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Any ladies from WISCONSIN??

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  • bluewillowskys
    bluewillowskys Member Posts: 268
    edited February 2023
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    vlrnph....milk chute....lmao

    Dr says they saw nothing concerning on mammo, dx mammo or US. I'm very shocked. So wth are the solid marble size pain inducing lumps then??

    One lower lung nodules area is 6cm size. How does that not need a biopsy?!? Getting 2nd and 2rd opinions.

    I'm seeing the ps on Tues to discuss the bx mastectomy with reconstruction in front of muscles. I'm tired of all these scares, lumps. Pain every 18 to 24 months! . Just want to finally have the boobs I should have had back so my self image is returned and I can wear an actual bra with no longer wearing loose blouses trying to hide my deformed boob.

    Anyone Gere do a prophylactic mx??.

  • zogo
    zogo Member Posts: 19,169
    edited February 2023
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    bluewillow. Yes, I had a pbmx several years ago with Diep flap reconstruction.

  • vlnrph
    vlnrph Member Posts: 487
    edited February 2023
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    Both of my younger sisters had risk reducing bilateral mastectomies. One was able to have DIEP reconstruction, the other insisted her implants NOT go under the muscle.

    In that case, the doctor used a product called Alloderm to create a sort of sling. If your plastic surgeon doesn't have experience with that, ask who does.

    Good thing you're getting other opinions on the lung nodule. I wonder if it's possible to have 2 or 3 close enough together that they appear as a single large one even on CT.

  • vlnrph
    vlnrph Member Posts: 487
    edited June 2023
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    How is everyone doing? Looks like I’ll be commuting to Madison a couple times each month because there’s a clinical trial for which I’m undergoing tests. It involves fulvestrant & KEYTRUDA. It’s uncertain if PIQRAY was actually working for me.

    While feeling well, I do stuff around the house in advance of the study, especially outside during cooler weather. Things are too dry right now so my “prized perennials” are getting weeded and watered by hand in order to survive. Should fatigue or other difficulties develop, we’ll have food in the freezer and decent floral borders.

    I’ve been contracted to perform with the WI Philharmonic in a free concert at Brookfield’s Sharon Lynne Wilson Center on Friday, July 7. Hopefully side effects will not be too bad.

  • weninwi
    weninwi Member Posts: 747
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    vlnrph,

    Please keep us posted on this trial - your infusion experience, treatment response, side effects etc. I declined this study because it required a repeat liver biopsy, after I just had one - they wouldn't take the results. Hope you do well. Congratulations on playing with the WI Philharmonic! 

  • vlnrph
    vlnrph Member Posts: 487
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    Let’s bump this topic & see if any new cheeseheads join us. I dropped out of the KEYTRUDA trial because my liver was going crazy. I took high dose prednisone and, when that didn’t calm things down, spent a week as an inpatient at UW-Madison getting IV steroids. During all this, we drove to OH twice. My mom was in hospice there and died July 4th.

    She was such a great support to me and, having been employed in hospital laboratories for 2 decades, understood the implications of abnormal results. I kept thinking that I should call her or send an update email as my situation changed.

    Anyway, my oncologist decided we couldn’t wait around for the immunological therapy to work so I began a course of paclitaxel/gemcitabine which helped. Unfortunately, routine imaging showed an issue with my lungs. Bronchoscopy was inconclusive however my treatment was switched to ENHERTU in December. I’m fatigued with anemia but mostly OK.

  • gailmary
    gailmary Member Posts: 426
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    Vlnrph, I'm still here near Alpine Valley. It sounds like you've had a rough time lately. That sucks. I hope the Enhertu works wonders for you. It used to be we hesitated to use a new drug till it's been proven. Not just to work but also the side effect profile. You were a pharmacist weren't you?did you hear that from patients. Now I'd be fine if the option might mean I'd get more time.

    I'm still doing great since 2017 no progression. I think it's cause it's a grade1. 1 lesion in humerus. Faslodex. No complaints from me. Well not really but minor stuff more like getting old and stuff I've gotten used to. It's like my 3rd round of going through menopause.

    I'm a bit mixed up with other groups. I thought there were more from WI Here. Maybe some new members. The cold and snow keeps us all indoors most of the time. What do you do with your time? I quilt alot. It's a habit.


    Anybody else ?

  • vlnrph
    vlnrph Member Posts: 487
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    Quilting is a great hobby. I took a class back in the 80s and own a fabric collection, plus a Sears Kenmore sewing machine…

    This week, being pretty much snowbound with below zero temperatures, I’m working on my most recent genealogy project. In an effort to boost membership in a local ethnic heritage group, I volunteered to help people with tracing their family tree. I’ve had 2 ‘clients’ so far. Major brick walls appeared right away in both cases. Old newspapers helped hit the jackpot.

    Pharmacy experience, especially in Madison, was interesting. Before I retired a decade ago, the UW exerted a big influence over prescribing patterns. Until a med made it onto their formulary, Rx for newer drugs were rarely seen. Cost-benefit analysis, insurance coverage & broader side effect profiles were issues. Milwaukee was a bit more open but not much!

  • gailmary
    gailmary Member Posts: 426
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    Mom worked on genealogy for years. Even going to Salt lake city to research the mormons records. When she died and my sister took all her records she was relaying the same stories that mom had told me as she learned something new. My sister made it sound mire interesting.

    Quilting for me isn't a hobby its more of a habit. I've taught it for years. It doesn't pay though I sure enjoyed it. I still help about 15 ladies between 2 groups.

  • zogo
    zogo Member Posts: 19,169
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    I've been to that genealogy center in Salt Lake City (my son lives there). It was an interesting place, right on Temple Square. You used to have to go there to get access to the files, but I think anyone can now sign up. Here is the website https://www.familysearch.org/en/

  • sedonadreaming
    sedonadreaming Member Posts: 11
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    Chiming in from Jackson, WI. Got the Christmas gift I never wanted, stage1a ILC, getting surgical plan in place and riding along with each new twist and turn. I go Friday for CT of abdomen/pelvis in prep for DIEP and I have to say each imaging test just makes me shudder. Fingers crossed nothing new is discovered.

  • gailmary
    gailmary Member Posts: 426
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    Sedona dreaming, best of luck to you with scans and surgery. 1 step at a time.

    Is it Sedona Arizona you dream of?. Gosh it's beautiful there. I ve been once almost 25 years ago.

  • vlnrph
    vlnrph Member Posts: 487
    edited January 27
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    Sedona, welcome to the club nobody wants to join. My ILC was stage 2 plus I had a small IDC tumor that only showed on MRI, not the mammogram. Imaging is a great advancement in diagnosis and for assessing treatment but, as you imply, unexpected things can turn up which must be investigated. I hope your scan yesterday was uneventful.

    It does begin to feel better once your plan is in place and you have confidence in the team. Don’t hesitate to get other opinions. Consider trips to Madison or Chicago to see whether their options seem better to you. My single DIEP was done at Froedtert by Dr. Hijjawi who was trained in Europe and did excellent work. He left for Utah several years ago.

    With genealogy, I just got 2 more requests for assistance. One person is half Swedish so I’ll have to brush up my previous knowledge regarding their records. We happened to be in Salt Lake City during Nordic week a while back & I still have the hand-outs they provided. Gailmary, can you post photos of your beautiful quilt work for us?

  • zogo
    zogo Member Posts: 19,169
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    vlnrf, maybe we have discussed before? But, I also had Dr. Hijjawi do my DIEP in 2010. He was amazing. A great loss for Froedtert when he moved away.

  • sedonadreaming
    sedonadreaming Member Posts: 11
    edited January 29
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    Zogo, if all goes well with my scan on Wednesday. Yes, I said this coming Wed….mixed up my appt times on Friday and missed my scan-airheaded lately. Man, was I mad at myself, but must move on and rescheduled it as fast as I could.

    I will be having my surgery at Froedtert in Milwaukee. I have worked for Froedtert Health for almost 30 years and don't remember Hijawi, but then again in 2010 I was working at the bedside in the ICU.

    I work in Infection Prevention and Control since 2016 and have to review breast cases/reconstruction infection cases as part of my job, so I really use all of my background and knowledge/research to guide me. I feel equally well-informed and terrified to make a decision and just go for it. Wish me luck!

  • weninwi
    weninwi Member Posts: 747
    edited January 29
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    gailmary, sedonadreaming, and zogo,

    Hello fellow Wisconsinites. I'm in Cottage Grove, get my care at UW Madison and was fortunate to line-up a second opinion oncologist at Mayo who I see via Zoom every 3 months. I use the signature feature on BCO to keep track of my dx, tests, and treatments dates/details so won't repeat. I've gotten together with vlnrph once for lunch which was really nice. I'm in Sun City West at the moment enjoying AZ sun and warmth, but return in two weeks for next scans. I'm the genealogist in my family and have found it a most enjoyable and satisfying hobby. My background is Public Health Nursing so got to know some of the local hospital Infection Control staff mostly re TB. Been retired ~14 years.

  • zogo
    zogo Member Posts: 19,169
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    sedona, small world! Maybe you took care of me in 2010 when I had my surgery? It was 11 hours long and quite the recovery!

    My daughter just got engaged and her fiance is in residency at Froedtert (urology). Only until June though, and then he will be going for a Fellowship at City of Hope cancer hospital in LA.

  • gailmary
    gailmary Member Posts: 426
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    Sedona it sounds like you were lucky to reschedule again so quickly. I'll be thinking of you Wed.

    UW Madison and Froedert are about the best in state I hear. I haven't felt a need yet for a second opinion. My Aurora Dr (think ST. LUKES) is 10 minutes from me in Burlington. He doesn't talk much but I've been good. I don't need to waste his time with "what ifs".

    I know my healthcare is like my new hobby. Yuk. Grateful I'm doing so well and can continue to quilt. Zogo, Wen and Sedona what do you entertain yourself with when you're up to it?

    My quilting can be seen if you google Gayle Bong. I have a pinterest board I labeled "Those I did"

  • zogo
    zogo Member Posts: 19,169
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    Gayle, WOW! That is quite the impressive collection of quilts! Just beautiful! I imagine those are very time consuming. And it sounds like you have a nice quilting group of friends.

    in my free time, we go see music. Multiple times a week. Lately, we've been following the bluegrass community. But, we enjoy other genres as well. Chicken Wire Empire is a fantastic band! Their talent is unbelievable. Also, Milbillies, Sugarbush, Valley Fox, Armchair Boogie (Madison), Barbaro (MPLS) the list goes on….

    Sedona, good luck on Wed with the scan.

  • sedonadreaming
    sedonadreaming Member Posts: 11
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    I am really glad I found this support forum! I find value in the rest, but this one is a nice departure from all the science-speak. Zogo, I doubt I would have cared for you during your stay as my area of expertise is internal medicine/critical care medicine. Have you ever seen Henhouse Prowlers (bluegrass)? They are fantastic!

    GailMary, my main diversions to promote sustained sanity are baking and knitting. I started a summer top project a few weeks back and hoping to complete for summer. My latest obsession over the last couple of years is learning to make a decent sourdough bread. I'll have to check out your quilts. I tried making a little quilt years ago when I had an actual space to do it in, but current living situation, while comfy, doesn't really have room for a quilting set-up and I hate putting things up and taking them down. So, a pair of needles or a circular and a skein of yarn suit me right now.

    weninwi, nice to meet a fellow public health nurse! I have utmost respect for what you do. While our work worlds intertwine, there are also big differences and it takes someone special to do what you did. You sure have been through a lot with your ILC!

  • gailmary
    gailmary Member Posts: 426
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    Logo, thank you. I've been quilting 40 years and can work quickly. All work is done by machine. Start to finish could be 1 month. I multitask well and have many at various stages. It's a weird habit.

    I've not been to see music. Dh is hard of hearing and a bit different generation/taste in music. I struggle to even listen to a radio with him around. I do enjoy it though.

    Sedona, I hope you got through the scan eith little anxiety. It's become pretty routine for me. I hope it gets that way for you too. Knotting I never learned. I like baking but the results around my .middle- not so much. Do you have a specialty?

  • sedonadreaming
    sedonadreaming Member Posts: 11
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    gailmary, I do not specialize in any sort of baking, though my latest obsession over the past couple of years has been sourdough bread and things you can make with the discard. I tried to love crochet, was taught both knit and crochet by mom/grandma, but never really got passionate about crochet. CT went great yesterday and I have an op date of 3/28 :). I shouldn't be happy about it, but getting through it will let me feel like I am moving on. Hope you all have a great evening and a fun-filled weekend.

  • zogo
    zogo Member Posts: 19,169
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    Went up to northern WI and the U.P. for the weekend to follow a band we know for multiple shows. Wow, there is so very little snow this year! A friend said half the runs at Big Powderhorn Mountain were closed. But, it definitely made travel easier.

  • gailmary
    gailmary Member Posts: 426
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    Everyone here is well aware winter is not over. 63 today. Just glorious. Snow tomorrow. Yes we need the moisture. No ice please.

    I hope everyone has been enjoying the warm winter.

  • sedonadreaming
    sedonadreaming Member Posts: 11
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    Good morning, WI team! I will be having my surgery soon and anticipate needing to select an oncologist in the Milwaukee area, specifically in the Froedtert system. Does anyone have a recommendation of an oncologist who is tuned into ILC? I can’t tell from their online bios and just curious. Thanks!

  • weninwi
    weninwi Member Posts: 747
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    I have no knowledge of oncologists at Froedtert. I had similar thoughts when I was diagnosed and started to learn about ILC. UW Madison has one oncologist who has made ILC her focus and got a grant recently. My oncologist at UW, head of the Dept, has never suggested that ILC is beyond her expertise.

  • vlnrph
    vlnrph Member Posts: 487
    edited March 4
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    Sedona, for over a decade, during follow-up for ILC+IDC, I saw John Charleson at Froedtert & a couple of his NPs who were all great. Unfortunately, that institution rotates their solid tumor oncologists through various clinics. He became involved sarcoma cases. There was a greater need for expertise in that area so he dropped his 2 days per week in breast.

    I switched my care to another person with more recent training thinking she might have had at least some experience with metastatic patients. Then she went on maternity leave just as my tumor marker was jumping up. After a PET scan showed liver lesions her “physician extender” did not order the correct MRI hepatic imaging agent.

    It was 3 weeks to get the initial session with RAYUS/CDI even though I would have gone to any of their locations. With the error, I waited another 2 weeks for a new appointment, delaying any change in treatment for over a month. After a 2nd opinion there, I switched to UW-Madison in 2023. All that to say, lobular specialists anywhere are rare. Maybe in Chicago…

  • sedonadreaming
    sedonadreaming Member Posts: 11
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    Well, I thank you for your candidness. I work and am insured through Froedtert, so are captive to a degree if I don’t want to go bankrupt. My husband’s aunt is in her second go-round with breast ca, recommends a specific person at the main campus. I’ll keep hunting.