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

keywestfan

(continues) morning. But terror arrives again. Tomorrow is my first diagnostic mammogram since surgery. Then appointment with very easy on the eyes, BS. I am afraid of Ca in my good, left breast because of zingers, zaps, sore nipple, which led me to examine right breast in January to see if they were the same and that’s when I found right breast lump. Was supposed to have diagnostic bilateral mammogram. but only right breast was done. I believe synchronous bilateral BC is only1.3 %, but still all around terror. Forgive this obsessive ramble and please be in my pocket tomorrow.

jud

IllinoisLady

There big time.

HikingLady

keywestfan yes in your pocket. I love the 'easy on the eyes' BS - that will help you through this, ha ha! You are hugely inspiring. I love the daily eliptical, huge engagement and ongoing connections of all sorts that you model. You are inspiring and terrific. Wishing you a good solution to this anxiety. Yes, we all share this fear stuff, for sure, no matter how otherwise level-headed we are. Keep us posted.

Wren44

In your pocket for sure. Bringing brownies with no calories at all.

Krose53

Hi Keywest, did you have a bilateral MRI at the time of diagnosis? If not, I'd definitely ask for one.i had one and it found 3 more lumps. The one I knew about in my left breast and another and one more in my right. I had 2 more biopsies and the one in the R breast was positive. After my BMX, the pathology found another one. I have a total of three tumors 2 ILC and one IDC. All of them were very small. I'm sure you will be fine but better safe than sorry. I think they checked both sides because I was initially diagnosed with ILC, which is more frequently found in both breasts, then IDC.

IllinoisLady

It costs you nothing to make another happy -
and you gain your true self through the act of spreading joy.
- Jonathan Lockwood Huie

Wren44

Our predicted high here is 65. I think it's time to switch to long sleeve T shirts. On Friday it's supposed to be 59. It's raining, of course, all week.

carolehalston

We mowed the grass on Sunday, maybe the final mowing. The leaves are falling and some trees already look "thinned out." It is definitely a fall scene here. I am beginning to look forward to heading south even though the heat and humidity will be waiting for us. And weeds in the flower beds. And unpacking and getting the house in order. Then before we can blink, it will be time to make another trip north for Thanksgiving in Illinois.

Today is women's golf at 11:30, a meeting afterwards and dinner with those who played. The meals are always simple since the club doesn't have a real restaurant. It's a bit overcast and some chance of rain this afternoon.

Happy Tuesday.

MCBaker

Carole, do you call yourself a snow-bird? Your primary residence is south, so you go north to avoid the heat and humidity. I have been trying to think of a name for that.

Yogatyme

Ladies, love this forum!! The way you post a pic is to click on the icon that looks like a picture of a mountain and then “choose file”. Choose photo library and all you have to do is click on the pic you want to post. It’s hell being an old gal....😂. My sister-in-law and I decided we need a 7 year old in our house to help us w all this technology!! I’m 68 and she’s 71 and often laugh at our techno illiteracy. We are also frequently amused by our “autocorrect “ posts.

IllinoisLady

Human beings are parts of the whole called by us a universe—parts limited in time and space. They experience themselves, their thoughts and feelings, as something separate from the rest, a kind of optical delusion of their consciousnesses. This delusion is a kind of prison for us; it restricts us to our personal decisions and our affections to a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty. -Albert Einstein

keywestfan

HikingLady, Krose53, and everyone on this, oh so supportive, forum..

So yesterday, Diagnostic bilateral mammogram, then saw breast surgeon. First followup from surgery, radiation,...Was/ have been so anxious about this, of course being the terrified me, And anxious about other breast. So, mammogram woman frowned as she was taking pictures and grimaced a few times, took about 10 pictures, a lot. then had me wait while she showed them to radiologist. She came back 20 horrific minutes later and gave me a double thumbs up. Then,the so easy on the eyes, breast surgeon, said I've sailed through everything and have stage 1a, when I think oncologist thought it was 2. Surgeon says I should go out dancing. But what will he say next year? Scary. But felt wonderful to get good news, my wish for us all.

ChiSandy

Jud, I'm late to the party--hadn't checked this thread lately before your post--but delighted at your normal mammo results--and the new reassessment of your original tumor as Stage IA (<2cm). Had I kept up with the thread, I'd have been in your pocket--so I'm there for next year.

I had an AI rather than tamoxifen, even though I had (apparently) preexisting osteopenia. Though I have a low Framingham risk score, my family medical history (both sides) is a cardiovascular train wreck. I have venous insufficiency in my lower R leg & ankle, so had to get a bilateral venous Doppler to rule out DVTs (none found, whew). Tamoxifen's most common serious side effect is blood clots. No-go factor #1 for me. It also competes for the same liver enzyme pathway with bupropion (an NDRI)--my 30+ years' maintenance med after postpartum depression (depression's three generations deep in my paternal line--including dad & son) and for food craving control. Unlike other modern antidepressants (SSRIs and SNRIs), it's been absolutely "transparent" for me in terms of side effects. So that's tamox no-go factor #2. For years I had endometriosis, and during perimenopause I also had adenomyosis--fibroids growing inward from the uterine lining rather than out into the uterine cavity. Tamoxifen can sometimes cause endometrial hyperplasia, which can turn malignant--and if a prophylactic hysterectomy is done, it can cause "retroperitoneal" tumor activity (i.e., in the rear of the lower abdomen where the uterus had been). No-go #3. Finally, my MO told me that with tamoxifen, my 15-yr recurrence chance would have been 10-11% (given my OncoDX score), but letrozole would cut that to 7-8%.

So that's why I put up with AI side effects, some of which it shares with tamoxifen: hot flashes (which I never and don't have), night sweats (milder now, I put my hair up at night to prevent frizz), weight gain (reversed, and then some, with low-carb diet), and joint pain (lessened because of weight loss and topical CBD). I have at least 15 mos. left on it; my MO will discuss another 2 yrs. when the time comes, though she admits that in postmenopausal patients with early-stage Luminal A bc, most of endocrine therapy's benefits occur in the first 3 years.

Speaking of weight loss, I can now easily squeeze into Chico's size 2.5 (14) skinny jeans! And all my dresses are now loose. (I have some 2Xs, 1Xs, 16s & 18s still with the tags on, plus some rarely-worn 20s, dresses, blazers, suit, jeans--Goodwill's gonna get quite a haul).

cassiecanada

Thx chi sandy for those details-def
can see why femara better for you-
not much time left till your last pill-
lucky lady ! woot!
fir me - ugh- i am just starting
this hormonal stuff and quite frankly
may quit- my risk is low and i worry
more about hidden clot risksetc
than recurrence-
whats luminal bc ?

keywestfan

Sandy, I knew you would be in my pocket and know you will be at mammogram next year. I thought it would be in 6 months but BS, Dr.W, says September 2020 . Wonder if MO, Dr. M , will agree. I think MO is less lighthearted than BS and more cautious.

It’s admirable how stringent you’ve been with no carb diet and how gratifying to fit loosely into older clothes that had grown too small- like reversing time. I’m so glomphed onto carbs, what you’re doing seems almost impossible to me, though my son is doing it also as he was in high range of pre- diabetic.. Tonight DH - Gil- and I went to Northwestern U to hear Chris Jones, theatre critic for Chicago Tribune speak, and I ate 9 slices of pizza which is the only food I can’t resist. Weight is not a problem for me, but it will be on the AI if I don’t watch it. As my thinning hair is becoming a concern. But less so than it would’ve been before all this happened. Perspective has arrived.

Judy

carolehalston

We call ourselves reverse-snowbirds.

Today I have a hair appointment for cut and color. DH is playing golf. We have one vehicle, so I will have to drop him off and pick him up later. I also plan to do some Walmart shopping with a list.

Yay for good health news!

IllinoisLady

You have choice. You can select joy over despair. You can select happiness over tears. You can select action over apathy. You can select growth over stagnation. You can select you. And you can select life. And it's time that people tell you you're not at the mercy of forces greater than yourself. You, indeed, are the greatest force for you. Now, you can't do it for me, but you can do it for you. -Leo Buscaglia

IllinoisLady

Yay for you Judy. Our nature so often is apprehension and worry and oh how sweet when we find it not warranted. Do celebrate. You earned it. Enjoy your day too Carole. I always look forward to 'hair' day and will have another late October. Hoping for a perm them if I can sit in the wash bowl chair well.

keywestfan

Thank you, Illinois Lady. It is very sweet when life seems to turn around in a good way and keeps hope alive.

ChiSandy

Judy, you went to an annual mammo schedule a year earlier than I did. Dr. M is not exactly renowned for his bedside manner or people skills, though he was a boy-wonder prodigy in resdidency & onc. fellowship, as well as research. Peaches1, who was in our BC support group at Evanston Hosp. before it broke up, has him as her MO as well--IIRC, she thought he might be on the spectrum. She hasn't posted lately--must be busy with her choral group. I agree that Dr. W is definitely easy on the eyes. He's the head honcho for breast cancer surgery for the whole NorthShore system (my BS Dr. Y is his partner). If he says you're in the clear for mammos until next Sept. I would tend to agree. (When my axillary seroma burst and Dr. Y's NP said I should pack it several times a day for six or more weeks and let it heal from the inside out, he nixed that idea, and sutured it. He was right--stitches came out 2 wks later and it held and never got infected)

I did fall off the wagon tonight--Piemonte winemaker dinner at Cellars (the young winemaker was a long tall drink of eye candy, to mix metaphors). Wasn't so much the wines--I rationed each one. I avoided the starches till the braised beef ravioli came out (and Tom, the chef-owner, mentioned the staff had spent all week making them)--I had two out of the four. I did okay with the duck leg & green beans over polenta--was able to scrape the polenta off the duck & veg and didn't sample what was on the plate. No, it was that dang "bunet:" sort of a chocolate-caramel tiramisu using custard rather than mascarpone, and a crust of soaked crushed amaretti cookies instead of ladyfingers. I left over 1/3 of it, but ate the little cookie garnish; the damage was done. Back in the pre-diet days, I would have used that as the excuse to abandon further discipline; but I will definitely "get back on the horse" in the morning. (Not tonight--I simply don't eat anything but sugar-free fiber gummies after dinner any more). I am girding myself for a 1 lb. gain come Mon. morning, barring some sort of digestive-system miracle. But as long as my thinner clothes fit...

Had a rough night yesterday. Swapped out my old iPhone 6 for a new 11, which Sprint sent me and is charging me the same as it did for the 6, so long as I return the 6 "wiped" and in working condition. So in preparation, I backed up the 6 to the cloud, "restored" the new 11 from that backup, confirmed all my data, music & contacts were now operational on the 11; erased all data from the 6 and deleted its backup from the Cloud, as the instructions provided. So at 2 am a message popped up on the 11's screen: "this phone has not been activated; call your carrier." So I did--and of course, it was after business hours.

But chat was 24/7, so I started a long odyssey of circular reasoning with a succession of agents who were obviously offshore and not native Anglophones. "Circular reasoning," in that I set forth all my particular circumstances but they ignored them and asked me to do things that I had previously made clear were impossible. There are two lines on my Sprint account, which is used mostly by my son. Unfortunately, he now lives 4 miles away with his girlfriend and I had no access to his phone--which the agents kept saying was the only one to which they could send an authentication code. (They refused to e-mail it to me or text it to my AT&T (primary) phone--"the system" wouldn't allow it). I found myself increasingly typing with "caps lock" on, making liberal use of exclamation points). I texted my son in the remote hope that he would still be up at 2:30 am (he works till midnight and gets home at 1am at the earliest). Mirabile dictu, at 3 am, he texted back that he was up--so they texted him the code and he texted it to me. By the time I confirmed the new Sprint iPhone 11 was finally activated (and the kindly agent--third one of the night--changed me to a cheaper senior-citizen plan) and hit the sack it was nearly 4am.

But I could barely sleep--the outside of my left thigh had this dull, sick, squeezing ache (with skin numbness) that came in waves. Nothing seemed to work until I finally slapped a lidocaine patch on it; and I had to be up at 9:30am. I was so sure it was something dire like a paradoxical femoral fracture from Prolia, or even bone mets, that I had planned to go straight to the walk-in ortho clinic after my mani-pedi. But on the bus home I noticed it had stopped hurting from breakfast on. I looked it up, and it's "meralgia paresthetica:" a compressed nerve. I used to get it when I was fatter and my jeans were tighter (obesity & tight clothes are possible causes, as is neuropathy from diabetes, which I don't--yet--have). Sat down in my recliner and picked up the laptop--and bingo, there it was again. Noticed I was squashed against the left armrest. Stood up and looked at the chair from the front--and yup, it's listing like the Titanic. The metal base has corroded after a decade, and I can't even shim it level. (Five years ago, I had a furniture repair guy fix it). I looked at it again--the leather has worn and torn to boot (and so are the naugahyde patches I'd glued on). So I have to shop for a new one--from a store or site that'll deliver it and haul this old one out to the alley. (Tried rearranging and propping up pillows to sit level, but it hurts my back, a new ache I don't need). And of course, that 2-hr. online chat adventure was conducted from this very recliner.

IllinoisLady

Be grateful simply for being alive. When you are grateful for life, pure and simple, your life becomes one you can be grateful for. That may strike you as circular or even backward logic, but your attitude really does have an effect on how things work out. When you can't change your life any other way, you can still change your attitude. When you do, your life changes. You find more chances to love, and you will be surprised to see how much more love is returned to you.
The next time someone says, "It's a lovely day," try saying, "Yes, it is." Today is always the best day of your life.
-Bernie Siegel

carolehalston

Well, I arrived for my hair appointment yesterday an hour early! I double-checked my purse calendar and, sure enough, my appointment was an hour later. So I did my Walmart shopping. The hair cut and color were fine. Hair is a little short but I don't mind because the drying process is so much faster.

This morning it was in the low 40's when we got up. But the sun was out. I'm wearing sweat pants and a sweat shirt as I type.

Hope everyone is having a good Thursday.

keywestfan

Sandy, I feel very confident with Oh so cute, Dr. W. as a surgeon and with Dr. M as MO. On the spectrum or not, he listens very carefully and respectfully responds.I’ve only seen him twice. I do think he’s more detail oriented than Dr. W and I’ll just bet you a gelato at Frios that he’ll nix the year mammo for a 6 mos one when I see him at the end of Jan. He was concerned after re excision that 3mm of residual IDC was uncovered as well as LVI, though margins were clear and thought it was a safer option for me to have radiation, while Dr. W thought I could go straight to the pill. Still Dr. M says 5% chance of recurrence in 5 years with pill and, like Dr. W doesn’t think I should worry much.

You are so engaged with the world, music, food, law, people and now that I’m further away from all the trauma, I’m getting reengaged too, though, being vegetarian,I’m not much of a foodie or cook. There is a fairly new restaurant, Onward, at Sheridan and Albion that is quite good.

In the still of the night, when you had your leg pain, your mind leapt to Prolia damage or Mets. I wonder how long it takes not to jump to possible horrors and just think like an innocent person that possibly something just got twisted. I hope not too long.

I love my iPhone X and love trying to figure all the glitches out myself.

Judy

MCBaker

I haven't posted here for a while. I have been busy doing background reading for my writing project.

A lot of medical appointments. I had an echocardiogram on Tuesday. Had been having symptoms, this was my fourth since starting the Herceptin, this time they lined up the results for comparison, so they must have found some problems. Is it progressing slowly enough that I can continue the Herceptin? I will know Thursday next week what the Onco thinks. I would like to get rid of this port.

Then today I got new hearing aids. Will have to go to US cellular to get an old phone connected, so I can use bluetooth and process phone calls with both ears. Should be much better. My son called me, and I could understand him much better, but I still had to shut down the other HA.

Sandy, I also have problems with compressed nerves. Right now I am sleeping on my left side because the primary problem is on the right. But now problems on the left. I did not go to church on Sunday because it hurt to move. My scooter is broken, and it may take several weeks before he gets a new part for it. I need to arrange some rides.

So, in the meantime, I read and take care of my dog, and take everything as it comes.

Oh! And a colonoscopy in 12 days. I have a long prep because of severe diverticulosis. I guess it is an opportunity to lose more weight. My digestive system has gotten a lot faster this past year. Maybe the divwerticulosis is having a chance to heal?

ChiSandy

Judy, we llke Onward too--a tad far to walk (and it takes 2 buses!), but at the right time there is street parking. The colored gas fireplaces in the window are really fun--and even more fun is watching the passerby touch the window! Frio gelato is off my plate for now, as sugar's a no-no for me. Perhaps berries at Blind Faith?

I'm learning again bc--even Stage IA--is the gift that keeps on giving. Was osteopenic before even starting rads, much less an AI; once I went on letrozole my MO (Dr. L) insisted I take bone-strengthening drugs. Fosamax was out, thanks to GERD. Zometa infusion was a disaster. Once Medicare covered Prolia, I leapt at the chance. (I see my dentist for cleanings 4x/yr, got a clean bill of dental health, and have had no invasive dental work done). Then last summer I got a sore on my palate behind two incisors that made chewing a painful challenge. Went to the dentist, asking if it was ONJ; he took an X-ray and said it was most likely leakage from an abscessed tooth, and sent me to the periodontist that day. Perio took panorex X-rays, said definitely not ONJ but an abscessed tooth and sent me up the street to the endodontist, who also said not ONJ and I ended up getting two root canals. The sore went away until I started my second Invisalign tray in May--perio re-X-rayed and said it was likely irritation from the inner edge of the tray, and just to file it, which I did and the sore went away. Trimmed every tray since then, no problem. Got my retainer last month--still no problem (no sharp edges, and the edges don't touch the palate). Thought I was home free.

Then early this week I thought I felt the sore returning. By Mon. night it felt more like a tiny painless blister with something hard beneath. Wed. night I ran my tongue over it--and I felt a sharp protrusion. Using two mirrors, I could definitely see a tiny white spot of bone poking through. Freaked out and called the dentist again, who had me make a perio appt. for Sat. He said it was a torus palatinus (a bony bump on the palate about 30% of people get by late middle age). I've had one on the outside of the bone by an upper molar for 30 yrs. now.

As the day went on, I could swear I felt that little pointy piece of bone start to wiggle. As I was trying to get a video chat started with my voice teacher (playing the internet version of phone-tag) I felt the fragment fall onto my tongue. I immediately retrieved it and put it in a baggie. It's about 1mm, with a very sharp tiny white barb that looks like the tip of a (fetal) kitten's claw, but attached to a chip of tan bone with a (uh-oh) brown spot. Everything I read points to ONJ. My dentist talked me down off the ledge after seeing the photos I sent him & the perio--he is more intrigued than worried, so I'm seeing him tomorrow morning after dropping my kitty off at the vet for bloodwork & liver ultrasound. (And just an aside--heard two deep booms, like cherry bombs, about a block away. Ah, city life).

So there's no such thing as dodging every bullet aging throws at you.

cassiecanada

that is a very interesting story-
i researched onj intensely before
deciding on tamoxifin or femara-
i remember my dentists eyebrows
raising when i grilled him on this-
as i totally freaked at the thought
of jaw dying- he kindly reassured
me that its so rare- he hasnt encountered
it in his practice- yet as always with
bc- we deal in numbers/chances/percentages
yadayadayada-
but so we do in everything-
like waking up from general
anasthesia (which i was convinced
i would be in that small percent
that dont)-
fortunately- most of these odds
never happen-
however- since bc i have noticed
a change in my reaction
to any physical change-
yesterday i threw myself down
onto a parking concrete block cos
i couldnt stand on my right leg all of a sudden- i immediately diagnosed myself with a tumour
in my knee- it took alot of
quiet mumbling and massaging to
bring myself back to earth as
shoppers and cars jockeyed about-
until i realized that maybe it
was a delayed reaction to a twist
i incurred in a failed cirque de soleil
attempt to retrieve a jumbo
bag of digfood from backseat-
all said- chi sandy- i would be reacting
the same as you- but the odds
of the torus being something
connected to onj are low in my opinion-
only because its the torus-plus
its rare to begin with-my guess would
be a springing from a random site
more worrisome-
keep us posted-

ChiSandy

Seeing the perio this a.m. for a CT scan--he's had patients shed sequestered bone chips whether or not they had Prolia, BPs, or any invasive procedures. Says they're common in people with other torii--and I've had one on the cheek side of my rear upper gum for decades. Even if it's ONJ, he says we've caught it very early and nothing but "watchful waiting" and scrupulous oral hygiene are necessary.

IllinoisLady

Without forgiveness, we remain tethered to the person who harmed us.
We are bound with chains of bitterness, tied together, trapped.
Until we can forgive the person who harmed us,
that person will hold the keys to our happiness; that person will be our jailer.
When we forgive, we take back control of our own fate and our feelings.
We become our own liberators.
Forgiveness, in other words, is the best form of self-interest.
This is true both spiritually and scientifically.
We don't forgive to help the other person.
We don't forgive for others.
We forgive for ourselves.
- Desmond Tutu

Betrayal

What a prophetic quote. Thank you.

ChiSandy

All is well with my mouth. The dentist said the fragment was tooth enamel--broken off the apex of one of the abscessed teeth last July (2018) when I bit down on a pizza crust in NYC, which fragment lodged in and made its way into the palate, creating a sore to which the abscess spread. Root canal fixed the teeth and the sore, but nobody noticed any fragments. The perio said the fragment was necrotic bone--but CT showed that there's no osteonecrosis in my jaw (as there wasn't last year either). He says it couldn't be tooth, because the tooth in question looked the same on last year's and today's CT scans. He says he sees this occasionally in older patients who have torii (bony bumps) in their mouths--sometimes a piece breaks off from trauma (hello again, NYC pizza crust), sequesters itself elsewhere in the gum, and eventually works its way out through the mucosa. He says not to freak out should it happen again, just call him and come in for a CT. The dentist countered that the acrylic fillings placed over the apices of the root-canaled teeth shows up just like enamel on scans. At any rate, not to worry--just keep on doing. (And the orthodontia actually stabilized those two teeth--no wiggling).

So back to kvetching over my teeth and thigh neuropathy. (And to Bob's Discount Furniture tomorrow to try out new recliners).