Can we have a forum for "older" people with bc?

BatyaD

Hi. I was diagnosed in December; lumpectomy and Sentinal Node (2) removal with clear margins and clear nodes on January 23. Triple Positive. I just found this site and forum and am 67.

I'm struggling with not telling my family about my BC. Mom's 89 and Dad's 90 and stressed out enough about their own aging problems. I don't want to add to their stress. Also, Mom is a boundaryless though wonderful person and arguing with her through every step of my process (and, yes, that would happen) and every appointment would create more stress for me. They live 3 minutes away in the same retirement community. I don't have children, but I also don't want to tell cousins or my brother because it would just get back to my folks.

Right now I'm struggling with the idea of Herceptin+Taxol. I understand the need for the Herceptin, but the idea of dosing my body full of chemicals just doesn't make much sense to me. And I can't find a reputable local doctor to do just the Herceptin. My oncologist said there's only a 6-10% difference in outcome of doing the Her+T vs not having both. How does one make these decisions? Isn't being old tough enough without all this extra stuff?

MCBaker

I just turned 69. I figure I have another 15 years if I deal with this whole-heartedly from the get-go. If I don't, it will likely come back in a few years, and I will go quickly, and probably painfully (or drugged up to oblivion). You are in the same situation.

Taxol and Herceptin. According to my understanding, the Taxol teaches the body that HER2+ calls are enemies to the body, then the herceptin closes off those receptors, and prevents the remaining cells from proliferating. So you need both. If you still fight T & H, talk to them about the anti-hormonals, and what the stats are like for that approach.

You need family support. Your cousins and brother are potentially that support. Address the problem by talking about your parents, their fragility, and your mother's tendency to obsess with other people's problems. Until you have them in agreement with the parental situation, not a breath about your situation. If necessary, enlist the help of a social worker, particularly with your brother.

We are not all that old, and your parents are living proof of that.

Considering the dire consequences for not doing something, taking a chance because of low probability, is foolish. Low probability of getting a cold-- I could take a chance. Low probability of getting a recurrence of a highly aggressive and usually fatal cancer-- I'll do anything to drive that stat down.

Fifteen years vs three years? Fifteen sounds sweet, and with your parents' longevity, you might get twenty.

Wren44

We moved here in 74, so pre Starbucks for us too. I think it snowed the 2nd winter we were here (although it may have been the first). The funniest thing was our black cat's discomfort with being visible at night in the snow. She was not pleased and couldn't quite figure it out. It snowed twice while we lived in Houston. The first and last winters I think. There it was crazier than here - no pretense of work anywhere. Snowmen in front of banks. I think we got about 3 inches overnight after a very wimpy start. Miss the newspaper but can read it online. Not the same as in bed with coffee though.

IllinoisLady

BatyaD, Welcome. I'm so glad you found us here to talk too. I think MC gave you a wonderful answer. I must admit though I would not have known since my dx was altogether different. That is one of the benefits of the BC. Org blog. Someone has answers ( we all have the same dx. generally but with all the different forms it can take ) so someone can give you a lot of perspective.

It did not take me long to choose having chemo. Started out with a VERY mild dx. that got changed to a lot worse after lumpectomy. Not only would I have NOT by that time even considered not doing chemo, I also felt that if I did not do everything I could to force the un-wanted stranger out of my body and life, I would forever blame myself ( if I didn't get good results ) for trying to avoid what is known to give you excellent opportunity for good results.

It is a personal thing. I was not brave enough or strong enough to nix anything I could have. I hope you are able to find someone close to you ( if not family maybe a really good friend ) who can help you sort through things and offer support at times that find you struggling a bit.

Wren, I am so amused ( we have had many black cats -- mainly indoor only ) by your black cat being frustrated by too much white. Likely was off-putting. Did someone say ( oh memory where do you escape ) that animals ( thinking cats and dogs here ) only see in shades of black to lt. gray, and others colors are lighter or darker depending on how they start out. So -- all that white !!! Overwhelming...

HikingLady

BatyaD: Oh, your situation does sound tough. Everything for me is better with truth and also with boundaries. I'd need and want brother and cousins and their love. I'd set gigantic concrete boundaries up for the parent who tries to interfere. If it's not positive support, everything will be harder, so only YOU know best who should know about what you're going through. Sometimes we have to say “nope, not going to talk about this any more," or “well, if you have to treat me that way and say those things, it will cost you our intimacy." Stay cordial but re-establish something of a distance is something I’ve had to do when this has happened in my relationships.

I’m a parent; I’d want to know if my daughter were going through such a hard thing. I have no idea if your parents’ physical and mental health is strong enough for it to be reasonable to share this with them. Also, if they behave in ways that are dangerous (emotionally) and toxic to you, then of course, protect yourself and don’t share. But, if there’s anyway to do so, I’d tell them. Edited versions perhaps, especially when you feel crappy. My own parents are gone now, but when they were around and cognitively able to, they wanted to know my struggles as well as my triumphs.

As a patient, I’veappreciated all the love and support people beamed at me from all directions. It lightened the load.

Wren44

I tried to shovel some snow. Had to come in and rest. I at least got the front steps clear and some of the walk out to the sidewalk. We're supposed to do the walk in front of our house, but I think it would take me several days to do the whole thing. It needs doing, too, because the bottom layer is slushy and will turn to ice overnight. Where are the high school boys wanting to earn extra money?

IllinoisLady

Hope is outreaching desire with expectancy of good. It is characteristic of all living beings. Birds, beasts, and people are always alert and striving for the fulfillment of their hungers. They are impelled forward in a ceaseless quest for satisfaction. The antennae of insects relentlessly explore and feel their way ahead, and the imagination of humans functions in the same manner, ranging through wide areas and far futures in search of the good which hope ever promises. -Edward S. Ames

IllinoisLady

No sun for today. Started raining sometime during the night and as predicted -- we woke up to rain/sleet tis a.m. Won't be going out. Not because of driving which I think might be doable ( just based on how it seems to be coming down ) but because the kitties wouldn't come out so there is no real reason to bother. We are stocked up for any breakfast food we want -- so it will be a lazy Sunday.

Be glad to see future weather later. We are due to go to Marion, Illinois tomorrow to V.A. for Dh's eye exam. Just hoping this is going to be none-lasting after today. Fingers crossed. Nothing else much going on. Sometimes it is nice to have a stay-in together kind of day.

Hope you will all have a good day.

BatyaD

Hiking Lady: Thank you for your response.

My folks could, cognitively, understand. But Mom is so totally stressed out about Dad and how he's doing/not doing that any added stress could easily do serious harm. As long as I'm functional telling them serves no positive purpose. I'd end up needing to take care of them even more, and I don't think I'll be able to manage their emotions in addition to my own. Radiation starts in a week or two (going for scan and radiologist appt Wednesday to see if they can do short-term local radiation). The folks are off on a week-long cruise, so I get some totally free time to think all this through. They tend to second-guess everything, disagree with everything, choose the "other" everything. Just their way of being, but not mine. So whatever choice I make and talk to them about they'll make me feel it's the wrong choice (and if I'd chosen plan B, they'd say Plan A was better). There's a lot of love but there's some screwy ways it gets expressed.

My family would not be supportive in the ways I need.

So for once in my life, I'm putting myself first and trying to make it easier for me. If I had a supportive family, sure, telling them would be the first thing I'd have done. But I can't add on the worry of how they'll react, worry about them telling my folks (because they think it's the right thing to do even though it's my decision), or worry about assuring them I'm okay all the time. I already had a cousin down my throat a few years ago when Mom was in the hospital and I asked for prayers for her on FB, not even saying her specific problem. So, no, not going down that road.

I do have a small circle of friends who are stepping up to help. I'm very, very thankful for them.

And I've been even more appreciative of my parents just the way they are, since this all started.

I know they'd want to know---and they're going to be royally pissed off if they ever find out---but it isn't their choice right now.

HikingLady

BatyaD: You sound very wise. You’re thinking through all of this with wisdom and good self-care priorities. You’ll get through this, and that knowledge of others and of yourself will be a wonderful tool. I think the part about accepting people as they are, but figuring out your own “work-arounds” to stay safe is brilliant. I’ve had to do it myself, a lot. Take good care.

BatyaD

Thank you HikingLady!

IllinoisLady

Wonderful conversation ladies. One of the reasons why this blog is here. No one understands so well but those who have gone through or are now going through this disease process. Also touched by the acceptance of parents. Our paths ( just my opinion ) likely shouldn't mesh too much. More growth is possible when we don't completely agree -- and we hopefully become what and who WE need to be to get through our personal path in life. Our parents are great ( where would we be without them ) but they are affected by things we are not and vice-versa. Our growth patterns were also different and should be. I have always been so grateful for my parents ( not so much in some of the earlier yrs. ) who were not around for my stroke and cancer. They would have been fine about it, but I'm glad they didn't have to suffer some of what they did themselves and deal with me as well.

Hopefully you will both ( BatyaD and Hiking Lady ) take a good path through the care and treatment of this disease. Your choices sound full of deep thought and good responses to the over-all issues that arise.

Wishing you all well.

Wren44

BatyaD, I have to tell you of the funny story about my brother. He somehow had a gash to his leg that was very serious with stitches and needing to be on crutches for a while. He swore all 4 kids and wife to secrecy so Mom wouldn't find out. She was a real worrier and would have gone to town. it all went well until he didn't need the crutches and wasn't limping. He finally thought he could drop by for a cup of coffee. He walked in and Mom said 'how are you'? He replied, 'fine, my leg is all better'. She was, of course, furious. He couldn't be too mad since he'd done it to himself. I had some serious episodes of depression which I never told her about. I think you should go with your instincts. I'm glad you have supportive friends to step in.

Beaverntx

BatyaD, my $.02 worth: it is NOT selfish to put yourself first, especially with all the decisions you are dealing with! Take care of yourself as only you know what your real needs and priorities are.

BatyaD

Thank you Wren44 and Beaverntx.

Wren44 That's my fear - that'll it'll slip out somehow! So far both my Dad and brother have asked how I'm feeling---they never, ever do. Talk about intuition!! Mom always asks, so nothing different there.

karen1956

Batya - this group is a wealth of support - and of course you live time friends. I always say listen to your heart to know the right thing to do. Sounds like you are doing that. And putting yourself first is exactly what you need to do....

BatyaD

thank you Karen 1956. I appreciate all the support from friends online and realtime.

IllinoisLady

Karma isn't luck or destiny--luck suggests randomness; destiny, a lack of choice. Nor is it the voice of the gods trying to keep us in line. Karma is a description of how moral law operates, not a prescription for good behavior.

Joan Duncan Oliver

MCBaker

Give yourself time to make decisions with your doctors. Once your family is ready, they are likely to guess what is going on. Let their intuition be your guide. If they ask general questions, I suspect you know the routine already.

IllinoisLady

Hoping for some sun today but not sure. It does sound like no ice, though I think with how things are ( we usually do better than other areas ) I'm not willing to not be cautious about that. Sounds in fact like it will warm okay but drizzly all day. The water doesn't bother me so much as the gray that is a part of it. Otherwise looking for an okay day.

Dh went out to check on the status of his truck which is in the shop and says the new Dollar General store ( within walking distance of us -- though a fairly long walk ) has a sign on the front -- now open. Today then is the first day. I have been waiting. Some things are at times a fair amt. higher in these stores, but I use caution. My thing is now having the ability if I find myself suddenly out of something I need, I can likely stop in there and not have to go all the way to town. We have two other stores and they are both about the same fairly long distance from where we live -- though in this little spot on the map it is not bad. Still, it should be a real time saver if I'm in the middle of doing something.

Dh will put off the Marion ( I hope ) V.A. appt. until Wednesday. That way we really won't have to worry much about weather. I'm surprised. He usually wants to cure his strong tendency of cabin fever by going almost anywhere at any time. He is hoping his truck gets done today.

Wren44

DH has to go in to see his pacemaker nurse today. He's going to take the bus since both routes he needs are part of the emergency core system. We're waiting to see whether we get snow or rain (probably freezing rain) today. A cold front from the north and a warm front from the south are expected to meet right around Seattle. Which side you're on will control what the moisture looks like.

ChiSandy

Second ice storm in a week tonight--more "wintry mix" tomorrow night and another ice storm for Thurs. Bob had a hellish commute home, not just because of the weather but also because the bridge supports for NB Lake Shore Drive developed cracks and the NB lanes were closed for the entire downtown stretch (and will be through tom'w night until the temporary bracing towers are fully erected). He had to take I-90, which he detests.

Gordy has a new FT job, complete with benefits and a decent salary. (Doing online customer support and ad copy-writing for Vivid Seats). My baby really is growing up!

Batya, I fought the idea of chemo tooth & nail till I received confirmation via both surgical pathology & OncotypeDX that it would be neither necessary nor effective. But were I triple-positive, I'd have been all over Herceptin in a heartbeat--and accepted the chemo necessary to prepare one's system for it.

Wren, in '72, Starbucks opened its second store (the first was & still is at Pike Pl. Mkt.) in the University Village shopping center, across from QFC (which was an awesome supermarket--my mom, when she visited us, stood in the produce dept. and nearly broke down & cried over how gorgeous everything was, as well as the fact that unlike in her Brooklyn supermarkets she could actually inspect & buy a single tomato or apple instead of having to buy four of them shrinkwrapped with only the top part of the fruit visible). Before Starbucks, I drank my coffee "Boston-style," with lots of sugar or sweetener and (skim) milk. One day, they had a giant copper-& brass espresso machine (complete with those brass eagles & levers) for the Christmas season, and handed out free little sample cups of cappuccino, mocha & espresso. After New Year's, the machine was sold to a restaurant; but they began offering samples of the "roast of the day" from an air-pot. I told them I missed the chocolatey mochas, and they said Celebes (now called Sulawesi) had a chocolatey flavor profile that could best be appreciated black, sans sugar. Ever since that day, I have been drinking my brewed coffee black.

But in Aug. 1974, we lived in a motel in Berkeley, CA for three weeks so Bob could attend the Int'l Congress of Genetics. I discovered all the espresso bars & coffeehouses near the UC campus (and across the Bay in North Beach). When we got back to Seattle, it was a Sat. night and I was jonesing for a cappuccino. Last Exit on Brooklyn in the U. District (which, in retrospect, made execrable espresso because it ground its beans several days ahead and stored the ground coffee in a big bowl covered with plastic wrap) was closed for the weekend; the only other place in town with an espresso machine was in Pioneer Sq., and it too was closed. Can you believe that--no espresso, in Seattle? In 1992 I went back for my law school reunion, which was held in Tacoma at the Sheraton. By then the Sea-Tac area had gone coffee-crazy. I remember after dinner at the hotel, I ordered a cappuccino. The waiter asked "Skinny? Breve?" I said "milk." "What size?" he asked. "Regular," I answered. He asked "what flavor?" I replied, "uh....coffee?" He rolled his eyes, then tried again. "What flavor syrup would you like?" When I told him just espresso & foamed milk like God and Italy intended, he hesitated a beat and then said, "You're not from around here, are you?"

IllinoisLady

Integrity is not a conditional word. It doesn't blow in the wind or change with the weather. It is your inner image of yourself, and if you look in there and see a person who won't cheat, then you know you never will.

John MacDonald

IllinoisLady

Oops, we had a bit of rain/sleet/snow a while ago, but it is all quiet now and hope it stays that way. Dh says maybe some sun this afternoon. I don't know about that since I don't think his iPhone weather is any better ( it could be a bit worse ) than my Channel 5 St. Louis weather that I get on my computer. I'll be okay though ( temp 38 it says ) if it quits doing those three things I saw a while ago.

Sandy, I love the coffee, expresso stories. We have gone through 'methods' around here that I truly enjoyed but have become use to our ( 2nd. one ) fully programable Cuisinart set up the night before and cooking as we get ready to sit down for morning news. When I was young I had a coffee pot that boiled on the stove and that was great. Later, I had percolators and that was fine. Then I had a glass decanter on the counter that had paper filter and coffee with water I boiled poured through it. Back to coffee boiled gently on the stove, percolator, then finally the Cuisinart ( started out with Bunn, them Mr. Coffee, ) which seems to have stuck. There are likely other brands of coffee makers -- but Dh could get Cuisinart's at Sears. When this one goes -- we will just have to see.

I drink coffee black, at least the two or so in the morning. My third cup I put creamer in. Early on I was black with sugar -- 2 spoons. Then when I needed to diet I somehow learned ( thought I'd never get there ) to go totally black. Using cream never sat well with me till the flavored creamers. I now use Peppermint sometimes ( usually around the holidays ) and elsewise, Chocolate Expresso or Chocolate Mocha. I've pretty much tried nearly all the creamers and end up throwing them out. Have a Snickers one in the fridge right now that I could use if I run out, but I can't say I actually like it.

BatyaD

ChiSandy--Yup. The Herceptin is going in me, even though they require Taxol with it. Herceptin was never in question for me, though it's only a 6-10% more effective treatment than nothing (that's because my HER2 number is close to the middle mark, just slightly over to positive, and because my small tumor was contained, and nodes ok). Not a big difference. But my "gut," "intuition," Whatever, is gung-ho for Herceptin. They just haven't done the efficacy studies of Herceptin without Taxol (guess Big Pharma doesn't want to pay for it and potentially lose Big Bucks) so the doubling up is a medical assumption at best. Signs of the times. Could be worse.

So funny about the coffee. I love grinding my own in the morning! I used to be a Starbucks Caramel Macchiato addict. Luckily broke that habit a few years back. Then about two years ago my BP started to rise and I made a deal with my GP: Decaf or BP meds. I chose Decaf. Didn't think I could do it, but I did. Then a year ago my liver enzymes went nuts (non-alcoholic fatty liver disease--hey, the rest of me is fat, guess my liver didn't want to be left out) and my doctor said: No more sugar, white flour, processed anything, dairy. (I've been eating better than the angels--at least they get Angels Food Cake--and I don't.) Went to black decaf, which I surprisingly learned to enjoy. I do spend $ on it and get organic yummy blends.

In retrospect, the liver thing was a blessing in disguise (it's back to normal now). My BC was diagnosed early December 2018 and I'm convinced it remained small and intact in spite of being the very aggressive kind because it had NO sugar, fat (except olive oil), pasta, pizza, ice cream, or other goodies to grow on. (I've added back organic Greek yogurt, a treat of organic ice-cream sandwiches---one HAS to have a comfort food!--and a little piece of Dark Dove Chocolate once every few days.) But I still miss my Starbuck's!!!

I hope the weather gets better for all you Northerners. I remember my last winter in Brooklyn--3 blizzards in a row. And I was the one shoveling the stoop! Don't care if I never see another snowflake for the rest of eternity! (except in photos--very pretty in photos)

MCBaker

Not pretty. I think I will skip going to the gym today.

Still busy making headcovers. I have sixteen plus wig, and one in the process in order to avoid wasting fabric from a real disaster. I did a fashion show on FB yesterday, and everyone likes the scarf type rather than the beanie type. I have enough beanies to keep my head warm, now I need scarves for protection from the sun.

I get frustrated when ordering coffee. No one offers dry milk as creamer. Much healthier than real creamers.

ChiSandy

During the earliest incarnations of Weight Watchers, the only milk we were allowed (and in fact had to have 2 servings a day) was powdered instant skim milk. Gross. WW sold little packets of it to put in coffee on the go, and it turned the coffee a disgusting brownish-gray. Real milk, even half & half or cream, is far, far healthier than those vegetable-oil-based non-dairy creamers, especially the sweetened (HFCS or artificial sweetener) and flavored kinds. If my friends come over and want flavors in their coffee, I have syrups (mostly with Splenda, though one or two regular ones).

I actually used to roast my own coffee beans (I'd buy the "greens" from SweetMarias.com)--first in a thrift-store air popper, then in a small electric roaster and finally in a contraption with the shell of a toaster-oven and the innards of a rotisserie (Behmor), with programmable settings. I could do about 12 oz. at a time in it, and friends looked forward to fresh beans from me. But when my FIL lived with us he was very sensitive to even the little bit of smoke the roaster generated; and we have an award-winning roastery (Metropolis) only 5 bl. away. Properly-roasted high-quality decaf should taste nearly indistinguishable from regular--the only giveaway is the lack of a buzz. I make my own espresso (reg. & decaf), and beans 3-14 days post-roast make terrific espresso & coffee drinks, whether reg. or decaf.

MCBaker

I got beans from Sweet Maria's. Roasted them on a charcoal fire in a popcorn popper. Later in the house . With so little control over the roast, I pretty well gave up on it (and the whirly died). Now I have a Cuisinart grind and brew, haven't even tried the grind function. Which is silly, since I have a nice grinder, last used to grind sunflower seeds for smoothies (moderation, please, they quickly become dominant).

IllinoisLady

As I experience it, appreciation of beauty is access to the soul. With beauty in our lives, we walk and carry ourselves more lightly and with a different look in our eyes. To look into the eyes of someone beholding beauty is to look through the windows of the soul. Any time we catch a glimpse of soul, beauty is there; any time we catch our breath and feel "How beautiful!," the soul is present.

Jean Shinoda Bolen

IllinoisLady

I had forgotten about the times we went through grinding our own coffee beans. That would have been when we lived in Santa Barbara and likely had a variety of outlets to choose from to buy the beans. I recall an open market ( burned at some point ) called Piccadilly Square. A couple of steps up would take you into another store area and a couple down into another. Very few walls -- and friends and family I took there always loved being there. It was like a house with an excellent flowing floor plan -- very comfortable space just to walk out of or into the next store.

My brother-in-law gave us our first 'grinder' as a gift -- and we experimented for a long time. I think I just finally became lazy about keeping a supply of beans. There have been several coffees that I like. Right now ( and actually for some time now ) we have been using McDonalds medium roast which is not as 'full' as what they sell in the restaurant. I find that one too strong for my liking and never buy coffee from the restaurant. Medium roast ( reddish label ) in the store for sale is for me just right. I have used a lot of coffees over the yrs. Yuban was always a big favorite. After that Maxwell House. I think ( judging on just which brand ) you have to just find out exactly which amt. adjustments to make so that you get the strength and flavor you enjoy all the time.

Some sun and muted sun today. I don't see limbs blowing so sure hope we don't have decent temps. with a bitter wind to cancel them out like yesterday. I think it should be okay. Our next few days may not be bad. Just would like to not have rain for a bit ( not snow either this late ) because it is nice to dry out in-between.

Hope you all have a wonderful Wednesday. Where have you been Carole ?? On vacation or just busy.