AUGUST 2015 SURGERY SISTERS!!

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  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    I'm more concerned about lymphedema than the sx. No cure for it and the more they take out, the greater the chance. :(

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  • Pat307
    Pat307 Member Posts: 6
    edited August 2015

    Hi Ladies, I've been following this discussion for awhile now hoping to see if others have had the same experience as me. I was diagnosed on May 18th. I am scheduled for a BMX with Lat Flap reconstruction on 8/20. It will be 3 months since my diagnose and I am really having trouble handling the wait. I've never been in a hospital let alone have major surgery. I told both my surgeons on July 6th of my decisions on what type of reconstruction surgery I wanted. I understand that sometimes it's hard to co-ordinate both surgeons and the operating room etc but it will be 7 weeks from the date of my decision to the actual surgery and I have had no contact or information or even a call to see how I'm coping. Is this normal? I feel like I've been abandoned and left to deal with this all on my own. The hospital is rated #1 in my state but they don't seem to be doing a good job of treating the whole patient, not just the cancer.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2015

    Pat307- I'm like you. No sx of any kind in my life. I was dx'd June 2 but think it's sooner than that just because intense pain sent me to get checked and not the discomfort from months before- so I waited to make a move.

    I'm 2 months later or more after dx. Doc says even though mine is grade 3 aggressive, nothing really significant changes in 3 months. Some folks in my shoes were diagnosed beginning of summer and take the summer off for vacation and come back for sx in Sept. It doesn't grow/spread that fast. This thing has been slowly growing, even my aggressive one, for years. It didn't form it's 4 cm self that fast. So no worries for 3 months later is what I've heard.

    My wait is 1) me, wanting some time off so to relax before months of crap, 2) ps and bs schedules including ps on vacation last week. Again, while the c word has you thinking must take out 'now' it's more psychological than anything. My bro was like you have to have it taken out now (within a couple weeks). Now he's ok after I told him no worries. If it was something that really had to be done now, your surg if he's any good would say let's get this done and you worry about ps part later.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2015

    Can you add me to the list? August 25th left breast mx and TE.

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  • mkinoly
    mkinoly Member Posts: 86
    edited August 2015

    The waiting is very hard. First saw doctor June 23, was officially diagnosed by biopsy pathology on July 3, and surgery will be August 17, which isn't as long as some as you have to wait. I haven't heard from any doctors and wouldn't expect to until surgery. I don't think there's anything they can really do or say, and I've never heard of a doctor just checking in with someone when they aren't acutely ill (though it probably can happen). I figure I'm just a tiny blip in their practice and they aren't thinking about me while they're tending to their many other patients.

    I'm afraid of lymphedema, too. It sounds hard to deal with and adds to the recovery struggle. I'll do everything I can to avoid it, though I know it can happen regardless.

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  • justamy
    justamy Member Posts: 532
    edited August 2015

    Ive been doing this about a year. I was dx in July 2014. I've had 8 chemos and 4 surgeries so far and have yet to have any doctor call to just check on me. The only time I hear from them iz when I am sick or ready for a surgery. I have my next reconstruction surgery Thursday. I haven't heard anything from my doctor. I'm just another bs patient in their huge practices. I get good medical care but nothing else.

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  • mjh1
    mjh1 Member Posts: 445
    edited August 2015

    suzy1067 and windermeremom - hope your surgery went well today. Wishing u a smooth n uneventful recovery. Hope you'll b ale tpost soon n let us know how you're doing. Warm hugs!!!

    Marathon girl - you'll b in our pockets tomorrow. Hope all goes well with the direct-to n your recovery will b uneventful. Hugs!!

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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited August 2015

    Pat, I don't know if all treatment plans include this but the very day I got my dx, I also got a call from a nurse navigator and believe me, she was my saving grace as I waited for phone calls and test results and things. She was a calming wealth of information and I was grateful to have someone to talk to. I think this service was provided through the hospital. It sure would be nice if this was standard of care everywhere. The waiting is the hardest part. I only had to wait a month between dx and my BMX surgery, but it felt like an eternity. Hang in there. Hope the surgeries went well today and that everyone who is recovering is resting comfortably. Take care surgery sisters!

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  • Pat307
    Pat307 Member Posts: 6
    edited August 2015

    Thanks everyone for letting me know I'm not alone. Hummingbird I was hoping my hospital had someone like that to help guide you through the system but it sounds like most don't. The scary part is when you have to do all the research yourself on the internet it can get pretty scary. At least I only have 3 more weeks to go! Good luck everyone.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    Pat, your hospital might have a nurse navigator. Try calling them or even looking on their website. Mine had one as well, and I'm not in a huge city. Good luck!

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  • 39andhip
    39andhip Member Posts: 164
    edited August 2015

    Hi Pat. Like all the others, I've never had a doctor call just to check on me. However, like Hummingbird, I did have a nurse navigator, although she was fairly useless. LOL. Unfortunately, I think feeling abandoned is common, which is why a place like this message board can flourish (among other reasons). I have a great plastic surgeon who even gave me his personal cell # and told me to call or text him at any time, and that still isn't enough. (Not that I call him or text him that much - just to say this is a lonely road, and I think feeling alone is sort of inevitable for most.) I feel like I am waiting forever for my mastectomy, though I realize it is hard to coordinate three different surgeons' schedules. Plastic surgeons seem to be the hold up, as they do so many things other than breast recon. Also note to self: try not to get cancer over the summer, haha.

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited August 2015

    I thought I was doing okay with getting ready for surgery on Friday. Had the weirdest dream last night. I was going to different hospital, different surgery, and different surgeon. Very weird. Woke up and thought what the heck.


    Justamy and Artistra wishing you the best tomorrow. Hugs

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  • justamy
    justamy Member Posts: 532
    edited August 2015

    So not looking forward to tomorrow! I want the revision but I don't want to have to heal again. I'm not worried about the surgery itself...just all the stuff after. Recovery and whether it will work and be the last surgery. With that said.. I'll be glad w it's over!

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  • 39andhip
    39andhip Member Posts: 164
    edited August 2015

    Good luck justamy!

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  • shorfi
    shorfi Member Posts: 791
    edited August 2015

    Wishing you the best justamy :)

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  • AudreyB
    AudreyB Member Posts: 377
    edited August 2015

    Best wishes Amy!

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited August 2015

    Hi Ladies!

    Would you add me to the list of August surgeries? My date is August 31, just got in under the wire! Left mastectomy. Thank you! Thoughts and prayers to all of you!

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  • mjh1
    mjh1 Member Posts: 445
    edited August 2015

    Welcome to all the new surgery sisters!!  Our list certainly is growing.

    quiltlibrarian - I've had nothing but strange dreams since my MX not to mention I get up at least twice a night now when I used to be a sound sleeper.   I'm hoping this will resolve when my journey to boobeyville will finally be over and this is not part of the new normal.

    artista928 -  Wishing you a successful surgery and a smooth and uneventful recovery.  Gentle hugs!!

    Justamy - you will definitely be in my pocket tomorrow.  You have had such a winding road to boobeyville.  I hope tomorrow you will reach the end of your journey and finally have new "girls" that you love.  Warm hugs!!

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  • Tuckerdan
    Tuckerdan Member Posts: 1
    edited August 2015

    I've been stalking the boards for awhile and now making my first post 😊. My Bmx with lat flapsis Aug. 21! Now it's getting real...I'm so ready to be on the other side of this! I hate we all have to go through this but it sure will be nice to have some "company" on this journey.

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  • AudreyB
    AudreyB Member Posts: 377
    edited August 2015

    Ladies, my Pink Perfect nipples arrived today. I have to say they look lovely. I stuck them on with no adhesive just to see how they look. I almost started crying. Even with my misshapen expanders they gave me a visual of what the future holds once I have my exchange surgery. Not having nipples has been the hardest part of this journey for me. These things are perfect, very thin around the edges so they look real as they just blend into my skin. I got the bold style so there is nice projection. I am not going to use them or the adhesive until I'm healed from exchange SX. I don't want to risk an allergic reaction (God forbid). I don't want anything to prevent SX. Anyway, I ordered them on CureDiva site and using their 20% discount for first time purchase they were $209.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2015

    best wishes to justamy and Arista for tomorrow.

    Thanks for letting me join. I am still recovering from my Lx and getting ready for umx and TE placement. My head is still spinning from how fast everything changes
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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited August 2015

    hey! Is anyone else having ALND along with their lumpectomy/mastectomy? If so, wondering what your surgeons have said about what they plan to take out. I have one node showing cancer when they biopsied it, so they already know going into surgery to take more - the surgical resident said they would take all, but that doesnt sound right - thoughts?

    Kim

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  • AudreyB
    AudreyB Member Posts: 377
    edited August 2015

    Molly50, indeed. One day your just going about your life and the next day your whole world changes. It does get easier though, so keep the faith. Cry when you must but try to smile more.

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  • Pat307
    Pat307 Member Posts: 6
    edited August 2015

    Thanks 39andHip. I guess I worded it wrong. it's not that I expected the doctors to call me and check up on me, I just expected more information on what to expect. All I was told was to be there at 5:30am and have nothing to eat or drink after midnight. If it wasn't for this wonderful website and everyone's advise I wouldn't have even know to bring a button down shirt to go home in lol! I have a follow up appt/w my PS and I'm hoping for more info from her but that's 1 wk b/4 my surgery and I felt I could have used these 7 weeks getting things ready if I knew what to do. OH well, it's only 2 weeks away now. I've been dealing with it for 4 months now and I am so ready too be done with it! Good luck to all of you!

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  • georgie61
    georgie61 Member Posts: 95
    edited August 2015

    I know how you feel, Pat. I have to travel for my BiMX on 8/28. All they told me was to be in town the day before - because I couldn't call until 2pm the day before to know what time my surgery is the next day. I got one sheet of instructions telling me not to eat the night before, that I would be spending the night in the hospital for one night etc.. The BS did tell me when I saw her to plan on spending one more night in town in a hotel to make sure everything was good before driving home. ( obviously, my husband will be doing the actual driving) But no practical advice like I am getting here. Interestingly, I did get a robocall from my insurance company wanting to know if I wanted to talk to a nurse about my "upcoming hospital stay". ?? Weird. I said "no thanks" only because I knew they couldn't possibly give me any specific information - just general info about mastectomies, etc..

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2015

    kimmer33,


    I had ALND with my Lx. They don't know ahead of time how many nodes they are taking because the way it was explained to me is it is like fat pad that contains your axillary lymph nodes and they take the whole pad. The number of nodes will be noted in your pathology report. I had 9 nodes removed, 2 of which were positive.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2015

    Any of you worried about the wire guide insertion my experience was not bad. Neither was the isotope injection. I know some women have bad experiences but my breast center was amazing and the radiologist was very experienced.

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  • 39andhip
    39andhip Member Posts: 164
    edited August 2015

    Pat - I totally know what you mean. I think the only reason I have any clue about all of this is because I've already had two lumpectomies, and figure the mastectomy is a lumpectomy on steroids, haha. I haven't received any guidance whatsoever, and keep thinking maybe it's because my surgery isn't for a few weeks. But maybe not? Interestingly, I had my lumpectomies at the local surgery center, and they were fairly thorough with me in terms of pre-op stuff. I was required to have a pre-op phone consult with a nurse both times. For the mastectomy, I'm going to top-ranked hospital in the state, but yet... nothing so far.

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  • mjh1
    mjh1 Member Posts: 445
    edited August 2015

    audrey - I'm so happy for you that you love those new nips.  I can't wait to see when you finally put them on.  Now you just have to be patient a little while longer and wait for the exchange and to heal.

    kimmer33 - when they do the MX they usually just check the SN at time of surgery to see if it's postive or negative (at least that's what they did in my case).  If it's postive then they go and remove all the other nodes that are there and those results come back with the final path as to how many were positive or negative.  Everyone has a different amount of nodes and they can't say how many are in the cluster they remove until it's examined.

    Pat - I too was told nothing on prep for MX other than be told to wear comfortable clothes when I leave.  I learned all the things I would need just from searching on the Web.  Wish I had known about all the forums on BCO then.  It would have made it so much easier.  If you can't find the answer to what you need, just ask.  I'm sure a fellow sister will have an answer.

    quiltlibrarian - Best wishes in your BMX tomorrow.  Hope you have a smooth and uneventful recovery.  Warm hugs!!

    nibblersmom - Good luck in the LX tomorrow.  Hope you get a good path report and clean margins.  Hugs!!

    Since it will be such a nice weekend and I'm not working tomorrow, I've decided to take a ride up to the lake house early.  Haven't been up there since mid July so I'm looking forward to the clean country air and just hearing the crickets as opposed to car alarms and fire trucks wailing.  Hope you all have a calm and relaxing weekend.  Try not to stress about upcoming surgeries and live in the moment of today.  Tomorrow will come soon enough.


     

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  • Scotland219312
    Scotland219312 Member Posts: 237
    edited August 2015

    Kimmer33, I also have a node that is positive before surgery. My surgeon is planning on ALND. I think that's pretty standard once they confirm that the cancer has travelled to the lymph nodes. With us, they already know

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