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

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  • Del13
    Del13 Member Posts: 198
    edited October 2019

    Illinois, no story on here is to long, or to short, I personally need this,, my way of interacting with people!! Since my diagnosis, people don’t look,talk or act the same around me, even some family members, they see cancer not me, lol hugs to you, I’m sure it wasn’t easy for you today!! But you made it!

    Linda ( my real name ) lol

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Linda, I do recall, even though it has been some time, reactions of people when I said I had cancer. Actually a lot of people don't seem to know how to act or what to say. Though I never got a lot of agreement on it, my theory was that many were so thrilled it was me and not them that expressing their feelings appropriately became difficult. So, there were many people who for reasons needed to know, but the people who always knew just what to say were mainly those who were there, or had been there before me. As time went on and the signs of what was wrong became un-mistakeable with hair loss and a wig that was hard to manage, I could almost relax and know I might get some 'off' comments. Time made it easier in that respect.

    I think when I finally made it over the hump was an evening when their was a small get together with some friends and family. About half way through ( I was wearing scarves at that time ) my BIL reached over and pulled my scarf off saying I didn't need it because I was with family.

    I was horrified and then quite mad. I was going to say -- why don't you admit you want to know what a bald sister-in-law looks like but I held my tongue. I just decided if that was what he thought was all right as "loving" treatment for someone who was sick that he was too far gone for me to bother with. After that night I was never bothered by how people reacted to me. I chose rather to react to myself and getting well. If it was hard for others it was harder for me so I just decided to forgive them and concentrate on getting well.

    By the way -- some women could go bald and be successful with it. I don't do make-up well, never did and my head was not perfectly round and smooth. Maybe I have too many brains in there ( just joking ) so all together I always had scarves or the wig unless I was home with just Dh and me. Most of the time I was too cold to go w/o something on my head.

    You will come through. While I am not grateful I was sick, I did learn how many good friends ( even if they didn't always know what to say ) and caring people were in this world with me and so many of them are right here today. The things they talked about ( and still do ) have been a blessing that never stops.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Listening is the oldest and perhaps the most powerful tool of healing. It is often through the quality of our listening and not the wisdom of our words that we are able to effect the most profound changes in the people around us. When we listen, we offer with our attention an opportunity for wholeness. Our listening creates sanctuary for the homeless parts within the other person. That which has been denied, unloved, devalued by themselves and others. That which is hidden.
    In this culture the soul and the heart too often go homeless.
    Listening creates a holy silence. When you listen generously to people, they can hear the truth in themselves, often for the first time. And in the silence of listening, you can know yourself in everyone. Eventually you may be able to hear, in everyone and beyond everyone, the unseen singing softly to itself and to you. -Rachel Naomi Remen

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Our first really cool day today ( even yesterday warmed well ) and that will be due to rain and likely thunderstorms at some point. Not looking forward to coolness that way since a lot of dampness which makes it feel worse will be a feature. Seems we have gotten ( not so much for the rain ) to a real Fall. No special plans today other than getting the bills sent out or delivered around town.

    May have to think chili now for sure -- and maybe some five-way with some spaghetti. Anything that sounds warm for the bottom half of us.

    Hope you are going to all have a wonderful day.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2019

    Chilly here tomorrow too—will have to pick the remaining tomatoes before nightfall tomorrow lest they freeze.

    Hope you had good PET scan results, Jackie!

  • Puffin2014
    Puffin2014 Member Posts: 961
    edited October 2019

    I hadn't realized how long it had been since I checked in.

    Welcome Maggie, I had a lumpectomy, chemo and radiation, Halloween will be my 5 year survival anniversary. I'm a planner too and had a hard time with the uncertainty chemo caused in my life. I remember when I had to RSVP to a picnic invitation I told the woman I didn't know if I'd be coming, depended on how I felt. She asked me, When will you know, and I said 15 minutes before the picnic. She wasn't happy with my answer but that was the truth of my life then.

    Carole, I hope you've left MN. It's been raining all day here in Fargo, and depending on when the rain switches to snow, we're supposed to get 5-9" over the next couple days. Places west of Fargo have already gotten several inches and could get 2 feet by the time this storm is over.

  • marlame
    marlame Member Posts: 8
    edited October 2019

    Hi, I'm 71. Diagnosed September 24. Going thru all tests, consults with plastic, radiologist, and just got news that I'm Braca negative which is a relief because both mother and grandmother had breast cancer but at 60 years old. Stage 1, hormone positive, her neg. have another appt with breast surgeon. So at the moment choices are:

    mastectomy right, immediate reconstruction, later nipple reconstruction (the tumor is right behind the nipple so it's a goner) immunotherapy 5 to 10

    lumpectomy right, followed by 4 weeks radiation, wait 6+more months for reconstruction, on immunotherapy for 5 to 10 years.

    bilateral mastectomy, immediate reconstruction, immunotherapy...


    No chemo (so far)

    One moment I'm, like lets get rid of both of them

    Then the BRACA comes back neg and I'm like, okay maybe lumpectomy; then I'm like, we'll the nipple's a gonner, so take them both out.

    It's really hard to decide. Anyone out there that went one way or the other and any regrets with your decision.

  • Goldfish4884
    Goldfish4884 Member Posts: 75
    edited October 2019

    Hi Marlame: I was almost 70 when I was diagnosed 2 years ago. I went with the double mastectomy, tissue expanders and reconstruction. My choices were lumpectomy with radiation or mastectomy. I didnt need chemo because of my oncotype score only being 16 but it was recommended I do 5 years of aromatase inhibitors. I tried all three aromatase inhibitors and Tamoxifen but currently am not taking any of them, the side effects were terrible. I wish I would have taken more time to think about my options and wish I would have kept the good breast and just had the mastectomy on the cancer side. I didnt think at my age I needed to keep my good breast and nipple but I really miss having any sensations. Good luck to you as you navigate all your choices.

  • Del13
    Del13 Member Posts: 198
    edited October 2019

    Hello Ladies, welcome, Marlame, sorry you are going through this, it's definitely a game changer, I am 61 diagnosed August 28th, I am doing chemo first, 6 hrs every 3 weeks for 6 sessions, I have 2 masses, 1 positive lymph node, at least 3 nodes are involved, estrogen positive, placed radioactive seeds, I can tell seeds are working, also chemo is working because tumors are shrinking, surgery will be sometime in Jan, I will be having both breast removed, when I was in my 30s I had 2 lumpectomies, my right, and left, both benign, I am done with boobs,lol take it all, and scrape down to the bone!!!! then radiation, also doing a complete hysterectomy, I will be flat and very sassy with a touch of hoochie, hugs

    FYI bra burning party will be May 16th 2020

    We have got this!!!

    Linda

  • CindyNY
    CindyNY Member Posts: 1,022
    edited October 2019

    Marlame - so sorry you had to join this club, but it is a great support group here. I chose lumpectomy mostly because healing time is quicker, no drains, and I wanted to keep my breast pretty much intact - and could live with the divot.

    My tumor was at 12 o'clock and I was able to keep my nipple. It sounds like you may be forced to lose yours. Know that there are great 3D tattoos available for replacing visually what's been taken.

    For radiation I had 16 treatments of Hypofractionated full breast Irridation. Its a higher dose over a shorter period. Its doable, once you start it a mind set of "lets get this over with." Best wishes with your choices, you've got this and all of us in your pocket.

    Maggie007- I'm sorry you're going through all of this. You seem to have your plan all laid out, and a great attitude to boot. I'm small busted and hate bras, so count me in for May 16, 2020 bra burning! I'm marking my calendar. HUGS

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2019

    Marlame, any reason why they're recommending "immunotherapy" rather than endocrine therapy (tamoxifen or an aromatase inhibitor) for hormone-positive/HER2-negative early stage cancer? Did you mean to say "endocrine" (anti-estrogen) therapy instead? When you're new to this and your diagnosis hits you like a ton of bricks, the terminology comes at you hard & fast and can be truly confusing. (Immunotherapy is usually given for other types of cancers, not breast).

    I was diagnosed in September at 64 (68 now), no family history, and BRCA-negative (I got tested because I'm Ashkenazi Jewish, an ethnicity in which those mutations are commoner than in the general population). My OncotypeDX was 16, so no chemo necessary (would have been counterproductive). My tumor was located in the R breast at 10:00, so the nipple was not endangered. My choices were the same as yours (except of course endocrine therapy rather than immunotherapy). Because I had a small tumor in a very large breast (the other breast is even bigger), I opted for lumpectomy, especially its shorter recovery time. I too had 16 hits of hypofractionated radiation, but they were targeted to the "tumor bed," not the entire breast. (That enables one to have radiation again should an ipsilateral--same-sided--recurrence crop up in a different part of that breast). I didn't need reconstruction--the operated R breast actually looks nicer than the floppy L one (which I'm considering reducing & lifting once my weight loss hits goal & stabilizes).

    I read like crazy even before my diagnosis--I was sure that because we found the tumor early, it would be at worst DCIS. After all, my previous annual mammograms (even the year before) showed nothing! That's not how it works, of course. It's not just location--some invasive cancer is limited to fully inside the duct or lobe when found; it is still an invasive ductal or lobular carcinoma by virtue of its histology. But I was still blindsided as to what I could expect going forward. I was coming up against a deadline to re-commit to the Chicago Bar Assn's annual parody musical, and had to make a decision. I didn't want to have to pull out once cast, but I also didn't want to do a half-assed job of rehearsing & performing. So I reluctantly bowed out that year (I wrote a sketch for the show instead). Turns out that even with radiation, I'd have been fine being in the show. But we also had a Mediterranean cruise booked for the week before Christmas, as a celebration for Bob making it through an abdominal surgical ordeal and then dodging a bullet on a tiny lung lesion (disappeared at the second scan). Timing was just right: began rads just after Halloween and was done before Thanksgiving. We took the cruise, I did fine, and it was wonderful.

    Even though I had read every possible reference available to lay patients, cover-to-cover, BCO was and is still a Godsend.

  • HikingLady
    HikingLady Member Posts: 650
    edited October 2019

    Marlame, welcome, and so sorry you have to join us. If you put your DX info in My Profile, set to Public, we can see specifics about your DX and that makes it easiest to discuss similarities and differences. And, even more info can be set into your Biography, if you choose.

    As you see by the replies above mine, each case is SO different. I am grateful for NCCN, which means that evidence-based medicine guides our treatment. Back in 2003 when I had my first (small, treatable, 100% cured) breast cancer at age 45, there wasn't yet such a body of information about outcomes, risks and benefits to guide treatment.

    My experience is that after my lumpectomy + radiation (which was tumor-bed specific), and even though my nipple was 'intact,' I had zero sensation ever again at that nipple. Probably because the surgery damaged nerves to it; this is quite usual. That particular cancer was very curable, 1A stage and was definitely cured with my treatment plan. I was premenopausal, and my cancer that time was ER+, so I was on Tamoxifen for 5 years after that #1 cancer.

    My #2 cancer in 2018 when I was 60 years old, was in a different location (same —right—breast, though) and had completely different histology. Because it was Grade 3, for instance, it is a more worrisome diagnosis. This time (2018) I chose a bilateral mastectomy (left side prophylactically) for peace of mind. Even so, my future breast cancer risk is NOT zero, it turns out (axillary, chest wall, etc.——there's a super small possibility of a future breast cancer), but it's ALMOST zero. I do not want breast cancer a third time, obviously!

    My surgery path report from May 2018 bilateral mastectomy showed LCIS in the left side, not previously seen (as is often true with lobular invasive or in situ). This made my surgeon say “yay, you made the correct decision, having left side prophylactic mastectomy," since 'in situ' does put us at a higher risk of future invasive cancers.

    Radiation after a lumpectomy is a bunch of weeks of your time, and it's tiring. But, not invasive, and although it's fatiguing at the end, I never felt sick.

    Re: nipples....well, I don't have either one any more. My Mastectomy scars are horizontalacross both breasts, and I will not undergo any more surgery for nipple reconstruction. Maybe, possibly, I'll get the 3-D nipple tattoos, but I'm a little worn out on surgeries.

    I feel very lucky not to have lymphedema, but every type of breast surgery does put us at risk for that challenging complication. I suggest that you learn about it so that you know how to deal with it, and what steps are possible to prevent it after surgery, and treat it if it arises.

    Tissue after radiation is very scarred, internally, not visibly, after the healing from the outside 'burning' is completely finished. So, when it was time for my mastectomy 15 years later, my right side, which had radiation in 2003, healed VERY slowly. Blood supply is worse due to scarring, and the pectoral muscles are also scarred. So, when the pecs were asked to stretch over tissue expanders (step 1 for my reconstruction), that side felt tight. I stopped at Pretty Small as new foob size. Different from Quite Large as original breast size, but that's just how it is, and I'm adjusted, I'd say. Nothing about reconstruction feels 'normal,' just adequate, to me. Especially because the right side is forever rather tight feeling, because of that internal scarring.


  • Del13
    Del13 Member Posts: 198
    edited October 2019

    Good Morning,, hope all are doing well!! ChiSandy love your glasses, Betsey Johnson?

    Sending positives vibes for all, Hugs


  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    An arrogant person can't make me feel bad any more, because it's so easy to see through them once you know that they're faking it. They've put on this mask because they fear that others will see through them, will understand that no, they're not happy. I see arrogance as a sad state now, a state in which people try to hide behind their money or their breeding or their social standing or their positions of "power," but a state in which they'll never be able to let their true selves shine through. . . . Be arrogant if you wish. Look down on others and treat them poorly, if you wish. But realize that if you do so, you're only allowing your own inner weaknesses to shine through, and you're not fooling anyone. Not the people around you, who hold you in disdain, not the God who made you and loves you and knows all about you, and not yourself.
    -tom walsh

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2019

    Linda, no--the frames are Moda "Eco" (vegetal acetate from recycled materials). Hard to tell from the photo, but they're thinner than they "read" in photos; and they're not black nor even solid-color. The temples. browline, and sides are tortoise; the center and bottom are deep purple. The lenses are the Essilor Deluxe package of Crizal (antireflective), Transitions (photochromic), and Varilux X (wide-field progressives).

    My new recliner arrived today, Takes some getting used to, being centered rather than listing to the left, and needing to use the armrests. The old one (circa 2004) was a wide-body Lane; this is a La-Z-Boy Pinnacle "Petite" series--but not so narrow that it compresses the sides of either thigh. It rocks but doesn't swivel, but that's okay. I bought the old one online from Macy's and thus didn't try it out first--when it arrived, I discovered the headrest was so overstuffed it pushed my head forward and gave me neck-aches. Had to take out half the stuffing (there was a zipper on the back of the headrest, which was basically a flap).

    Over the years, the upholstery on the seat cushion compressed dramatically on the left, which led to me listing to the left whenever I sat down (and compressing the nerve on the outside of the thigh after awhile, causing painful achy meralgia paresthetica). But I couldn't take the removed stuffing I'd saved from the headrest and put it in the seat cushion, because the seat cushion was neither removable nor had a zipper. Might have had it repaired, but the leather was severely deteriorated (patched in places with Naugahyde tape!) and the footrest lever stopped working. Just wasn't worth it (it was $600 in 2004; repair--its second--would have been more than half that). The new one was originally $2300; marked down to $1300 when the model was discontinued; and further marked down to $750. Funny how the only floor model in the store was the perfect one, in just the right color leather!

    Also feeling relieved my latest computer crisis is over. I wanted to upgrade my MacBook Pro's OS from Mojave to Catalina, but tried to heed the advice to back up first. (Last one was in Aug.). Pulled out my trusty 1T G-Force portable hard drive, plugged it in, started Time Machine, and...nothing. The drive hummed, the light blinked, but the program wouldn't detect it for a solid 10 min. (Tried different cables, different ports). Then it got stuck on "Preparing Backup" overnight. Happy (my kitty) came by to remind me it was feeding time, so I jumped up and put the laptop on the table in front of my recliner...and the drive fell off its cable. Yup--it got corrupted, so much so that it put my computer into an endless restart loop and caused Finder to hang--so I couldn't find and delete any offending files on the drive nor even properly eject it without first fully shutting down. Took a leap of faith and upgraded anyway, and it went smoothly. But I still wanted to be able to do Time Machine backups.

    Went to Target (needed to shop for new, smaller jeans & jackets) and the only drives they had were USB-A (my computer has only C/Thunderbolt ports). So went to Best Buy and got a 2T Western Digital--Mac-specific, Time Machine-ready, that is half the physical size of the old one and ten bucks cheaper. Plugged it in, Time Machine recognized it right away and immediately began the backup: 284GB in under 90 min. for a first backup. Not bad!

    Speaking of said Target clothing, I am now in size 14P jeans (down from 18-20W), or 2P-2.5P from Chico's (formerly 3 or 4). And I treated myself to a new blue blazer (size L/14) since the only one I have is 18 and to have it taken in would have cost more than the new one. Filled 2 spare suitcases with my old "zaftig" sizes, for my sister, who's also lost weight and can now fit into them. I always knew I was short but now I am legitimately able to shop in the Petites dept. again, albeit in the larger racks. B'bye, Plus Sizes (or whatever euphemism they're using these days).

  • marlame
    marlame Member Posts: 8
    edited October 2019

    Thanks. I'll check out how to complete profile. What you experienced was one of my concerns, e.g., that if I go lumpectomy with radiation and later decide on bilateral mastectomy, the radiated side will be an issue. So you confirmed that. I was really going strong towards bilateral mastectomy and then the radiologist started with "well some regret that two years out". After meeting with him that's when I go the Braca negative results, so that confuses as to course to go. But I appreciate all the feedback cause I'm meeting with breast surgeon Monday.

  • marlame
    marlame Member Posts: 8
    edited October 2019

    It's an "estrogen blocker" that the breast surgeon has noted, so at this point I don't know which RX specifically. My other concern moving me towards bilateral is that it has always been my other breast that has had recalls at routine mamos, So I was surprised it was my right breast (it had one recall) and of course it's the smaller of the two so I'm imbalanced as it is... The left side has cystic tissue so worried in the back of my head that it's only a matter of time for that one.....

  • marlame
    marlame Member Posts: 8
    edited October 2019

    ChiSandy, Doctor's notes say "estrogen blocker". No brand and I have no idea at this point what all the med differences are...

  • HikingLady
    HikingLady Member Posts: 650
    edited October 2019

    Marlame—You can only make the best decision at the time, based on the information you have right then. There's no crystal ball.

    If I had known, in 2003, that I'd be having a 2nd primary breast cancer 15 years later, would I have chosen a bilateral mastectomy? Ugh, who knows.....At the time, choosing a lumpectomy + radiation saved that breast. Less trauma, less surgery.

    The advantage of a mastectomy or a bilateral one is the peace of mind, partly. I did have an 'elevated risk of another breast cancer' after having one breast cancer, but who knows! In fact, I ‘obey’ all of the low-risk lifestyle choices: good diet, weight only slightly higher than optimum, very regular exercise, etc. It was shocking, 15 years later, to have another breast cancer. And, since the 2nd one was more serious/aggressive, in fact, yes, I wished right then that I'd had that 2003 bilateral mastectomy to save myself the agony of worry about this more aggressive grade 3 cancer in 2018. But, had I NEVER had a second breast cancer, also plausibly possible, the choice of that lumpectomy would have been a good one, since my 2003 cancer was definitely cured with that treatment.

    My sharing my story isn't to weigh in on your decision, but to give you more data and context for your own decision, and perhaps guide some questions to ask your oncologist and your surgeon(s). I had a breast cancer surgeon (she took the breast tissue out) and a plastic surgeon (he sewed the 'pockets' of Alloderm to my pectoral muscles and set the tissue expanders in) and also an oncologist, who clarified all NCCN research risk/benefits / guidelines/ treatment options to help to guide my TX decisions.

    In your shoes, I’d ask both surgeons and the oncologist to describe the relative risks and benefits of each treatment, describe lifetime risks for lymphedema and recurrence and additional primary cancers, and I’d ask “what would YOU choose in my position, or what would you recommend that your dear mother/partner/aunt/sister do?”

    If you do have a BMX, it’s a big deal to prepare for and recover fro, and this site has some threads to support you on that.

    Keep us posted, and hugs of support to you.

  • HikingLady
    HikingLady Member Posts: 650
    edited October 2019

    Marlame - my MO starts his patients on the Accord brand of Arimidex (which is the name brand), and there are lots of threads on this site for Aromatase Inhibitors. There are several options, and some people tolerate one type / brand better than another. Aromatase Inhibitors are ‘estrogen blockers’ at the cell level, for post-menopausal women.

    Reducing estrogen usually adds to common post-menopause issues: joint stiffness, dry skin, etc., and also sometimes hot flashes.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Throughout our lives, the moment we bring our awareness fully into the Now, we enter the domain of the true self, and our immediate conscious reality is once again that of sensation and perception. As I sit in the park, the sunlight brightens the leaves and casts shadows on the ground. I have a feeling of contentment. And as long as "I" don't create stories about what I am seeing or about the fact that I am feeling content, which leads me away from my immediate experience, what I experience remains simply perception and sensation. The same is true for any feeling, any emotion. In the Now, it is just what it is. In the Now, I "go back" to my original awareness "by the way that [I] have come." When we directly perceive and experience whatever is present in our larger fields of awareness, it is possible to have a relationship with it without becoming lost in it or defined by it. -Richard Moss, The Mandala of Being

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Sunny today ( very welcome ) but a cool day like so many of the Fall days are. Lots of leaves on the ground but Dh uses the lawn tractor now to dispense with them No more hours upon hours spent with leaf blowers pushing them into the ravines on either side of our property. I love being able to give that up. Not sure how or why for sure we started that practice but in a word, highly impractical. Much faster and actually better for the lawn to mulch then into fodder for the ground.

    Nothing much planned. A somewhat lazy Saturday. I have any number of things I can do, but the list is long enough for me now to pick and choose the easiest and let other things wait. I've found over and over that keeping up here is a series of stops and starts -- some ( like my original cancer trmts. ) are long while the other are much more temporary.

    Hopefully will find my Dr. friend in the next couple of days and get his opinion on the recent scan. At the same time get to visit with my little doggie pals. So, it will be a nice interlude.

    Our furnace is coming on as of late. All the while we had gray and rain the temp had gone up to 75 and showed no signs of budging. Started to wonder if the thermostat was failing since the outdoor temp. was much lower. It since has seemed to have caught up. Keeping it at 73. Dh would have liked it higher as he has always been cooler than I am, but any higher and my exertions in the house just make it almost intolerable for me. I think in time it will begin to feel a lot warmer the more the temps drop outside. We can feel good inside with the sun shining and much of the dampness erased.

    So good to hear from you Puffin. Hoping Anne gets on soon as 've been thinking and wondering how she is doing and if her brother is still with her.

    Hope you all have a grand Saturday and hoping Carole in MN. is doing well. You'll soon be home.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2019

    Marlame, an estrogen-blocker is called "endocrine therapy." (Figured that "immunotherapy" was incorrect, as it's a different principle entirely, which uses one's own immune cells to destroy tumor cells--used for such cancers as melanoma and some stromal tumors, not breast cancer which is usually a form of adenocarcinoma). There are two types of estrogen-blocking drugs: selective estrogen receptor modulators (SERMs), most commonly Tamoxifen (there's also the bone-strengthener Raloxifene but it is used far less often; and aromatase inhibitors (AIs) such as anastrozole (brand name Arimidex), letrozole (brand name Femara); and exemestane (brand name Aromasin). SERMs work by occupying tumor cells' estrogen receptors, preventing them from accessing estrogen.

    AIs are a bit more complex. Aromatase is an enzyme secreted by the liver. Even if your ovaries no longer make estrogen (or you don't have ovaries), your adrenal glands and certain types of fat cells (not the fat in them) make androstenedione, an androgen (male hormone). Aromatase is the catalyst in the metabolic process that converts this androgen into estrone, a form of estrogen. So AIs actually drastically reduce (if not outright eliminate) the body's supply of estrogen.

    AIs are more effective at starving ER+ tumor cells of the estrogen that fuels them. But the drawback is that they can't be used in women who still have functioning ovaries: first, they have no effect on the estrogen made by the ovaries; and second, they stimulate the production by the ovaries of the pregnancy hormone HCG, which in turn "gooses" the ovaries to make more estrogen (but only in ovaries that have not died). AIs, especially letrozole, are sometimes used to stimulate ovulation in patients contemplating "egg-banking" and/or IVF, because of the HCG they cause ovaries to release.

    SERMs share some side effects with AIs: weight gain, hot flashes/night sweats, fatigue or insomnia. Unlike AIs, they actually strengthen bones (which is Raloxifene's primary use). But they also can cause (not just accelerate ripening of existing) cataracts, blood clots (not good if you're at risk for heart disease or stroke or have had recent joint replacement surgery), endometrial hyperplasia (overgrowth of the uterine lining, which can become malignant) and in women who no longer have a uterus, "retroperitoneal" (back of the abdomen behind where the uterus had been) hyperplasia and possible carcinoma.

    AIs' side effects are the direct result of their intended purpose of estrogen deprivation, similar to those of menopause: besides reduced metabolism leading to weight gain, and hot flashes/sweats, fatigue & insomnia: joint pain/exacerbation of existing osteoarthritis; hair thinning; accelerated ripening of existing cataracts; increased levels of blood glucose/a1c results; hyperlipidemia ("bad" cholesterol & triglycerides, lower HDL, aka "good" cholesterol); and bone weakening (either new osteopenia, or osteopenia progressing into osteoporosis). But in postmenopausal women, they convey a 1-3% better disease-free-survival benefit than SERMs and at least 5% better than no endocrine therapy.

    And know that the "squeaky wheel gets the most grease:" patients whose side effects are tolerable-to-minimal-to-nonexistent generally don't post, because they aren't looking for answers to any problems with it. My SE's have been tolerable & manageable: weight gain and prediabetic glucose levels reversed and osteoarthritis progression stopped by lifestyle factors; night sweats reduced by keeping the bedroom cooler; hair thinning by taking biotin, avoiding abuse of my hair, and eating plenty of protein; successful cataract surgery; osteopenia by getting enough dietary calcium, weightbearing exercise, and a 3-yr. 6-shot course of Prolia; hyperlipidemia by a low-dose statin. I've been on letrozole almost 4 years; my MO suggests 7 total, but concedes that most of the survival benefit in older early-stage patients occurs in the first 3-5 years on the AI.

  • Puffin2014
    Puffin2014 Member Posts: 961
    edited October 2019

    We got over 4" of heavy wet snow (other parts of the state got 28"). The snow was really straining the tree branches this morning, bending them enough that I could reach them. I put on my boots and parka and went around and grabbed each branch and as I shook the snow off the branches would lift back up where they belonged. One of my neighbor's lilac bushes had bent over my fence and was laying in my compost pile; I managed to get it boosted back up over the fence and into his yard. By mid morning the sidewalks and streets were melting and by this evening the snow on the grass was starting to melt; it got to about 35 today. The closed interstates opened this afternoon.

    Today was my 68th birthday. My friend's road wasn't good for her to drive on so she cancelled out of our breakfast at Denny's, so I went by myself at 11 and ate my free Grand Slam as a brunch. Went shopping at Kohl's and bought a new stocking cap, mine from last year was looking kind of ratty and I had a 30% discount coupon. Their Ugg boots were on sale and I picked up a pair that isn't quite as tall as the ones I've been wearing, they'll be nice to wear when I'm just going in and out of stores in parking lots where there's more snow than I want to wear shoes but don't really need the high boots. As I was shopping for groceries at Family Fare I got a call from another friend, she and her husband wanted to take me out for dessert at a downtown pastry shop. So they picked me up and we had a nice visit, I got to see pictures of their new condo in Park Rapids, they have some beautiful views out their windows. Then I met 2 friends at a Mexican restaurant for supper and we visited for an hour and a half.

    So it was a fun day, way too much food, even though I brought much of my supper home.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Happy Birthday Puffin


    Related image

    Sounds like you had a wonderful day.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    The struggle ends when the gratitude begins.
    - Neale Donald Walsch



    There Is Peace In A Life Of Constant Gratitude.
    Have Gratitude for the Smallest Blessings,
    for the crust of bread and the cool drink of water.
    - Jonathan Lockwood Huie



    Appreciation is the highest form of prayer,
    for it acknowledges the presence of good
    wherever you shine the light of your thankful thoughts.
    - Alan Cohen

  • carolehalston
    carolehalston Member Posts: 6,887
    edited October 2019

    Glad you had a good birthday, Puffin. Also glad we got out of Pine Hollow Resort before the snow came! We departed on Wednesday and got as far south as a town in Wisconsin about 100 from Madison. Forget the name.

    We went to Aurora, IL, on Thursday and stayed a couple of day's at dh's brother's house. We are now in Decatur, IL, at dh's sister's house.

    Tomorrow we plan to head home. Yay!!!!

    Hi to everyone, new and "regulars."

  • Wren44
    Wren44 Member Posts: 8,585
    edited October 2019

    Happy Birthday Puffin! Sounds like your day was a good one.

  • petite1
    petite1 Member Posts: 1,791
    edited October 2019

    Hi. I am "older" 66 and had lumpectomy with lymph node removal on 8/23/19. I am starting radiation and have simulation on 10/22/19. After 30 treatments, I will be on hormonal therapy - Arimidex. Has anyone used this medication?

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited October 2019

    Petite welcome to you. I have used Arimidex albeit quite awhile ago. I had no issues with it. During the time I was using it, it became a generic. I experienced some slight discomforts ( nothing earth-shaking ) while I adjusted to the generic form Anastrozole. Then, other than a stray short-lived ache or pain I did well with until my five yrs. were up.

    If you will look up above this answer ChiSandy talks about the subject of these drugs and you might find that information helpful to you as well. Some people do well and others have issues so it becomes something of a personal discovery for each person. As was noted ( perhaps in what ChiSandy said ) people who do well usually don't have much to say on the subject. I hope you will get a few more replies. It can be quiet here on the week-ends sometimes.

    Wishing you well on your journey. Feel free to come here often.

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