STEAM ROOM FOR ANGER
Comments
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Beesie, thanks for the clarification on Rita Wilson's diagnosis. There are many published stories about her that only mention the lcis. After your post, I found stories giving more details explaining that at one point when she had a questionable test result, her friend suggested a second opinion and in getting it, she learned of the ilc.
The stories about the Canadian celebrities are interesting.
Your next post with the link to “celebrities sharing in order to inspire", yes, that type of media hype tends to ruffle my feathers. I agree, Crowe's comment is misleading, even untrue. The article gives only snippets of each “star's" experience. I believe I read that Kathy Bates deals with terrible lymphodema which you almost never hear about from celebs. Nor, as you say, treatment side effects. I did appreciate that Julia Louise Dreyfuss did not jump on the pink Komen bandwagon that the majority of them do. A lot of people don't realize she grew up in an extremely wealthy family before ever becoming an actress, her father being a billionaire. Yes with a b.
Many or all of those listed in the article have no financial worries. They recuperate at an ocean-front home one of their wealthy friends offers. I'm sure none of them cringed when they had to pay over $3,000 in one year for prescriptions on top of health insurance premiums and copays like I did (while simultaneously helping ds with college tuition and saving for dh's retirement which I myself may or may not see). Some get a book deal worth millions. I don't picture Tom Hanks taking out the garbage while Rita Wilson cleans the cat litter box, the kinds of daily matters still needing done after dx that dh and I do at our house. And it'd be nice if dh could retire early so we could do more traveling but he needs to work to keep affordable health insurance. If we had a celeb's wealth, it'd be different.
So I bristle at the media acting like this is an equal playing field. Yes, I still think the women can be and are inspiring, but the media takes their lives out of context to make it seem as if they are living ordinary lives “just like us" when they aren't. So that is misleading.
Some of the women's listed net worth:Kathy Bates $20 million
Guiliana Rancic $30 million
Eddie Falco $50 million (it's reported she made $500,000 per episode for Nurse Jackie)
Sheryl Crowe $70 million
Rita Wilson $100 million
Angelina Jolie $120 million
Julia Louise Dreyfus $250 million0 -
KIDI - I'm sorry your SIL is having such a rough go. For her scalp, I recommend a mix of fresh aloe gel (drained of latex) and vitamin E oil. I had a severe rash. Even with prescription ointments I used an aloe mix on my skin in between applications.
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Not to mention how many go through it alone with no real support. Cancer is hard all around to go through and to minimize it at all is to say it is not. Yes, early detection helps with treatment options. Does it mean there are not issues, NO!!!
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bcincolorado.....I am one of the ones who went through breast cancer with no real support. Everything was made more difficult (and is more difficult still) by the fact that I was/am alone.
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Thanks Serenity, I will pass that on to her.
CM2020, I'm sorry you have no one to turn to. ( other than this forum). Sometimes SIL and me laugh about having cancer but then we just look at each other and say WTF.
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Thanks Serenity, I will suggest that to her.
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Beesie, ACK!
NO, early detection is in no way a cure! That is just irresponsible. I was just reading this morning (why do I wake myself up like this?) an article on the 5-20 year disease free (and not) survival rates (and not) for early stage, HR pos breast cancers that were treated with hormone blockers. TN status is a good predictor of recurrence, local, metastatic or contralateral occurrence, but even broken down into subgroups of T1N0, etc. status, which is certainly early detection, the 20 year recurrence rate is 12-14% depending on T1a or T1b or (me) T1c, and grade, with people with more aggressive initial tumors having a higher recurrence rate (not shocking). Sure, for 85% of people, it doesn't come back between years 5 and 20. But for 14% or so, it does, and if the T is T2 or T3, and the N is something greater than 0, the percent just goes up.
This is WITH 5 years of hormone therapy.
The happy talk sounds nice and all, but it isn't reality, and at least for me, yes, I hope to just continue living my life after the 12 weeks of taxol, 4 weeks of radiation, 1 year of herceptin, 7 years of hormone blockers. But the reality is, breast cancer for me is like a dark-matter, perverse version of pregnancy: once you know you have it, you can never un-know that you have it (especially this stupid month). It's just constantly in your head. And once the tumor is out, you're responsible for it; not in the happy way of caring for a child, watching him or her grow and become a beautiful adult whom you will never not feel responsible for, but responsible for monitoring it and all the rest of you for any signs of the damned thing, and for trying to rid yourself of it for the rest of your life. Cure? I cannot imagine a day where I will consider myself cured. Maybe if I live to 85, I'll stop caring whether I have it or not, but that is not the same thing.
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cm2020 I am so sorry you were alone physically and are. Please know virtually we are here for you.
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AMG2: you are right, it always is in your head. Me and my SIL joke sometimes that we HAD to get cancer together. Not a speck funny. We cry together too. IDT there is a "cure". More like a remission and you hope it stays the fuck away.
bcincolorado: I second your thoughts to cm2020. We are here.
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Three women with a microphone who I feel deserve some credit for their work in breast cancer. Betty Ford had breast cancer in 1974 and talked about it when the words "breast cancer" were not spoken, much less radical mastectomy, the common treatment at the time. In 1982 Nancy Brinker started the Susan B Komen Foundation. Yes, they started Puketober, but they also promote regular mammograms and federal funding for research for this "women's disease" which was not supported at the time. In 2007 Robin Roberts (Good Morning America) was very open about her treatment for breast cancer on the air.
Yes, all these were years ago. But veiled and fake messaging (and misinformation) has no place today. Those who spread it should be asked by the interviewer to explain their "facts" (Sheryl Crowe, there is NO cure, not even for you). We need someone with a voice to talk about the many types of BC complications (mental & physical) shared by patients and clear reporting about research and treatment (not "cure") for MBC.
On the other hand, it is not a celebrities responsibility to tell the world their diagnosis, if they don't want to. Many in BCO have admitted that they share their details with only a small group.
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Thank you for the sweet support. I appreciate it.
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To be clear, my gripe is about the way the media frames the cancer stories of wealthy celebrities and not about whether a celebrity discloses the details of their diagnosis,
I read a large volume of autobiographies by people in all walks of life, some of them famous women who had breast cancer. These include Amy Robach. Joan London, Olivia Newton John, Elizabeth Edwards, Guiliana Rancic and Carly Simon. I also read Gilda Radner's “It's Always Something" and even Fran Drescher's book, Cancer Shmancer. With a book, you get a much more indepth picture of their ordeal with the cancer nightmare. However, a book is not going to catch everyone's attention like splashy headlines created by news media for the purpose of grabbing the public's interest in order to make money. Media has a formula: tug at the heartstrings and don't make the details too ugly, end on a hopeful note.
In reading Olivia Newton John's book I learned she has a foundation and hospital in Australia that's done an enormous amount of work towards breast cancer treatment, research and education. So my hat's off to her.
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She has been through it more than once as well and has done a lot Australia I know. She is someone who knows how hard it is for everyone and wants them to be able to live as long as possible.
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There is a moderate tv celebrity in the UK who was recently diagnosed at 50 and there has been (what feels like) non-stop breathless reporting (in certain outlets) about her shocking discovery, how she hopes to still be there for her children, and the lead up to the "big surgery" including a topless photo in the gossip glossy. Reading between the lines it sounds like DCIS as she will be having radiation after mx. Now I know a lot of this is how the journo writes up the story and the purpose of giving the interview (get back to getting mammograms if you skipped during the pandemic or are skipping anyway), and the audience (skews into the older age brackets) but its been driving me nuts - this gal will be done by Christmas. Sure cancer is serious and we were all there at the first diagnosis stage where you didn't know anything, but this goes back to lack of understanding of the scope of bc in its many forms and how "oh she just had surgery and a few rads" is very different to "you are on chemo until you die". I hope people don't read that and think this is easy and curable so long as you get a mammogram or "early detection".
Interestingly this has been juxtaposed against another music celebrity who just died at 39 from de novo TNBC, focusing on how she had wished she had gotten it checked sooner and tragic death, etc. The early detection message really piles on the guilt when through no fault of your own you may have missed the lump, were too young to be scanned routinely, or in a lot of instances, a doctor wouldn't believe you due to being too young. Early detection needs to be a shared responsibility of both the individual as well as the medical community - here they don't do medical breast exams unless you request them and even then there had better be a need.
Regarding Shannen D - I am of the age where she will always be Brenda Walsh to me (and a Heather) and that character and show were both entertaining and informative back in the early 90s. I found it amusing when she came out with her MBC announcement that I watched Brenda have her first pregnancy scare, her first gynae visit, etc and now I get to have MBC with Brenda too. I think about her once in a while and wonder how she is doing, though last I heard it sounds like she is trucking along living the best she can with this like the rest of us.
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DivineMrsM.... I love biographies/autobiographies. I didn't realize Olivia Newton John had written one. Was it good/worth reading?
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cm, yes, imo, it is worth reading and not just for how she's dealt with breast cancer. It's called “Don't Stop Believin'" and came out in 2018. I enjoyed reading about her successful music and acting career as well as her personal life. Back in the 1970s when I was about 15, her first singles started getting played in the U.S. I remember riding in the car with my best friend's mom, a very proper and straitlaced lady who always listened to “country and western" music stations (my mom listened to pop), when “Let Me Be There" came on the radio. Great song. Best friend's mom casually remarked, “I can't wait to see what this Olivia Newton John looks like because all the dj's keep going about how gorgeous she is.“ This stands out to me probably because the mom didn't usually discuss that kind of topic with me. And of course, I later saw with my own eyes that ONJ was truly beautiful, and she has retained her beauty through the years.
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Sondra, She’s Brenda, Heather and Prue (charmed) for me too. I follow her on Instagram, she seems well enough, just living as normal as possible with MBC. I’m glad she’s public with it because is possible to live with this and be productive and happy too.
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There seems to be a lot of misinformation and confusion out there about exactly what mammograms can and can't do. It seems like the worst is the implication that all breast cancers are the same, and if they're diagnosed early, they're not a huge problem, but if you don't catch them, they grow and grow and grow and push into other parts of your body like something in a horror movie. There's no information about the different types, and no information about how just a small cell or two can travel to other areas. I think everyone on the planet is aware of mammograms by now; it's time to really educate people.
My aunt was diagnosed with de novo breast cancer back in the early 1990s. She had gone to doctors for quite some time about pain in her shoulder, and because she was in her sixties, she wasn't even x-rayed. She was told, "Oh, that's bursitis, really common at your age." She finally demanded diagnostic imaging, and that's when the cancer was found. But then the reaction of too many people to those in her situation is "Oh, she should have gone to the doctor sooner and it wouldn't have spread" like it's the patient's fault. There's a lot of vicious ignorance out there. I wonder if someday, everyone will get a baseline CT at a certain age. For all the fuss about mammograms, even though they're not perfect, at least they are available as a way to screen. Men get prostate exams, and colonoscopies are strongly recommended. But there isn't any screening for so many other cancers. Pancreatic cancer is truly frightening, and I wonder if there are early changes in the pancreas long before a person has symptoms, that will be discovered someday; same with glioblastoma. Even my less scary kidney cancer had grown to 7 cm with no symptoms, and was only caught on an incidental no contrast CT as part of my pre-op testing for the lumpectomy. From what I've read on forums, some people have 12 to 14 cm kidney cancers with no symptoms. That's like an alien latching on! If I'd been given a choice between stage 1 breast cancer and stage 1 kidney cancer, I'd much rather have lost part of my breast (or even a whole one) than a kidney.
More of a ramble than a rant, sorry. My ghost of kidney past gets jealous in October.
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DivineMrsM....Thank you! I will definitely get it. I love the story! She is beautiful. She also strikes me as just very genuine and kind.
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Doctors do often think it is "something else" especially if someone is older and they do not check automatically. Then there are the cancers that people go complain about something and it is not caught. Ovarian comes to mind. Too many women go undetected with that one.
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bcincolorado, it took two years for my endometrial cancer to get diagnosed correctly. I'd have episodes of gushing blood, wind up in the ER, see the (male) head of the GYN department, get a D&C, rinse, repeat, get told I was having a rough menopause, repeat. Finally I was in the hospital for an ablation and the doctor didn't show (turned out he was out of town on a personal emergency and the message didn't get forwarded). I was turned over to a female GYN who said she wouldn't proceed with ANYTHING until I'd had a biopsy. Not only was it cancer, my hormone tests showed I was nowhere near menopause. But I was a middle-aged female so I got an assumption instead of a diagnosis from the male doctor. 😡
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Wow, Alice your ordeal leaves me speechless. Another reason that all of my current team are women except for an orthopedist.
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My mother's bone mets took a long time to find because they kept saying it was normal pain for her age and kept sending her to PT.
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Rah - just want to say that not all maleGyn’s are like that. My husband is one and a month away from retirement. I’ve overheard enough dictations, phone calls and discussions to know that finding the cause of the problem is very important in his practice. But men are a dying breed in Ob-Gyn residencies. When my husband trained in mid 80s it was 50/50 now it’s 98% women in training.
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Oh Alice you had a bad doctor all around. Male or female. Not acceptable.
My onco is a woman and has what I call a "not good bedside manner". I think her personality. The one I had first in that practice was a man and he had a great one. Communicated well and made sure you understood everything going on as well. I was so sad when he retired. My primary doc is man and love him and trust him. Neuro doc bad bedside manner but love his NP who I see most of the time. It all depends on the doctor. To dismiss someone or assume something is not right either.
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bcincolorad - you can’t teach bedside manner. If by the time a student in medical school is doing clinical work, the ability to relate to other people is set from years of different interactions. I’ve only met one doc with a horrible bedside manner but I’ve met more than a few with the “I am a god” complex. Neither is good
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I have met surgeons with that attitude. When DH had his transplant there were 3 in the department. Each had different personality. One was arrogant and bad bedside manner in my opinion and head of the department. We had the easy going one fortunately when his came and he had a nice reassuring manner that he was going take care of him and it was something he did all al all the time and he would not do it if he could not survive the surgery. The other did not really communicate much with their patients and went to work and and we were glad we did not have that one either.
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The male doctor who ignored my gynecological issues was actually a very kind man otherwise. He at least stopped by when I had surgery, and apologized.
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Alice, do you still see an Ob/Gyn? I haven't been and was wondering if I still have to? Never had any issues there.
I don't really have a rant for today, yet. Spent the weekend at home by myself. It's still an adjustment for me as I think to myself, how long has it been since I spoke out loud? I have one friend that calls every weekend, and shared some text messages with a few others, but that was it. The weather cooperated enough with just slight drizzle so I went ahead and washed curtains and 2 windows in the bedroom. I finally slept in bed last night. I've been on the couch for months it seems. I'm ruining the furniture so I'm slowly transitioning back to the bed. Woke up pain free too so more incentive to just do it. Got a flu shot last week on what would have been our 37th anniversary. That was the one and only medical thing I had this month. Taking a vacation day on Friday, hope to finish windows and fall cleaning then. Weather does not look like it will cooperate to do a yard sale on Saturday, but there's always another weekend for that. I really need to get rid of some stuff and making a few bucks off of it makes sense, but having to go through it all, I'd sooner put it in a pile and light it on fire!
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