Any ladies from WISCONSIN??
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I reposted this from another thread, "radiation oncs with a bias?" because it's kind of a testimonial to the Breast Center at UWCCC, that I wanted to share with the Wisconsin group.
I had a surprisingly good outcome today at radiation oncology.I don't exactly know what you call today's procedures - pre-RT imaging, maybe. First had a new mammogram with 2 magnified views. Second, the thing I was dreading, "numbing" the breast followed by injecting contrast dye into the tumor cavity (after lumpectomy). Finally some CT on my back and my front. I have to say, the techs were absolutely wonderful. I did let them know before the "numbing" and dye injection that I have an unusually low threshold of pain, and from dental work (which uses the same numbing agent, lidocaine) I know that a fine needle, slow injection, and a larger-than-average dose of lidocaine makes a huge difference. Well, the radiologist who did the numbing and injection was familiar with the method I mentioned, and extremely gentle. The mammography tech was very gentle and delicate. The CT I don't think was aversive, as I don't mind going into a narrow tunnel as some people do. Strong kudos to UW-Madison Breast Center in the Carbone Cancer Center. They really care.By the way, coraleliz, I had a very unpleasant experience with stereotactic biopsy at a different clinic, and felt that that surgeon had no empathy whatever; at that clinic, the mammography tech showed no concern at all with my comfort.My RO at the Breast Center, Bethany Anderson, does seem to be on the same page with me now, that I have realistic worries about quality-of-life with the common side effects of whole breast irradiation. I was offered brachytherapy or external partial breast irradiation. We will attempt the latter first, and if that is not going to work out, we will move to plan b - brachytherapy, the multicatheter kind (interstitial).Hey, what this all boils down to is, you do get to make some of your own decisions and still be respected. So I urge those of you who have the interest in exploring more options than the "standard of care," to research them to the best of your ability. (This stuff is not easy, but it's not that hard, either.)Still don't have a start date, I was told just the "planning" takes up to a full week, and she will let me know later this week. Either of the above procedures is shorter than the standard 6 week +/- plan. One or two weeks max. I like that!
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Thanks for the welcome Bluewillow! I've updated my diagnosis and added it to my signature. Thanks for the reminder.
I'm sorry you couldn't sleep, but I'm glad you had your daughter ride with you to Madison yesterday. When I first read that you were driving back and forth, I thougth of the heavy fatigue I felt and I only drove 1/2 a mile.
It's good to connect with other Wisconsinites.
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hey ladies, everyone make it through the storms OK last night?
Three times, the power flicked off but came right back on here at the house. At DH job it went out for about a half-hour. We didn't have any hail but I heard reports of ping-pong ball to tennis ball sized hail - yikes!
However, the good news is it's going to be in the 60's today instead of the 90's - nice!
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badger and bluewillow - Are we still all set for tomorrow??? Are we meeting at 11:30????
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No hail, high winds. Power was out for about 4 hours last night - we had to get up and drain the sump pump manually........
Oh the joys of spring storms.
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Power went out by us just as the tornado sirens went off so we spent a good hour in the basement. No damage here, thank goodness. Some friends spent time in the Culver's kitchen during the storm. I can think of worse places to be!
Met with MO Monday who is recommending chemo (TC x 4). Not at all what I wanted to hear. Somehow chemo makes it seem real - I do have cancer. Otherwise I was just working my way through a series of procedures. I'm deciding whether to participate in a new dose dense clinical trial, which means doses every two weeks rather than every three weeks.
Wish I could join you for lunch tomorrow. Hopefully next time. Stay strong, all
Kristin
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we had sopme marble size hail and lot os rain for about 20 minutes...my my it got cooler ! YAY YAY YAY! hope this cooler air stick around through next week.
Kristin: so sorry about your chemo news:( i sure wish the researchers could find some better way of treating cancer with out all those awful side effects. I will keep prayers and good vibes going to you.
Yes, I am set for tomorrow. I should be there by 1130 provided I dont jinx the radiation machine like i did yesterday. I had my first dose then it broke down. Had to sit in a gown for 20 minutes while they fixed it. I was worried about getting the second dose and being a bit of a guinea pig with being the first one to use it after it was fixed...LOL
Today i have a cardio appt, then Look Good Feel Better, then rads at 5:15pm, then getting my hair done tonight....gonna be a long day but at least i will have some fun at Look Good and get to meet a few other ladies:)
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Left Froedtert at 6pm after first set of chemoinfusions yesterday just as big raindrops started coming down. More storms during the night but no power outages.
Therapy was stretched out due to oncologist running late with getting orders in. Then, a mild reaction to the taxane caused me to get more steroid through the IV port (as if I wasn't already hyped up from the pre-med regimen!). So, the drip was slowed down but then tolerated OK. Forgot to use my ice packs on the fingers since they put me in a bed instead of a chair as I had planned.
Slept better last night although up to the bathroom a few times, double flushing because of Cytoxan excretion. Going back this afternoon for a Neulasta shot...
Puppy is doing better on increased doses of his drugs. Need him around as my cuddle "Buddy".
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Hello ladies. No real storm problem around here, we sat with cats in an interior bathroom to wait out the storm, called it a "tornado party."
Wish I could meet up with the Ladies who Lunch tomorrow, but I've spent precious little time at my job this week and hope to get caught up. (I had a full day of medical procedures Monday, then a day and a half of workshop Tuesday and Wednesday, full day in the office today but a long meeting and have two meetings tomorrow, as well.)
Best wishes to all - Vinrph, hope you and your puppy are feeling better soon.
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Glad to know everyone made it through the storms. LOVE the cooler weather today!
Lisa & Dawn, yes I'll be there tomorrow by 11:30. I'll wear my RFC t-shirt. :-)
Kristin, sorry about chemo but I did TC x 6 and got through it OK. Hope same for you!
Mary, I thought of you today, Google has an interactive guitar app in honor of Les Paul.
(it's his b-day today... you can strum strings and sound notes & chords - fun!)
Anne, we love meetings, right?
Hello to all the WI ladies!
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Hi veggiegal, welcome and sorry about the lingering SE. LE sucks, I know, I have some truncal LE on the left side but my docs don't believe me. TG for BCO!
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Wow.
85 degrees yesterday.
45 degrees today!
Ya just gotta love Wisconsin.
June?
Really??
Sending Door County love to everyone.
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hey Faith, we went from 95 to 65 in an hour as the storm front rolled through last night.
Love Door County, thanks!
veggiegal, I'm following these basic rules: avoid salt, drink water, walk every day, and do belly breathing to stimulate the flow of lymph. I also do yoga which is wonderful. And I live with it. Most days it's OK, some days I don't even notice it, some days I notice it a lot.
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Welcome veggie and faith:) Looks like I am busting out the blue jeans tomorrow with my Fight Like a Girl shirt since it is so chilly now....lol I have lived here all my life and still the weather extremes we get amazes me...97 one day and 50 the next.
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Badger: our computer geek 23 yr old showed his dad the guitar app yesterday - Les Paul died a few years ago and is buried here in Waukesha, his hometown. Son is moving to Ohio next week to start grad school in architecture: empy nest once again...
Veggiegal, I have a wonderful therapist at Froedtert hopefully helping me to keep any potential lymphedema from showing up. This is one of my major concerns since it could affect my hobby of violin playing.
The rest of you, have a good time at lunch today!
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Mary, I've been to the Rock & Roll hall of fame in Cleveland and they have a great collection displayed in a place of honor for Les Paul & Mary Ford.
Lunch was so nice, the time just flew. Good to meet WI sisters and happy b-day Dawn!
Anyone going to DragonFest Sat June 25th? http://www.capitallakesdragonfest.com/
(check out the slides on the home page, love Bucky Badger lounging with flamingos.)
Take care everyone and enjoy the cooler weather while it lasts! {{hugs}}
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Thanks much badger - yes the time did just fly by and I didn't have to go back to work. Very nice meeting up with you guys.
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i am sorry Dawn...i didnt realize it was your birthday...i must have totally spaced on that. It was a nice time and nice food with nice sisters:) Thanks ladies:)
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You know, that was the first green tea I've ever had that I actually liked.
Can't be healthy then, right? Do I really want to know what's in it? LOL!
Couldn't find info on 2011 RFC survivor's photo so I e-mailed a question to Komen Madison.
Will let you know what I find out. Have a good weekend!
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does anyone know how to remove a topic from my favorite topics so i stop getting emails about it??
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nevermind i just found it...lol
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Beautiful day today ... took all afternoon off work and had two medical appointments. My radiation therapy is still in the planning stage, but I hope to get started in about two weeks - and it will be over two weeks after that.
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Anne or whomever else that might : I asked my doctor today about having some sort of shorter treatment. I just dont have the emotional strength to go through another 4 weeks of rads alone. I mentioned to her about other women on this board having shorter treatment times. She(Dr. Bethany Anderson) said something to the effect of that there had not yet been studies on doing shorter treatment times for DCIS. That the shorter times have been studied for women with actual invasive cancers and women over 50 . You mentoned only doing 2 weeks of rads ? Could you give me an idea of where I can find out more info on shorter types of treatments ? Or possibly a doctor recommendation to a dr. that is willing to try different treatments?
Thanks much
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Hi there Bluewillowskys - we have the same doctor (Bethany Anderson). She wasn't very open to the idea of the partial breast radiation for me, either, but I pointed out several things that made me reluctant about whole breast radiation: 1. mother died of lung cancer so I am very nervous about damage to lungs, 2. history of heart disease in family and have several risk factors for it, so nervous about damage to heart, 3. I already have costochondritis, chronic pain in the chest area, so I don't want any more (can be a side effect of rads), 4. I already have chronic fatigue, so don't want any more (another possible SE of rads). 5. I had very wide margins (1.4 cm clear of cancer cells) which I urged the surgeon to go for. 6. Most recurrences are local, i.e. close to the original DCIS, so irradiating just that area makes sense to me. 7. As she put it, "I've never had anyone be so proactive about this before." 8. Also, I am over 50.
There is a bit more information in a thread I started called APBI, Brachytherapy - anyone? The external beam, partial breast radiation was recommended by ICanDoThis.
A lot of the movement toward more conservative therapy (lumpectomy vs. mastectomy, etc) has been studied first in invasive breast cancer. Meanwhile, DCIS was not being studied as much, maybe because it wasn't as high a priority, so more aggressive treatment continued to be the "standard of care" and women were commonly getting bilateral mastectomies with DCIS long after the majority of women with IDC were getting lumpectomy - go figure.
Not to cloud the issue, but the sped-up protocol that I was researching was for partial breast irradiation. When it is done, in several different methods, it is always a shorter time, anywhere from one day to two weeks. I haven't looked into a sped-up version of whole breast. I think I've seen something about a "Canadian protocol" of three weeks of therapy, but I do not know if that is for whole breast or partial breast.
What makes sense for me might not make sense at all for your medical situation, and I do think Dr. Anderson is a good doctor. Perhaps you can tell her that for personal reasons, lack of support, long drive (it IS a long drive!) with no second person to drive, you are having a hard time facing 5 more weeks of this, and what can she recommend? I was pretty alarmed at the exhaustion you were having a few days ago, it didn't sound safe for you to do it alone.
Wish I could be more help but maybe this will get you started.
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hey ladies, how's it going? sorry Lisa, I know nada about rads but it's got to be taking a toll.
haven't heard about the survivor's photo so I tried again tonight but to a different e-mail addy.
veggiegal, how'd your LE appt go?
Hi to all the WI ladies!
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i have always had a problem with authority figures like doctors. I am always too nervous to speak up and ask for different op wish I was more knowledgeable about my DCIS and the different treatments for it. I wasnt really ever offered any choices in my surgery or treatments. They pretty much said this is what you have, this is your surgery date, this is the type of raditaion treatment you will get and this is what you are going to do, etc. I was never told of any different options for my care. And now I feel like I am stuck doing 6 weeks of rads despite the distance i have to travel and lack of REAL solid family support to help me get through it....when there is no 100% proof or certainty that my DCIS would have or will become invasive cancer yet some other women who have had or do have invasive cancers only have to do 2-3 weeks of rads. Wouldnt it stand to reason if 2-3 weeks of rads for invasive cancer works for those women, that doing 2-3 weeks for DCIS would ALSO work without having some 10 yr long study before allowing women to have that option ? I am sorry if I am not explaining myself or my point well...its just so very aggravating to have doctors get me scared stiff that I HAVE cancer and need all this surgery and treatment , and then have Dr. Anderson tell me yesterday that technically i DONT have cancer...thats "its ONLY pre-cancer".....regardless of it being ACTUAL cancer or not I am being subjected to the same types of surgery and tamoxifen and in a lot of cases MORE radiation to my body then many women who have ACTUAL cancer have to undergo. Shouldnt I be offered some REAL options with studies to back up WHY the doctor is recommending the treatment, instead of just telling me basically this is the standard protocol because no one has taken the time to come up with or study forms of less invasive treatments for DCIS ? I am feeling tremendously overwhelmed right now at this point in my life in general and then having to undergo 6 weeks of radiation and driving ALONE 3 hours everyday to get it and that it may or may not do me any good because there is no proof my pre-cancer would have turned invasive and risking the possibility of actually getting REAL cancer because of the radiation and tamoxifen....its just all too much for me to take I think...but they have used scare tactics on me and now I fear that if i dont follow through with their standard protocol I will end up getting real invasive cancer....so i dont know what I am supposed to do right now...I feel so angry and so lost and so trapped into a treatment regimen that I dont know if I mentally/emotionally can follow through alone. Damnit why cant there be an in person support group in my town instead of way over in Madison.
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{{Lisa}} I wish I had answers for you. I do know that DCIS is cancer - ductal carcinoma in situ. The cancer is contained within the milk ducts. But it's still cancer.
The DCIS expert on the board is Beesie. I bet if you sent her a PM, she'd have some info for you. Have you been on the DCIS forum?
Gotta go get ready for work. Hang in there sister! {{hugs}}
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Morning, Lisa.
I agree with Badger that you do have a form of cancer. Some of the factors that might suggest a more thorough course of post-surgery treatment include family history, how wide the clear margins were, smoking history, etc.
It is REALLY HARD to get to where you are good at negotiating outcomes with doctors. Sadly, the main way you get that skill is by a lot of encounters with the medical establishment - and who wants that?
Stopping your radiation therapy mid-way might be a mistake. I'm not sure if you could have it again, if you do develop more cancer later. One approach might be to finish it out, and then get some counseling about treatment planning before you agree to tamoxifen. It is helpful to know what factors matter most to you - appearance? peace of mind? longevity? comfort with pain? - and then make decisions based on those. If that still overwhelms you, deciding on one commitment at a time is another way to break this mountain down into a series of small hills.
Roses - domesticated and wild - are in bloom right now. Take time to smell them! ((hugs))
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Thanks for the support ladies:) I talked with Dr. Anderson again on Thursday and explained my confusion over what she said. She admitted to having mispoke and cleared things up. She said she would discuss my case with another radiologist since she will be having her baby soon and I may need another dr. to take over my case. She listened to my concerns and said she would talk to the other dr. and see if they could come up with an alternate plan so i at least have an option. Then I saw her again Friday and she said that she and the other dr. thought if I didnt think i could make it through the 6 weeks that we could switch over to doing some higher doses and complete my treatment in 5 weeks or i could possibly do 2 a day my 6th week which would shorten my treatment by a few days. The latter doesnt make much sense to me. The had me talk to the oncology social worker to see if she could help me with my travel and find me some help for my followup care once my insurance lapses. Apparently there is a program that pays for drivers to take people to medical appts.,.which i qualified for...so this week I am going to try that out. At least I would get some relief from the long drive and be able to ride in a car with a/c ( at least i hope it has it)...so maybe i wont be nodding off while driving. If the driver thing works out I will try to stick out the 6 weeks. As much as I want this over with, I really dont want to risk my health by not getting a full course of treatment.
Thanks again ladies for the kind words and support. I dont know what I would do if I didnt have you all to vent to and bounce thoughts of from:)
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Oh, YAY! Bluewillowskys, I am so glad you linked up with the medical rides program!
You really have done a good thing for yourself to express your (legitimate!) concerns with your doctor. It sounds like she made an effort to accommodate your wishes while still trying to do what is best for you medically.
It's a very uplifting experience to assert oneself and then be heard and respected.
How is the radiation going, aside from the exhaustion from the long ride? Are you getting any sunburn effect yet?
My spouse and I went for a ride in the country to buy organic milk, sold in bottles, because I am looking to gradually make some lifestyle changes. It's expensive, you bet. I will have to go slow and be judicious with these changes, but I want to be as healthy as possible in my old age. I saw my mother die from cancer at age 56 (the same age I am now) and my grandmother live till 94 after a mastectomy in her 40s. I'm aiming at some lifespan in between - I always said if I hit 70 (the Biblical 3-score and 10), anything after that is gravy.
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