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

IllinoisLady

I ( like any normal person ) don't want people to die because they can't get needed medicines. On the way here I 'noticed' a headline which I didn't read just because I already know it happens. That was about an elderly couple who committed murder on their spouse and then took their own life because they couldn't afford to stay alive -- no money for their life-saving prescriptions. Some do/are able to get some of their prescriptions from Canada. But I MYSELF DON'T think U.S. citizens should HAVE to do this to stay alive and I fervently hope that this terrible wrong will start to be set right. We need change from the top on down. Here's hoping.

IllinoisLady

When indeed shall we learn that we are all related one to the other, that we are all members of one body? Until the spirit of love for our fellow people, regardless of race, color, or creed, shall fill the world, making real in our lives and our deeds the actuality of human brother- and sisterhood, until the great mass of the people shall be filled with the sense of responsibility for each other's welfare, social justice can never be attained. -Helen Keller

The first peace, which is the most important, is that which comes within the souls of people when they realize their relationship, their oneness with the universe and all its powers, and when they realize at the center of the universe dwells the Great Spirit, and that its center is really everywhere, it is within each of us. -Nicholas Black Elk

Wren44

I think I remember congress passing a law that forbid Medicare trying to get discounts on drugs in their formulary. All other nations do it and the drug people think we're stupid for not doing it. Just goes to show who is bought and who isn't. The couple who committed murder/suicide was very close to here and ironically, pretty close to the Canadian border. I can see why Canadians resent people from the US coming up to buy drugs.

I'm also suspicious of the NRA influence. They may not be as big and scary as we think. My BIL was a member and it took us 4 YEARS after his death to get them to stop sending him mail. I'm sure that they counted him as a member all that time. They have obviously scared the leader of our country who is afraid to cross him in any way.

IllinoisLady

People can learn to study their life force in the same way that a master gardener studies a rosebush. No gardener ever made a rose. When its needs are met a rosebush will make roses. Gardeners collaborate and provide conditions which favor this outcome. And as anyone who has ever pruned a rosebush knows, life flows through every rosebush in a slightly different way. -Rachel Naomi Remen

carolehalston

I take the Benicar generic and the maximum cost is $10 a month on our BC/BS medical plan but we pay $300 a month for the plan in addition to the medicare $200 plus a month. Glad we can afford more than $500 a month for medical and pharmacy coverage at age 76 and 80. When I first started taking Benicar, there was no generic but my PCP gave me a card from the company that allowed me to get a reduced price. She's very good about helping her patients afford meds.

All my meds now are generics and many of them are cheaper than the $10 a month maximum. I use Walmart and Sam's Club.

I understand Pingpong's resentment. There's no reason medical care and meds should be so expensive in the US. Our country is a great example of the rich and powerful running government to their own advantage and profit.

IllinoisLady

At long last the promised rain arrived. Some time during the just before daylight hours. I mainly knew at first because Bill was pacing -- a sure sign that something ( even if I couldn't see or hear it yet ) was coming. Then the lightning started. It is almost 9:30 a.m. and according to Dh should be stopping soon. Well there are flood warnings out in several places. I wouldn't mind if it stopped -- so I could go feed my cats. I laid in a stock of wet food which I had taken off the menu a while back. The rains never came and I felt they needed the moisture from the food. They likely have a watering hole someplace, but since I wasn't sure I chose to get the 'wet' food for them.

My meds ( save what I buy on rare occasion cheaply myself from Walmart ) come thru the V.A. Pharmacy. It is about $30.00 per month. They send a 3 month supply so I can break up my payments accordingly so it all works out. I'm fortunate that they are able to get meds at good prices and in the last couple of years the cost has actually gotten a bit less. Everything I take is generic and I don't seem to have any issues with any of it.

I hope you are all going to have a good day. Hope it will be pleasant and no storms or serious heat.

CherokeeLady

Hey Boomers,

I'm 64 and was diagnosed with IDC last month (Stage 1A, Grade 2, ER+, HER2-, non-palpable 5mm growth, left side). On Wednesday, August 14, I find out for sure, but it looks as if I'll be having IORT (intraoperative radiation therapy during lumpectomy) within a month. Anybody here Been There/Done That?

Hope to continue my full-time job as college professor, maybe with some online teaching days and light duty for a while.

Sending positive thoughts to each of you.

IllinoisLady

Welcome CherokeeLady. A part of my heritage is Cherokee as well. Sorry that you had to "find" us due to dx. and hopefully someone here will be able to help with your questions. I am so far back ( 2007 ) I don't think I could be of much help. I do know many people have been able to go thru their treatments w/o much upset to their jobs/daily routine. I hope that will be a part of your story. At any rate -- we are here to help each other through. Love, encouragement, shoulders to lean on and whatever lightens the load.

Your can do spirit is shining out so hoping you get all the answers you need. Hoping for the very best for you.

Beaverntx

Cherokee Lady, I was well retired as a college professor before my BC diagnosis and treatment but I believe I could have handled teaching, especially with online so I could have paced myself. Might have begged off committee work, though. It is a little hard for me to say for certain because since I was retired and had surgery during a very bad flu season, I basically only went out of the house for doctors, treatments, and some trips to the grocery store to alleviate cabin fever for a couple of months.

May you heal as well as I have. My breast incision is almost in the crease at the base of my breast and it has healed so cleanly the technician had to search for it when I had a mammogram a few weeks ago!

Keep us posted on how you are doing and feel free to PM me if I can be of any help.

ChiSandy

Welcome, CherokeeLady! My diagnosis (including age) was identical to yours, except that mine was right-sided and more than twice as big as yours. Before my lumpectomy, I asked my surgeon about IORT, but she said my hospital didn't offer it. (Surprising, as it's the north side flagship hospital of the largest hospital system in IL--NorthShore's part of the U. of Chicago Medical School--and affiliated with the Mayo Clinic). She said, though, I'd almost certainly be a candidate for the 3-week targeted radiation protocol, and it turns out I was. Here's hoping you get good news on Wed. With a tumor as tiny as yours, IORT would probably be a breeze.

Pingpong, I was disgusted to hear that officially making it legal for us to buy drugs in or from Canada was you-know-who's idea. For the longest time now, even though it's illegal, the DOJ and FDA have practiced "discretionary enforcement" looking the other way when Americans import up to 90 days' worth of non-controlled prescription drugs for personal use. (That includes drugs that are OTC in the E.U. but Rx here). I used to bring home Ventolin inhalers and diclofenac patches & gel from Europe as souvenirs. In France, an inhaler costs 7 euros--here, it's up to $50. And diclofenac (Voltaren) gel is available in the pharmacy aisles of European grocery stores.

Bob & I discussed it, and decided we would just check GoodRx first when it's time for a generic Benicar refill, and if their coupons were even twice what it costs in Canada we'll just use the coupons and go to Canada purely for enjoyment. (Maybe try to find my second cousins--who lived in Montreal when I was a teen, and according to the paternal family tree the Parisian genealogist made, are still alive. I'm still amazed that at least on my dad's side, I have more cousins in Canada & the UK than here in the U.S.). If the GoodRx is too expensive, I will probably order online from Canada. Or see if I can get equivalent BP control on generic Hyzaar or Avalide again (my insurer back in the day--2004--suddenly refused to cover Avalide, and at the exhibit hall at the ACC convention in San Diego I got mfrs.' co-pay coupons for Benicar and Dexilant--which made my co-pay zero until I got on Medicare; but co-pay coupons can't be used with Medicare PartD supplement plans--even though the latter policies are bought from commercial insurers).

IllinoisLady

Compassion, in which all ethics must take root, can only attain its full breadth and depth if it embraces all living creatures and does not limit itself to humankind. Albert Schweitzer

Live one day at a time emphasizing ethics rather than rules. Wayne Dyer

A person without ethics is a wild beast loosed upon this world. Albert Camus

pingpong1953

Sandy, check Canadian drug stores for Voltaren. I'm sure I've bought it OTC. I grew up in Montreal - if you've never been there, you really should see it. (I'll be going in March for the World Figure Skating Championships - yay!)

IllinoisLady

Long day today. Just got home about 15 mins. ago. Left around 10 a.m. Dh did something to his eye so we first went to Mt. Vernon V.A. Clinic to see if it was an easy fix, but knowing it likely wouldn't be. So, we stopped in the far end of Mt. Vernon for something to eat, and then on to Marion V.A. They have the right equipment and Ophthalmologists and Optometrists there. Turns out ( ssshh ) he likely wouldn't have had a problem had he used the eye 'gel' recommended for night time use. Seems that his eyes get matter and tend to stick together in the morning. Somehow he managed to irritate tiny nerves in the eye making it feel like something was in it. Had he waited it likely would have cleared on its own.

So lots of catch-up for being gone all day. It was, even if a bit hotter then I like not too bad outside and the next few days won't have humidity while being in the 80's so nice for a bit.

ChiSandy

Pingpong, when I was little, we drove up from Brooklyn to Montreal to visit my cousins a couple of times. Last I saw them was when I was 18 and my sister & I flew up there to meet up with our parents, who had taken a driving vacation through the Maritimes. I didn't go back until Folk Alliance Int'l was held there in 2005...this time in the dead of winter. I'm glad I bundled up the night before flying home and walked first to a little brasserie for a Champagne choucroute, and then Ben's Deli for a huge hunk of cheesecake (their smoked meat was in the convention center's food court). I just could not bring myself to try poutine--and to this day, I never have, despite it having become a hipster foodie "thing" here five years ago. In 1983, we drove with our BFFs from Chicago to Wolfville, NS (20 hrs, with only pit stops and changing drivers, to Montreal where we overnighted) to visit her folks and then back through Brooklyn & Queens to visit mine & Bob's. Folk Alliance was in Toronto in 2013, again in Feb., and again we were basically hermetically-sealed into the hotel & conf.center. But when we lived in Seattle, we visited Vancouver & Victoria every chance we could get (especially for Sunday dim sum brunch in Vancouver). Went back there again in 1988 & 1989--the latter time, after leaving Tsawaassen on the mainland for the ferry to Sydney, we drove to Victoria and stayed in the grand old Empress Hotel, where, when we were poor grad students pulling into the harbor on our first ferry trip, we never dreamed we would be able to stay one day.

That last time we were in Vanouver, our BFFs were in Wolfville, NS to celebrate her mom's birthday. This was before cell phones, so I found a pay phone to wish her a happy birthday--we marveled that I was calling from one end of Canada to the other!

I was crushed to find out that Ben's is no more.

IllinoisLady

If you summon your courage to challenge something, you'll never regret it. How sad it would be to spend your life wishing, "If only I had a little more courage." Whatever the outcome, the important thing is to take a step forward on the path that you believe is right. There's no need to worry about what others may think. It's your life, after all. Be true to yourself.

Daisaku Ikeda

CherokeeLady

Thank you for your replies. It has taken two entire days, but finally I have some answers to my questions and a schedule.

Am not entirely sure how I feel -- as many of you have said, it is something of a relief to have "a plan" and get things scheduled. On the other hand, now it is SO REAL.

Here's what I learned:

Monday, Aug. 19: Ultrasound-driven seed placement for lumpectomy (usually done 2 days pre-op, but my teaching schedule did not permit)

Wednesday, Aug. 28: 1st, blue dye injection for sentinel lymph node mapping

2nd, IORT (lumpectomy with intraoperative radiation) under deep monitored anesthesia (a 60-90 minute procedure)

3rd, one-hour or longer observation and check vitals

4th, released to go home (must have driver)

Prayers and healing thoughts very much appreciated!

DorothyB

CherokeeLady - prayed for you!

CherokeeLady

DorothyB, thank you!

IllinoisLady

CherokeeLady....everyone here will be in your pocket and with you through-out. I can't speak for every last person, but once you have actually started the work of taking care of your dx. you don't feel as captive to the disease and the un-knowns. When you are able to do the things that will help, you will be more in charge actively.

We will all be wishing you well and sending positive energies, prayers, and relief full of comforts for you.

ChiSandy

In your pocket, CherokeeLady! Interestingly, I had everything done the same day: first, ultrasound-guided radioactive locator seed placement followed by confirmatory mammogram; next, isotope injection into the nipple for sentinel node mapping; then (after a wait) nuclear imaging--the tracer hadn't traveled far enough so I had to massage my armpit for 15 min. (at least they had a nice Americana mixtape to pass the time), and then a successful rescan; short meeting in my "roomette" with my surgeon, who showed me the mammo; then, after swallowing a Zantac and getting some Versed in my I.V., off to the O.R. Next I knew I came to in the recovery room, and when I replied "yes" to whether I was in pain, they squirted what was probably medical-grade Fentanyl into my I.V. and wheeled me back to the roomette where my family was waiting. After vitals, they served me some juice and a mini-bagel & schmear (coincidentally breaking my Yom Kippur fast), a couple of regular Tylenol, and discharged to home---on foot, to the parking deck. In at 7 am, out by 4:30!

Of course, I didn't get radiation till 6 weeks later--after OncotypeDX, genetic counseling & mutation testing (negative, whew!), healling, and CT mapping.

Pingpong, I've never seen competitive figure skating live in person. Have fun! (I did attend the 1972 US track & field championships at the U, of Wash. Got to see such luminaries as Willye White, Francie Larrieu, and Frank Shorter. On the way home from Husky Stadium, Bob & I jogged along the cinder path that had been an old railroad right-of-way. Suddenly, I felt a rush of air, like a gust of wind, as someone blew past us, and I saw the number on his singlet and familiar ball cap--it was Dave Wottle, who'd won gold in the 800 meters.

carolehalston

Wishing you the best possible recovery and outcome, CherokeeLady.

IllinoisLady

Prayer is a force as real as terrestrial gravity. As a physician, I have seen people, after all other therapy had failed, lifted out of disease and melancholy by the serene effort of prayer. Only in prayer do we achieve that complete and harmonious assembly of body, mind and spirit which gives the frail human reed its unshakable strength. -Alexis Carrel

IllinoisLady

Hmm, I think another time when I just chose because it said something to me and it may work well for CherokeeLady. I hope so. I do happen to believe it as well. Good thigs happen when body, mind, and spirit are in sync with each other. A state that is good, but sometimes elusive. I don't consider it religious but a way to focus on giving yourself the tools for getting as good an outcome for anything that you need.

Pleasant today -- cooler and no humidity. I can do it. Hope you are all going to have a wonderful day. Saying hi to Anne, Joan, and any who haven't posted lately. You are all in my thoughts.

Puffin2014

Sandy, my high calcium level was also because of a parathyroid problem, officially diagnosed with a 24 hour urine collection.

CherokeeLady

I agree -- prayer is powerful.

CherokeeLady

Hello Pink Warriors!

Did anyone here have a lumpectomy without radiation? I keep coming back to the idea of surgery without radiation. If you have had this experience, how did it go for you?

Would like to hear the story of your journey. IORT recommended for me, yet I still cringe at the thought of more radiation (past five months I've had 6 or more x-rays, mammograms, scans, etc.).

DorothyB

I'm 61. I hesitated at the radiation earlier this year, but felt like I needed to do that. Then the re-read of the surgery slides showed lymphovascular invasion so was glad I was doing radiation. When I was talking to the rad tech that did the set-up, I was asking about the amount of radiation w/ the x-rays they do frequently during the period of the treatments and was told that the amount of radiation in an x-ray is like a drop in the cup compared to the radiation treatments. I did opt out of chemo w/ an oncotype score of 29.

HikingLady

CherokeeLady Maybe it would make sense to have your oncologist clarify all of the risks and benefits with percentages, so that you can make a super-informed choice? I'd ask what benefit is added with radiation, against a future recurrence, and what the risks are for radiation.

For me, it made a huge difference in expected outcomes, and was considered the "full" treatment. Skipping radiation after my LX would have raised my recurrence risk a lot.

In 2003, my breast cancer was completely cured by having a lumpectomy followed by about 7 weeks of 5 days a week radiation, which took just 10 minutes each time. The full treatment for my best chance of being cured was to add radiation after the lumpectomy. For my diagnosis, a similar future cure/no recurrence could have been achieved with a mastectomy instead. The two options had equivalent success for my exact diagnosis, which was a small tumor and low grade and not next to anything worrisome like ribs or axilla, etc; therefore easy to get clean margins with the lumpectomy. I also had the sentinel node biopsy and dye tracer and the seed placement, and went home the same day. They do frozen "sections" and path during the surgery to check for clean margins and lymph nodes being positive or negative along the way; that's all fairly standard protocol for lumpectomies.

I was totally, completely, absolutely cured with that treatment. Unfortunately, I did get another breast cancer 15 years later, but the first one was absolutely cured. #2 cancer was unrelated, new, and with completely different path. markers.

Radiated breasts are full of scar tissue, in the skin and also in the pectoral muscles. The breast is firmer. There's compromised blood supply. EVERYTHING about breast cancer treatment can put us at risk for lymphedema (surgery, radiation), but I have never had that particular complication. Still, it's important to know about this possible risk.

My radiation in 2003 did (adversely) affect healing after my BMX 15 years later. Healing on that side was slower, but it eventually did heal. However, I got to keep my breast all those years, and I'm glad I did have a lumpectomy in 2003. I'm also very glad that I had the "full meal deal" of lumpectomy followed by radiation, since it absolutely cured that cancer.

I was not offered the option of IORT ---I'm not sure it existed in 2003, or maybe it wasn't the best TX for my DX, but it sounds easier to manage than the daily radiation for all those weeks.

ChiSandy

My former office manager (or should I say the manager of my former office) had a lumpectomy for early low-grade IDC about a year before I did. She was 72 at the time, and did not have radiation, just letrozole. (She passed away suddenly at a 74 of an unrelated heart attack--probably brought on by stress because she was in & out of the hospital with kidney stones most of the latter part of her life; and had to take care of her husband--my former boss--after his massive stroke a couple of years before her cancer).

I was diagnosed at 64 with Stage IA Grade 2 Luminal A (ER/PR+/HER2-) IDC, OncotypeDX 16. Had a lumpectomy & SNB, Didn't have to "opt out" of chemo, as my MO said it wasn't appropriate for me. But there was never any question about radiation--the only decision I had to make was between the standard 33 treatment+5 tumor bed boosts 7 wk whole-breast protocol vs. the 3DCRT hypofractionated 16 treatments just to the tumor bed. As I qualified for the latter, I chose it. My RO had just completed taking part in the clinical trial and assured me that overall survival stats would be identical at my age with such an early Luminal A tumor. Earlier this year, another study found that disease-free survival was a bit shorter (not significantly so), but overall survival was still identical.

carolehalston

We're dusting off the bicycles today and transporting them to a town along the Heartland Bike Trail. It won't be a long ride for someone who is a "serious" biker but we'll probably bike 10 or 12 miles and have lunch afterwards. Our reward!

Happy Friday.