August 2014 Surgery

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  • angelfaith456
    angelfaith456 Member Posts: 83
    edited September 2014

    Welcome couture! You have joined a great group of ladies! I had a BMX, so I can't comment on your situation. But I understand about the back ache. Your doing the right thing checking it out. Take it easy and allow yourself to recover. It will take time.

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited September 2014

    Hello Ladies......pain clinic and PS appointments tomorrow !!  Im so excited lol...well, atleast about seeing ps because I think Im finally ready for a fill ! The pain has been soo much better, for about 5 or 6 days now :))) Go figure...now that I have an appointment with the pain clinic tomorrow. Always seems to be the way...kind of like when you get a toothache, finally get to the dentist and it stops ! Oh well

     

    Good luck today ally thinking of you...sorry ladies there are sooo many posts and pages, I have to take a couple hours to catch up with everyone.

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  • Allydp
    Allydp Member Posts: 520
    edited September 2014

    ALL CLEAR!!! I am so relieved!!! My onc felt the rib and all around it and feels the pain is muscular. I showed her the rash, which is barely anything now after using that cream my derm gave me, and she said she would bet her life it wasn't skin mets. She said chemo is hard on the muscles, but so is menopause, which I was thrown into from chemo. She said I'm going to have extra aches and pains from that combo. She wants me to start a free 12 week rehab program for cancer survivors. It's lead by a doctor who would work one-on-one with me twice a week. I think I'm going to do it. I used to do yoga and zumba every week and there's no way I could just jump back into that at this point. Chemo really kicked by butt. I realized as I was leaving the appt this morning that I'm officially done. I'm officially done with treatment! I don't see my onc again for 3 mos. Now, I've just got to focus on the rest of these surgeries. Which leads me to other news, I met with a gyn onc regarding the hysterectomy I need due to having the BRCA2 gene. I'm on the books for Oct 23! I had no idea they'd be so proactive! I'm assuming my exchange will be around December, which will make that 3 surgeries in 4 months. My onc was fine with that timeline, but again stressed the need for the rehab program. It'll be done laparoscopically, so recovery should only be about 2 weeks. Unless they find cancer, which is very low (2% chance), then he'd have to make an incision which would mean a 6 week recovery. I've decided to remove everything - tubes, ovaries, uterus and cervix. I already have two large uterine fibroids and there's some speculation that one of my ovaries is adhered to my uterus, so removing it would damage the uterus anyway. I'm also fairly sure he's going to find some endometriosis in there, so I'll be glad to just clean everything up and be done with it. It was a tough decision since we don't have children yet (we'd been trying for years pre-cancer), but we're hoping and praying to find a surrogate in a year or two. In fact, my friend who's an infertility advocate just approached me about featuring my husband and me in a piece for the Huffiington Post. I'm not sure we want to put our lives in the national spotlight, but it would sure help get our story out there and potentially find a surrogate! Anyway, I just want to thank you all again from the bottom of my heart for sticking with me these last couple weeks. You are all amazing, amazing women and I'm very thankful to have "met" you all. :)

    Oh, and thanks too for all the anniversary wishes! We had a nice time going to dinner! 

    Mil - good for your for sticking to your guns and being your own advocate. I hope you can get in touch with your onc and let him know why you cancelled and figure out a better plan. As always, thinking of you. 

    Psalm - so great to hear from you! I'm thrilled to hear you don't need chemo, but can totally understand second guessing not doing it. I can relate because I just went through the same thing with rads. They told me I don't need it, but it's hard to leave an option on the table. Sounds like the pain isn't anything sinister, but very glad you're getting the peace of mind with a scan. Keep us posted on your results.

    Natalya - Welcome, I've added you to our list! I am so sorry your post got buried. I promise you, we're a welcoming bunch here! I see you're from Lansing. I'm from Hartland, near Brighton/Howell! I can totally relate to going into overdrive after the dx. I did the same thing. And thanks so much for your kind words about my profile pic! 

    Couturehousewife - Welcome! I'm sorry you're still having pain, but glad you found our little group! I think your mom might be on to something regarding you being petite. I'm also petite and my PS said my anatomy was "pint sized" as well. And I have the same thing going on with a stitch. It's a little white thread poking out from my incision. I'm going to show it to my PS at my next appt, but my physical therapist told me to just leave it alone, that it'll work itself out. 

    Ganz - so glad your pain is slightly better. Hopefully this is the beginning of the end! I so hear you on getting these TE's out. I hope you can start fills soon. Keep us posted on how your appts go tomorrow! 

    Imhere - you are so sweet. Like you, I always try and respond to everyone, so I felt bad having to go before I caught up with all the posts. Thanks for having my back and thanks for being so incredibly supportive during my rib scare! 

    Gram - my fellow TNBC sister, great to hear from you! So glad to hear all is well and you're getting back into the swing of things. Keep us posted on how things are going. 

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited September 2014

    Ally !!!! Im so happy for you !!!! Sorry about all the exclamation points but Im realllly happy that your done with treatment. You are one of my favorites on here...your such a sweetheart and you don't deserve all this crap...none of us do ! I will let everyone know how tomorrow goes..fingers crossed that I can get my first fill :D

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  • ml143333
    ml143333 Member Posts: 658
    edited September 2014

    Ally - So glad that news was good!  You deserve to hear good news!  I'm glad you and your husband were able to celebrate your anniversary and have a good time.  Sometimes, that makes all the difference.

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited September 2014

    In the bag for Ally today, and for Ganz tomorrow!   XXX

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited September 2014

    Hey gals, 

    Just back from BS, he def doesn't have the best bedside manner, but he is skilled. He snipped my sutures and sent me on my way. Hurt like an SOB but whats a gal to do! Will ice and rest up, hoping the pain of pulling them subsides. Im gearing up to be in a 5 mile walk with my "team" on sunday, the Making strides walk here in boston. Should be a good time. I'm excited for my BF to meet the gals. Although the last time i did any exercise i think Clinton was in office. 

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited September 2014

    Those are BEEEAUUUUTIFUL words, Ally!!    ALL CLEAR!!!    Oh, what a relief!!    

    And the second most beautiful words are OFFICIALLY DONE with treatment!!   This big scare and all the associated stress is settled, and now you can finally really let that sink in and enjoy it!     Despite all its pain and grumbling, (and all those surgeries you have yet to affront!) your body is doing good!!!!!!!!!!!!!!!!!!    I like the idea of the special re-hab!     I sure hope that can help you deal with this muscle pain!    

    It's so nice to see a happy, relaxed post from you!

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited September 2014

    ALLY!  OMG!  All clear!  Somehow I just saw your message.  Hooray!  **dancing** I'm so happy!  Sounds like you have a good plan to get back to feeling good physically.  KNow how you feel about being thrown into menopause.

    So so happy!!

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited September 2014

    Ally- congratulations! Best news! Sending you good thoughts for the upcoming months! All the best!!! Will be here for continued support.

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited September 2014

    Ganzgirl, This is great news that the pain is really going away!    You scared it by threatening to sic the pain clinic guys on it!     I hope you really will be able to get that much wanted first fill, and I think that it is good that you have the pain clinic working for you, because those fills may not be fun, so the clinic can help you through it.    (But sure hope the pain is behind you and you just glide through these fills and onwards to progress!)

    Couturehw, Ouch.   sigh.     I hope after this yanking-induced increase in pain goes away it will start feeling better!     The walk sounds great!

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited September 2014

    Couture, I am right there with you regarding the snipping and the yanking with the sticking-out sutures.  Have done that numerous times.  Not too much ice, okay?  And wrap the ice pack in something.  My PS says ice can damage tissue and impede healing.  It's really better for muscles, alternating with heat. xxx

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  • Allydp
    Allydp Member Posts: 520
    edited September 2014

    Thanks so much, ladies!! Today is a good day!! 

    Couture - so glad your PS was able to take care of the stitch, but boo for the pain. Would love to see some pics of your walk. Good luck and have fun! Oh, and I second Bobo on being careful with the ice. Someone on another thread of mine accidentally forgot the ice pack was on her breast, since there's no feeling. She gave herself 2nd degree burns and is still healing. So yes, please be careful. Set a timer or something. :)

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited September 2014

    Thank you Imhere2 and bobo Happy


     

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  • Juliecc
    Juliecc Member Posts: 4,868
    edited September 2014

    Wonderful news, Ally!!!

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited September 2014

    Ally great news. I am so happy for you.

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited September 2014

    Ganzgirl-- How'd it go?

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited September 2014

    Got my first fill today..60 cc's in each side HappyHappy I feel great today ! Ps was overly accommidating  (sp) I couldn't feel when he was sticking the needle in or the fill while it was happening but Im feeling it now, mostly in my left side (cancer side) but nothing I cant handle. Pain clinic kinda laughed after reading my referral and said " Why are you even here ?" That doc says its all from the bmx..duh, no kidding really lol. She said there really wasnt anything they could do but did prescribe neurotin and tramadol and physical therapy. Not thrilled about pt but will do what they tell me. Im exhausted ...nap time :)

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    glad it went well!  Sleep well tonight!

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  • Imheretoo
    Imheretoo Member Posts: 217
    edited October 2014

    Ganz, Yay for making progress!    And most of all for feeling great!!    SO glad the fill didn't throw you back into big pain!!    The way the pain clinic people received you sounds frustrating, but it's good that they prescribed to you those drugs, and the PT sounds like a good idea, unless you find that the movements they make you do make the TE-associated pain come back instead of helping to alleviate it...    I hope that even though the clinic, (from the way it sounds by the doc responded to you) seems oriented towards dealing with pain of unknown or purely neurogenic origin, that the physical therapist he referred you to has  experience dealing with bc patients that have undergone mastectomy and have torture devices inserted under their muscles.      (I would imagine that the PT would, it's just that you seem uneager, so I was wondering if that's what you are concerned about.)     BTW, did you take the drugs they prescribed, (and that's what's helping you deal with the fill stretch?) or are you saving them just in case you have particularly intense times?

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014

    Imheretoo...I tried the neurotin last night idk if it helped or not. But at the very least I have it as back up. Im going to try going thru the day today without anything to see how the pain is on its own. As far as PT..Im not thrilled about it because Ive done pt in the past for other ailments and it NEVER helped, if anything, it made things worse, it was a waste of time and yes, I am petrified of that awful pain coming back. Im going to give it a shot just to be able to tell myself that Im doing everything that I can to alleviate any residual pain.

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  • angelfaith456
    angelfaith456 Member Posts: 83
    edited October 2014

    ganzgirl - I would try to head off the pain before it gets intense. Going without meds might bring you to your knees before you have time to take any meds. I always had pain the day after a fill. Also, don't forget ice to bring swelling down..I haven't had PT so I don't know if it helps or not..I just took time daily to stretch my arms up and down and out for a few minutes daily..It helped me..

    Good Luck!

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    I agree ganzgirl- you should take something before you're too far gone. It's been awhile since I was on neurotin- but I don't remember it being fact acting. I actually switched to gabpentin- which worked better for me.  Ice ice ice baby! Rest up! 

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  • cateyz2
    cateyz2 Member Posts: 419
    edited October 2014

    Ladies be careful with icing as since your nerves have been cut during mx and you have lost some feeling its very easy to get frostbite

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014

    Well ladies I chickened out lol. I didn't try going off the pain meds today. I knew I was going to have a busy day today and that is the worst day to try it. Im not sure about going without now, Im re thinking that. :) I am brave but not that brave lol

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  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Ganzgirl - take it at your own pace!

    I had my appointment with my MO today and I really like him a lot.  Leo went with me as my second set of ears.  So...my first chemo date is 10/17.  Although I am not looking forward to chemo, I am looking forward to getting this started so that I can get it over with.

    He said that overall, I am healthy except for this and that the only fly in the ointment is the oncotype of 23 which puts me in a grey area (which I already knew).  While he was in San Antonio for a national meeting, he talked with other MOs about my case and they overwhelmingly said they would recommend chemo to further reduce distant recurrence because I am still young (46).  He said if I was deadset against chemo that he would recommend tamoxifen and shutting down my ovarian production.  I told him that Leo and I had already discussed chemo and that if it would reduce my chances further, then we would do it.  I also asked what he would do if this was his wife or mother and he said he would do the chemo.  I asked him if chemo, tamoxifen and shutting down ovarian production is best.  He said there isn't enough data yet, but he wouldn't even think about that unless my condition was much worse.  I guess good to know.  :)

    So...he said I could do either TX (4 tx 3 weeks apart) or CMF (8 tx 3 weeks apart).  He recommended CMF for me for a few reasons.  He said number one, it would be easier on me if I am working while doing chemo (I am).  He also said for me at my young age (ha ha) that he would be more concerned about TX because of the possible serious long term side effects, primarily neuropathy.  He said he has been using CMF for patients like me for awhile and it has been going well.  I asked about the effectiveness of TX over CMF and he said they are just about the same but TX gets it done quicker.  He said most likely I won't lose my hair the CMF and other side effects are less.  He said still not a walk in the park and I am okay with that.

    I called my BS surgeon today to schedule port placement as it was suggested by her and my MO.  I confirmed that need today when I had blood drawn.  It took quite a few sticks because the veins weren't good and then when she did get it, the blood stopped and they had to start again.  I say save myself the headache of sticks every 3 weeks and get the port.  My BS said she would go through the MX scar and then there would be a small one for the port and she puts it low.

    I go for my chemo class on Monday afternoon.

    Any words of advice?


     

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014

    Ganz glad that you are not in pain.

    Ml sounds like you have a someone in your corner for a MO. I am not sure about the port, but I have never had one. Hopefully someone can give you the info that you need. Good luck with the chemo.

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    insert panic attack here!

    Got a call from DFCI this morning- and they had a cancelation! For tomorrow! My original appt is for nov 11 so I was happy to accept. ran around like a crazy person all afternoon collecting scans and slides and blah blah blahs. But the thing that is panicking me is that I thought I would have over a month to think about my questions and prepare myself. 

    Ladies-

    What questions should I ask before deciding to have a PFBMX.  

    Any specific questions from your personal experiences? 

    I hate it when I'm thrown off my game. 

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  • Sunflowercat
    Sunflowercat Member Posts: 177
    edited October 2014

    ganz - take it one day at a time and when you feel you are ready, then try.  

    ml - good luck with your chemo and the port.  I don't have one, so I have no words of advice, but I'm sure some of the ladies here will have lots of input and helpful tips.

    Couture - yay!  You got a quick appt, but I get not being prepared. That would totally freak you out. There are is a great surgery thread here https://community.breastcancer.org/forum/91/topic/699896. And if you want a list of questions to ask your BS and PS I made a list in this thread. My dad is a PS so I had some pretty high expectations and got spectacular results from my PS as far as my MX and pfbmx scars go. (My PS did a purse string vs linear closure) https://community.breastcancer.org/forum/91/topic/... Good luck at your appt.  

    Can you ladies smell that?!?  Yes, I got to take a shower today!  Whoo hoo!  I feel so fresh!!  Just for the record I left no hot water for anyone in my house!

    In other less exciting news I had my first fill yesterday of 60ccs.  Some little muscle spasms during and right after, but nothing a little IBU couldn't handle.  I also started sleeping in my own bed again two days ago.  I have missed my husband!  This morning I had my follow up with my MO whose only concern is my high BP. Finally!  A dr who gets that my super high BP and family history just might be an issue.  He is referring me to a cardiologist since I haven't had a reading below 150/109 since diagnosis.  It may all be coincidence, but my dad (super fit marathoner) has hereditary HBP and my moms family is a mess: 9/14 siblings have had heart attacks, my mom had a stroke at 54.  I do not want to go down that path.  I got an Rx for beta blocker and started that tonight.  I also got cleared for exercise and the first thing I did after that appt was haul home, change and go straight to the gym.  Hallelujah!  I have missed my gym time and all my gym friends.  (When I work out I'm more relaxed, sleep better AND I am a nicer person, wife and mom too!)

    Really weird note, but after my fill...I could feel my TEs sloshing on the walk through the parking lot.  So strange! Hope everyone is doing well and sleeps well tonight.  

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  • quiltlibrarian
    quiltlibrarian Member Posts: 174
    edited October 2014

    Couture good luck with your appointment.

    Sunflower whoo hoo a shower and exercise and a fill. Wow lots of firsts. 

    I am going back to work on Monday for 4 hours. I am excited to see my coworkers again. They have been so supportive since this all started.

    Hugs all 

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