Crazy Sexy Cancer in Seattle
Comments
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Libby, I was diagnosed by a Mammo, the mass was NOT palpable. I'm 34, stage IIIC, No family history, BRCA-.
Also, Swedish's official position on the mammo's is to screen at 40, they are not changing their guidelines and are sticking with the ACS.
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The new guidelines are upsetting. Lives will be lost, as Dr Weiss says on this site. This panel was directed to find ways to lower the cost of health care and is a cost cutting measure. It is a form of health care rationing and resembles the rationing seen in the national health care system in Canada. This is what socialized medicine is. I lived in Canada for seven years and experienced that system first hand.
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I'm glad to hear from Jessica that Swedish is standing firm with ACS and screening at 40. Good for them.
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SCCA also has not changed their position, and has spoken against the new guidelines.
This whole things is nuts!!!!! I don't know of any cancer centers that are in agreement!
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Whew .... so this absurb news has been quite the topic of conversation this week ... and what a better way to chat with the medical field that encounters so many women that are "us", my timing for my MRI and Mamo with all the hoopla has been very interesting. The gal whom did my squish today was just up in arms that a recommendation suggesting that BSE are not viable for the 40 something crowd.
I also visited a recon support group meeting at Virginia Mason on Weds, one of the ladies in attendance is a Mamo tech at the hospital .... needless to say she as a bc survivor from her 40's was more than disturbed as well.
Susan ... Thank god SCCA (Dr. Lehman for one) is being rather outspoken on the opinion of the great research facility SCCA/UW is here in the PacNorWest.
Off to "cation" in AZ tomorrow ...hoping to sneak a peak via my Blackberry or maybe on my dh's aircard for the next 10 days. Shoot, wish insurance would pick up a bit of the tab for vacation as a medical issue ... just trying to raise my Vit D with a little sunshine.
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Golfer779 -- Have a great time! We'll miss ya! Hope you whoop it up and soak up lots of rays lounging poolside. See you upon return.
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Thanks everybody for your responses to my question about mammograms under 50. Just watched Meet the Press with the founder of Susan G. Komen. She, of course, was really concerned with the new guidelines. They quoted the study as saying that the number of cancer deaths prevented from mammography screening was 1:1904 for ages 39-49, 1:1339 for ages 50-59; 1:377 for ages 60-69. Obviously mammograms do a better job over age 60, but wonder why they found the difference between the other two age groups significant enough to separate - seems like the outcomes are pretty similar to me. My other point in asking the question was what about the fact that mammograms don't pick up the cancers in a lot of younger women - how totally frustrating and frightening. They need to be looking at what does pick up those cancers before you can feel them - ultrasound, MRI? The technology really needs to be better, and women really need to know they HAVE to do breast self exam. I was one who figured if I had the mammogram the rest wasn't that important. Well guys, gettin off my soapbox.
Cheers, how did you come to have a mammogram at 34?
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Hi libby, I had the mammo becasue my breast became slightly pink, my GYN said it was an infection, but I knew it wasn't, he sent me for the mammo that same day, and the rest is history.
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Ladies, Dr. Oz is having a follow up the debate on GMA last week. ABC 3-4pm today (Monday). I'm posting onto my FB sirte as well as the HFR(.org) site.
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Cindy - I have been wondering how chemo is going? I hope you are doing well and have minimal side effects.
All - hope you are all doing well. My sister, her husband and daughter are visiting for Thanksgiving - very fun.
Happy Thanksgiving!!
S
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Dear All, Below is an interesting letter printed today in the WSJ by Michael J. Reilly, Asst. Professor of Public Health Practice, New York Medical College:
The recommendations made by the U.S. Preventive Services Task Force, while based on available scientific evidence, are alarming to many in the medical community. As a professor of public health, I am deeply concerned that by de-emphasizing screening in women under 50 and only recommending biennial mammograms we will see an increase in mortality from breast cancer over the next decade.
One reason the U.S. lags behind other nations in health status is that we undervalue prevention in the practice of medicine. Instructing primary care physicians to not teach young women breast self examination and to reduce the frequency of mammograms in women in spite of the recommendations of the ACS and the AMA is bad medicine.
Although it may be true that the incidence and mortality from breast cancer is higher in older women, to reduce these risks we must continue to emphasize the early detection and recognition of this disease. Sometimes the best medicine is a good dose of common sense.
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Food for thought. Speaking of food, Happy Thanksgiving! Hope to see you next Thursday.
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Happy Thanksgiving to all! Can't wait to see everyone on December 3rd at Red Robin at 6:00!
Gobble, gobble!
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Libby, My mother was under 50 and I was 37 when I found the 10 cm lump..which was deep which is why it took so long.
As far as the mammograms go, I know that the experiance that the radiologist has means a lot. The first radiologist said I had a tumor 1.7 and under..the MRI said 3.5..the next radiologist said it was 5 or 6..and then the ones at Swedish (Dr. Lee) said it was 9.5..the tumor no longer had any IDC left, but it did have DCIS and was 10 cm when removed.
Yes, I am ticked at the difference in rec that the stupid USPSTF is doing. I have been spending entirely too much on the board speaking out against it. That and the health care bill that is giving the USPSTF more power through laws! They are one in the same. I wrote to both of the Senators as well as called their offices Monday Morning against the bill.
Would protesting at the state capitol help? I know that I can get women from here to protest...plus I live in Olympia!
I finished my rads on Tuesday..Last week I was burning so much that the Dr was wanting me to take a week off..I told him that I couldn't...that if I stopped and didn't finish before Thanksgiving, then I wouldn't be able to finish because I have 3 kids I have to take care of...a 9 and 5 year old boys, and a one year old girl...I need time off to heal up while my husband is off.
HAPPY THANKSGIVING EVERYONE!
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You know, A better place would be protesting out in front of Murrey and Cantwells offices in Seattle! Probably would try to get us for trespassing! I am not happy how Murrey is for this bill which legally gives more power to the USPSTF.
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Aprilgirl - I went and saw Cindy today. She was admitted to the hospital with a fever and is still going through chemo. I had to gown-up, wear a mask and gloves as a precaution. What ever this infection is, it hasn't surfaced and the doctors don't think it will until her white count is up.
She's in some mild pain, and the joint pain she had after her first round seems to have subsided. Her back is primarily what's bothering her and it's having an effect on her being able to rest.
All-in-all, she's in relatively good spirits. She's got an aweful lot going on in her life, and could sure use some friends. If any of you ladies are on Facebook, she's on there. That's how we email.
I hope you ladies had a wonderful Thanksgiving.
-Amanda
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Amanda - what hospital is she at? You can pm me the info - I did not realize she was in the hospital. That is terrible.
I will "friend" her on facebook - will have to search for her real name!
Amanda, you are welcome to join us at Red Robin this Thursday if you are interested!
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Amanda, If you see Cindy, please tell her I am thinking about her and hoping for a quick recovery! I'm afraid I'm not on Facebook yet. Thanks.
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Hi everyone - I can't believe I've been dormant here for so long. I ran into Tracy at Whole Foods last night and it reminded me that I've been pushing a lot of this year's stuff back into the "distant memory" part of my brain. Crazy really as I haven't even got to my 1year anniversary yet.
It has taken me all morning off and on to catch up on everyone.
I am soooo sad to hear about Robin. Amanda - it is so nice to see what you are running with, your interest and your activity here. I would love to know what I can do to help you and your foundation?
Libby - good luck tomorrow withe your swap! I got my TEs in late October and I am just stretching/waiting now. It's nice to have somethin' but think it will be much nicer to have somethin' better! :-)
I am going to try and make it Thursday night....but I've got schueling/childcare issues, so it may not work out. Fingers crossed.
hugs
gina
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I'll let her know. I may try and see her tomorrow. It depends on what my day looks like and what the doctors are saying.
If anyone here is on Facebook, send her an email. She could sure use some friendly faces and support right now. If you don't have access to FB, I'd be happy to be the go-between. Anything I need to do to put a smile on that pretty face is worth it to me.
-Amanda
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Thank you Gina. And thank you to all of you for allowing me to be a part of this discussion board. It truly means a lot to me.
Yes, we lost a great one Gina. I still get teary thinking about it. But I made a promise, a few actually, to Robin that I intend to keep.
What everyone can do is spread the word about my organization.
What's Hope for Robin's mission? -To provide financial and emotional assistance for cancer victims and their families while spreading awareness, and assisting victims with looking into alternative forms of treatment if they choose that path.
No, I'm not reinventing the wheel. But I think the biggest component that's lacking from everyone else that's doing what I do, is the human aspect of it. I met Cindy on here, then we became Facebook friends and yesterday I was by her side offering her anything she needs. And I meant it. I don't care if a patient is stage 1 or stage 4. This disease SUCKS! And yes, my drive to eradicate this evil monster is all because of Robin. I've never seen cancer before in any form other than from a distance. In short, I was extremely naive when it came to cancer. I watched it turn my mentor and hero from the strong woman I always wanted to be, into a frail creature. And I hated it. I hate cancer and everything it stands for and is about. I want it gone. And if I need to work a little harder to support those stricken with it, then so be it. My dream - For cancer to not claim any more innocent lives.
I'm set up with the state of WA and I'm currently working with a web designer on my website. For now, Facebook is my website. There's the original "Hope for Robin" page, and my new temporary page, "Hope for Robin(.org)". The latter is the segway into my actual website and the one I post from frequently.
Nicki Gardener and Misti Fogerty are both AVON reps and friends of mine. Nicki is a Junior at Highline High School and a swimmer. Her aunt start an AVON online campaign for my organization. Those funds will be utilized for cancer victims in need and research. Misyy is a gal I graduated with. Those funds from her site are going directly to Judy, Robin's mother.
http://mfogerty.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=8631
(above is Misty's site-30% of the total sales goes to Judy and her needs. She's a retired school bus driver and of course inherited everything from Robin. That includes medical bills. If those can't be paid, they will go after Robin's "estate".)
http://nturgeon.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=23263
(This is Nicki's Aunt's. Nicki was one of Robin's swimmers, but her mother is also a survivor. She and Robin grew quite close. Terri (nicki's mom) was diagnosed as Robin was going through chemo. I read a post on here a while back mentioning Terri (not by name). This total goal right now says $100, but we're changing it to $500. 25% of the total sales goes to my organization)
With Christmas right around the corner, these sites may provide a lot of gift ideas for him & her. I like AVON because of their "Army of Women" campaign and their support of breast cancer.
I'm summitting Rainier next summer as well. Jusy's asked me to bring Robin (part of her anyway) up with me. It's a charity climb that was originally just for Robin, but is now for my organization.
I'll also be doing various fundraisers throughout the year starting in January. All funds from those will go to my organization.
I have meetings set up with Fred Hutch, SCR, The Swedish Hospital PR guy. All because I want to put my name in place as a research donator and also for assissting victims. I'm local, not national, so there's no waiting for victims.
So, as I tell everyone I meet. And I post quite frequently on my Facebook page. Spread the word! Get involved!
Other than that, you ladies just let me know what I can do for you and how I can help. Stay strong! You're all my heroes.
-Amanda
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Looking forward to seeing some of my sista friends tomorrow eve !!!!
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Me too!!!!
Susan
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Hi All,
Just a reminder for our get together tomorrow evening. Hope everyone can make it.
Red Robin
Pier 55
Downtown Seattle
6:00pm
I will be in Bellevue for a class all day so I should be able to be at Red Robin early. I will get a table under my name (Tracy). Of course, this is what I said last time and I was 1/2 an hour late
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I was late doing it, but posted the get-together under get togethers on the site this week. Have a great time! i am "under the influence" right now from surgery - hopefully all my spelling is ok!
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Libby - thanks - hope you are feeling okay - rest up!!!!!
Susan
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I can't believe I am missing the get together.
I haven't been on the website for weeks....have had company and just been too busy. Tonight I thought .... I better check to see when the "girls" are meeting.....aaarrrggghhh!!! I am sure it must have been wonderful and I so hope to meet all of you on another occasion. Finished my 35 radiation treatments a week ago and am still getting used to having my life back and enjoying watching my hair grow back in after chemo. Next step is Femara....not looking forward to that either. What a journey.....Patti -
I had to miss it too... I'm so bummed. I've had 7/35 rads now and I am so tired. I'm still in PT from surgery too. I'm determined to go to the next one though! I hopy everyone is doing well. Much Love, Jessica
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Hey all, So sorry to miss the get together last night! I so wanted to go.
Libby -- I hope healing goes well. I've been thinking of you.
Jessica -- I'm going to start PT for surgery too, but they couldn't fit me in this mo. so I'll start in January. Where do you go for it, Swedish ACTIVE program? The rads will go quickly and really, you'll be done before you know it. I made it through by doing the New York Times crossword puzzle and good coffee and peroshkys from that little cafe off the main lobby of Swedish Cancer Institute. So yummy! I'm going to look up your website!
Merry Christmas one and all!
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I do PT at Swedish, they have a breast surgery pilot program going on now. It is a really good program. I've had 8/35 rads. I'm pink and peeling already. I'm really looking forward to being done with this. I also switched to Femara because Aromasin was causing high BP's. The Femara is causing joing pain and some major hot flashes that I really don't like. I hope everyone is doing well!! Much Love, Jessica
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Hi Girls - it was a fun, small gathering of women the other night -- great to see those who could make it, and hope to see those of you who couldn't next time!
Jessica - I have also started femara - I think 3 weeks into it - not too bad as far as joint pain, however I agree on the hot flashes. I guess we are lucky that it is winter and not summer. I take neurontin at night for night time hot flashes that wake me up and that really helps. As much as I don't like to take prescriptions, I need my sleep.
Hope everyone is having a good weekend!
Jessica - hang in there on the radiation -
PAP - congrats on being done with rads!!!!! Major accomplishment!
Libby - hope you are feeling good and looking great after your surgery!
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