STEAM ROOM FOR ANGER
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KBL,
I ache for your anxiety, fear, sickness & frustration.
Jane
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KBL
Cancer is a total mindfuck and ILC is a mindfuck of that particular mindfuck. It's exhausting. I feel for you.
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Thank you all so much. I went to bed and slept pretty well. I haven't taken a walk on the beach in a while, and I think I may do that this morning. I have to breathe some sea air and take in the beauty.
It's so sad anyone has to suffer, but children-oh, the heartache. I was thinking about the ladies on the board who are so young or the ladies who are so young and have children while going through this crap. It breaks my heart.
I do realize others have it so much worse, and I don't minimize what I'm feeling, but it puts it in perspective. I do feel better today. I don't cry often, but I always know I'll feel better the next day and ready to march on because those tears clear out the anxiety a little bit.
Thank you, again, for being here for me. It means so much.
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Sending you blessings and hugs KBL. I hope you can switch protocols and get some relief.
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Thank you, Rah2564.
I took that walk. I only live 15 minutes from the beach, but I never go. It was cool before the sun totally came up, and it felt really good just to see the ocean. The sunrise was reflecting off the clouds. I’d love to see a sunset as well, but I think there are many more people for that, so this was great
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KBL what a beautiful photo! Thank you for sharing and I'm glad you were there to experience it.
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Thank you, bcincolorado. I really need to do it more often.
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KBL. I'm so sorry. Cancer sucks!
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Thank you, Sunshine99. Yesterday was a particularly low day. I do feel a tad bit better today. I really appreciate having this forum to get the feelings out and have the support of people who know what I’m going through
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KBL
I am glad you feel better today. I can really relate. My 6x6x4 mass and 20 nodes did not show up on any scans either. I have spent the last 6 years lurching from bone scan to CT scan to MRI to PET scans back to bone scans and yet never feeling much relief from the readings as they inevitably have "indeterminate" written in there somewhere. It is exhausting never actually knowing for sure, not having something definite to attack. If my tumour markers get any higher, my plan is to proceed onto a more aggressive treatment regardless of what does or doesn't show up on my scans.
All breast cancer diagnoses are mindfucks, but ILC seems a particularly perverse and cruel twist.
I wish for you a long remission with your next treatment going forward.
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Trinigirl50, WTF, that big of a tumor and 20 nodes? That is absolutely ridiculous. I am floored by that. I'm so sorry you've been through such a rough time as well. I didn't even know lobular when this all started. We sure do get educated. If only we had proof when it spreads. Hugs. Thank you for telling me your story. I like the choice of the word mind fuck.
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KBL - beautiful photo. The ocean/coast is one one of my favorite place, rain/fog/sunshine, I just love it. I hope your days get better. Changing meds is scary and hopefully your MO discusses why they think the change is needed and what to expect, sending hugs and hope the new med is the silver bullet.
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BlueGirlRedState, thank you. Sadly, I've lived here 52 years and take it for granted. I need to do it more often. Thank you. Hugs back to you. I've never been NED and don't think I will be, but I sure hope it can knock the tumor markers back again
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KBL: great picture! I think the beach or really any place in nature (away from people ha ha) makes us all feel better. Going to my sisters tomorrow and plan on a walk along the Erie canal. Not quite the beach but it's water.
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KBL, when I saw your photo, I thought "Beautiful sunset". Then I saw your comment about the sunrise. I've lived in California for most of my life, but I did live in Maine for two years after I finished grad school. It was so hard to wrap my head around driving EAST to get to the ocean. I took more than a few wrong turns during my time there. Now I'm back in California and the ocean is back where it belongs! haha
Thanks for sharing your photo with us!
Carol
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KIDI919, have a great time. I totally agree about nature. It's just so peaceful.
Sunshine99, yes, I'm on the west coast of Florida. The sun was coming up on the opposite side but reflecting. While I was walking, the buildings were in my way, but I finally hit a patch where I could see it when it got a little higher, but then the glow off the clouds went away. That's too funny about Maine. Funny thing about Florida is you can drive east or west and eventually hit the ocean without driving too far to get there. In the Keys, you can basically walk across the street.
I’m feeling a lot better tonight. Still scared of switching, but you all really helped. Thank you, again.
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My vent.
... to people who spew misinformation about breast cancer... and when presented with facts that contradict their misinformation, simply ignore those facts.
... people who don't understand that personal anecdotes are not more reliable/accurate than validated research data, nor do personal anecdotes invalidate research data.
... people who read selectively in order to pick up only the points that validate what they already believe.
... people who read selectively and never see answers already given to questions they ask and continue to ask.
This is not directed at anyone in particular. It's cumulative. Sitting here right now, I can think of at least a dozen people to whom this applies, and in my time here on the site, these statements apply to hundreds of people. While it feels good to write this out, I'll probably come back later and delete all this so as to not offend anyone who might take this personally... although I wonder if anyone who fits any of the above descriptions would actually see themselves in these descriptions.
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Beesie: Please do not delete this valuable message. IMHO personal anecdotes only serve to let others know that their experience may also have been anothers as well but they do not replace research data. I know they have helped me when I felt like an outlier in my BC experiences.
I look forward to reading your posts since they are grounded by facts, research data and aim at educating the reader. You are an asset to this site.
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Beesie, I've come across several posts that make me shake my head and wonder what you'd say. There's research and there's poking around on the internet for ten minutes, and too many people don't know the difference.
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That + hyperbolic language in the age of everyone shouting to be heard on social media = lowered critical thinking and perceptive skew towards the dramatic.
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You are fighting the good fight, Beesie. And even when you think it falls on deaf ears, you are very likely reaching someone else to whom that information is very welcome. Even if the original poster isn't receptive, many, many others are.
I too follow your posts with great interest. Sometimes they don't have any bearing on my situation, but maybe in the future I can use that information to help someone else who's struggling.
With great appreciation for a your hard work.
Trish
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Beesie,
I echo what others have said. Your solid, research based info from reputable sources is invaluable. I think that those who post misinformation and then find ways to make the facts irrelevant have their minds made up and really don’t want to hear facts. What you post my friend is of great value to so many!
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Beesie, it is clear that some do not understand that research represents many and personal stories represent one and that neither represent any other individual, especially in relation to any given treatment! Thank you for your voice of reason and please let it continue to be heard!
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As Abe Lincoln said, "Don't believe everything you read on the Internet." I saw that on the Internet, so it must be true! They can't publish something on the Internet if it's not true. (Who are "they", anyway???)
Just my attempt at humor this morning Cheers!
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Trinigirl50 I am so sorry to read this post. I know you have a big fight ahead of you no matter what you chose is best for you.
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Beesie,
I agree with you! Somehow, we failed in our high school education to teach more about the scientific method & how that evolves to medicine, earthquake prediction and any number of other scientific pursuits. There seems to be an almost steady distrust of anything that involves research, publication and the need to be able to replicate results. Misinformation abounds!
Jane
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I just got the EOB from my insurance for the genetic testing I had done. The process for genetic testing was that I went down to the hospital where the clinical geneticist worked, spoke to her for about 5 minutes and spit into a tube, then she mailed the tube to another company via Fedex. For this, the hospital billed my insurance $994! Insurance paid them about $120 and says I owe $0 but I am very upset. Close to $1000 for that?? The anesthesiologist for my outpatient lumpectomy barely billed more than that to actively monitor me for an hour! Outrageous! I really hope that's only the rate they try to gouge insurance companies for and that it is much less for uninsured patients because that is highway robbery.
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Beesie - jumping in belatedly to reinforce - do NOT delete your post. I too follow your posts and appreciate the research & wisdom in every word. Not much we can do about those who either don't understand or ignore "the truth" - but your words are always valued, even if we don't always reinforce the points.
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gamzu - have you seen the thread https://community.breastcancer.org/forum/112/topics/880692?page=2#idx_47 ? Be good to share your story there. Genetic testing may help with diagnosis and treatment. It seems like insurance would embrace and encourage it. It may take knocking the heads if our legislators before we see improvements in health care and health insurance. I have an outstanding claim frim 2019 where insurance denied the claim for BC testing because it said it had no relevance to diagnosis or treatment. The lab said they had gotten similar denials and were working on it. I have not heard back from insurance or the lab.
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gamzu710: My genetic test was 2 or $3000. I would have to dig out the paper work for the EOB. I signed a paper letting the test place fight it out with the ins co. This was to see if chemo would be of any help and if I carried the BRACA gene. IDK if this was the same test you had. Anyway I ended up paying 0. I had met my deducible by then.
Beesie: I might be one of those people...my multiple complaints about the SE of Al's. Like if I ask and or complain enough the facts will change! LOL
AliceB: You come up with the best cartoons! My son said he would make me a t shirt with the grim reaper on it if I want. Every year he does our shirts for our ladies camping trip. Annual Shrew sisters meeting. Our shirts feature Hazel the witch. I have 3 sisters and a wonderful SIL. My sisters x husband named us the shrew sisters. Well ,he shouldn't have been a shitty husband!
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