.
We are still living in the hotel and still have a target date of mid next week to move back home when restoration should be complete. The hotel is fine but I miss being in my own home. Yesterday we drove a little ways downstate to a state park we had not previously visited. Weather was around 40 with occasional sun and had a nice hike. Today we headed to Top Golf and hit balls for about 90 minutes. Neither of us plays golf and we are terrible at it, but they have fun games to play and we enjoyed being outside and getting fresh air. The sun was out in full force today and it was so enjoyable so we then went to a local park for a walk. We find that if we get some exercise and fresh air we feel so much better.
Hope all are well. @betrayal -thinking of you and hope you are managing the pain okay.
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hi Catherina
Your results are similar to mine. The Oncotype determined whether or not I needed chemo. My tumor was 10 mm no lymph node involvement and clean margins. ER+100% PR+100% HER-
Took a while to get the Oncotype results. fingers crossed you have a low score.
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I’ve missed so much…but took notes!
Harley, I do enjoy getting out to plays. Glad you’re still on target to get out of the hotel and home. And it’s super you got out to “play!”
Petite, sorry to hear you’re not feeling well. Take it easy! A neighbors daughter has the flu, lots of illnesses going around.
Caterina, welcome to the group. I’ll be 66 this year too, end of June. The genetic testing, I’m of the belief that they may not know all the markers to test. They search for known, but I think some are unknown. Great news on clean margins and ER/PR+, HER2-.
Orknitter, welcome to you too. Not nice to get a 2nd DX, but we’re in your pocket as you need us. I had 5 lymph nodes removed, surgeon said they were a clump so she took them. I’ve had no issues with swelling from fluid, lymphademia (it’s late and I can’t come up with the word!). Hoping you’ll have it easy too.
Carole, stocking up on coffee, no one has mentioned on the news that Puerto Rico makes some very fine coffees - Alto Grande is one. As a US commonwealth it shouldn’t be taxed. I’m more worried about my ASIC sneakers & my Bali underwear! I joked with my gf, we’ll all be commando by this time next year. The dead coyote is freaky. Here our worries are alligators, it’s mating season.
Jackie, your SS shows up about the same as mine. My pension shows up with a few days of SS, so I appear flush with cash at those times. You’re getting way more than your share of rain. The flooding can be very scary. We had some rain today - first time in 99 days, and it was only about 1/4” - but boy a gloomy gray day. Only good thing I can say it wasn’t in te 90’s. I think the high was 79.
Betrayal - nice azaleas purchase. I need to buy 2 as gifts. I’m hoping you’re doing well from your surgery. You had everything set and ready, so hoping it all went well.
Canarycat, those pictures were funny! And I got to see OV break the scoring record too! Glad your rads are halfway done.
Bingo was hilarious if I think about it. At my table alone there were 3 that can’t hear well. Someone gave them daubers that covered the number so well you couldn’t see it at all. Some wins were gift cards, some were socks! I won nothing but enjoyed myself.
Sunday at the Blue Grass Festival - it was about 90-93. The umbrellas were not for rain, it was the only shade. Music was great but I did head inside for the slots and some AC. I lost $40 but it was worth it to sit in AC for 30-40 minutes.
Monday we ladies went out for lunch and had a good time. Prior to meeting up I ran to a UPS packing store to get a price on mailing a box. The price was $99.85! No thank you. Then I ran to 2 different CVS trying to get my allergy meds and struck out at both. Trying again tomorrow.
Today I got a hair cut. The cut looks fine but she curled the daylights out of the ends of my hair. A totally different look for me. Made me laugh every time I saw myself. It’s more curled up than Mary Tyler Moore had it on her show in the 70’s. It will wash out I’m sure.
I put up my Easter decorations. Family will be here 4/11. Going to be a strange one as my niece & daughter leave on Saturday before Easter. I told them to pick which day they want to celebrate. I can cook or we can go out to dinner. Probably no issues with reservations on a weekday celebration. HA! Oh my.
Cooler day tomorrow morning, but heating up to the low 80’s. I hope to get in a walk or a bike ride, maybe both.
Hoping you all enjoy the day!2 -
Always remember, we all have our own opinions and beliefs. We have different ways of dealing with life’s troubles and joys. To survive our differences without hurting each other is what Goodness is all about.
Dodinsky
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Looks like we will have another really pretty day even if on the coolish side. Wasn't as bad (temp-wise) yesterday as I thought it would be. The sun with little if any breeze made a nice difference for us. Cindy, it is very warm where you are. I would think with those temps. the casino should have been seeing plenty of activity. Maybe the yr. round people don't feel as much. Seems to be the way here. Daughter in her 50's complains/talks all the time about heat and humidity. Dh and I don't notice it near as much. Maybe cause we're old or maybe we realized the 'futility' of the complaint and just go on about our business.
As to mail, wow — must have been a big box or extremely heavy. I can't recall the last time I sent a box in the mail. I think Dh has done it a lot, but it is usually a pre-paid return of something he bought that doesn't fit so isn't a 'real ' comparison to just choosing to send something out. Even then, (I must be the laziest person under the sun about things like that) it looks to be a hassle.
Nothing formally planned today. I intended to be a whirlwind yesterday but ended up laughing to myself and daughter about it. All I got done were the cat boxes. They are the nicest we have ever had (and among the most expensive) and I like them so much, but they are a chore to clean. Mainly the amt. of parts to wash and dry. 3 pieces to the boxes themselves, two pieces to scoop and holder, and 2 pieces to tray and top you step up on to get into the box. I also have plexiglass under the box and alongside the wall for the messy kitties. So, that, plus the wood floor(laminate) underneath.
I must think I'm young again when I could do something like that, and three or four other large jobs and then cook dinner and do dishes. I now have something for sure to do today and I'm sure there will be something from today I'll actually get to do tomorrow as well. And this is my saga of an older central Illinois woman. Well, in my defense in my mind I still can do all those things. In my mind, nothing has changed but my age. I guess it's time I own up that there just might have been a couple of other changes too.
Hope you all have a fantastic day, do what you can and no sin connected if you have to save some of it for tomorrow.
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Jackie - the box is large but weighs near nothing. I bought a retirement/65 bday gift for a gf, while it was on a big sale. It’s a straw type beach bag, lined, leather handles & trim, with her initials embroidered on it. It was wrapped nicely in tissue paper, with big brown paper cushioning it. I should have sent it to her, albeit early for the events, rather than to me. As it stands, I’ll be dragging it back to NY in my trunk, and hopefully it won’t be crushed.
Another gf just put in for her SS and says she’s officially retiring- they own a business so I think she’s still going to work 2-3 half days. I ordered her a similar beach bag, as well as a very large beach towel AND sent it directly to her house. My partner, he asked if I’m having it delivered here in FL. No, not this one!
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Question for all of you ladies - I have my annual Medicare wellness exam next month with my PCP. I find them useless but it is typically the only time I see my PCP so if I want to remain a patient I need to see her annually. Her MA always asks if the doctor can audio record our visit. My response has been asking for the purpose (I am guessing to scribe the visit), how the audio is stored and if AI is used. The MA won’t/can’t answer the questions so she just tells the doctor I do not consent as Illinois is a 2 party consent state,
Have any of you had your visits recorded? If so, do,you have any concerns about privacy and confidentiality?
Thanks
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Welcome to all the new ones. We all can give you support and encouragement, just as you can help us not forget. And believe me, it is sometimes easier to forget the roughest times in our lives than to forget the easiest ones.
I have both my thumbs splinted. One handed typing here.
In withdrawal from trazodone. Got an ambulance ride to the hospital yesterday with high blood pressure. They ran some tests and watched me for several hours. Increased my lisinopril, BP three times a day. (always remember the rough times). Warning sign; I found a new source for my writing project, sat down to read it, and couldn't remember anything I had read.
My right "breast" feels almost like my left one! Ecstatic!
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saw the surgeon. The tumor is inoperable. Because of the location, if they did surgery they could not get clear margins and my lung would be unprotected—essentially the cure would kill me. Thus it is at least stage 3. There is concern about Mets to my rib. There is evidence of osteoblastic lesions. The PET scan will determine whether this is from direct contact with the tumor or from cancer cells circulating in the blood. So even if that rib has cancer, it might not be Mets. Of course the PET will be looking everywhere.
The cancer is definitely a recurrence. Er+. Pr +. Her 2 neu equivocal pending FISH.
I’ll get input from the tumor board Tuesday. PET 4/21. Oncologist 5/6.
Not good news. Hoping it doesn’t get worse.
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@owensgrandma - sending hugs your way.
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Owensgrandma, so sorry the news wasn't better. Hoping for some positive developments.
Thinking about Betrayal as she recovers from surgery.
I had a good workout at the gym this morning. First, I did my own circuit of weight machines, exercising my upper body and my legs. Then I walked 20 minutes uphill on a treadmill. About an hour total. On the way home, I stopped at a supermarket and got more exercise walking. I was trying to make up for Monday and Tuesday when I didn't get to the gym or take a walk, even though I could have done the latter.
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Owens Grandma, hugs going your way. We will be with you.
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@owensgrandma I wish you the best as you navigate these waters. @canarycat hoping my Oncotype is similar to yours!
Speaking of Medicare, for those in the U.S. - I am retiring at the end of May and will sign on to Medicare for a June 1 start. Was all cancer treatment/care (radiation/chemo, test etc) covered by your plan choice? I am thinking of signing up for the BCBS supplement/gap plan (Sapphire level). Also, has the pharmacy plan you signed onto covered your treatment meds? Any advice?
Thanks for any insight you can share.
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Owens grandma — count me in too as sorry for your news, but like Carol hoping some positives come as well. We will all be in your pocket sending the best vibes we have for things to be better than they now may seem.
Chris, hate the news about your thumbs, but now the boob news — perfect. Sounds like a super win. Hope the thumbs will turn out the same way.
Harley, I've never had any of my Dr.'s visits recorded, but then I mainly go to the V.A. That said, everywhere else I've gone (outside providers for the VA.) seem to use the same method as the VA with typing the visit on the computer as we talk and discuss things. I am not at all sure I'd be happy if I were asked for a recording session. For some things I have allowed students to view my interactions with some of my medical work but this is a method that the services used to teach. Like being in on a visit with the Ear Dr. They (if students are in the room) get a firsthand view of what an ear with a hole in the eardrum looks like but that is definitely not recording anything. Probably wasn't a great answer for you, but hopefully someone else will have something.
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@owensgrandma those results suck. But let’s hope the rest are positive and some resolve can occur. There’s always a way.
Today is treatment #12 and this afternoon I feel zapped of energy. I think I’ll tank my evening plans and get into “ day pjs” and have a nap. It’s almost 5 pm here. Our weather is changing and not terribly warm out. Today was supposed to be nice and then wet the next few days. So hopefully the weekend is nice and I can check on my garden. This photo is of one room in a fancy market place near me everything is pricey but I like looking around
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Kitty, even though I am full of liver and onions and potato, I think I could take some of that fancy dessert.
Jackie, thumbs and "breast" and heart. I guess Trazodone was controlling a rise in blood pressure, so even when I am off the stuff, I will be on bunch of good old lisinopril.
Catherina, I have BCBS insurance. I am Medicare/Medicaid, and everything is paid. (Except a pair of underpants I wanted to protect my dignity.) My situation is probably quite a bit different from yours.
Owens Grandma, I spent several hours this afternoon with a friend who is in somewhat of the same situation as you. She just recently had a lumpectomy with radiation. However, she has another cancer in her throat, inoperable. She doesn't have the details on it yet. She is 89, bright and caring and fun to be with, and does not want treatment for it. Hopefully it is a slow one. We took Tippy for a car-ride back and forth through town, then out to Wal-Mart. He has been whining so much at the cars in the parking lot just outside the window.
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Oh Canary, I'd be saving my pennies and checking under couch cushions to make sure I had enough to indulge in that pastry room, if I did nothing else.
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Wow - off a few days and see three new ladies. Welcome to the place that none of us want to be as one of our members always says. Owensgrandma, holding you especially close.
As you have noted, we are a chatty group but BC brought us here. I was 71 with no family history. I hope you'll stay with us but I agree that you can get more specific info from other forums with your specific diagnosis and treatment plans. My group, "starting chemo in February 2017" still has a private Facebook account. I'm certainly aware that available treatments have changed even since I was diagnosed.
Canary - do you work in a bakery or just stroll the streets of Vancouver? You are always tempting me to hit the sweets corner. Love the cheery pictures.
Frustrating day for me - still trying to get our bills into automatic payment from my account rather than our joint one. Too many long calls to do what it seems should be simple. Ken always wanted to write a check and convinced himself that if he wrote many small checks rather than one large one, it wouldn't be so tramatic. I, on the other hand, want everything on one credit card or to come out of my bank account from which I pay the credit card after I collect the Amazon credit or the sky miles.
Went for our usual Wednesday lunch date and went to 3 places before we could get served. And spring training season is over!
Very hot this week but I am not complaining. The tornados and flooding look awful and the coastlines are falling into the sea. Be safe everyone.
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Harley, I haven’t had an audio only recording, but I’ve had a tablet on a …like an IV pole, but it held the tablet - while a woman was on the screen. This was at the dermatologist office, and they said she’s the assistant and takes the notes. I found it strange but went along with it.
Chris - oh I hope your thumbs feel better. I’ve slept in the splints, be careful not to poke your face if you need to wear them while you sleep. Also good news that your BP was checked out. Super that Tippy got out for a ride!Owensgrandma, although not good news, hopefully the tumor board will have some good input on how to proceed. ((HUGS))
Betrayal - I hope she’s resting comfortably as she recovers.
Carole, I can relate to finally getting in some exercise. It’s been too hot and I also had bruised a bone in my foot - today I took a 3.5 mile bike ride, which felt great. I’ve had to stop snacking and I’m down 3 pounds. We were eating like we’re on vacation, too many sweets!
Caterina, sorry I’m no help. I didn’t get on Medicare until last June. My cancer was in 2017, and I had private insurance through my employer in retirement.Canarycat, it’s good to acknowledge when the rads wipe you out, and take a nap. Desserts look amazing.
Well, I’m getting up at 4:10 AM to take a neighbor & her husband to the airport at 4:30. And being a night owl, I’m guessing I’ll get less than 3 hours of sleep.
When I get home about 5:30 AM, I’m picking up a different neighbors dog. They’re heading to Nashville for a skating competition for 4-5 days and rather then have them pay $50 a day to board him I said I’d watch him. Should be interesting! He’s a French bulldog and I love the little guy. Only rule is he can’t sleep in my bedroom. He snores worse than my partner, and passes gas that could make your eyes sting it’s so raw. HA! I’ll report as the days go by.
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Thank you everyone for the warm welcome. I have my Savi scout locator implants in 2 days. I don’t know why the one for the lymph nodes scares me but it does. The biopsy there was uncomfortable but not unbearable. And I take my last Verzenio for a while this Saturday. That 6 months feels like a huge accomplishment. I get a break for surgery and radiation then probably back on it pending pathology.
@harley07 My oncologist has recorded the last few appointments. I actually like it as then she can relisten to exactly what I asked as well as any voice inflection. I’ve noticed her notes on MyChart are more comprehensive too.
And hopefully your move is easy.@1946taco I sympathize with paying bills. My husband also wrote checks for everything. Me? Debit or credit card. I’ve found it much easier to track spending.
@canarycat ”Day pjs”, love that.
@owensgrandma Sending a hug your way.
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Just a little bit of the divine:
A warm breeze blew through my window like a gentle wave lapping the sandy shore in summer at low tide, and as I took in a breath of air that blanketed my body like tall grass in a field, I felt for just that moment in time, like I did when I was a child. I felt that I had not one worry, not one burden, nothing was on my mind except that breeze that made the curtains swell like balloons.
Christina Pagliarulo
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Thank you all for your kind words of support. @1946taco I enjoy the chatty and positive nature of this group, it reminds me that life goes on, and to enjoy every day. My work as a hospice nurse has taught me that lesson, but sometimes we need all need a reminder. I have decided to continue working until the Pet scans are back or possibly until I start treatment. It’s good to keep busy during all this uncertainty, and believe it or not my work is very life affirming. I will keep you all in my thoughts and sending hugs your way.
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Good morning. Looking clear now although I've heard some rain could come. I certainly hope they are wrong. We have had plenty lately and I'd like to dry out a lot more. We are still cleaning up a bit from the last storm a couple days ago.
I am hoping it will warm a little bit more too. I have to keep reminding myself we are in that really iffy part of the year where much is possible like tornadoes, loud thunderstorms, extreme temps and one yr. we had 14 inches of snow all in one day. Lots of fast melting the next day till it was gone, but that is how the Springtime months begin here. Anything goes.
Warm healing thoughts to Betrayal and anyone in recovery — also anyone with treatments going on or just dx'ed.
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Good morning, ladies. It is in the 50's this morning and beautiful. I enjoyed my walk. My lab results have come in. All are good, but cholesterol. Oh well, it is what it is. I take simvastatin, for decades, and many it doesn't work any more. Today, I have the grief support group and advance torture yoga. I am feeling back to my normal.
I have never, that I know of, been recorded at a doctor's office.
Welcome to Orknitter and Catherine.
cyber hugs (((HUG))) to owensgrandma
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