UCSD or San Diego Reconstruction Girls?

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    WOW that sounds pretty intense. ignore the PA.. she could have had a bad day? or that she gives out these instructions/info almost every room she walks into so she might be a tad desensitized. jammies vs class was the right choice :)

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Thank you panthrah :) You're right, she is probably desensitized, and she is not old enough to have this possibility ever be on her horizon; this is all happening to "other people". Probably it will be better the next time I see her.

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    i try to give people the benefit of the doubt. Ive caught myself being jaded to things that dont bother me without thinking how much its new to the other person .. whoops.. im older and wiser now I guess :p

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    yes haha, me too :)

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  • Kimberli43
    Kimberli43 Member Posts: 14
    edited May 2015

    I had A tissue expander which has now been replaced with an implant. I will say this about the PS...it was surprising to me how often I would see the PS. I have the closest relationship with him. I didn't expect that. I saw him every week for fills and then worked together to plan the reconstruction. My point is make sure you like the dr and their office because you will be there a lot.

    I hope this makes sense. I'm so tired it's been a long day.

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    It makes a lot of sense, Kimberli. I don't like this PA, but there is another one there; hopefully she is better, or hopefully I can whip them both into shape. Apparently it is the PA's in the office who do the fills. The thing about this girl is not that she was mean, it was that she was acting too informally, if that makes sense, sort of like we were girlfriends hanging out getting ready to get our nails done. She has to have a Master's Degree to be a PA, and yet she seemed like an undergrad at college. It was weird. She spoke to me really informally, almost condescendingly. I think she is a nice person, though. She just doesn't realize what it feels like to be facing a double mastectomy; this is just work to her, and what am I so worried about? As she gets older and deals with health problems of herself or family, she will get a better bed-side manner. Bottom line, she will fix it or someone else will be doing my refills haha. I was taken aback so I didn't handle it right then, but I'm good at being the squeaky wheel. :) A good night's sleep has put the fire back into me!

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Well my surgery has been scheduled. July 7th. sigh.

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  • Kimberli43
    Kimberli43 Member Posts: 14
    edited May 2015

    Hi Ladies! Hope everyone is doing well and enjoying the rain.

    All is good here. I start radiation on 5/20. I'm looking forward to finishing treatment.

    Just checking in....

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Hi Kimberli I'm actually in Sonora (foothills of Yosemite) working for a week. It is pretty here but I miss my dog. I hope your first treatment is boring and uneventful! ;)

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2015

    Hi ladies! Ispy, NisaVilla is a friend of mine & said you guys had been visiting about reconstruction 'stuff' and that you had this thread for San Diego ladies. I don't know if you know this, but there is a group of San Diego ladies who meet once a month for lunch and next month some of ladies from an exercise thread (including Nisa) are getting together with them while we are there on our annual get-together. We will be meeting up with them on Sunday June 14 at 11:00 for a LONG lunch at the Miramar Café (7128 Miramar Rd). If any of you would like to attend, go to the Get Togethers forum and look for the san diego area thread. Everyone/Anyone is invited, they would just like a rough number so they know how many people to make reservations for. Hope to see some of you there!!

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Hi Ruth! Thank you! That is my graduation from UCSD weekend (even my surgery is waiting until after I graduate, come heck or highwater!) but maybe some of the other girls on here can attend. Also, I will keep an eye out for the next time you are getting together. Thank you!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2015

    You bet. Congratulations on your graduation!!!!

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Thank you!!

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    I just got home from cabo.. glad no one floated away :) I got a letter asking if i want to be in a study at uscd. I have LCIS which is the bottom rung and stage zero but I guess im in the cancer registry?? there is such a thing?? and Im in it? odd. Its a mental health study .. not sure Im the right person for this *shrug* there is therapy involved and I might throw off their numbers as Im more of the go with the flow abt this. :p

    Congrats on graduation ipsy!!! I had two friends grad today from sdsu :)

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Thank you! A few papers left to write and then I'm done after five years! I will be graduating Summa Cum Laude -- I'm allowed to brag because I did it even with having a bc diagnosis and surgery haha.

    Yea, I wouldn't be great for that study, either. It's weird, because it seems the results would be skewed -- do people who are more depressed or worried or upset volunteer for a mental health study? hmmmmm. Well, I didn't get a letter .... I'm still trying to find someone who has used Dr. Amanda Gosman as a plastic surgeon. Trying to relax about it and figure if my bs loves her, and I love my bs, then she is probably pretty good...

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    oooh you have every damn right to brag!!! hell yeah! *pats you on the back* thats one hell of an accomplishment :)

    the letter states " since youve had surgery for your breast cancer.." well.. both surgeries have come back b9 and no rads or chemo and lcis it seems is more of a red flag than an actual diagnosis .. I dont feel that id be right for their study. its prolly someones dissertation

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Yea, makes you want to go: "do you know something I don't know?"

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    RIGHT!

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    So about the topic the thread is about.. I have a question... I now think I have checked off all the possible "high risk" boxes except being overweight and the gene check (figured high risk is high risk). I have all (I do really think all) the big words and precursors. MO said to wait two years before I decide on a BMX. 2 years from when this started would be 2016. Now Ive had 2 lx, 8 months part. and if Im going to need a biopsy and then lx every 6 months.. this is going to get old real quick. I have read on here that a lady said she had countless biopsies and 9 lx. Im barely an A cup.. If I get hole punched that much Ill have nothing left :p Im a Libra..decisions are hard ..just trying to figure out a plan of a attack. Def want recon and I thought about the gummy bear ones.. and really thats about as far as Ive gotten.

    Thoughts?

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Oh it's been so tough. This was a grueling decision for me. I felt like it took physical effort to come to a decision and I was exhausted afterwards for a week. I still went back and forth on it. I had one thing pushing me over the edge: I have to have another lumpectomy, and it is most likely some form of cancer. At my six month mammogram after my September lumpectomy, they found brand new calcifications that weren't there six months before. Two biopsies later, and they say it is a papilloma; well, papillomas have to come out (even though usually benign, because they can hide cancer), and papillomas don't grow that fast -- cancer does. So my decision to have a PBMX was based on I'm having another surgery right now anyway, so is it going to be a big one? That and I have my mother and her sister died of bc, I have dense breasts, I have a gene that increases breast cancer risk after menopause (I had my ovaries removed so I'm in menopause) and I just found out that if your mother took DES hormone when pregnant you have higher risk of bc and that's me too. So I'm like at this point it is inevitable, and I'd like to get it done when I don't have to get chemo too. But it was a brutal decision: this is not a simple surgery or recovery when you do reconstruction, and there is a 50% complication rate. So I'd rather go to Disneyland. I'm going to sleep now but I'll respond in the morning :)

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited May 2015

    we have a BCO San Diego lunch bunch that meets once a month the last Sunday of the month at the Miramar Cafe on Miramar Road. Check us out under Get Togethers, San Diego. All arewelcome to join us.Lots of good info and fun. We just need to know numbers to make reservations.

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    ipsy.. you can get a wheelchair and camp out on main st and eat cotton candy and watch the parade while you are recovering :p totally would be my plan when i feel up to it :):)

    my risks are as follows: period started at 10, no kids, no breastfeeding, irregular periods, gma had bc at 80, dense breasts, lcis. *new* papilloma, alh, adh, and prolly a few other words.

    I am too busy to keep taking time off for this *taps my foot* I know its a huge surgery and recovery isnt fun. but id also rather do this while Im "healthy and able" My husband has gone vacation happy we have a lot of trips on the books for this year. But if Im going to be able to plan for this surgery I can get him to not make plans for more trips. absolutely silly way of doing this. but since this obviously impacts him as well. Id rather not have it impact his time off too.

    not chopping at the bit to get this done.. just doing my libra decision making process :p

    SoCalLisa- Ive read the thread a few times, I live in Mira Mesa. I had planned on attending a few times and then things have come up and I could make it :( I will make it there one of these times :)

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    panthrah: oh yea, I forgot the ADH in the margins where my DCIS was. Anyway, you sound like you are high risk for sure. Have you discussed with your peeps at ... Sharp or Scripps I can't remember.... about a PBMX? It sounds like insurance would definitely cover it with your boobs being littered with initials...

    I couldn't sleep. Still trying. Out of town on business for the last week, and I finally get to go home tomorrow to my puppy dog and I'm so excited I can't sleep.

    SoCalLisa thank you, I want to make it to that lunch. I can't in June because I'm graduating that weekend, but I will try to make it to the next one... or the one after, since my PBMX is July 7th...

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    LOLOLOL Littered with initials LOLOL Thats awesome !! i generally say Im bags of marbles :p I had my post op today and she was very behind so I didnt bring PBMX this time. now since my m&m plan has shifted .. mammo will be end of july, u/s and her in nov then she will schedule the MRI. If they want to cut things out again in nov i might flip. Im at Scripps

    I asked my doctor if i had everything on the high risk checklist. she oh yes.. we are definitely watching you.

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    your m&m plan

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    mammogram and mri every 6 months.. my M&M plan :p

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    oh I get it! Also, I got a letter about a study being done on newly diagnosed breast cancer patients from the psychology department at SDSU -- is that the one you got? You said UCSD....did you mean SDSU?

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    yep thats the one. i read it fast so maybe i mixed up the schools. I really dont think Im the type they are looking for.

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  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    okay, yea. I don't think I'm a candidate for them, either. Okay so I meet with my breast surgeon tomorrow to "consent" me for the surgery. I actually haven't spoken to her about how she plans to do the surgery, because when I last met her it was to discuss lumpectomy and tamoxifen, and then she brought up PBMX and I was ready but not ready for that discussion, if you know what I mean? So then I left her office and decided yes to PBMX. So now I don't know if she plans to do nipple or skin sparing or neither, or sentinel node biopsy etc etc. So I'm going to ask her:

    1. Are we doing nipple or skin sparing or neither?

    2. I don't want to do a sentinel node (and see if she argues). My feeling is if she finds a huge cancer in there we can go back. If she doesn't, I don't want the risk of lymphedema.

    3. how long will the surgery be, how long will I be in the hospital, do I need to donate blood; those usual questions.

    4. Where will the scar be? Just so I know.

    5. What's this I hear about dog ears?? Extra flaps of skin under armpits? Will I have that?

    Okay does anyone else see any questions I'm missing?

    Then after the appointment I go to my college's graduation dinner. So weird....

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  • panthrah
    panthrah Member Posts: 433
    edited May 2015

    my ?s to you which would then stem ?s for her..

    1. are you doing recon? Implants? types of implants? TE?s Size of implant?

    2. if no nipple sparing will you get tattoos or leave empty? ( I personally would go with large tattooed piece..but im a tatted lady already)

    ?s for her:

    1. can i go direct to implants? if not.. how long before implants can be put in?

    2. how long before can i return to work?

    3. whats the general healing time ( i know it depends on a zillion things but id ask anyways)


    thats all i have right now

    wheres your grad dinner?

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