March 2017 Surgery

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  • 2FUN
    2FUN Member Posts: 956
    edited July 2017

    raven, I am not a litigious person, but if you drop a few carefully chosen words and tslk to the office manager, you might get quicker attention. Keep us posted, and try to stay calm. No use getting the rest of your system put back on a hightened state. More hugs to you today.

  • 2FUN
    2FUN Member Posts: 956
    edited July 2017

    raven, I am not a litigious person, but if you drop a few carefully chosen words and tslk to the office manager, you might get quicker attention. Keep us posted, and try to stay calm. No use getting the rest of your system put back on a hightened state. More hugs to you today.

  • raven4mi
    raven4mi Member Posts: 562
    edited July 2017

    Thanks, 2FUN. My panic has subsided - the hole from the leak has finally closed up so at least it's not leaking externally any longer. Assuming it's still leaking under the skin, though. I just can't believe this is happening to me. I can't catch a break.

  • Molly50
    Molly50 Member Posts: 3,773
    edited July 2017

    Raven! Oh my goodness! Didn't the intern use the magnet to find port? How upsetting. I hope your PS agrees to bump up exchange.

  • raven4mi
    raven4mi Member Posts: 562
    edited July 2017

    Actually if I recall correctly, the PS "found" the port, the poor intern just made the hole. Regardless, after some pissy e-mails the PS called me and basically said that as long as it's not leaking externally then he would prefer to have me come in the do a refill with a smaller needle, then keep an eye on it for another week or two. We're at the end and close to exchange anyhow so if anything goes wrong again we'll just push up the exchange surgery. Obviously it's still leaking beneath the skin but as long as it's there it's still doing its job whether inside the TE or outside of it, according to the PS.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Congrats 2fun!!!

    And, Raven, I know I posted to you on another thread -- but UGH, TEs SUCK!!!!!!!!!! I hope for the most successful Exchange for you very soon.

    Mine are set for getting-the-hell-out-of-Dodge (me) on 9/7. Can't wait!!!

  • raven4mi
    raven4mi Member Posts: 562
    edited July 2017

    Congrats on getting a date, Eastcoast! I think I'll be very close to you on my exchange date. I'm hoping for 9/1 or 9/8, unless this leak makes me go earlier.

  • Dafne
    Dafne Member Posts: 104
    edited July 2017

    Girls hi to all and Raven here's what happened with my damn leaking expander. When it started leaking I was almost 3 months out of my BMX. When I went to see my ps he said he didn't feel comfortable putting me in for exchange surgery as for him it was too soon. For the same reason he didn't want to risk a surgery in order to remove the faulty TE and replace it with a new one. He said why risk it with possibilities of infections and no reason to receive one extra anesthesia. So he opted for refilling the TE as soon as it was loosing some of its volume. Now we know it's loosing abt 100-120ccs every 10 days or so, so I am at his office every 10 days.

    Pain in the ass to be honest. Plus pain has increased with every refill for some strange reason. Now I get pain in my back too between my shoulder blades. Another crappy result of the leaking is that bs told me now he will have to use smaller implants as he can't be really sure the expansion is done properly and/or how many ccs the leaking one has in reality. So he will go for a smallish (for my dimensions, rib cage and broad shoulder frame) 450cc round silicon ultra high profile implant which I am sure will make me look like a plate with a fried egg in it :(

    Did I say I hate TE? UGRR

    And some good news for a change. My BRCA tests, against all odds came back NEGATIVE!

    Hallelujah sisters! Still can't believe it to tell you the truth.

    Hugs to you all.

    Oh, my exchange surgery should be sometime in September or early October. We should make a topic for it, what do you say?

  • raven4mi
    raven4mi Member Posts: 562
    edited July 2017

    Ugh is right, Dafne! What a pain! I'm also shooting for a September exchange date. I did go back and PS refilled me with a smaller gauge needle and so far no additional external leaking, although of course I'm sure it's still leaking internally. I estimate I had lost about 75 ccs and they refilled me with about 95 ccs, so I'm now overfilled by about 120 ccs. I don't go back until 8/14 at which time he'll probably have to fill me again, like you.

    Congrats on the negative BRCA result!!!

  • Molly50
    Molly50 Member Posts: 3,773
    edited July 2017

    Dafne, what a story you have! Good news on the BRCA testing! raven, I hope you get your exchange soon. I am slowly adjusting to these implants. They are much more comfortable than TE's but my right side (non cancer) migrated slightly off course and LOOKS smaller than my radiated side. My radiated side is lumpy and misshapen but I guess I can live with it. What bothers me most is the right side really wrinkles up with movement. I toy with the idea of asking for fat grafting but honestly I just don't want to mess with anything. I am unhappy enough to not bother with tats yet. I am 4 months out and I am hopeful that by 6 months they will both look better.

  • 2FUN
    2FUN Member Posts: 956
    edited July 2017

    I don't know a lot about what happens to your tissue when you get rads. But would massage help improve blood flow and elasticity of your radiated tissue? If not it might feel good!

  • raven4mi
    raven4mi Member Posts: 562
    edited August 2017

    2FUN, I massage my radiated breast all throughout the day. I work at home and am alone most of the day so I don't have to worry about office mates walking in and thinking I'm feeling myself up! LOL! And, yes, the PS said that massage is the best thing I could be doing.

  • LisbethS
    LisbethS Member Posts: 145
    edited August 2017

    I've been off here a long time, dealing with other medical issues. I had my bi-TE surgery in March and have been getting fills since then. My left breast has become bright red/purple colored centered on the incision and covers about 80-90% of my breast. And its hot to the touch. I've been having a low-grade fever. I've been sort of ignoring it because I'm hoping it will go away because I've had fevers before that went away (after my surgery). I know Raven mentioned a type of vitamin C that can help fight infection but i thought it was IV and i don't have a naturopath yet. Any ideas how I can fight this myself would be great. Btw I have not had rads so it's not that

  • raven4mi
    raven4mi Member Posts: 562
    edited August 2017

    LisbethS, you should see one of your docs ASAP so they can do a culture and start you on abx. Those are all classic signs of infection. I'm all for supplemental treatments but don't mess around with an infection. Yes, I have done high dose IV vitamin C but that was IN CONJUNCTION WITH abx. You can also look into liposomal vitamin C, which is taken orally. If you are already familiar with or know someone who can help you with essential oils, oregano is said to be supportive to the immune system and antibacterial.

    Please, please, please see about abx ASAP.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    Dafne: GREAT news on the genetic testing! Although sorry about the leaking TE. You, Raven and I will be September Exchange sisters! I'm set for 9/7. Can't wait to be rid of the TEs.

    Lisbeth: I'm going to jump on the call-your-doctor-ASAP train. I had a post-op infection -- very red breast but no fever -- and it could have meant losing the TEs if I did not get it under control. Which meant antibiotics and a big load of them. But it worked. Just not something you want to mess around with.

    Hey, guys, what did your doctors say about getting off Tamoxifen before surgery?

  • tnd22
    tnd22 Member Posts: 65
    edited August 2017

    Lisbeth- I'm going to jump on the Call you doctor train, too! And that's all about that.

    EastCoast- my PS said to quit the Armidex, which surprised my MO, because that does not have a risk of blood clots. Tamoxifen does, though, so I can see getting off that before surgery.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,298
    edited August 2017

    Raven. . .I have been put of pocket for awhile. Not keeping up with posts. Hoping you got your exchange done and are recovering.

    Scottie

  • raven4mi
    raven4mi Member Posts: 562
    edited August 2017

    Thanks, Scottie. Exchange is scheduled for 9/19. Just got the date this morning. Can't wait!

  • 2FUN
    2FUN Member Posts: 956
    edited August 2017

    good luck raven !!

  • Sitti
    Sitti Member Posts: 230
    edited August 2017

    Raven, yay for 9/19 exchange date! My exchange is 9/20.

    Dafne, great news on the negative BRCA results. Sorry to hear you have a leaking TE. Was it very obvious in size, as I'm wondering if my left TE is slowly leaking?

    LisabethS, I'm hoping you got to the Dr and are on the mend.

    Sounds like everyone is making progress. Has anyone heard from or seen bluebirdgirl lately?

    To each of you,

  • Scottiemom11
    Scottiemom11 Member Posts: 1,298
    edited August 2017

    Dafne. . .awesome news on BRCA testing. Hope you're doing well.

    Scottie

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    My Exchange is 9/7! That's three of us with Sept Exchange dates. Excited to get rid of the TEs but a little nervous, too. ;)

  • LisbethS
    LisbethS Member Posts: 145
    edited August 2017

    Yay yay yay raven, sitti, and eastcoast for your exchange surgery dates! I am doing the happy dance for you all.

    I took your advice and went to dr re: infection, been on 10 days of keflex, 10 days of Bactrim which after 10 days started giving me severe vertigo so now they switched me today to doxycycline. My PS is already talking about flap surgery instead--taking muscle from the back. Ugh, I feel like they're jumping the gun. They haven't even tried removing the TE and cleaning out the pocket yet. I don't trust this PS so it is so hard to decide what to do. I was going to find a new PS as soon as my fills were done which would have been in another week...now I don't know if anyone would take me with an active infection...

    On another subject, I have a weird question for you all. How many of you were told by your oncologist to not use aluminum containing anti-perspirants? I've heard some say their oncologists said to not use them, but my oncologist said it's not a problem. My dilemma is that I'm BRCA2 positive and my children have a 50/50 chance of inheriting my BRCA2 gene mutation. My kids need to start using deodorant, I've tried various ones that don't contain aluminum with my daughter but it's just not cutting it and she's in high school now. My son is 11 and is just starting to need deodorant. I don't know what to do and it's stressing me out so much.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    Lisbeth:

    I've talked to two MOs who have said zip about deodorant -- or that it's not clinically proven as a risk. However, I am using natural deodorants now because why risk anything? EXCEPT -- they don't work as well! So I have regular deodorant for days I have to use that (meetings, etc.).

    For my children going through high school, I'd let them use the stuff that works because can you imagine the social issues without? And maybe limit on weekends when it's just family. At least then you're making an effort.

  • tnd22
    tnd22 Member Posts: 65
    edited August 2017

    LisBethS my MO didn't say anything about aluminum containing anti-perspirants but I've always been wary of them (and lots of those give me a rash). Yes, I tried Tom's but it doesn't work very well. Recently switched to Native which is anti-aluminum and anti-paraben and so far it is working better. and I've been working out more. Thing is, it's for women and has very girl scents, and I'm not sure it would work on a teenage boy. It's a little expensive, too. But you could try it or read about it for yourself.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,298
    edited August 2017

    Lisbeth. . .My MO never said anything about antiperspirant. I agree that for kids it's better to use something that works well especially if they're active and in school.

    As for the PS, I would get a second opinion evendors with the infection. I had a new PS for my third surgery to correct CC and other issues from my original implants. I really liked my first one but she wasn't on my insurance anymore and she missued the CC on my last visit wit her. She also really wanted me to go with DIEP and would have pushed for that to fix things. I love my new one. He fixed everything and gave me twins.

    Scottie

  • LisbethS
    LisbethS Member Posts: 145
    edited August 2017

    Thanks for the responses about antiperspirants. Lots of good information. I'm going to try the natural products on my son until they don't work, he's only been smelly a couple times. And get something stronger for my daughter, maybe a roll on since those don't last as long so I'm thinking the toxic stuff will be on her a shorter time. She doesn't get smelly very often either.


    Thnkas!

  • Dafne
    Dafne Member Posts: 104
    edited November 2017

    Girls, seems like most of you here are doing great, since the group is no longer active. I've been away for long time, busy with life. I guess most of you who had scheduled exchange surgeries have done them already, and I would really love to know how you all went since it's not easy locating each of you to ask :)

    I guess I'm the last one still waiting for her exchange surgery which was supposed to be done early September but many things happened, except my right TE leaking. Main thing is my ps got diagnosed with cancer. It was quite a shock to say the least. He is a great guy whom I really like, and he has been great to me all those months. Well, he went ahead with surgery and they removed the tumor, he did not need chemo or radiation, and some 20 days later was back at his place in the hospital. When I went for another refill on my leaking expander and to see how he was doing he told me if he stayed a week more at home, in bed and with his wife always checking up on him, he would jump out of the window LOL. I saw with my own eyes that work therapy was really a therapy for him! I wish I could say the same about me and work...

    Either way, that was the reason we postponed my surgery, and I was willing to wait for him to be able to operate again than changing surgeons at this point. Thank God he did ok, and I hope he remains NED for the rest of his life :)

    If any of you sees this, and you feel like it, please share your news and how everything went. I'm scheduled for 23 of November and believe it or not, quite a bit stressed about the whole new surgery, but I'm managing it the best I can.

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited November 2017

    Dafne, thanks for reactivating this group! It’s hard to believe that we’re at or coming up on our eight-month anniversaries since surgery. I’m sorry your surgery was delayed but glad your PS is now NED and able to do your surgery. I can understand your being stressed - every surgery is nerve wracking!

    Since I had a lumpectomy, I haven’t had to undergo the additional surgeries you have. I did have 33 radiation treatments, which I tolerated very well. My skin got red, of course, and a bit rashy but that all cleared up a couple of weeks after the last treatment. The hardest thing was the extreme fatigue but that also abated within a month.

    I’m now taking anastrozole, an aromatase inhibitor, as I was ER+. I have a few side effects but am basically doing OK. My surgeon released me from his care. I see my MO next month and my RO is going to order my first post-op mammogram in January; I’ll see her after that.

    Best of luck on your surgery, which will take place on our Thanksgiving. So we’ll all give thanks for your reaching this milestone.

    MJ

  • Dafne
    Dafne Member Posts: 104
    edited November 2017

    Tappermom383, so glad you wrote your news!

    Yep, it seems almost unbelievable that we are all somewhere between 6-8 months of our initial surgeries (although for me it's a year since my first double lumpectomy). Time flies, and how I wish it will always flies with no more worries and no more bad news!

    Hooray for finishing your radiation treatments, so glad they were not a big discomfort for you :) And great that the AI are not giving you a hard time. All the best for the new exams on January.

    I forgot it's Thanksgiving on the day of my surgery. I should have remembered, my ex is Greek-American lol. Thanks for reminding me though, I definitely have a lot to give thanks for, and surely all of you here for all your support on those first, difficult steps of my cancer journey. God bless you all, girls.


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