Any ladies from WISCONSIN??
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I wish i could turn the heat on. We had a gas leak and are awaiting a new furnace so we had to shut down the gas. I have been reading all day and my hands are so cold they hurt from gripping my book.
Kristin: i am praying things went well for you and that you heal quickly.
Anne: hope your head is not spinning too much with all those appts. hopefully you got lots of good news.
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Hey ladies:
So glad there was sunshine this afternoon! Lumpectomy is now complete. BS took two nodes to take a closer look at but I'm optimistic. What's driving me crazy right now is the "glue" they used to hold together the incision in my underarm area.
Thanks for the advice on the chemo group. I'll take a look once I find out for sure that I need it.
Question to those of you farther along than I am: did any of you cut your hair short before starting chemo? I have this urge to go short and sassy right now!
Healing thoughts to all! Kristin
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Wasn't it gorgeous today! Had lunch with a BCO sister so didn't get out at noon, but took advantage of the beautiful spring day and took a nice long walk when I got home from work.
Kristin, my pre-chemo hair was long. Donated my ponytail to Locks of Love right before starting chemo and got a really cute haircut. Loved it shorter but it was a sleek bob and a PITA to style every morning. Kept it until hair started coming out 2 wks after first chemo. Went to the salon for a half-inch buzz cut. Some women shave their heads but that can irritate the scalp so I decided against it. For me that was a good decision.
Fast forward to the happy ending -- I absolutely love my hair today! Short & sassy and so easy to care for, literally wash and wear. Flattering and much cooler in the heat.
Tip: if you can afford to splurge on a satin pillowcase, it's $10 well-spent. Feels so nice!
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bluewillowskys, why so high a recurrence percentage even after rads? Did you not have clear margins? Younger age? Family history?
I have the same diagnosis summary as in your signature, and I don't figure my recurrence rate is anywhere near 17%. Did they run a VNPI or other prediction tool on you? I would like to do that, haven't asked the doc yet, thought.
I'm planning on a partial breast irradiation with Bethany Anderson, blue. That would be especially appealing to someone who has to travel a long way each day, as you do. But maybe the particulars of your situation make a whole breast irradiation make sense.
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Oh, you ladies will get a kick out of this story...
The man who did my core biopsy (with a LOT of pain and refused to give me anything for it) ... just assumed he would be my cancer doctor. He phoned me with the biopsy results and said our next meeting would be a long one, and he would give me Susan Love's Breast Book. I had already decided he would NOT be my cancer doctor, but I wanted the book, so I took the appointment.
I don't particularly like the Susan Love book, it's okay but kind of limited. Anyway this doc said "this book has all the answers, questions will occur to you at 2 a.m. and this book gives you the answer ... I recommend against getting information from the Internet, because a lot of it is inaccurate."
Well! telling me not to get on the Internet is sort of like waving a red cape in front of an angry bull. It just makes me go full steam ahead!
Besides if I had stayed off the Internet, I never would have found breastcancer.org. As far as I'm concerned, these patient forums are the best part of the site.
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I think in the long run, people will find out that Dr Google is mostly accurate!
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Anne: I had no family history. I did have clean margins. I am guessing my age , 42, is a factor. What is VNPI ? And i have not heard of partial radiation either. How is that different then whole breast radiation ? How would that affect things with my travel ? I am a little confused I guess.
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Hi again blue. Woman who get DCIS at a relatively younger age are considered more cancer-prone. Cancer risk increases as you get older, just as a result of living so long. Therefore, a 70 year old woman who gets breast cancer may be less cancer-prone than a 30 year old one. Also, all other things being equal, the older woman has fewer years ahead to have a recurrence. If both die at age 80, that's 10 years for a recurrence to show up in the older woman, but 50 years for the recurrence to show up for the younger one. Make sense?
VNPI is Van Nuys Prognostic Indicator. It's a mathematical formula that takes into account your age, family history, type, grade and size of tumor, and factors like that. I believe it gives you your percent likelihood of a recurrence. This is supposed to help you decide things like "tamoxifen is a good choice for me" vs. "tamoxifen would only make a teeny difference, not worth the side effects."
That's what I picked up from my reading anyway. I have not had a doctor offer to use it.
Accelerated partial breast irradiation (APBI) allows you to get more radiation for a shorter span of time. The protocols can last either one, two, or three weeks. Compare this to the six weeks for external-beam, whole breast irradiation. For you, it means a lot less time on the road. For anyone, it means you're done faster. This treatment length is one reason APBI is the focus of research studies - it should make treatment more accessible for women who live far from their medical provider.
Bethany Anderson definitely seems to prefer the whole-breast, six-week plan. And I agree that it is currently the standard of care; the other approaches are being compared to that one. In my case, I was particularly worried about damage to underlying structures and late effects of radiation, and want to subject the smallest possible part of my body to the radiation.
I discussed the partial breast method in a forum in Radiation Therapy - Before, During and After called "APBI, Brachytherapy, Anyone?"
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I am sitting with my jaw hanging open...that was a LOT of information. I never heard of VNPI or accelarated partial rads. Who is your rad. onco ? Do you think it would be worth me asking if i can have the partial rads or asking for a different dr. that would okay that ? I too am concerned about possibly having some permanent damage done to my breast from the rads. I had read that the rads can shrink and/or deform a breast and change the skin texture permanently. I am thinking because of my age thats why they want me to do the full breast rads
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Hi--I'm from Wisconsin. Live in Madison. Just passed my one year date since diagnosis. Hair is about two inches long! I've been to Gilda's Club a few times, but even that is a 30 minute drive. Have thought about going on one of the breast cancer retreats. A friend of mine said they are great.
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Bethany Anderson is my radiation oncologist, like you. That's why I said, I think she leans toward the "standard of treatment," external beam whole breast irradiation.
It looks to me like your diagnosis and so on are pretty similar to mine, with the only big difference being age (of course, I don't know your whole picture). And it seems like the travel issue matters to you. So, perhaps you'd like to have this discussion with Dr. Anderson. I don't mind if you want to print out this topic and show it to her. She will probably be amazed that her patients are talking behind her back! (This is me, the patient who was told by one doctor "stay off the internet!")
Bear in mind, I'm not an expert, and the right choice for me might not be the right one for you. I do hope I can help others in some way as we all go through this un-asked-for journey.
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Just got my call to setup my first week of rads. I am starting June 1st. The first three days are at 8 AM..... that is soooooo gonna suck. I will have to leave home around 630 AM. UGH !!!!! Also means I wont have my dad or other family member to come with me. I cant expect them to get up that early. She did say they schedule the appts a week at a time and they could try for a late morning appt the second and additional weeks. I guess one positive is that getting a parking spot at 8AM should be pretty easy....LOL
PS I wa also told to stay off the internet... LOL
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Parking spot? don't you use the free parking/free valet parking at the UW Clinics entrance?
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Every time I have been to the UW we have parked in the parking ramp and got one of those tickets you have to validate. Is there some other type of parking other then that ? Usually we end up on level 4...except a few times when my dad had his disabled parking placard.
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FREE parking?
Nice!Hi Madicyn, welcome to BCO.
Lisa the only good thing about going that early is you s/b ahead of the commuters on 14.
Got a haircut today. Requested & received a cut like Kathleen Sebelius, HHS Secretary.
LOVE it! Now I just need the turquoise jacket.
Got out for a walk this morning, good thing as it's clouding over now.
5.6 more miles and I'll hit 1,000 miles walked since I started keeping track in March 2010.
Going to the greenhouse tomorrow for some annuals, I think the danger of frost is over here.
Hope everyone has a good weekend! {{hugs}}
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bluewillowskys, just go into the valet parking lane and have them do the parking for you! It's honestly much easier. Yes, that's the free parking - you just get your ticket validated. But the valet bit is nice, it's less walking and hunting. You aren't expected to tip the valet, in fact it's not allowed, so it's totally free.
If my circumstances were different I'd go to clinic with you. It's just too damn bad you don't have someone along. Could you ask various friends and family members to just take one day each?
I love that my husband comes to everything with me. He lost one wife before he married me, so he is totally clear on how important it is to support your partner. Bless him.
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Bluewillow and badger - are you guys still planning to meet for lunch somewhere on a Friday in June, possibly June 10 or June 17? If so, I may be able to make it so keep me in mind and let me know. Also hoping to see some of you at the walk next Saturday.
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Hi blondie45, yes we're still planning to meet for lunch and would love to have you join us. Haven't settled on a date yet but I'm thinking maybe the 17th.
Since we know the area better than Lisa, maybe it would be good to meet over by the UW.
I had lunch with Gina last week and for RFC we're meeting at the survivors tent.
Survivors photo is at 7:45 and we'd like to be in it. You too? The 5K walk starts at 8:45.
Got in a nice long walk this morning and hit the 1,000 mile mark. woo-hoo! Been planting flowers today and have more to do while it's still nice this afternoon.
Hope everyone is enjoying a nice relaxing long weekend! {{hugs}} to all
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Blue, I agree with Anne, the valet parking is a great service. I had my appts at 7:45 am and since you're only there for 15-20 mins (once you're all set up), tell them and they'll park your car out front and you won't have to wait for them to get it from the parking ramp. They don't take tips but I brought them a kringle on my last day because they were so nice to me every morning for 34 days!
Badger, good for you for hitting 1000 miles! Way to go! Just in time for the RFC next week. See you at the survivor's tent.
Blondie, it will be nice to meet you next week.
Take care, Gina
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so how does the valet thing work? you just pull up and they take your keys and park it for you like on tv ? I will be using my son's old jalopy and unfortunately the drivers door handle is broken and we have to go into the backseat and reach up to push the driver door open...LOL I dont think i would want to make a valet do that... LOL i was hoping to get the door fixed this coming week though.
Sounds like June 17th is what would work for Badger...I am fine with either day though:) Anyone that wants to come is more then welcome:) Maybe you gals can make some suggestions of meeting places nesr the UW. Then when i am there this week (four days this coming week) and my friend is doing the driving she can show me around the area. She drives semi truck and knows the area pretty well.
Badger: congrats on all your mileage ! WIsh I was motivated enough to do that.
Madicyn: Welcome to you...I missed saying that before:) Seems to be lots of madison area ladies now in our lil' thread...cool !
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Wish I could join you all for lunch. I'll be home with my kids on the 10th celebrating the last day of school and my daughter is having her wisdom teeth removed on the 17th -- when it rains it pours! Maybe next time.
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oh darn... would there be any interest in meeting on a Saturday so more ladies could join us? I dont mind making the trip to Madison on a weekend if that would work better. Then it would be totally a just for fun day instead of a treatment day for me.
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Maybe we should do a roll call / list of who wants to join us...in case someone didnt catch it.
I am Lisa McAdams Taylor ( soon to be just McAdams as I am getting divorced) and I live in Richland Center. I am available to meet most anyday.
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hey ladies - anyone get the dime sized hail that rolled through this afternoon?
I've had the PC powered off most of the day. Did manage an hour walk this a.m.
Lisa, just start slow and go from there. Even a walk around the block is good!
I'd rather push lunch out a week to June 24 than drive to Madison on a Saturday.
I keep mentioning Fridays because there's someone who can only meet on Fri.
But a Saturday is not out of the question... would more ladies join us then?
I'd rather keep my name & town off the boards, so I'm badger from southwest WI.
I'm 51, married, no kids, and work in downtown Madison (commute/carpool in).
Hope everyone is having a relaxing, enjoyable weekend! {{hugs}} to all
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Only gray & rainy in Waukesha County this afternoon. Will perhaps make a trip to Madison in the next week or two before I start chemo on June 8 (port placement is 7 days prior, this Wednesday). Need to see my HR person and check in with other work people there...
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i have no problem with June 10, 17th or the 24th or a Saturday either...just thought i would suggest a Saturday as maybe some ladies would not have to work on a Saturday so more could join us ? . I am self employed so most anyday is fine for me. Also i wasnt sure if any of the working ladies would be able to have very much time to get away for a lunch on a weekday . I am open to most anything the first 2 1/2 weeks of June as I dont think the radiation fatigue will hit me before then. Once that hits me I may not feel up to hanging out in Madison after my treatments. Its hard to say. Most ppl I have talked to have said they were really tired with radiation though.
As for posting names/towns: i totally understand people not wanting to...if any wants to email me more about themselves off list please feel free to do so.
Take care all,
Lisa
bluewillowskys@charter.net
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I would love to do a meet, but I'm kind of holding off on commitments until I see what my treatment plan is going to be, it should be starting in June but I don't know when, yet. I work in Verona, live in Fitchburg, come to Madison for treatment . . . say, another idea is knocking off work early on a Friday afternoon? And having high tea.
I try to batch my dr. apptmts. and other things in town so that I can leave early or arrive late, so my ideal time would be around appointments... which is why I am waiting and seeing. Also, I do take a LOT of work off lately for medical stuff, so ... trying to minimize that.
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Hi Lisa. You asked above about VNPI. I have not had that offered to me (it's a risk prediction tool) so maybe they don't favor it at UW Breast Center but you can probably ask for it. Or maybe they did use it to give you your predicted risk - no one told me a number for mine.
There's a thread where they are talking about VNPI scores. Search for "Lumpectomy only" in keywords. Or, search for VNPI!
The fonts are doing weird things with this post, hope it turns out okay.0 -
Hey all, my work schedule is pretty flexible and I do have access to a car.
Two smaller get-togethers would be OK with me... I eat lunch every day LOL!
Got out this morning and walked before the heat of the day.
Now I have the last of the annuals to plant. Have a good one!
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At this point, Friday, June 10 or June 24 works for me and/or some Saturdays work for me too. Let me know what you guys plan, as I would love to be there if it works out.
Hugs, Dawn
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