Best Of
Re: Scans- the anxiety never fades
Hi Candy. Yeah, I need to fill out my profile. Yes, I’m bone only. My CT results just came in- all stable. Now I can exhale. My MO is fine doing it only once a year, but always gives me the option to scan pretty much whenever I want. I usually do every 6 months. I’m still on Ibrance and Femara and have been since 2017.
The crazy thing is, when I was very first diagnosed stage 2A, Ibrance was still in clinical trials and would not have been available. When I was dx stage iv in 2017, I started on it right after having a spinal fusion. They found a tumor wrapping itself around my spinal column. My neurosurgeon told me that if we had waited only a week to operate, I would be in a wheelchair now. It had wrapped itself around so tightly that it would have taken my ability to walk. I’m grateful every single day that I can get up and go about my normal day on my own two feet. Pretty scary when I sat and thought about it.
Re: Can we have a forum for "older" people with bc?
Quiet day here. It was sunny and temps in 70's, but I was keeping busy indoors. I clean the bird cages on Sunday and then have to vacuum the kitchen area because of the feathers and seed droppings. I tried my new Shark stick vacuum and love it. Took a minute to figure out how to empty the collection chamber, but finally figured it out.
Back still goes into spasm, so after vacuuming I soaked in the tub and did my knee exercises. Then I just dusted the primary bedroom and swept the stairs. So just minor housekeeping today.
Tomorrow I have pain management visit to see what they can offer for the back spasms and I am hoping for relief. It's been 3 weeks since they started and while they can quiet for an hour or 2, they still recur.
I was watching The Pitt on HBOMax and it is a great series. There are 15 episodes that cover a day, hour by hour, in an emergency room in a large city hospital in Pittsburgh. Goves you an insight and look at why ER's become backlogged. Season 2 won't be available until January 2026 and I intend to watch it then.
carole, glad you rang in and I wish you a safe trip home.
Hope everyone had a great day. Waving "hi" to everyone.
betrayal
Re: Can we have a forum for "older" people with bc?
I have been reading but not posting. We plan to head south next Monday, the 29th. I am ready to get back to my house. I never look forward to the transitions, packing, traveling, unpacking, settling in.
We had a text this morning with sad news that dh's cousin, Cal, in Holland, MI, passed. He was 94 and was ready to go. He was one of dh's few surviving family members older than dh. Sadly, Barb has Parkinson's now, after a long life of needing no medications. Her exercise was swimming.
Taco, I empathize with the challenges of being an older person, an older wife.
The leaves seemed to start turning beautiful colors almost overnight. Golden hues are predominant, but some gorgeous reds are mixed in.
Hi to everyone.
Re: Can we have a forum for "older" people with bc?
Chris, hoping you get some relief soon. I had a thumb release post carpal tunnel repair and it was painful. Use your pain meds as ordered.
harley07, hope your issues resolve quickly and you can pursue your favorite activities.
Taco, my condolences on the loss of your friends. While it is expected in our age group, it still is not easy to accept the loss of a loved one. Does Mutz miss Bella? As far as the dinner competition, is Ken the cook? Perhaps you could change the frequency of the dinners to monthly? If there is difficulty in finding things to discuss, I would be bored as well.
cindyny, loving the DC photos. Keep posting them.
canarycat, how are things with you?
orknitter, we met 2 sisters on our cruise that were from OR. My DH and I had taken a PNW land trip and loved the one beach with the huge boulders. One of the sisters had a video of an elk herd on Cannon beach she shared with DD and I. We did not see it on our trip, but were amazed with the video.
Carole, where are you? Are you heading back to LA yet? I miss your posts.
petite1, how are you?
To anyone I failed to mention, I am waving "hi".
It's sunny and warm today. I had a goal to clear clutter in the kitchen and worked on organizing what I needed to keep. It could still need some more detailed organization but I will save that for later.
I hope everyone had a great day.
betrayal
Re: Can we have a forum for "older" people with bc?
I've been here but not feeling chatty I guess. Seems to have been a hard period. Several deaths among friends - one expected and one a terrible shock. Also a murder/suicide in a local continuing care community. Supposedly wife begged for relief and the husband helped her. So sad. Wish every state had death with dignity laws. I'm really having to deal with the down-side of living in an age restricted community.
Our Saturday nite dinner friends are back from Michigan. I've been trying very hard to get Ken to not consider these meals a contest and plan more simply. Happy to report that he did for this week. Frankly, I'd like to get together much less frequently. Neither of us have particularly interesting lives which make the get-togethers boring. The original friendship was between the wives and Ann has been gone since 2017, another cancer casualty.
Bella went home Thursday. It's certainly quieter here now. Sweet girl but quite a barker. Jie says she barks less than when she came to us but has developed a taste for treats. Ken spoiled both the dogs. I suspect Bella will be here off and on as they both have significant health issues.
On the other hand, two nice mornings with friends - one who I haven't seen in years, the other my BFF. All you gardeners inspired me to buy flowering plants for the front window ledge.
Cindy - the night pics from DC were exceptional. Haven't been back since we left in '97. Sounds like a great trip for you too, Betrayal.
A warm welcome to Firefighter and thank you for your service. Not an easy occupation. As you have undoubtedly noticed, we talk about more than cancer but we have all walked the journey and will be here for you. I always suggest that you also check out the threads related to your diagnosis and treatment. My "starting chemo Feb. , 2017" still maintains a private Facebook group which was a wonderful lifeline at the time.
Have a good weekend, everyone.
1946taco
Re: So...whats for dinner?
Carole, I’m glad you enjoyed your meal out.
Nance, I have had apple butter and apple jelly but never apple pie spread. It sounds good. Enjoy the top round roast. Even the cheap cuts of beef are expensive these days.
Dinner tonight was meatballs in Rao’s on spaghetti.
maggie15
Re: how about drinking?
Two weeks ago, the Aspens were already turning colors.
Carole - it's the first day of fall everywhere according to the calendar. Tuesday will be chilly and possibly rainy in Denver then warming back up to low 80s.
Spent the day baking today - 1 batch of challah - made rolls - sweet top with cinnamon and sugar, marble cake, mandel bread to bring to a friend (similar to biscotti) - I make my great aunt's recipe - the best ever and an apple kugel. I"m going to work from home tomorrow as I have 3 zoom meetings/training and the last one ends at 4. Rosh Hashanna starts tomorrow night and is Tuesday and Wednesday. Tomorrow night I grilling a turkey breast, smoked turkey necks from the freezer for DH, purple sweet potatoes, carrots and the apple kugel. We are going to friends for lunch after synagogue on Wednesday. Tuesday meals are at home.
My DD#1 and granddaughter arrive in 2 weeks for 11 days. The wedding is in 3 months and 10 days - not that I'm counting.
Kim - it's a tad chilly by you, both inside and outside. Carole - when do you head back to LA?
Sandy - how's the house coming along? Do you have a move in date yet.
Re: What to expect?
My tumor was ER+ PR+ HER2-, so I didn't get chemo. Here was my experience:
Night before, NPO after midnight—so I had a great steak dinner before going to Kol Nidre service for Yom Kippur.
Morning of, arrive at hospital 7am, change into gown, get radioactive seed implanted (some patients get a wire), then tracer injected and wait for it to "take." Back to pre-op roomette with family. 11 am, meet with anesthesiologist, who takes another set of vitals, notes that I asked for a pediatric airway (I am a singer, so want to protect vocal cords when intubated). Noon, ENT comes in to give me a Zantac (checked my chart to see I have reflux). 12:30, find out surgeon is running behind and can take me at 1:30. At 1:30 I am wheeled into the OR. Next thing I know I am back in my roomette and the surgeon comes in and says "no surprises, it all went well, tumor size was 1.3 cm, and 4 nodes taken—2 sentinels, 2 "hangers-on" that couldn't be separated."
(I'd been warned by the nurse-navigator that due to my breast size I might be sent home in a large ACE wrap because they might not have had a large enough surgical bra. But they were able to squeeze me into a size XL high-back post-surgical "posture" bra).
It was 3pm. Nurse comes in with juice, bagel & schmear—it's still Yom Kippur but I figured there were extenuating circumstances to break my fast before sunset. 4:30 I am walked (!) to my car and driven home, where we ordered out for pizza. I slept downstairs in the living room, wearing a button-up PJ top & shorts. Took one Norco. (Was prescribed 3 days worth).
Day 2, discovered I could dress myself and brush my hair just fine, Couldn't shower yet, so sponge-bathed. Sister (flew in from VA to take care of me) was shocked to see me fully dressed and waiting outside on the porch. We went to a local Southern restaurant (she drove), where I had an Arnold Palmer because no alcohol while on pain meds—but I stopped them, with plain Tylenol taking care of mild pain. As I was drifting off to sleep, noticed upper body stiffness and soreness setting in. Googled, and came up with "scoline syndrome:" just after general anesthesia, they inject succinylcholine (powerful muscle relaxant) to ensure the patient lies perfectly still—but just before the upper body relaxes it has an extremely powerful muscle contraction.
Day 3, I portal-messaged the nurse-navigator who confirmed the scoline syndrome, and assured me the soreness would wear off in a couple of days. My BFF came over for another pizza—and an Edible Arrangement was delivered. Had some sparkling rosé.
Day 4, sis & I walked to the grocery (she carried the bags) and supplemented the leftover pizza with a good salad. Soreness mostly worn off. Path report came in—clean margins, all nodes negative.
Day 5, we walked to brunch, then to the beach (we live 4 blocks away). Then sis had to drive back to the airport for the flight home. That night, I drove to dinner.
Day 6 got my hair trimmed, washed & blow-dried. Held off on getting roots done and straightening treatment till I knew whether I'd need chemo (and thus all those chemical services would be wasted). Took a shower (protecting the incision sites with cling wrap).
Day 10, my son loaded the car with my guitar & dulcimer, and I drove 90 miles to Rockford for a gig—where my singing partner (who drove down from Madison, WI) & the venue owner unloaded the car and set up. For 2 glorious hours I forgot I had cancer. Had late dinner and drove back home—husband & son unloaded the car. Was able to wear soft-cup front close bras.
Day 14, met with surgeon and medical onc., found out the tumor would be tested via OncotypeDX to determine whether I'd get chemo. Med. onc. said the only reason for the test was that the size (>1 cm) put me in a "gray area." Also got genetic testing for BRCA mutations, as I'm Ashkenazi. So next day got my roots & straightening done.
Day 21, Oncotype DX came back—16, so no chemo. And no mutations. Met with radiation onc. for mapping. He removed the last of the stubborn Steri-Strips on the sentinel node biopsy incision site. Could finally shower. "unwrapped." Began wearing underwire bras,
Day 22, that incision popped open—surgeon's partner sutured it closed, saying the weight of my breast (still large despite lumpectomy) had pulled it open. Back to wearing front-close "leisure bras."
Day 29, sutures removed and I drove to Iowa City for a folk music conference. By then I was back in my regular underwire bras.
One week later, began the first of my 16 sessions of high-dose radiation targeted to the tumor bed (as opposed to the usual 35 sessions of whole-breast), because my age (almost 65) made me eligible for the new protocol (my rad onc was part of the study). Had some mild redness but no real skin disturbances. Nowadays that protocol is fairly common for postmenopausal patients with my type of tumor (known as "Luminal A").
2 weeks after last session, took a Mediterranean cruise, started Letrozole upon my return. Stayed on Letrozole 6-1/3 years.
I did have some mild cording & lymphedema (specialist classified it as "subclinical") for which I got PT and learned how to do manual lymphatic drainage massage. For the first 3 years post-op, I wore compression sleeve & gauntlet whenever I flew, drove to high altitudes (>2000 ft), took fast skyscraper elevators, did housework, gardened or played guitar outdoors in warm weather. My lymphedema specialist discharged me and said I could ditch the compression wear.
(Your mileage may vary).
chisandy
Re: What to expect?
I had a mastectomy, not lumpectomy- so I can’t advise you on that. Search the threads & you should be able to find some good information on what to expect afterwards.
I had chemo before my surgery & thankfully did not have many side effects. I found it helpful to drink lots of water, eat as healthy as possible and go for a walk every day. The walk made me feel better physically & emotionally & helped me sleep better at night. Listen to your body & rest when needed.
I had radiation & honestly felt that wasn’t too bad. I read some tips on here to start putting aquafor or calendula cream on your chest for 2 weeks before radiation & felt that helped my skin. My radiation doctors office gave me a prescription cream to use once a day that they had great success with for helping prevent skin irritation, so I had a little redness & that was it.
I was able to drive after both chemo & radiation. At my first chemo treatment they did want someone to drive me in case I had any type of reaction.
ann5631