Can we have a forum for "older" people with bc?
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Surgeon's office called today with appointment information so it is nice that both the GI specialist and my GI doc managed to make that connection for me. I don't know about you Jackie, but I would just like one year without a medical/surgical challenge and it looks like 2021 isn't it. I will have had flu shot before appointment and 3rd Covid shortly after so I should be well-covered.
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Betrayal I would dearly love the same thing, but even if they all were positive . I already know that you will get four scopes ( one every 3 months ) if you have any size ( my last two have been so small ) tumor in your bladder -- so that is just openers for me. I will likely have chemo again and don't know how often or anything else. In-between somewhere will be Mammogram, Colon work, as well as another CT for the Pulmonologist. In between those I will nurse Dh who will have another back surgery. So at times it does feel like my whole life is tied up in something medical period. I will say if the next CT is good I will only have to do CT's once a yr. and will be officially released from needing to see the Pulmonologist. So, there is definitely something for me to look forward to.
Fingers crossed that you get all thru this and have a wonderful yr. with as few Dr.'s as possible needing to see you.
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Jackie, a small word of encouragement, my father had bladder cancer similar to yours and he died of old age at 97 years, 11 months.
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My GI doc mentioned CT of abdomen and I did have one last year prior to repeat colonoscopy (Sept. 2020) but she was unsure if they would want to repeat this. So while I have an appointment (a good thing) I have no idea what the plan will be other than the proposed type of surgery and a bunch of yet unknowns. I know that this is a repeat for you and while that is somewhat reassuring, it still causes anxiety about the outcome and what side effects you might experience.
My mammo is due in November as is my next MO appointment. Never feel secure with mammo results because I had a mixed tumor and ILC was not detected until path report. ILC not seen on mammo so I never feel that NED is true reading. These are only appointments for November so far.
October is PCP, ENT, Derm for skin cancer check (and hopefully donating some skin tags to her collection), the surgeon and LE-PT appointments. Seems my social life is primarily MD/PT appointments although my DGD will be 6 on 10/12 and there is a family party scheduled for the weekend after the date. Looking forward to this occasion. She started kindergarten this year and is also a cheer leader for a community sports team. She loves Disney and Minnie Mouse so I was able to find her an adorable Minnie Mouse dressy dress and some pj's that she will just love. I also found two unicorn pictures at Ikea on sale and she loves unicorns. She will be pleased.
I'm crossing my fingers for both of us. I do think we both need a break.
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There is no physician like cheerful thought for dissipating the ills of the body; there is no comforter to compare with good will for dispersing the shadows of grief and sorrow. To live continually in thoughts of ill will, cynicism, suspicion, and envy, is to be confined in a self-made prison hole. But to think well of all, to be cheerful with all, to patiently learn to find the good in all—such unselfish thoughts are the very portals of happiness; and to dwell day by day in thoughts of peace toward every creature will bring abounding peace to their possessor. -James Allen
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Beavertx -- may it be and like Betrayal I too hope we get into that spot that gives us a big break. Beavertx, the good news is that so far ( fingers heavily crossed despite a bit of arthritis ) all the bladder cancer ( although the first discovery was in the rt. ureter tube ) has been of the papillary variety. Had it not been I might not have been with you all still. So, of course I'm hoping ( if it comes ) that it is always papillary. You have generally plenty of time to work with it.
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Betrayal, I know what you mean about not feeling safe after mammo. My first spot was found by the mammo. The 2nd was found when they went back for better margins. It was not on the mammo at all. That's why I elected the mastectomy. It was larger and high grade than the first one, so it would not have been good to miss it. I get a mammo on the other side although I don't feel confident in the results. I'm coming up on 10 years, so worry a little about recurrance.
Wishing good results and easy treatment for everyone. Exciting that you're GD is having a birthday.
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What trust I had the medical community was destroyed by my BC experience. It was not just one incident, but a series of incidents that seemed to be bungled from bx of both breasts years earlier where the radiologist could not pull up the MRI results during the procedure so she bx where she thought the lesions were and of course they were benign. Developed large hematomas at bx sites and left wrapped in ace bandages with ice packs in them. Anesthesia was wearing off and had to be readministered twice. On dx it was determined that the "new" mass was 5 mm from marker from original bx which they made light of and I felt was significant.
I am not having a good day because of recent dx and need for surgery. While I am worried about path findings, it is the surgery that has me so frightened. My last surgery experience was with Dr. Bumblef**k who had to perform 2 surgeries to remove BC and still left me with shitty margins that required more radiation. I had the max of 60 grays which left me with breast fibrosis, a deformed breast and breast LE and axillary cording. So I am having a meltdown due to coping circuit overload.
I am still dealing with an unrestored house and approaching the 2 year mark of the initial damage. They will start the basement in mid-October but I have been living with a disordered house for so long with belongings from damaged rooms scattered through out the house that it is taxing. I desperately need something positive and don;t see that happening. It's been nothing but bad news for the past 5 years. Sorry but this has triggered my PTSD that I thought was under control. Not.
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Well, I’ve thought my PTSD was getting better because I haven’t been that anxious in advance of my routine mammo- though clean mammo never caught my lump which I found 5 months later and which had probably been there for 3-5 years of regular good mammograms. So today, not too nervous, I went. Confronted by the 3D machine, I could feel my heart pound. Very nice technician positioned me for second of four pictures. Suddenly, red lights started flashing, gongs, noises. She had to stop, leave the room, and there I was, standing in front of the machine. She came back in 5 minutes, said they were pretty sure it wasn’t a fire, and took the rest of the pictures. Said she’d show them to the radiologist and be back in about 10 minutes- the scariest part of waiting. Red lights beganflashing, gongs again. I didn’t know whether to leave the room or stay. After awhile she came back, said she was worried about me. There was no fire , false alarm,and radiologist said all was fine, come back in a year. Thank you whoever controls these things.
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(((((((Betrayal)))))))
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I'm joining in with Wren's hugs to you Betrayal. You thought of me while you were having so much more than I have had. True -- this is not a picnic for anyone but as you said you have had not only your highly problematic bxs but the years of living in a damaged home hoping it will get together and facing more problems than not -- and then PTSD. You do need something highly positive and were it in my power ( for that matter any one here ) I would deliver it immediately. Sending hugs and lots of love and hope. It is not much, but I'm willing it to you as hard as I can. If it is not available to you today -- then maybe tomorrow or the next day. Whenever you feel down I hope you will remember I'm in your pocket and not going anywhere as long as you need someone. Just betting we all will be.
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IrishEyes: If possible, always have a second person with you at your Dr appointments, and one of you take notes. I always used my cell phone to record everything the doctors told me so I could listen to it again after I got home. None of my doctors objected.
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Piling on the hugs, Betrayal! And beautiful and inspiring poem, Irisheyes!
Judy, we crossed paths a block apart--I saw Dr. B (my melanoma MO) this morning at Kellogg. I've been through a couple of "code red"s myself--one as I was preparing to leave Kellogg a couple of years agp--we weren't allowed to evacuate the parking lot till the fire engines were gone; and almost 37 years ago at Rush. A couple of days after my C-section I was moved to a surgical floor. Got settled in, chatted with new roomie, but less than an hour in, the fluorescent fixture over the mirror on the wall began emitting pungent white smoke and then burst into flames. Hit the call button, and both of us were wheeled, still in our beds, into different rooms, with different roommates.
Got my MRI & chest X-ray reports, and except for some harmless "incidentalomas" (stable since March's CT) unrelated to cancer, it was all good. So my scanxiety turned to "scalexiety." Fortunately, I didn't have to get weighed but I did need blood draws, which I hadn't had since seeing my breast MO Dr. L in April. Results not in yet, but I fear glucose & a1c will be less than optimal due to late-night carb debauches.
My refraction at Warby Parker went well today--acuity in my R eye got a bit better, to where it's sharper than the non-tumor L eye. But my astigmatism got a bit "different" (not worse but "wavy" in a different way). So I didn't get new readers or shades, but did get a new pair of progressives in a different color & shape of frame. I was hoping they could just swap out lenses from 2 pair (readers & non-Transitions progressive spares) I got last year, but WP's new policy is to no longer replace lenses in frames they've discontinued. And of course, those two--while only a year old--didn't make the cut for this fall.
I remember my own "oh, shit" bc moments clear as a bell. First, the patient portal message the next morning after a routine mammo--"focal density" not present on my previous 12+ mammos. Then the ultrasound, when the radiologist turned the monitor to me to show me the little black jellybean that didn't squish when she pressed the probe on it. I knew that meant it was not a cyst but a solid tumor, and I actually uttered the words "oh, shit." That the radiologist didn't reassure me made my heart sink. Then, the next night after the biopsy, when my GYN's partner (GYN was en route home from vacation) called, she asked me how my pain was doing. Puzzled, I replied that I wasn't in any pain and that the biopsy was 36 hrs earlier. She muttered to herself "hmm...note says discuss pa...oh, path" and she stopped. After a beat she said "I'm sorry, it's invasive ductal carcinoma, grade 2." I felt the bottom drop out--I had been expecting DCIS at the worst (only later did I learn that IDC doesn't necessarily start as DCIS). I collected my thoughts and asked about the hormone receptors & HER2 status, but they turned out to have been as good as IDC gets.
And the ocular melanoma...I went to our family friend the retinologist fearing a huge L eye floater might mean a retinal detachment...but when he dilated my R eye he found the tumor. He said that no way are those kinds of ocular tumors benign--either (exceedingly rare) bc mets or (more commonly but still very rare) melanoma. I was shaking all the way home.
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Three or 4 years prior to dx I had my regular mammogram & ultrasound - dense breasts. The ultrasound found a spot in my right breast they wanted to biopsy. I wanted to know WHEN could they do it, now?!? No not now, they patted my arm, there are appointments tomorrow for those that need them, but you’re good. I had to wait a week for biopsy; 5 samples; all benign - told results over the phone.
Fast forward to 2017 (4 years ago yesterday) mammogram and ultrasound, they saw something in my left breast - radiologist said even if it’s not cancer you need to see a surgeon and get it out. I asked again, When do we do the biopsy? Tomorrow 10 AM. I came home and told my partner I had cancer. He said oh you don’t know; I said I pretty much do. I had the biopsy, had to wait days for results; I called dr asking are results in? She made me come to the office; again I told partner, I know I have cancer or she would have done the same as last time and tell me over the phone. Dr saw me, confirmed what I had already known in my heart.
I go on 10/7 for my mammogram and ultrasound. It’s always a hyper aware event. Hoping those of you with PTSD can get through all the many different health & home issues we all face. HUG
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No surprises in the bloodwork--except at 5.3, my a1c is the lowest it's been since we began testing for it. HDL dropped a bit--from 108 the last time to 96 today. MO sent me a note "bloodwork looks fine."
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Great on the a1c Sandy and all the rest of the bloodwork. And Cindy,absolutely" it is always a hyperaware event" for those of us with PTSD. Now a conundrum. In August 2018 I had a clean mammogram. Gyne sent a letter saying breasts were dense, perhaps an ultrasound was in order, but they didn't know its value in older women, and expense, etc. When I went to wonderful PC doctor in October, I asked him what I should do. Gyne had done thorough clinical exam as did he. He advised ultrasound wasn't necessary. In December 2018, in the shower in Key West, I found the lump. Couldn't even taste the always divine strawberry shortcake that night- although, because of having ovaries removed at 35, I had never worried about BC.
So yesterday, as is protocol, I believe, an US was scheduled right after my mammo. When mammo was fine, was told, as the two year before, that the US wasn't necessary and I could just leave. Last night, through the portal, I got a letter saying that because of dense breasts, I should, perhaps, schedule an US. Conundrum and PTSD. Am not going to, though should have in 2018.
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Our relationships are our sacred responsibilities, for they are the framework within which life is lived. They show us where we have more learning and loving to do. Our interactions with others call up the disabling beliefs and negative patterns of behavior we need to release—the cynicism, anger, resentment, and jealousy that block love's flow. Our relationships are our mirrors; they reflect where we are in consciousness. And if we are willing to face the truth about ourselves, our relationships offer the lessons that lead to our greatest transformation. -Susan L. Taylor
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Hope it stays a little cloudy today. It wasn't so bad yesterday, but some humidity was around. We are still awaiting possible rain and I'll likely be glad when it comes.
I think I spoke too soon ( or hope I didn't already tell you ) about the coyote at the feeding site. I was congratulating myself ( not on having done anything ) and allowing myself to feel a bit more positive since I had not seen the coyote for two days. When I returned from the other side of town where I help my lady friend, there the thing was --- right out in the open where I was thinking it would not go. That was one of the major reasons I thought it was gone. Well, there isn't much I can do. No one else is taking the thing on either. I do not want it hurt -- but hopefully, just re-located. Will have to see how it goes.
Keywest, that is a problem when you keep getting advice that is counter to whomever is dealing with your current results. I do think someone reads the studies immediately so as to advise -- then apparently a second going over. I would not know exactly how to take that either. I've been told I have dense breasts, but no one ever requests further studies -- at least not since I started 3-D digital mammo's. I always tell them to crank it down as much as they want -- doesn't take that long to get the picture.
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Keywest - you know it’s your call. I’ve been getting mammogram with ultrasound following it for years, due to dense breasts. My bc would not have been found, possibly for another year or two, if I didn’t have the ultrasound. Mammogram was clear, ultrasound showed something. My gyn, and 2 breast surgeons couldn’t feel anything. I now go to the Breast Center and it’s a 3d mammogram and ultrasound following. I bring a book for the wait between the two and for the time it takes for the review by radiologist.
Funny not funny, it was the nurse midwife that always tacked on the ultrasound to my script. Apparently my OB/GYN wasn’t on board with adding them.
Sandy - your 5.3 a1c is great!
It was cold here overnight and I’m still cold. The house is 61, and it’s 63 outside with on & off sun. Saturday & Sunday going back to 70-73 but so glad the pool is put to bed for the winter. We still have the screen house to put away for the season. We’ll have to evaluate its use because maybe it could get put away this weekend. Work work work
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Most relate to the world by their emotions, which means they know
only the unreality of illusion--this world of emotion is the world of
duality, of love and hate, of joy and sorrow. All emotions are relative
to themselves, and last only as long as the supporting thought is maintained. -A Spiritual Warrior0 -
Hmmm, Dh said it rained all night long. I slept through all of that even though I got up a couple of times to use the bathroom. I did not have my hearing aids in so remained un-aware. It will stop and the sun ( but I hope muted ) will come out for the afternoon. I'll have to check with hopes it won't be too bad for the humidity. I think long pants may be in order for the day.
I did wash my car yesterday. I thought the weather might be correct and I was afraid that I'd have dirt rivulets on my car if I didn't. The coating I put on it so far has held up pretty well and most of the time ( if enough rain at once ) it only takes a rain to clean it. At some point -- maybe Indian Summer if I can figure when it is going to come -- will be a really good time to put more of the treatment on the car again to get me through winter. So glad my cousin talked me into using it. Not expensive and doesn't take much to do the car and so easy to apply.
Hope you are all going to have a good Saturday.
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thank you, I knew in my heart it is not a quick solution, and the testing results are sssllooowww, then appts with this doc and that, it is not done quickly.
So why did I have the appointment before all information was in?
But please, have empathy with us in the process. I am strong, but I'm still scared, I know medicine and treatments are improving all the time. I know it was caught early, it's the good kink of cancer- it is still cancer. It is hard to wait when you want to be done. Listen to my questions, I know doc, you repeat them all day long, but I need to hear you tell me.
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Irish, if you are a religious person at all, this may be the time to activate that. We do all we can, but beyond that.......
I have been angry at the slowness of the process. If you look at my signature, the first diagnosis was DCIS. As HER2+ is a fast-growing cancer, the DCIS apparently grew fast, and eventually mutated in order to invade other structures. If I had had a mastectomy soon after the diagnosis, I would not have needed chemo. There is now some evidence that chemo is not necessary even with my diagnosis at the time of surgery. But it was still an early diagnosis, even though my feet will probably remain numb for the rest of my life.
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thanks McBaker, yes I am a woman of faith, I am standing on the truth that God was not caught by surprise and that He is in control.
Yet I feel like the child that asks why, why why to their parents.
The human side of me is a former red-headed fighter.0 -
I am just guessing, but we have a place https://community.breastcancer.org/forum/38/topics/738190?page=376#idx_11251 and mostly keep it confined to there.
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Thanks MC. I didn't know that thread existed. Everyone here has a place to fill in for whatever your needs. Irisheyes, we have found that staying away from religion and politics here keeps mis-understandings from taking place. Many here have faith in one way or the other and a few may be atheists. Whatever they are is fine. If it is authentic for them I say fine. My son ( the one who passed away a yr. ago come December this yr. ) was an atheist. I consider myself spiritual and therefore can embrace almost anyone's idea of religion if it is not the way far out kind. So, whatever we say here, if it is religious or political in nature we keep very light.
You are so right, cancer and its treatments take time. I can't recall but I think all of mine from start to finish took about a yr. Sure seemed like a very long yr. back then ( beginning in 2007 ) and seems like I am now doing something almost akin with the bladder dx. I will get there. I do have the value this time of knowing we don't always get to go from A to B, but may have to meander around with things for some time. I though, expect success and that is the picture I put in my head and leave there.
Always wishing you well from your pocket.
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thank you IlliniosLady, I understand totally the need to keep things were they need to be.
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Time for a laugh:
I have two of these who will hassle any cat that gets in the way.
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Jackie, it comes in a small size too. If I were more techie, I'd post a picture of my model, a Norwich terrier.
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Actually mine are one large ( Bill ) a black lab retriever and ( Minni ) a miniature pinscher w/something else. A couple of my cats are in love with Bill who is generally as sweet as he can be to them. We have a multi household here of cats and dogs and they all get along -- some just okay, but some as mentioned really like the dogs. All household pets spayed or neutered. Asap after arrival. Keeps us a little saner and helps the pets mellow out quicker and feel way less rivalry.
Post pictures will copy to your clipboard and paste. I use a Windows 10 which by now is fairly obsolete I think. Or I should say I think there is a Windows 11 now but I don't know much about it. Not tech oriented here either. I've taught myself some things but I'm usually the last one to know so to speak. A while back when Ruth and ??? a couple of the other ladies were doing Zoom Meetings I never managed to figure it out.
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