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Unilateral mastectomy & reconstruction

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Comments

  • Frostecat
    Frostecat Member Posts: 223
    edited July 2014

    Monis - sounds like everything went well for you.  Now on to healing!

  • Unknown
    edited July 2014

    hi everyone,,,, went to my appt yesterday and the breast healing is going along very well,,,, had my stitches removed , still swollen some but to be expected,,,,next appt in 2 weeks! Kind of sore today as there is no dressing on my breast,,I to am hoping to be done this year myself,,,,if everything goes as planned (keeping everything crossed) I should only need 1 more surgery 👍, I am opting for the 3D tattoo myself, read to many posts on necrosis of nipple, infection, so I don't want to take that chance,,,,
    Monis,' sounds great, good luck with the healing

  • stepmic
    stepmic Member Posts: 67
    edited August 2014

    Frostecat , I am a uni and had TE then implant with reduction and lift on January 9 th of this year (mastectomy was June 2012). I love my result with match and am so glad to not have to do microbead foob sewn in bathing suit this summer or huge prosthesis. I have photos on the picture site if you want to check them out (stepmic). I am meeting with PS next week to talk about nipple recon. I didn't think I would be up for a 4th surgery but now I am and think I will go that route over 3d tattoo!

    Hang in there!

    Also a word of encouragement to anyone else out there needing it! It is a journey indeed!

    Karen

  • stepmic
    stepmic Member Posts: 67
    edited August 2014

    really happy to have found this new thread!

    I haven't been on for quite awhile.

  • Unknown
    edited August 2014

    good afternoon everyone,,,,, seems that I am BACK on antibiotics again,,,, this is a never ending cycle and I just want it to stop!!!!. had a minor meltdown this morning,,, seems that the bottom incision from my lift. where it gathers together under breast is getting infected, PS said this is common,,,,(, common for whom.... I am learning as I go)... wish they would give us heads up so we dont panic.. I thought i was going to need an emergency surgery,,,so i kind of freaked out....he put me back  on Bactrin, some silver something cream, have to pick up from drug store... when does this stop?????????

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Karen thanks for the words of encouragement - it's so good to hear you are happy with your results.  If you've read any of my posts, you know that I have been totally having buyers remorse.  There are so few of us UNI's and I kept wondering if I did the wrong thing.  I hope some day I will be able to say that I am as pleased as you.  I actually just realized that I did see your pics - you look great!  I actually commented on them on the picture board.  You are definitely giving me hope!

    Jeanie - just when you were going along so great - darn it!!  Do as the Dr. orders and use your creams and get that infection cleared up - hopefully in no time!

  • islandmom
    islandmom Member Posts: 131
    edited August 2014

    In the early days, I wondered if I should have gotten a BMX instead of a UMX.  However, as my life has come back to a more normal pace, I can say that I very happy with my decision.  The MX side is there, but since it does not really function, it is just for show.  I would feel a little sad if I did not have my "feeling" breast.  

    We are all different as to what we value or consider important, so it is a personal preference.   Even with the revision (needed because of weight loss),  a BMX would have avoided that.     

  • Unknown
    edited August 2014

    thanks Frostecat. soooooo discouraging.....  pretty sure I will wind up with some kind of "emergency> care,,,,,, before this is said and done,,,,when i think I am getting close to the end,,,, WHAM!!!!,,,,,, it throws another curve ball in,,,,, I try to stay positive and I think I have been doing good, but sometimes it is more than I can handle....... this toooo shall pass. tomorrow is a new day,,,,,, healthy healing and hugz to all...J

  • aff
    aff Member Posts: 33
    edited August 2014

    Jeanie - I'm so sorry. Sending positive healing thoughts your way. I hope the new creams work their magic. 

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Island Mom - that sounds encouraging, thanks.

    Bosom - No I have not had exchange yet, that is coming 9/9, so I guess right now I am at the worst of it.  Natural side seems like it is hanging to my waist compared to the other one which feels like it is right under my chin!  With it being summer time too, it's not so easy to camouflage.  I have to wear a support bra, which is uncomfortable on the UMX side.  If I had just gone with the BMX, I could have gone braless this summer!  (that would have been a first time ever).  I'm trying to be patient, although it is difficult now.  

    This too shall pass . . . .

  • stepmic
    stepmic Member Posts: 67
    edited August 2014

    Hang in there, Jeanie!

    Island Mom, the way you expressed your thoughts is exactly the way I feel. Thank you for putting it so clearly. 

    Frostecat, do you have a  microbead foob? I loved mine! 

    K

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Stepmic, no I don't have a microbead foob, I just have a "pouf".  Can't use it in a bathing suit, it is filled with cotton and would get soaking wet.  It works well with clothes however.  I have a halter type bathing suit and it seems to be okay, but I'm in the final stretch now, so I'm not going to be purchasing anything new at this point.  I actually haven't been in a bathing suit that much this year, I've been trying to avoid that as much as I can, at least in front of other people.

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    I have a question, how long were you all off of work after exchange and lift/reduction?  I notice a lot of people with just the exchange are back to work after about 10 days, but I thought my Dr. said 4 - 6 weeks.  That seems like a long time, but I didn't know how much the lift/reduction factored into this.

  • Sparkle2014
    Sparkle2014 Member Posts: 83
    edited August 2014


    I am wondering the same question - i think a Mastectomy quite honestly they say 6 wks to heal - I am not healed after 6 weeks,,,  i would say more like 3 months and a second surgery - i have feeling will be more like 6 weeks min.  you will be operated on - on BOTH sides this time - even though left is just a lift - still a surgery and site to heal and keep from infection and painful to use now both sides of body as stitches heal etc...  I had a skin growth removed on chest twice - two separate yrs and each one took 5 wks or so just before I felt better,,,,  I think they say 2 weeks but is lot longer!  give yourself plenty of room to heal as you don't want to cause damage when this is a really important part of your treatment - you want it to be successful and to be happy with outcome too :)

     

    I have Right breast removed 6 wks ago and still hurts so much and just now trying to not take pain meds (as I believe they are allowing me to do too much lifting and over using the right arm  and making area much more inflamed vs feeling the pain and doing less and resting more so it heals - when don't take anything and I FEEL what the pain level is - it is quite awful, throbbing and burning pain and prickly feeling in the expander pocket - that was just filled first time 60 cc 10 days ago and that made pain >.

     

    I am NOT SLEEPING well at all - have really bad insomnia - - this whole diagnosis came out of blue as shock, it is very scary - it is also quite overwhelming - so depressing to think about it coming back and depresses me to think another new cancer could appear in LEFT or elsewhere (in bone, brain, liver or BONES etc..) and just hit me harder past few weeks...

     

    wondering first before anything else if should consider SSRI (to reduce my anxiety, maybe help me sleep and sort of take edge off all the feelings experiencing post surgery - about the next steps, recovery pain, second surgery & lift, not working and when will return, financial worry, long term worry about recurrence issues, future health concerns about managing Side Effects of Meds (I am not usually someone who takes anything,,,  [had taken smallest dose Zoloft prior to surgery for bad PMS/mood swings and anxiety, tearfulness, a bit of the OCD and long term high anxiety/worry that gets to me] - wonder if taking that up again would be helpful and then get calmer and then maybe able to begin taking the Tamoxifen

     

    I don't want to take the TX - honestly - my recurrence score is 9%..  (thankful!) but ONC DR wants me to TRY it - I know they tell everyone premenopausal to take it,,  worried if take it about SEs and worried about if not take it, recurrence and being worse off long term.... ??? 

     

    lots on mind - the second surgery is another I am unsure of - another recovery period is not too fun to look forward to either when first surgery was quite awful...  looking for other responses to your orig ???  about recovery time and how people feel after.. thanks so much

  • Sparkle2014
    Sparkle2014 Member Posts: 83
    edited August 2014

    I am in same boat - one side hanging so low - other perky - 6 weeks post Mastectomy for me - this is not an easy surgery to heal from but it could be worse...  let us know how you second surgery goes - curious to hear how long recovery time will be and how you do having the swap out and lift same day.. thanks and good luck with feeling well..

  • Sparkle2014
    Sparkle2014 Member Posts: 83
    edited August 2014

    Hi - I may do a tattoo as well on Right - maybe a gerber daisy flower or some outline pretty something vs nipple - so not into more surgeries and a fake nipple may feel/look odd to me personally,,,  wonder how you doing on Tamoxifen- I need to start it - I am similar diagnosis as you - stage 1, grade 1 IDC, no nodes, no chemo - mastectomy one side (right)..  it is hard in so many ways to deal with the diagnosis, treatment, tests, reconstruction, work, life and sleep and pain mgmt.,,,  I wish this all could go faster and healing too would be faster..  I look forward to hearing how you did starting TX and any SEs??  if you have time to post back, thank you and best wishes in your recovery, :) 

  • Unknown
    edited August 2014

    Sparkle,,,, boy did you hit everything on the head in your post,,,, like you read my mind,,, I am fortunate that my DH has a great job cause I have stopped working since my UBX in Dec, 2013! I just had my lift on the 17th of July and I am having issues with the incision, doesn't look good , have appt in the morning,,it just seems like it never ends,,, I was hoping on one last surgery after the lift, but not sure now,, overall my breasts look great nd I am happy with the outcome, I have bad joint pains in my knees that started with the arimidex, I also cannot sleep, I wish someone had ALL of the answers for us,,, WHERE THE HELL IS THIS DAMMED CURE?????????    Hugz to all,,,,, J we have the same Dx, no chemo, rad, thank god,  I finally believe when someone told me it would be a full year to be completed with surgeries, it is sure looking this way between healing and any complications, and recon ,,, hang in there

  • aff
    aff Member Posts: 33
    edited August 2014

    Jeanie - hope your appointment goes well tomorrow. 

    I am in the middle of rads now. PS says no revisions for 6 months after rads which means surgery will into 2015. When this all started in Oct of 2013 with my first visit to my gyno I never imagined I would still be under construction in 2015. I'm ready to be happy with what I have and be done. Not sure I can mentally handle more surgery but we'll see. I never thought I could get through all that I already have.

    Sparkle - I started Tamoxifen last Tuesday. The first night was a bit crazy. I felt like I had wild, weird dreams all night. The last few nights have been ok other than I wake up every few hours with intense hot flashes. No other issues and no issues with hot flashes all day. 

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Sparkle, everything you say, is everything we have all felt.  Well, I guess I shouldn't speak for everyone, but definitely for me.  I'm surprised you are still in so much pain at 6 weeks.  I was ready to go back to work then (desk job), but wasn't able to get clearance from my PS who was out of town until my 7th week.  I was definitely off of the pain meds by then.  I was filled at 300cc's at surgery, then received about 100cc once a month.  With those I sometimes took valium, but I didn't really feel it helped all that much.  Quite frankly I think a couple of glasses of wine worked better ;-)

    As far as the tamoxifen the first couple of weeks I took it I was having muscle cramps in my legs, like if I was riding in a car for say a half hour or more, I needed to get out and stretch my legs, they felt very crampy.  I really think my only other major side effect is hot flashes.  I usually take my pill at night, so sometimes they are just horrible.  If I kick off the covers I am freezing, if I put them back on I feel like I am going to spontaneous combust! The hot flashes for me are the worst side effect (so far).  

    Check with your Dr., since you were taking something before all of this mess, you might even need something more now to help you deal with this.  It is an anxiety filled journey for sure.

  • aff
    aff Member Posts: 33
    edited August 2014

    I had my very large family over for my daughter's birthday today. I definitely overdid it and thought that my aches were due to that. After sitting on the couch to rest for a couple hours my ankles hurt so badly when I stood up that I could barely take a step. I now wonder how much of that is overdoing it or Tamoxifen. I know bone pain is common for the first couple weeks. I'll keep you posted. 

  • Sparkle2014
    Sparkle2014 Member Posts: 83
    edited August 2014

    thank you for posting FROSTECAT - - my DX is very similar to yours - except I have high anxiety!!!  I wish I had a calmer mind though. 

    I am 42 yrs old (the BRCA2 gene test I had returned that I fall into the UNCERTAIN category - 15% people fall into that) and my oncatype is 9 % - I wonder if my Breast Cancer began because I have the BRCA2 uncertain gene and more prone to producing tumors or that since I have very dense breasts and have had lots bad PMS my entire life that my hormones and estrogen is just naturally high in my body...  ?  and I have to come clean - I smoked cigs for 15 yrs - maybe started a pack a month then year after year - up to 4 to 5 packs week..  but I quit in 2007 - I now wonder if that was what started the cancer...  in 2007, I had my first Mammo and it appeared abnormal and head of radiology at hospital did the stereotactic biopsy on my RIGHT BREAST and said ok false alarm - and now 7 years later - the tumors they found that were Invasive Ductal Carcinoma were in that SAME location!!!!  so I do have to wonder - in 2007, did he miss the cells he was TRYING to remove to test them and said ok false alarm - they may have been DCIS...  and then every follow up since - maybe the mammo missed it or perhaps it is just coincidence that the tumors they found in May 2014 were in same 11:30/12pm location on my breast - same 3 mm deep area...  I have a feeling that they were there in 2013 when I had my Mammo & Ultrasound done - however later in 2013, my radiology place got all the new 3D equipment in and this is why I believe that the tumors showed up and then was asked to get two biopsies again that resulted in the news!  but thankfully they were growing very slow.  my point is that I have been monitored since 2007 - I do find it unclear as to if the Tamoxifen will really reduce the chance of cancer - I am skeptical...  I just wonder if I would be fine not taking it..  but I know it is a risk to not take it then if you get a recurrence - kick yourself for not taking it!

    I read that never having children increases risk of getting BC - and I always wanted lots kids but somehow that never happened and now I just want the husband and a couple of cute cats and to be a good Aunt and hopefully that all will come true after I get through this all.

    I think my pain is lingering still,  as I had a completely frozen shoulder in 2006 that took till 2008 to finally become more manageable - it was completely frozen - and it was terrible as I also fell down icy steps the winter that I was starting Phy Therapy for it and landed on it and my hip and back and lots of issues stemmed from that - but the right shoulder and joint never fully healed so the MX on Right breast and incision under armpit in a bad joint to begin with,,,  I think is why I am still feeling more pain then most women 6 wks post surgery. 

    and I was maybe over doing things - 5 days post MX,  I was on my vicodin and feeling good and no pain and vacuumed and cleaned and did lots lifting, folding laundry and stuff - it felt so good to be doing things again - but i think that was the vicodin masking the actually pain that allowed me to sort of do things I was not supposed to be doing for 3 - 4 weeks, as I naturally usually like to be busy and productive - I should have been on the valium with the vicodin so I would have been more comfortable just lying around not doing anything but I was afraid of taking both vicodin 5 and another pill (Valium)..

    my counselor and my PS told me I could try taking the Valium to get to sleep vs being up all full of racing thoughts and not able to turn it off - I always had sleep problems and just past 7/8 yrs ago, I stopped running due to shoulder and that was what kept my anxiety in check,  so i got anxiety issues really bad, so I do believe I will need to be on Zoloft [or Lexapro] daily to get my mood and thoughts going along more positive lines vs feeling so tearful and upset and worried over this diagnosis and knowing I have many things that in years ahead I will need to deal with and hope nothing recurs - like all of us!! 

    maybe I should give the valium a try tonight just to see if it will help me go get to sleep ,, I never ever took it - not sure what will feel - I have taken Xanax previously at .25 mg and that was fine - such a small dose, it took the edge off but didn't really put me to sleep - they said valium would be better vs Xanax for it relaxes the tense muscles and relieves anxiety...

     

    and AFF - you could be right, the Tamoxifen maybe causing the ankle pains - if I were you I would make a point to elevate your legs when you do get time to sit - and get a couple spare pillows and when you sleep in bed I would elevate the ankles even if sleeping on stomach or side - keep the feet up a few inches - are you close to the NJ shore - another great thing for circulation is walking in the edge of the ocean and feet in the salt water (earthing!) and walking a bit in the sand - the energy from the earth is very healing to the body! 

    I am in CT along shore and I just started doing that again a couple times week as I build up my strength again and walking up hills - to get the blood flowing and oxygen through my body - it helps my mood too but it is quite a workout! 

    I do hope that the pain and aches will go away for you.

    I also hope that you don't experience any new SEs on it either - and hope that you and your daughter had a great time together at her birthday - are you in your 40's too?  I only know one friend who has BC in CT and she has 4 kids - and she is a nurse in Greenwich and she removed one last year as they found DCIS close to margins and Left was fine and then at her follow up - they found DCIS appeared on other side so she went through the MX on that a few months ago...  and reconstruction now almost done on her second side - and she is so calm and strong - I wish I knew more women in early 40's or 40's nearby here in CT that would "GET IT" - my oldest friends have no clue and say things that make me feel like I have to defend myself for having pain or having worry about taking Tamoxifen or worried about not knowing what the next 4 to 6 months are going to feel or be like - -  so I do appreciate all of your advice and replies as I am not able to ask things of these friends whom I have had for over 30 years and my Mother also has no idea what to make of it all - as she never ever had one health thing besides anxiety to deal with //

    I have met really wonderful people though since the DX and people like my neighbor told me if I ever need anything to feel free to ask her,,,  and my family here in CT has kept me going and I am very lucky that I am not alone and that makes a huge difference  -  I really do give extra praise to the women who battle through all of this alone - - and extra praise to the nurses and DRs who work in the Breast Surgery, Recovery field - they are very strong and it takes someone with an enormous heart to work in the Medical Field to help others..  so it has been eye opening to witness first hand how skilled and caring everyone here I have encountered has been - at least I feel I am in good area with great care close by.

    and if you both are not aware - some areas have the Center for Survivorship (any cancer survivors can go) - the center here is 15 mins away and has yoga, nutrition class, fitness room, meditation, survivor walks, pilates, cycling etc...  ) only $75 for 6 months and first month is trial and free - they have them across country and I stumbled upon it on way to Plastic Surgeon office - I am excited to begin going there soon - after I get better sleep and less pain - good way to meet other cancer survivors and those locally who understand it all... I don't know where you all live but you may find one close to your area if you google CENTER FOR SURVIVALSHIP AND YOUR COUNTY OR STATE /// 

    thank you girls for helping me - even a few lines helps me!  and is so greatly appreciated.  G NITE!

     


     

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Sparkle, I'm at work right now, so I can't write too long, but did want to answer you.  I too was/am a smoker.  I am not a heavy smoker, but I am none the less.  I quit for a month prior to surgery, but it crept back into my life again.  Now I know I need to stop again for the next surgery, hopefully this time it will stick.  I realize smoking is not good for any type of cancer, my BS wants to me to cut out smoking and drinking, but for me that is proving to be difficult, as it is a part of my lifestyle that I enjoy.  So it has been a struggle to do the right thing.  My mother had breast cancer and never smoked a day in her life, nor was she a drinker.  So many other women you read about are total health fanatics and still get breast cancer.  Take Samantha Harris, that girl just makes me tired reading her posts! And there are plenty more like her.  Personally, I think it's a crapshoot.  1 in 8 women will get this, and I guess we are the "lucky" ones.

    I like you, had several "call backs" through the years on the same breast that they found the cancer.  Same spot, just like you.  I have very dense breasts also.  So yes, I have to wonder if it has been there lurking for years and it was missed?  I asked my MO about this, and he said that the tumor could have been there for 2 - 11 years - I was shocked to hear that.  But I also received a chart showing the size of growth over the years.  It showed the actual size of a tumor and how it grows, I couldn't find it online but maybe this will help explain:

    image

    I sometimes think "I had that cancer in my body for that many years and had no clue!"  This is a strange disease, right up until my surgery, I kept saying that I can't believe I have to go through with this - I feel fine.  Isn't surgery something to usually make you feel better?

    It sounds like you may have overdone things - there is a saying on these boards "just because you think you can doesn't mean you should" and are good words to live by during this time.  

    Glad you found these boards, there are some great ladies on here and have been a huge support to me through all of this.  It greatly helped me along the way.

  • Unknown
    edited August 2014

    dr. appt went well,, not infected,,,thank god, just a hard to heal place, they want you to wear a bra to hold the "girls" in place, but that is where I am trying to heal- doesn't make any sense, well none of this makes ant sense,,,,,I have to make appt with dermatologist soon and get a few skin tags taken off, scared to death that I will hear the big C word now with any and all results in my future,,,,my bones soooo hurt today,,, think I might stay in bed most of the day,    Hope everyone is having a great day,, hugz to all.... J

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    Hope you are feeling better Jeanie - take care!

  • stepmic
    stepmic Member Posts: 67
    edited August 2014

    Sorry for the delay in getting back and answering questions.

    For time off, well for my mastectomy, I had in on June 8, 2012 and was off until I went back to work on August 26th as I am a teacher. It took me quite a while to get my head around the whole thing although I healed quite well. But then I had to wait for my oncotype results on two tumour samples and all that.

    For my implant and reduction/lift surgery in January, I was off for two weeks plus two days. I had the surgery on a Thursday so the two days of that week then two full weeks and it worked out perfectly for me. I was totally wiped when I got back to work and probably could have taken one more. I was in a lot of pain for a full week especially on my reduction/lift side. The implant side didn't bother me that much. The healing was uneventful, fortunately no infections. I hated the sponge baths for two weeks until the bandages came off. I think that a few months as your PS recommends, Frostecat, is a long time. We all heal differently and feel pain differently so really do what you think will work best for you.

    For anyone who is still struggling with clothes there is a website called mastectomy solutions where Mary sells microbead foobs for about $30 for a pair. They were my saving grace for a year and a half. I let the beads out when I was getting filled last summer and it worked perfectly. I sewed one into a bathing suit as they can get wet and don't change. I loved them. I also had a huge heavy size 13 prosthesis which I hated.

    I am on Arimidex and am just finishing my second full year. At first I had insomnia pretty bad and still do at times. I have numbness in my fingers and tingling a lot but it comes and goes and I have learned to ignore it. Other than that I feel pretty good. I try to walk most days for a half an hour and that helps my joints. I have gained weight and can't seem to lose it but I try not to blame that on the Arimidex but rather on my lack of self control, lol.

    Hope this helps a bit. To those of you who are discouraged, I have been there too. It will get better... really.

    Now I mostly forget that I have an implant and feel good. It has been a journey! And yes, I only wish they would find a cure for this!!!

    K

  • Frostecat
    Frostecat Member Posts: 223
    edited August 2014

    That is so great to hear Stepmic.  It all sounds so encouraging!  I just got off the phone with my PS office, and I asked her once again how long they expect me to be off of work and she said "we say 4-6 weeks, but most people go back sooner".  I think they like to give you the time if you need it on your medical release.

  • stepmic
    stepmic Member Posts: 67
    edited August 2014

    Yes, maybe better to have the time booked from the beginning depending on where you work. Best of luck to you with your surgery in September. I will be away in Italy when you have it but will check in when we are back. After my breast cancer experience I am much more willing to go now on trips like this. It is our 25th anniversary so we are doing a big trip to celebrate. I am 57 this November and I have learned that you never know what the future brings. So if you can do something then do it now.

    I go to my PS on Friday for nipple chat.. that should be interesting.

    K

  • Unknown
    edited August 2014

    good luck stepmic on Friday, let me know how that goes as I also have not made a decision on the whole nipple thing either, I have 2 more surgeries before we get to that part, but a little heads up would be great,:)). I am 57 also and I am going to do what you said,,,, do not wait if you can do things now, cause you never know,,,, have fun and try not to think about this whole ordeal while you are there if you can,,,, sounds like a great trip, hugz and healing to all .... J

  • scubalady
    scubalady Member Posts: 49
    edited August 2014

    Stepmic, my husband and I had been starting to plan an Italy trip for this fall when I was diagnosed, so we're moving ours to next fall.  Are you doing a tour or arranging everything on your own?

  • Sparkle2014
    Sparkle2014 Member Posts: 83
    edited August 2014

    Ladies - calvin klein concept bra - seemless pullover stretch is only one so far that I can tolerate for about 5 hrs..  and sometimes the Kohls "Barely There" seemless - they have a lot there and online - no wires and stretch and better made than genie bra.  and Gap has lots cotton bralettes in gap body line too.  it is a challenge when one is fake and in pain and healing and other is normal..