STEAM ROOM FOR ANGER
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KB870, that makes no sense. Is there some logic to this bureaucratic madness?
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finallyoverit I am right there with you. Sick and freakin tired!
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Thanks for all the info Bluebird. I just wish we could treat people the way we treat our pets. I know I was not a coward in the situation with my mom. It just was agonizing to hear my sister's voice asking me if I was sure this is what my mom wanted. We both knew it was but the whole process was quite painful.
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scared, I got mammos like clock work.
Unfortunately, mine is "occult (hidden), amorphic (without shape)", and can't be detected on ANY mammo.
My back problems led to a dye-infused scan and that's how they found it. Hell, they even did NINE MORE mammos after the scan trying to find it. They could not. They had to use the SCAN to aid in the biopsy.
Dr Susan Esserman of UCSF has complained for years about how useless mammos are. We need a better method of detection.
I am the poster child for "false negatives".
I didn't choose this either.
L
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Finallyoverit - I am feeling it too. Today spent all day feeling terrible and studying up on liver mets tx and then more info and printing to read later. All while my poor dog gets older and waits for me. This is crazy. My goal is to live longer than him. That is a horrible goal but it is all I really have now. Life and plans got blasted out of the ocean.
There is a thread https://community.breastcancer.org/forum/83/topics... oh and this one https://community.breastcancer.org/forum/83/topics...
The experiences of all these women and men will help you to not condemn self. I started both threads some years ago. I don't manage them, admin seems to do that mostly, esp after I left BCO for a few years.
Going to clean my poor old dog's ears. Nope, he's my puppy.
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Thanks, Tarenee and Bluebird.. I'm still really grouchy.. just over the whole freaking deal. I could talk for hours of the stuff I'm sick and freaking tired of.. but you guys get the gist. I have 3-mo scans coming up so that can be part of my issue. Just holding my breath until they are over. I don't allow my brain to go to the dark places but sometimes I can't help myself. What if they tell me, sorry, you have 6 months. I'm 42 freaking years old! None of us should hear those words. I guess I'm just bracing myself.. whatever it is, it sucks
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Finally- they have told me twice to get my affairs in order. My goal now is to keep proving them wrong. Helps me stay in denial. I love denial!
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Thank-you Runor...I will think about everything you said...it is very helpful as Iam really struggling with the self-hate. I think it was nothing short of a miracle that I was not diagnosed with Stage IV from the start.
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Thank-you Lita for your very kind post...(((Hugs))
I wish scientists would get this figured out. Why is it that other stage 4 cancers can be cured, but not BC...it doesn't make sense. That makes me mad as well...
Hugs for everyone else on here who needs them!!!
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Please don't be kicking yourselves that you didn't take care of yourselves or didn't get mammograms as often as you "should have" please note that no less than Dr. Susan Love notes the limitations (and controversies) of mammograms.
from Dr. Susan Love's Breast Book, chapter 7, pp 151-153: Screening
"When screening was first introduced, the understanding was that cancers grow at a certain steady rate and at some point get out into the rest of the body. Thus, we concluded, if we could just find the cancers before this happened, we could prevent people dying from breast cancer.
"This rather simplistic notion of cancer was appealing to doctors and the public because it was easy to understand and suggested that there was something we could do mitigate one's chances of dying from the disease. The problem is that nothing is so simple. Some cancers are so slow growing or even dormant that they will never cause you a problem; we don't need to find those. Others will slowly grow and eventually spread and kill you if not found 'early.' And some grow so quickly that by the time they are detectable through an exam or imaging, they have already spread, and early detection will not be early enough."
Cancer is a nasty beast. It doesn't care if you took care of yourself, or got mammos when you "should have" or any other factor that may or may not have "saved your life." In another part of the book (I can't find it right now), Dr. Love mentions that only a small % of cancers were found (or not found) early enough to make a difference (the middle category above).
(Edited for clarity)
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Here’s Dr. Love’s chart showing the difference in the detection rates with and without mammos:
In 400 cases, 200 with mammos and 200 without, the numbers come out very similar.
(Edited for clarity)
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Yes Scared, I agree with rumor, Lita and mominator. I had my mammon pretty regularly. Always clear, never mentioned that I have dense breast tissue. My last mammo I was late by 6 months as I had read women over 60 who have had clear mammos can wait for 2 years to reduce radiation risk. So I didn't think much of 6 months. Suddenly felt and saw a weirdness in my breast, went in. Boom! Not only BC but already MBC in my liver! ILC which is harder to diet due to the "stranding" appearance. Just like that in 1 1/2 years. Still made me wonder if previous mammo was scrutinized enough? My hospital at the time did not have 3D mammo machine which is supposed to be a much improved technology for dense breast detection. I just got a fund raiser plea in the mail to help pay for the new 3D machine they just acquired 2 years after my Dx! Even though they passed a bond tax 5 years ago for millions for the new cancer center here in did not include this technology????? Yes, I feel a little bitter......
I have had guilt too for every little insult I have ever brought upon my body, the times I got lazy about exercise, my sweet tooth, drinking a little too much wine with the girls ect ect ect. But in my heart I know I should let it go. There are too many people who have cancer for no reason but bad luck. Maybe the formalgyhide in their new carpet, auto exhaust, microwaving in plastic or cooking too hot with Teflon pans? We can only obsess for so long and never have an answer of "Why me?" Why little fresh babies? There is no answer except it is a despicable evil that exists in this life.
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Interesting statistics mominator.
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I had a Pet/CT this morning at my local hospital. They have no where near enough handicapped parking spaces. As I was driving to my MO's office to get my port accessed (still have it, use for everything, no sticks for me), I noticed that the hospital (across the parking lot from my MO), had more than half of these very rare handicapped parking spaces blocked for "painting." No one was painting. I had to park way far away and walk to the hospital. When I got in the door of the hospital, I was standing there, dazed and confused, when a very nice hospital employee happened by and asked what I needed. That is very common at this hospital. Very nice employees. He got a wheelchair and took me to radiology where forms, etc. are done and I go to Pet/CT place. The regular machine was being serviced so an older one was there. One that needs to be kept in a FREEZING room. The tech said to stay still as he rolled me into the machine and I said, "I can't. I shivering." They had blankets but the blanket warmer was missing somehow. The blanket I had was as cold as the room. I got through it and asked to be wheeled back to my car halfway across the parking lot. The Pet/CT helper could only take me to radiology. The volunteer they called could only take me to the lobby. I dragged myself back to my car, just happy to be outside in the warmth. I sat in my hot car for a few minutes and baked.
Did I mention that I have MS and can't walk more than 50 yards? You know how you are not supposed to exercise the 24 hours before a Pet scan? I did get some exercise but I guess walking to and from my car doesn't count. I mean, this is a HOSPITAL. People who need handicapped parking go there ALL THE TIME. They had NO PLAN for accommodating people while half the handicapped spaces were blocked off. The person who wheeled me back to the lobby said it is the city that won't let them have more handicapped spaces. WHAT??? This is a HOSPITAL.
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Jaycee~ I'm so sorry that happened to you. Not only the lack of parking spots but the apparent lack of empathy from the hospital staff. I'm sure there are regulations, but come on now, what happened to kindness to your fellow human?
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The hospital staff is great, like the guy who hunted up a wheelchair for me. The problem is with the city and hospital management and the contractor doing the parking lot work. They've been doing it for months. Good luck complaining to any of them. After posting that, I actually felt bad for complaining about something so trivial (just seemed trivial afterward) when so many here have major issues. Anyway, finallyoverit, thanks for commiserating with me. I'm over it.
About mammos, my sister just had her first 3D mammo (she's 70, had stage 0 at 57, totally fine now except the forever anxiety) and when the 3D image was compared to the older image, they "saw something" and she had to go and get ultrasound images taken. They were done by the most senior radiologist and he said it was nothing. Just differences, seeing more, with new machine. So she went through several days of high anxiety for nothing. At her age (not that 70 is old, I'm 68), it probably took months off her life. I'm not admitting to the number of years I went without mammos but I am almost glad I avoided all the hassle, anxiety, and dopey medical crap. Almost. How many times would I have been re-scanned, biopsied, and scarred into depression and sadness?
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Jaycee, contact your local TV news consumer protection reporter. You can tell them you don't want your personal information used, that the problem should be apparent by simply driving through the parking lot.
I've encountered similar issues where you have to repeatedly circle the parking lot like a vulture waiting for someone to pull out of a space so you can swoop in. Our hospital at least has valet parking...not free despite spending thousands of dollars for tests and surgeries, but still a welcome option.
Lyn
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Janet - to me that was huge for you. The walk, the stress. I could not have even attempted to walk. What then. I guess they expect that someone who is not physically challenged has brought you in? Hubby has trouble w pain and walking and he takes me around in the wheelchair. So him having to walk extra is just not acceptable.
Anger. Not sure. Perplexed. The liver biopsy revealed the liver lesions are ER + PR+ HER2- just like the original BC. But the lesions do not respond to the chemo the lymph nodes responded to. I am getting off the wheel at the cancer center I have been at, just too much crap to overlook. Sent this to my DD and DS earlier.
"Tonight I made huge decision. I am going to Goshen Cancer center. There are 30 + oncologists and specialists. Naturopath. Counselors. Even for Bruce.
Nurse navigator Kathy made decision for me to be easy after her two latest stupidities. Oct 3 DO rx'ed two chemos for me. She missed it, stood right there and somehow she did not hear. So when I was to start it on Oct 17 after biopsy it had not been approved by ins or ordered for delivery. But I didn't go on the RX since biopsy results would tell us if the cancer would respond to that RX. So I stayed on xeloda. So yesterday at appt the RX was needed and had not been approved so now I have to wait another two+ weeks to receive. And I was to be a scheduled for patient training to take it but no appt w DO's nurse until Nov 16. I will or would take it anyway. But such bull*$^@. Second stupidity. DO is encouraging me to have TACE chemo bead inserts into liver lesions bcz they are too big for radiation or chemo regular to get it all. And too big for any ablations. So I told her I want a specialist dr that does through wrist. She said she wouldn't ask for that. I could talk to them when I get to intake appt. I said no, only wrist. So did DO before I told her AGAIN. I said I would be researching for one of my choice and get to her for the referral. Today she called she had a dr in Ft Wayne who does wrist but it is riskier. And viola she had already made the appointment for me. Damn. So I researched this dr and found nothing on him being a specialist! He is a general interventional radiologist. Like hell. She just swiped up the first one she could find. Now 1 to 2 out 100 people who go through TACE die from it and more die from other complications like lung clots and heart damage and kidney failure. And 1/3 have serious problems, some end up in hospital for two weeks or in bed for month/s. Geesh. Why do i want this? And why wasn't an ultrasound done when i complained of liver pain? Why always push me into a radiation scan which I refused so it got big (did not respond to the chemo that was working for lymph nodes, you see) so surprise surprise, but I said it hurt? And why would I want a generalist? I looked for 3 hours and researched more on TACE and then I checked Goshen Cancer Center. They have a similar procedure that is more intricate. It is only done in a few centers in nation so far and that is only one in region. (Oh but darn, tonight I reexamine and realize it is radiation SIRT beads, radioisotopes, I was trying to avoid radiation.) They may have another treatment. I will call in morning and find out how long to do intake and how far out for a beginning treatment. Then I will know if I should start the chemo DO rxed. Thank you, Kathy! DD said she didn't pay attention, sat there looking around and daydreaming. I am always too busy to notice, but also try to engage her so she seemed to be paying attention then. This was a biggy.
Also, biopsy showed liver lesions are SAME as breast cancer so that is a huge complication. Seems this Ned's sted for what chemo it will respond to. Dr. Wanted me to give up xeloda but I refused. God no, after being nearly suffocated and smothered and strangled for months.. No way. So I was rxed low dose xeloda. And another chemo that should could maybe work on both. And a hormonal therapy that blocks my hormones from cancer cells feeding on it. I will be better off at Goshen Cancer Center. "
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I know that what I am going to write in this post is nothing compared to what some of you are going through. But I just need to vent a little and let some steam off my anger.
This morning I woke up and as usual dragged myself in the kitchen like one of those stiff mechanical toys to take my pain killer and chug down half a cup of coffee (I have very low blood pressure so that's like a medicine for me). Then I went in the bathroom to brush my teeth and comb my hair and for the first time I realized with a shock what I was seeing in the mirror. This elderly woman with the face disfigured by pain, with movements slow and stiff and dead eyes, but wearing a tank top from which emerged a gorgeous cleavage. And suddenly I just got filled with so much anger. Anger at all the doctors that lied to me about the side effects of the treatment. Anger at all the doctors that now say "well we saved your life now deal with it" even if I had told everybody from the start that I'd rather have 2 good years than a lifetime of poor QOL. Anger at so many people, anger at the powers that be and thinking of the decades in which I exercised, ate "disgustingly healthy" (how one of my ex-coworkers used to say reproachfully), at everything and everybody that had let me down in the past 8 years. 8 years of Hell and more years of Hell getting only worse because all the side effects I got from the treatments are all degenerative so they can only get worse, not better, and that adds up to the aging process. I can barely take care of myself and the house and my dear pets. From the vibrant, super-active, compassionate and loving person I used to be I became a bitter, resentful, semi-hermit. I don't even enjoy food anymore.
@ing pretty boobs.
If I could give up my boobs but get all my former self back I'd do it without thinking a second more. Even if I'd be told "this will be for only a few months and then kaput, end of the line".
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Lyn, thanks for the suggestion but by the time I got anyone to look, they would be done. I'm about to rant yet again about another doctor situation and these (the doctors and the rants) keep me pretty busy.
Bluebird, I hate to ask for a ride, though DH offered about 62 times but I guess that's what they expect. I saw a lot pf people getting dropped off at the door. I still like driving myself and having independence. Bluebird, I know your posts are long and rambling but I read every word. It is so hard making these decisions about what to do next. One big cancer center taking over seems so appealing.
Now my next (and hopefully last) rant about a doctor experience. Yesterday afternoon, I went to the most patient-unfriendly doctor's office ever. I hadn't been to my neurologist in several years and now I remember why. There is only one neuro practice where I live. There used to be two doctors in it. Mine left town so now there is only one. (There were two other neuros in town several years ago but one was arrested for pushing opiates and the other was arrested for pedophilia.) I guess if you are the only neuro in town, you can treat patients however. My favorite was this: the windows where you check in, (and I know a lot of nurses close the window, that's ok) were covered with a reflective material that made them look like a mirror. You could not see in. You did not know if anyone was there. You could just stand there and wait for...I don't know. I could see myself and everyone else in the waiting room, which BTW, had the MOST uncomfortable chairs in existence. I always use the chairs in a waiting room to evaluate a doctor's patient friendliness. These were a bad beginning. I was being treated as a new patient since I hadn't been there for few years. Yup: FORMS. I got there at 3 as I was told to to fill out forms for a 3:30 appt. I signed in on the sign in sheet and sat down to wait for the forms. At 3:15, the mirrored window happened to be open (someone had just left) so I sneaked up and asked if I could have the forms. The person acted like she had never seen me sign in (she had taken the little strip off the sheet with my name on it) and grudgingly gave me the forms. She took and copied my insurance cards and I saw that the top form had a section for insurance info. I asked if I still had to fill all that in since she had my card info. She said yes. Then, she handed me the forms and with some glee in her voice said that there are six pages. I filled them all out in time for my 3:30 appt. which didn't happen until 4:15. The NP I talked to (you have to wait months to see the doctor) was of little help and just wanted to get me into their MRI machine where they make all their money. She said she could not prescribe anything for neuropathy without an MRI. I was pretty disgusted by then and just wanted to leave (now that it was 4:45 and I could drive home in rush hour traffic). I know we all experience these trials all the time. Why does it have to be SOOOO hard?
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Running out the door to an appt w DNP. Just had to say I did it . Canceled all meds and appts at cancer center and am on intake process for Goshen Cancer Center. I did it. Feel much better already.
Janet, I read all yours too, will comment later. Seachain - I completely understand. They leae out little things that are important later, like the severely compressed bronchial will still be severely compressed after radiation, no better. You would think that would be important before radiation decision?!
Gotta go.
Hugs for all !!!
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So my day started out horrible but ended with a miracle!
On the way to the hospital which is an hour and a half away to have my tubes changed out one of them came undone. I had my heated seat on so didn’t notice until I was completely drenched in pee! Even my shirt was soaked. Had to stop at the mall to buy, underwear, jeans and a shirt. Was so upset. Like I wasn’t stressed enough about the procedure.
Well they put dye in both kidneys and the urine went into my bladder. The right side was much slower then the left. They exchanged the tubes but capped them off just to be safe. If I don’t have any issues they will take them out mid December. But right now I am FREE of having the dreaded pee bags strapped to my legs!! I am not going to get too excited about the right side just yet though. But for now it seems ok. 🤗 was so happy I cried!!!
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Dianarose~❤️ You deserve a break my good friend. I am thrilled for you. You have been through so much these past three months. It's about time ! Much love ~M~
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Janet - why does it have to be so hard? Yes. Why do we have to do our own research and work and watch them like crazy so they don't kill us off. And why all the massive scans? When a doctor was a doctor hahaha and had to listen to patients and touch them and think for themselves. Instead of scans and rx pads with no real thought.
The reflective material would have made me ticked really.
I just spent an hour with my DNP. 1) Ultrasound of throat / thyroid ordered. 2) SAS oh SAS!!!!! the AMITRIPTYLINE has been rx'ed, I have it. She did it for anxiety so ins would approve. I have anxiety, sadness, cannot sleep well, so FOUR for ONE. WINNER. I will take it like the voice doctor outlined, she know that. 3) Throat culture, sent home w me to hocker a good one in morning and take to hospital, gross, sorry.
My DNP hugged me and said she loves me. I said, oh thank you. I'm a real gem. I don't say things easily. Am not a grab and squeal, "I love you too!" type.
Lost another 4 pounds in < 2 weeks cuz I cannot eat. Other people would lose 20, I get 4. Once could barely eat for 9 mo and lost 8 pounds. And I have a lot to give up, but guess now it is better I am bigger so I have something to give in these dire days.
The Goshen Cancer Center got 57 5-star reviews w half comment on the place as wonderful. I have hope.
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Well the right kidney did not work out. By 7 I had to have hubby hook up a bag because I was in terrible pain. Pee came out like a fire hose and the pain was gone. Left side is doing great so far. Still happy to be rid of one bag.
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If no one saw this article on how bad breast cancer affects us it says it all perfectly what I can't say to everyone. http://www.refinery29.com/2017/10/176194/life-afte...
The suckiness of it all......
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Colorado, yup, yup, and yup. And then there is stage IV. I'm not diminishing what non-stage IV people feel. The author was exactly on target. I'm not sure there is that big a difference between stage IV and not. I mean, there is, but there's not. Wondering what's going to happen next. Every ache and pain is cancer. It goes on and on. Forever.
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Very interesting stats Mominator!!! I still torture myself over what I should have done all those years ago...but it does help to read those stats..
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Thank-you for your post Artistatheart...I've always kicked myself when I'm down and having BC is no exception. I hear ya on the drinks with the girls. But, then why did we get BC and they didn't - is what I ask myself!!! There are people who do all kinds of things to their bodies and NEVER get cancer...it's amazing. And, gut-wrenching evil when it happens to small children or babies...
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Jump - did you hear from dr today?
Colorado - oh, that's good stuff, that is really good. I especially like... "Because to survive breast cancer, the marketing gods will have us believe, is to thrive! Ever visit a breast-cancer website? More smiles than a dentist's office. The women in colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they've just returned from a wellness resort. There's no fear of recurrence in their eyes, no hint of any long-term issues or complications. This airbrushed reality is held over the rest of us, setting us up to sound bitter or lazy if we aren't 100% happy as soon as we've "beat" the disease (and what does that mean, exactly?)." and "My brain is soup (except when a new ache or itch might be cancer again, then I'm lucid as hell). " and "My biggest challenge, though, is staying sane under the pressure to keep all this a secret.. Without estrogen and progesterone, I'm a miserable, volatile beast. One anti-depressant — out of six that I've tried — takes the edge off, barely (and causes a tertiary set of problems, but I give up)."
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