Any ladies from WISCONSIN??
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I checked that predictor tool and it said I had a 10-16% chance of recurrence...however weare it said to enter the number of excisions I was unsure what to put...my path report says there were 6 specimens and most were divided into muliple samples. Would it be that dr. took ONE large excision and then divided into all the other specimens? otherwise it has to mean there was 6 excisions and the predictor tool only allows 1-4.... confusion :?
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I would be interested in talking to anyone that had their BMX with a DIEP flap reconstruction done at the UW Madison or possibly whatever other big hospital comparable to that in Wisconsin. Also anyone who had good results with nipple reconstruction done in Madison. Feel free to PM me or email me bluewillowskys@gmail.com. THanks ladies
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One excision
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I believe your probability of recurrence is a LOT lower than that given the size of your tumour, the stage and grade...but I don't know everything obviously and I'm not a doctor.
Do as much as you can to take care of yourself. Exercise, eat well, get spiritual...I'm doing all these things because worrying is so negative, not that I don't worry, I do...but I try not to
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Hi bluewillow! I understand UW now has another plastic surgeon who does DIEP - mine was at Froedtert with a very experienced doctor who trained several years ago in Europe. Have you looked at the reconstruction topics here on bco?
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As far as tamoxifen risk/benefit, we here in Wisconsin can thank Craig Jordan (who was at the UW from 1980 until '93) for significant work in getting this amazingly effective medication to market.
Not everyone can tolerate it, or is a candidate for it, but survival statistics are so strong that I'm concerned when someone does not even attempt a trial. You can always quit. It's really the best weapon in our arsenal to inhibit estrogen receptor positive tumor cells in the premenopausal state. Why worry about rare side effects that may never happen to you?
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Us TN's unfortunately don't have the luxury of tamoxifen or any type of hormone therapy!
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Hi LanM Sorry I don't know what a TN is?
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I'm so tired of hearing the phrase: "the benefits outweigh the risks" Poppycock!! For whom? This is my body and decide what happens to it. Look up :"the truth about tamoxifen" , The benefits are not as good as it seems and the absolute OUTRAGE that they state that "Oh you can simply have a hysterectomy if you get uterine cancer" Really??? Really???? I don't WANT a hysterectomy, thank you very much...I like my orgasms and I would like every health professional who says that to endure an endometrial biopsy. You should not do to your patient what you would not do to yourself or your own family. Patients are not beneath you
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Last year I had a uterine scare....my pap turned out abnormal so I had to have biopsy done. The dr. took four samples that later turned out to be negative. I was freaking out because ive never had an abnormal pap prior to this and assumed it had something to do with tamoxifen. My yrly physical exam is due in February and my mammo end of March. Its only been three years and Im already tired of being on alert for a recurrence. In the past week Ive read about women had a stroke and another with 2 pulmonary embolisms. I know how awful I felt on tamoxifen. Im glad its available for those who can tolerate it and need it, but I just dont think I can do it again, not if I want to enjoy my life and be active. I feel like because my grade was a two thats a little to close to a 3 for my comfort which is why Im considering the BMX. Im scared s***less of doing a BMX , but i think i fear cancer more. I want to be around to see my kids get married and raise my grandkids( i pray ill get some, at the rate my kids are going ,ages 21-28 , i think my best hope is the 21yr old....LOL) and I want to grow old ( well actually id rather not age...LOL) with my partner and hopefully travel. I fear by not taking the tamoxifen my chances of recurrence are more likely over the next 30-40 yrs than not (given Im only 45 now). Every night i took the med i had a sick feeling in the pit of my stomach that i was basically doing chemo....i know chemo is much worse of course, but its the only pill i took(and i take a lot) that ever made me feel like i was putting a horrible chemical in my body. None of my other meds give me such horrible side effects like that tamoxifen did. Anyway, who knows maybe i wont even be a good candidate for the DIEP....if not ,well i dont want really implants either, i dont think i could handle doing the TEs. Also I had rads and i havent seen many good things about implants after rads...so i guess that would leave me in the watch and wait and do yrly testing category.
vlnrph: thanks for the info. Yes Im reading several different threads right now on BCO and hoping between doing that and speaking to multiple drs. I can make an informed decision.
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TN is a triple negative breast cancer - it's not receptive to estrogen, not receptive to progesterone and Her2 negative as well. It's a rarer form of breast cancer and is very aggressive.
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bluewillowskys, I also had pbmx diep flap at Froedtert 3 years ago.
I had ALH plus a family history, with my Aunt and her daughter both dying at 45 of breast cancer. My cousin had dense breasts and found a lump. This was several years ago in Madison, but they told her it wasn't a problem. A few months later, the lump became painful and she went back in. It was in fact cancer and she immediately had a mastectomy, chemo and rads. She didn't make it more than about 18 months before she died. They would have done alternating mammo and scans every 6 mos for the rest of my life to check me. I felt like the stress of knowing a scan was approaching, then waiting for results was not healthy for me. Stress alone can be bad for your body. And I, like you, didn't want to be going back for replacements of implants. I wasn't able to save my nipples, but can get reconstruction of them if I want. At this point, I'm thinking about just tattoos. I've lost 40 lbs and am waiting to lose another 10-15 before I go for a final reconstruction (they do shrink as you lose weight). My risk has gone from 40% to 1% and the peace of mind has been priceless.
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Ah got it, Lana M. They did not test me for HER2 because I had DCIS but I too had a more aggressive tumor with hormone receptor negative status so I understand. Sigh.
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Oh, LanaM, even though I was estrogen and progesterone negative they did say I could try tamoxifen to try to prevent new cancer in contralateral breast although it would not do anything for the surgical breast because of the hormone negative status. I decided not to take tamoxifen after reading quite a bit about it.
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ZOGO: thank you for sharing your story. I have lots of stress in my life and have the past ten yrs....who knows, maybe thats why I got the DCIS....i had no family history. I know I need to do something...i just have to keep praying that I will make the best decision and get the best drs. I can.
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Does anyone have experience with a PS named DR. Rao? What PSs have a good reputation at UW Madison? If I have the PBMX does my lumpectomy BS, Dr.Wilke do it then a PS comes in to do the reconstruct? or does the PS do the whole surgery?
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BS does his job then the P'S does his. Once the BS removes one side the P'S starts the recon on that side and the BS removes the 2nd breast tissue. . Then when P'S is done with the first side the second side is reconstructed by the PS. That's why the surgery is so long. Because they have to remove the tissue needed from back or belly to start recon. The P'S may actually have to wait for the BS to be done for a flap. Mine was implants so they could start on the first side as soon as the BS was done. But for flaps maybe not! I chose implants as I did not think my body would be up to 12 or more hours of sx.
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Texted with mom today. She had thyroid cancer in 2012. She told me they found more lumps and she is seeing 2 doctors this week. It runs in her family a lot. So i have to be concerned about BC and TC. We had not spoke only 1-2 times since last June. We had a falling out the night before my wedding. We had been doing so-so before that after about an 8 yr hiatus that ended when i was DX in 2011. I pray we can get on the same page soon.
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Blue, I'll pray for both of you.
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zogo, congrats on the 40 lbs! I had my tattoo done at Dr H's.
bluewillow, I had Dr Rao on my call list when I was a drug company sales rep in Madison over 30 years ago. The UW website describes his experience, many specialities in addition to DIEP so he may not actually do a lot of those. I also wonder if he is close to retirement which is why a new doctor was brought in recently.
Don't blame yourself about stress. Do what you can and go from there. Hope your reconciliation with mom goes well. Thyroid CA is no fun but is usually fairly easy to take care of, unlike some of the cases that are shared on this board. Even endometrial/uterine cancer could be thought of as less omnious than BC in many instances since it can be "cured" by organ removal.
Moonflower, if you have a 2nd qualified plastic surgeon (like at Froedtert), they both work after the mastectomy is done which means a bilateral reconstruction procedure might be completed in less time, perhaps 6-7 hours: still a long haul but not half a day under anesthesia...
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Moonflwr: thankyou for your words.
vlnrph: thanks for the info on Rao. Im not sure now that id want a dr. on his way out of the business. Think I will cancel my appt with him.
Who is the dr. mainly used at Froedtert?
Has anyone had two drs. do their surgery at UW Madison? or is it that half day long procedure?
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vl, is that standard practice to have 2 PS? My P'S never mentioned it to me but he told me 12 hours. So Im thinking he doesn't work with another surgeon routinely. Although he did work with my BS. But you know that was hard to schedule! 2 surgeons. I imagine 3 surgeons would be a bit more complicated. Man, what we have to think about and do just to try to look and feel normal! Even if it our NEW NORMAL! LOL
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my DW , when i told her about Froedtert, reminded me that if i have to stay over night or longer that she will need a hotel. Otherwise its a 5hr round trip every day in order for her to be with me at the hospital. So I guess Ill have to take that into consideration
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I have noticed that MDs do not always describe procedures not available at their facility. If they mostly do implants, that is the option they will emphasize (with good reason since that is what they are most comfortable with!) Hijjawi's partner is/was LoGuidice for bilateral at Froedtert.
Bluewillow, the post-DIEP hospital stay is 4 or 5 days. It wouldn't hurt to get the info from UW but any doctor who graduated from med school, according to the website, in 1970 is probably in their late 60's, pushing 70. Unless he was "Doogie Howzer"...
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vlnrph: thanks for the info again....i love this website so many helpful people
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I think there is a house called Cathy's? in Milwaukee for family members to stay at when patients are in the hospital (either free or lower cost than a hotel). Froedtert has private rooms and may even let someone sleep in the recliner chair overnight. Not real comfortable but maybe OK for a day or two if the other option is full or you don't qualify for the Ronald McDonald facility...
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If you are over 2 hours away I think MCDONALD houses let's you stay. As long as you are not in the 5 county area.
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in order to be at McDonalds dont you have to be dx as cancer? im not technically having a recurrence...thanks for the info about the lower cost/free places....without such a thing i doubt i would be able to be a patient at Froedtert or Mayo....im on disability so income is really tight. Spending $75-100 a night at a hotel isnt in the cards.
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Checked the website for Kathy's House (got the name right but it's spelled with a K, not C!): they do not bill guests, you pay what you think you can. It's on 103rd street, Froedtert is around 90th not far from the zoo although you can stay there no matter which hospital is providing treatment. Very generous idea.
More snow and another deep freeze. Why do we live in Wisconsin? At least January's almost over...
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BlueWillow~ I don't normally put doctors on a pedestal. (Usually, anything but that!). But, Dr Hijjawi is the best doctor I have ever had, hands down. My pbmx + diep was 11 hours and my stay was 5-6 days. That was before he was working simultaneously with another doctor. Here is the info on that place to stay: Kathy's House LInk
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