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Mastectomy Sept 2011

MargieC
MargieC Member Posts: 302

Surgery dates

olgah34  --  9/1  --  DMX

diana123 -- 9/6 --  UMX

chefmom - 9/6 --

exbrnxgrl      --- 9/7 -- BMX

stjude10      ---  9/7  --MX

babycakes  --  9/7  -- BMX

monse812 -- 9/8 -- MX

groovygirls --- 9/12  --  BMX

TML  --  9/12  --  BMX

odie16 -- 9/13 -- BMX NS/SS

KaheW  --  9/14 --  UMX

Tappy --  9/14 --  BMX

Jenn - 9/14 --  MX with immediate DIEP reconstruction

TracieN  --  9/15  --  BMX 

silia  --  9/15  --  BMX

aquaclara -- 9/16

amylynn    --- 9/16 -- BMX

Jazz3000  --  9/16

luanneo  -  9/16 -- UMX

saolsenberg -- 9/19  --  BMX

dancetrance --  9/20 - BMX

chonikel  --  9/20 --

jucar  --  9/21 --  MX

Therese --  9/22  -  BMX nipple sparing

hope2011  --  9/27

Lisa Wade --  9/26 --  BMX

JoannaT -- 9/29  -  BMX reconstruction

Sue --  9/29 -- BMX 

donnad333 - 9/29 -- BMX

bbbsmom - 9/30 - DMX

bayareamom - 9/30 - BMX

Linda n3ypb - 10/3 - BMX

margiec   --- 10/4  --  BMX reconstruction

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Comments

  • amylynn1108
    amylynn1108 Member Posts: 10

    Hi Margie,

     I am having a double mastectomy with immediate reconstruction on Sept 16. I was diagnosed on March 23 and finished chemo on July 27. I am very nervous about surgery.

  • MargieC
    MargieC Member Posts: 302

    Hi AmyLynn,

    I know what you mean I am more afraid of the surgery then I was chemo.  I will be done with Chemo Aug 29 and then have my surgery hopefully week of Sept 26.  I am doing the same as you double mastectomy with immediate reconstruction.  Right now my Dr don't think I will need radiation, but they will make the final decision once they do my node biospy after surgery.

    From what my Dr say surgery is so much easier then chemo - so that being said we have both been through the hardest part :)

  • amylynn1108
    amylynn1108 Member Posts: 10

    I was told the same thing about radiation. We have a very similar situation, I too have two spots of IDC and the rest is DCIS, I was told the entire area is around 6cm. I am nervous about being put under after being on Herceptin, I have heard so many things about that medicine. I guess the docs know what they are doing.

     I have been told that the surgery will be a walk in the park compared to the chemo, I have a hard time believing that Wink, hopefully that is the case though, that means the worst will be behind us.

  • MargieC
    MargieC Member Posts: 302

    Hmmm  I hadnt read anything Herceptin and surgery.  I guess I will be doing some more research.

    Have a good day.

  • amylynn1108
    amylynn1108 Member Posts: 10

    I am just a worrier, the medicine is perfectly safe. I am reffering to the heart function that Herceptin can decrease. It freaks me out. Don't be alarmed.

  • MargieC
    MargieC Member Posts: 302

    I am a worrier too.  Yea the heart issues do hang in the back of the mind.

    I got my surgery date yesterday.  They were talking end Sept (4 weeks after last TCH), but I am scheduled for Oct 4 - took an extra week to find a date that both oncology surgeon and plastic surgeon and operating room all available.

    I found this web site you might find these useful http://www.pink-pockets.com they are drain pockets that you can stick to the inside of your clothes.  I bought a 5 pair package.

    Another thing I read that I thought was a good idea is start taking a stool softener daily 3 days prior to surgery to help with the constipation that surgery will cause.  I plan to do this since that is the main side effect I have had with chemo.

  • amylynn1108
    amylynn1108 Member Posts: 10

    Very good advice! October 4, is a great day, that is my son's b-day! He will be 4 this year, so I think that is a good sign for you. I have never had any operation before or had general anesthia, so I, of course, am super freaked out. How many chemo treatments do you have left? I finished 1 week ago today, not sure if you had any side effects from the chemo but I was down for a week each time, the very last treatment, mine was delayed a week due to low platelets, was a walk in the park. No side effects nothing, I hope this happens for you as well. Pretty sure it was more of a mind game. Have you met with your plastic suregon yet? I don't see mine until August 25, I get my first post chemo MRI on Friday, nervous. I don't fully understand how the reconstruct immediately.

  • MargieC
    MargieC Member Posts: 302

    I have two chemo treatments left Aug 8 and 29.  I have done pretty good with them so far.  My worst side effects some constipation/diarrhea and the last one I have started having fatigue.  I have been working full time (I work from my home - computer based job).  I have also been able to keep up my hubby job - teaching Pilates and water aerobics two days per week.

    My last surgery was when I was 8 years old and had my tonsils out.  The surgery has been the scariest part for me just because I don't know what to expect.  Sept is going to be a long month waiting to have my surgery.

    I have only had my consult with the PS.  I see my BS Aug 26 and I am waiting to here when the PS appointment will be. 

    The MRI will be good you will see what's still in there.  My BS nurse told me yesterday that they would only be doing a mammogram on me, but when I see the BS Aug 26 I am going to ask for an MRI.  The mammogram didn't show the majority of my cancer that the MRI did. 

    too funny - I am having my surgery on your son's bday and you are having yours on my husband's.  Both really good day!!

    A couple post surgery things I was told by a survivor thought I would share.  Get some cami's that you can step into and pull up (i got some at Kohls really cheap since they are having their summer clearance), have some old button up shirts or zip front hoddies and yoga pants to lay around in.  Plan on sleeping the first week in a recliner.

    We will make it through with flying colors. 

  • Hi ladies - was just trolling here and thinking I'd start a Sept. group but you two beat me to it! I'm scheduled for a BMX on Sept. 19th. For me, this is round II with cancer - I was first dx'd in '01 with stage 1 IDC and had 3 lumpectomies (all in the same spot, to get clean margins), A/C, rads and then did 5 years of Tamoxifen. Fast forward 9.5 years later and on June 6, '11 I was dx'd with DCIS in my other breast - via core needle biopsy, so we're hoping that's all that's there. Because there's a lot of funky high-grade hyperplasia in that breast, and because clearly there is something about me that loves to make BC, I'm doing a nipple-sparing BMX with immediate reconstruction (saline implants + alloderm).

    We scheduled for 9/19 so my daughter would be back at school - Margie, your tips are great. I've been buying things this week to get ready. I have been very freaked out about the major nature of this surgery, but an oncology social worker friend I met w/earlier this week pointed out that I'm remembering the year-long saga of treatment w/chemo, etc. and this would likely be much, much easier. She's seen literally hundreds of women, so you guys should listen to this too! It's a lot longer road to do it all together, though, I realize. I had a break, at least (grrrr).

    Looking forward to gritting teeth and getting thru this with good company! 

  • stjude10
    stjude10 Member Posts: 230

    I am scheduled for MX (hope that's correct, still new) first week of Sept. with recon. Just waiting for the exact date. Should be getting the genetics test this week to see if we will go ahead w/a double. Is it weird to have the surgery before any treatment? My team has told me that I will do this first, then meet w/oncologist to determine treatment and start hormone therapy.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Hi All, I am scheduled for a BMX on September 7th. Left breast has DCIS and IDC. Both appear to be early stage low grade. Right breast has some micro-calcifications and I have opted for a bi-lateral because I don't want to do this again. My emotional peace of mind is worth more than a breast. I am having immediate reconstruction. May be one step or TE's. My PS will make the call during surgery. I am currently a small C and want to stay that way. My biggest source of anxiety is that when surgery is performed, things will be worse than the biopsies and films revealed. I am also a bit anxious about what treatment I might need afterwards. Trying to keep busy with preparing my home and lifestyle for the post surgery period. Also, I am a teacher so I am getting my classroom ready. I will have 2 1/2 weeks with my students before surgery. Found out yesterday that I will have a student teacher who will also function as my sub when I'm out. She has been a sub in my district for many years, a former parent at my school and is now finishing up her teaching credential. I am very happy about this and it takes a lot of work related worry off my shoulders. Best wishes to all of you. -Caryn

  • groovygirls
    groovygirls Member Posts: 100

    I am scheduled for a bmx 9/12/11. Diagnosed 7/6/11 but delayed appointments due to prescheduled vacations (thank God we went away!) BS wanted to wait for BRCA testing to come back prior to mastectomies plus there is a PS she really likes and we needed to coordinate all that. Gives me time to get things ready- looking forward to the next steps. Hoping to have immediate reconstruction that day but I am still unsure of what type of recon I want.

  • groovygirls
    groovygirls Member Posts: 100

    Stjude- they need to see exactly what kind of tumor/cancer you have. The most accurate is when they remove it during surgery plus the SNB. Usually see oncology after surgery

  • charlee114
    charlee114 Member Posts: 2

    Ladies...it will be ok...I had my bilateral mastectomy on Dec.20th..a day after my husband and I had our wedding.  Surprisingly it didn't hurt that bad at all.  I was out shopping just a couple days later.  The only thing I could really complain about were the awful drain tubes shaped like eggs hanging down on your sides...trying to hide them was difficult but a button up shirt worked ok for me.  It takes some getting used to..to look down and see a part of you missing..the part that we associate with our womanhood...but remember that is not what makes us who we are!!!! I am going thru reconstruction and due to infection my left expander had to be removed. I go in next Monday to have my right one replaced with the implant and hopefully by the end of fall can begin to have my left expander put back in.  This surgery is very painful...more so than the mastectomy itself.  Taking something off is much easier on the body then adding something that isn't suppose to be there...I don't regret my choice..I just wish I would have given my body more time to heal after the mastectomy before I started the reconstruction.  I just want you to know as far as the pain goes...it is a breeze..I only took pain meds for a day then went to tylenol...each of us are different but I've spoken to several women and all have said the same thing about their mastectomy...it didn't hurt nearly as bad as they thought it would.  Good luck to each of you...and may you all have safe and painfree surgeries!!!

  • Hi Stjude - like groovygirls said, the most accurate pathology comes from analyzing the tissue removed at mastectomy. Depending on what sort of biopsy you had done and what imaging results might be, they may or may not do chemo before a mastectomy, but more often I hear afterwards. I for instance, have been told I have DCIS, but that there is a lot of other stuff going on in my right breast, including the potential for some invasive cancer. We won't know for sure 'til I have my BMX, so fingers are crossed. Because I only had a MR-assisted core biopsy, we didn't get a good sample. They'll get that w/the MXs!

    Charlee - thanks for the reassurance - I hope you're right. Everyone is different, but I have heard from several women, even those who had immediate reconstruction, that the pain wasn't too bad.

    All - I feel like I turned that corner where I need to get this done ASAP! I'm totally freaked out about it, but am so tired of waiting and planning and freaking. Just want to get underway and I'll deal with whatever happens as it comes. Same thing happened to me last time I had BC and was waiting for chemo - was so afraid of it it made me sick to my stomach, but finally just got so ready to take the plunge. And while I wouldn't want to do it ever again, it really was not as bad as I'd anticipated. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Agreed! The waiting is the worst part. I might not have mentioned this but my younger sister passed away in Feb.'11 after a short but horrendous battle with uterine cancer. My family was still reeling from her death when I was diagnosed. My parents are very anxious and keep asking why there is so much waiting. They were not happy when I said that some of the delay was caused by having to coordinate schedules of both surgeons. In that case, they thought I should have just had the BMX and worry about reconstruction later. They are in their 80's and can't bear the thought of losing another child. I know I didn't do this on purpose but it hurts me to know that I am causing them more grief. I live in CA and they live in NJ. They had come to CA for my younger daughter's engagement party when I told them the news. I am glad I was able to tell them in person. Thankfully, my older daughter announced her pregnancy so that helped us all feel better! -Caryn

  • MargieC
    MargieC Member Posts: 302

    STJude -- surgery first or chemo first really depends on a lot of things.  My BS and I talked about doing it either way and based on my having multiple areas of IDC and being HER2 positive we opted to do the chemo first. In going through this process I have learned there are so many different forms of breast cancer.  My advise is find a BS that you really like and trust and go with what they feel is best for you.

    Charlee114 -- thanks for your feedback on your experience. I am hoping my surgery goes as easy as my chemo has been.

    All ladies...  tonight I am going to a support group that they are having a guest speaker - physical therapist to talk about what to do and expect after surgery.  I will post up here what I learn.

    Have a good Tues everyone.

  • MegM
    MegM Member Posts: 16

    hi ladies, just wanted to send a little support to you all, I had BMX with expanders July 1st.  It is all very doable!  From what I have learned a regular mastectomy is not very painful at all, but if you are doing reconstruction the pain is more because of the muscle manipulation they have to do.  I was feeling so good the first day after my surgery I tried to space out my pain meds.. and BIG mistake!  take what they give you the first week, you need the pain meds!  don't go crazy buying a ton of stuff for after surgery, I bought a ton of button up shirts (which I hate) and never wore a single one.. comfy PJs were all I needed.  to the hospital all you need is some chap stick and maybe lotion.. all I did there was sleep and watch bad TV.  My experience with drains wasn't so bad, I had 2 and only kept them for 1 week, I was wearing an ace bandage tight around my chest and just hooked them up to that with a safety pin.  My surgeon let me shower 2 days after the operation.. it seems everyone gets different advice on that, he told me just to not let the water pound straight on the suture lines.  Best advice is to get up and walk a bit... this is hard on your back especially if like me you are a hard core side sleeper.. I still can't lie on my side very long, but morer so now because the expanders just feel too weird to me. 

  • Hi Meg - thanks for the support. Sounds like things went as smoothly as they could for you - awesome! Question on the shirts/p.j.s - how soon were you allowed to put your arms over your head to put on a shirt? I'll confirm w/my PS, but she told me 6 weeks - I can't wear even comfy p.j.s for 6 weeks! 

  • For Caryn and others who've done this - I am a Brownie troop leader (our girls are incoming 3rd graders) and will be missing a bunch of meetings/field trips b/c of my surgery. Caryn - I know you're a teacher and that you're going to be telling your students about your impending surgery, etc. Don't know how old your students are, but does anyone have tips on how much info. to give parents/kids on this stuff? My own daughter is aware of all the details of my cancer and upcoming surgery, so there is no need to keep it from her . . . but don't want to give TMI, but enough so that kids can understand it's a big deal, but that I will be A-OK and ready to play again, just after a little time-out.

  • MegM
    MegM Member Posts: 16
    My PS just said no exercises for 2 weeks, but I was free to gently move... I didn't put my arms over my head, but with stretchy regular shirts was fine.... first two weeks I stayed in PJ's mostly, found some at Kohls that were button up the front with shorts for bottoms and they were so stretchy I only unbuttoned the top two buttons and wiggled into them.  I never did wear the special cami top I got at the mastectomy store, I have been much more comfortable in soft tank tops and am slowly making my way into soft sport bra type things... think I may be one of those girls who enjoys going braless once I get my new "perky" girlsSmile
  • amylynn1108
    amylynn1108 Member Posts: 10

    The advice everyone has given in wonderful. I just had my post chemo MRI and I was told that the area of masses that they could see before are gone now and that my area of concern went from 9cm to 3cm! So happy. It just proves that even though the chemo was rough, it worked. I am nervous for my upcoming surgery, I hope I am allowed to just get implants, I am scared to do the TRAM and other tissue procedures. I heard satin button jammies were a good idea, I have no clue what I will need for this surgery. If anyone has any advice on what to buy for at home after that would be helpful. I have a 3 and 4 year old at home, I am trying to explain the surgery to them but they are too young for details. Does anyone know how long the surgery is with immediate reconstruction?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Sarah, I taught kindergarten for many years but will be teaching first grade this year. My school community is close knit and small(ish). Many of the students and their parents know me because they were in my K class last year. Even those that weren't know who I am. This will help eliminate parent anxiety over my medical leave. I will tell the parents about my situation on Back to School night which is a week before my surgery. I plan to be very frank with them, minus the nitty gritty details! I also intend to answer any questions they may have as honestly as possible. I feel that this will reduce their stress and calm any concerns. As for my students, I plan to tell them that I am having an operation, will be out for a few weeks and then back to the classroom as soon as possible. I have been looking for a book on the subject but have only found books about parents having illnesses/cancer. Hey, maybe I should write a book about this, "When My Teacher Had Surgery". That could be a good recovery project :) Does anything rhyme with surgery? -Caryn

  • Amy - that is WONDERFUL news about your tumor getting smaller! It's awesome to know that all your effort w/the chemo paid off. Chemo is no joke - it's so gratifying when it works the way it's supposed to!

    When you say you hope you're allowed to get implants - what have they told you about that? Maybe there is an underlying issue I'm not aware of, but you "should" be able to get whatever you like - they need to explain all the available options to you, the pros and cons of each and you should be allowed to make a decision for yourself . . . . some docs are better than others at this, though.

    As for surgery times, it depends on what kind of reconstruction you're having - TRAM and other flap procedures are much longer - I have a friend who had a bilateral DIEP and was in surgery for 15 hours. For my nipple-sparing with implants + Alloderm, they're saying 6 hours. Also a big difference in recovery times and subsquent procedures you will need - again, especially w/two little kids at home, these are details they need to clue you in to! Maybe you've just not gotten them all b/c you just moved to this stage of the game, having just finished up w/chemo.

    And as for stuff for post-surgery - again depends on your reconstruction type, but I've heard button-down shirts and pajamas, lots of pillows, a wedge pillow - if you're getting a TRAM, for example, you'll need to think about what pj/pant bottoms you're wearing b/c you'll have incisions at your abdomen . . . there is a good thread on what to buy for post-surgery on here.

    So many unknowns - hang in there and hopefully it'll get sorted out for you soon!

  • Thanks, Caryn - I think I'll follow your lead - just hit the high points and then if anyone wants to drill down, answer questions. Chances are, most of them have gotten wind of this anyway - we're a small community school in a small suburb and news travels fast. I want to use the "real" vocab and not sugarcoat it, in part b/c my daughter knows about cancer and what a bilateral mastectomy is, so if other kids say things, she has the tools to talk about it/feel OK about it (and of course, I'll be at the ready for anything unexpected!).

    And yes, you should write a book on this - b/c it is all about mommies and there are, I'm sure, a ton of teachers who go through this! 

  • MargieC
    MargieC Member Posts: 302

    Amy Lynn ---  I am so glad to here how well your chemo went.  I have chemo 5 of 6 this last Mon.  I hope my results are as good as yours.

    What I have been told by a couple people who had a DMX is - pillows,large soft cami (once you can step into-I picked up a couple at Kohls on summer clearance), some button up shirts (I went to goodwill and picked up a few for $2 each), PJs, comfy yoga style pants and zip up hoddie if it is cool where you are.  I did get the pink pockets and I will use them to hold my 4 drains.

    have a good Wed everyone....

  • lilylady
    lilylady Member Posts: 478

    Dear Sept girls,

      I am in the August group and had my BMX with no nodes on Monday. Stayed overnight but really could have went on home. The next day we stopped for Chinese at my favorite place and  a short trip to Lowes also. Got home and took a nap them made myself some scrambled eggs for dinner. Stayed up and watched a little TV then went to bed with an Ambien.

      I have needed no pain pills so far. I am wearing a ON-Q pain ball til friday and i thimk that is why I am feeling so good. She wrote a scip for Vicodin but I haven't needed 1 yet. The drains are annoying but I have a wardrobeof short sleeved hoodies-we cut a hole in the back of the pocket and fish the drains in from the back. That way they aren't swaying all over the place.

    I bought the wedge pillow from Bed Bath  and Beyond but I think I will return it. It was $29 plus an aditional $10 for an extra cover. I slept fine in my own bed with lots of extra pillows to propme andmy arms up.

      The only proviso I can add is I did not have recon so no TEs or flaps or anything. The majority of people who post that the antcipation is worse than the surgery-they were right. Adding all the recon stuff makes a big difference in the recovery from what I have read.

    Good Luck to all of you. You might want to lurk on the Aug MX site to get more insight

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Lilylady- Wow! Good for you on doing so well. It is encouraging to hear positive stories of recovery. Hope things continue to go well. I do agree with you when you say that recovery seems to be easier on those who have not had any type of reconstruction.

    Sarah- That old saw, "Honesty is the best policy"  is so true. I have known a few people who chose to be mum on the nature of their  illnesses and the speculation and rumors ran rampant. If people don't have facts they tend to fill in the blanks with all manner of things. I know I won't be 100% successful, but I hope to be the one controlling the information, not the rumor mill.

    Got my drain management/recovery camisoles yesterday. Dork that I am, I opened one up and was "practicing" stepping into it and pulling it up with minimal use of my arms. The drain pockets are removable so it seems that they might be comfortable camisoles to use after the drains are out. I also got a pre-surgery info packet from the surgery department at my hospital including a guided imagery/relaxation CD. They also offer a short class on using these techniques to prepare for surgery and help with recovery. Oh my, this is really happening...

    Caryn 

  • LilyLady - so great to hear you're doing so well! It's always nice to hear encouraging stories like yours. Thanks for posting.

    Caryn - if you're a dork for trying on your cami's then I will be too - already thought of doing that when mine show up in the mail . . . . haven't gotten my pre-surg packet yet, but your mention of the relaxation CD reminds me that I haven't posted here about my appreciation for relaxation/meditation. I "discovered" it my first time around w/BC and it helped me quiet myself thru chemo transfusions, radiation, tests, general anxiousness, etc. etc. This time around, I got Peggy Huddleston's Prepare for Surgery, Heal Faster - a book and a companion CD. They are great - you don't have to do everything she says (for example, she has scripts you can give to your surgeon to say while you're under during surgery), but her guided imagery and relaxation stuff on the CD are wonderful. I have also found the materials from the Mind/Body Institute (now at Mass. General) to be very helpful - this is Herbert Benson's group, which for those who don't know - he's the pioneer of the "relaxation response" - 20 min. of focus on breath, quieting the mind. There are CDs available thru the MGH store online. My favorite is by Olivia Hoblitzelle, but there are many goodies there. The mind/body program for cancer patients changed my life in '01 - imagine a program that can show a hard-a$$ litigator the benefits of meditation? Very convincing! 

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Thought I'd post something amusing. Just like every "sphere" in our lives, breast cancer has it's own lingo. I am still learning what all of the the abbreviations and acronyms stand for. When I first started reading through these forums for information on implants, I kept seeing , "TE's". In my other sphere, I'm a teacher and TE means teacher's edition. I spent about an hour getting my classroom ready today and arranging all of my TE's. I was laughing so hard as I moved the books around due to what it now means to me. Good thing no one was around!

    Smile Caryn