November 2009 Mastectomy

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited December 2009

    Anyone having muscle contractions in the chest muscles that is downright uncomfortable? I underwent bilateral MX on 11/10/09 and have elected for no reconstruction. My problem is the muscles tightening up so much that I have to apply pressure to relieve the contraction. How long does this last?

  • jane1254
    jane1254 Member Posts: 62
    edited December 2009

    2Hands4Me

    Did you mean the kind of stuff I sent you, about the hospital stay and surgery?  I was sooo happy to get all the things that made my hospital visit easier. It was one less thing to think about.

    Jane

  • YoYo44
    YoYo44 Member Posts: 203
    edited December 2009

    Leslie,

    I have had the muscle contractions too but thought it was due to the TE's.  They usually go away on their own, eventually.  I find them worse when I lie down or sit in the car (back touching a surface).  They have been getting less and less though-my surgery was Nov 17.

    Good luck. 

    Yo

  • Leslie1962
    Leslie1962 Member Posts: 233
    edited December 2009

    Yo - Well, I guess I am glad I am not the only one. My doc seems to think I am still too soon after surgery (Nov 10)and these things will/are going to happen. Do you also get a feeling of a leathery sensation during some movements? I was told that could also be the scar tissue and that I need to have my physical therapist do something to start breaking that down. I do try to move the area and stretch every day, but seems I just don't get anywhere. I am also limited by the left arm as it is still feeling heavy and full and not allowing me to press further with range of motion. To say the least, I am very frustrated by this. 

  • MsMarilyn
    MsMarilyn Member Posts: 125
    edited December 2009

    Yo & Leslie..   I had my BLM w/ TE's on 11/12 and there are times I swear it feels like I'm getting a charlie horse cramp in my chest.  When I asked my PS about it I was told to keep wearing my compression bra and it would lighten up with time. I'm able to lift my hands completely above my head and out to the sides but the strain on my left side is almost too much at times.

    I found out some wonderful information I'd like to pass on to the rest of you laides.  A real sweetheart of a lady named Dione from the ACS in my area gave me a phone number to a support line for woman with breast cancer.  The name of the group is Breast Cancer Network of Strength and their number is 800-221-2141. The ladies that answer the phone lines are BS survivors and can truly understand what we're going through.  Now please don't think that I'm putting down ANY of the ladies here because I'm not!  I've made some great friends on here and ALL of you have been so wonderful, supportive and I've gained a ton of knowledge from a lot of you ladies on here. 

    But I'm sure there are a lot of us on here (me included) that really don't have anyone we can "talk" to when things get to be a little too much or we just need to vent or just need a hug from someone that truly understands.

    Now onto another note:

    Today I went to my PS today and got another fill.  He put in 110 cc on each side and now I have 400 and my skin is really feeling the stretching. 

    But when I went to the pharmacy to pick up my meds for chemo and that horrid shot I've been trying not to think about.  I was told that I owed $4, 009 for my medicine.  Now I have pretty good insurance coverage for my medicine so I thought for sure there had been a mistake.  But I was soon corrected about that.  The shot I was supposed to give myself the day after each chemo treatment costs 4K each.  And the ONLY way my insurance would cover the cost is if I were admitted into the hospital.  So I went to my oncologist who is thankfully right across the hall and asked what was I suppose to do.  And I was told "Oh that happens all the time with different insurance companies. You'll just have to come back here the day after each chemo treatment and get the shot, it's no big deal."  I couldn't believe what I was hearing... NO BIG DEAL?  Who are they kidding here?  It's not like I live next door to the hospital, now granted I only live about 20 mins away but come on here.  But to my doctors credit she didn't offer to let me stay the night after each chemo treatment and get the shot in the morning and then go home.  Right now all I can do is sit here dumb founded and wonder why?  Why would the insurance company be more willing to pay for a bed in a hospital and pay all that extra cost instead of just making the cost of that shot more affordable.

    Sorry about my rant but on this I'm so.... (pick a word!)

  • Leslie1962
    Leslie1962 Member Posts: 233
    edited December 2009
    Hi MsMarilyn - You have got to be kidding! When picked up the Neulasta shot at the hospital pharmacy in Ann Arbor, MI almost two weeks ago I was given two shots and a copay of $30.00. So at least I know I have one more shot here at home. Thanks for the heads-up on that one. It will be interesting to see what happens the third time around. I live over 70 miles from the hospital so going back the second day just to have someone give me the shot would really be a problem. I wish I could raise my left arm over my head - have not gotten there yet and it is getting very frustrating. I also seem to have cording in the left arm along with some swelling that is persistent that keeps me from accomplishing that task. I just keep trying. Keep up the good work and I hope your fills continue to progress smoothly.
  • Jane_M
    Jane_M Member Posts: 1,549
    edited December 2009

    I had to go back to the oncologist the day after for the Neulasta shot...I was never given the option of doing it myself.  For those who haven't heard, though...I got a tip here early on that if you take Claritin the day of the shot and for 2 days after, the SEs are much more manageable.

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited December 2009

    Leslie - I haven't had the muscle cramp sensation but it really is true that we are all different. I agree that it sounds like it will settle down as your body adjusts to the surgery. Do you go to physical therapy? Several years ago, I fell on my shoulder and was told by my regular doctor that it would get better in 3-4 months. My chiropractor however, gave me specific instruction - he stressed to respect the pain, but not to avoid all of it. He explained how to crawl my fingers up a wall or door frame just to the point of discomfort. Hold the position for the count of maybe 5, then relax and forget it for awhile. Repeat several times a day. It worked and I have full range of motion in that shoulder. I decided the same thing applied with my surgeries. It seemed like in February the arm exercises my surgeon told me were fine - arm straight out in front and up, then straight out to the side and up - 50 times a day. I did 10 in front and 10 to the side 3 times a day (If 50 is good, 60 is better, right? Besides, the math was easier!). But with my Nov. surgery, it seemed like my range of motion was less, and the area was tighter. So I started crawling up the wall, holding the position, then resting. I had a definite goal and could see when I was able to go a little higher. I now have full range of motion, although it does still pull the incision.

    MsMarilyn - Insurance isn't fun to deal with! Can you (or your preferably your Oncologist!) appeal the denial? Sometimes it seems like it depends on who gets the request, and if you re-submit the claim with more information, they may approve it. There are often more ways than one to get something done. Too bad WE are the ones who have to think outside the box!

    Thinking of you all and hoping your day is going well!

  • Kim09
    Kim09 Member Posts: 100
    edited December 2009

    MsMarilyn - Dealing with the insurance is never fun.  For my Neulasta I just had to go back to the cancer center the next day.  The insurance paid everytime.  It was never a problem for me since I am only 20 minutes.  It took about 15 minutes each time.  Maybe your insurance company means that the cancer center has to administer it not that you have to be admitted to the hospital.  My cancer center's billing is done through the hospital so its the hospital that is actually billing the insurance company. 

    If you haven't talked directly with your insurance company I would recommend that you do. 

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    MsMarilyn -- that shot is called Neulasta and helps raise your white blood count.  They give it the day after because it is more effective then.  I always went back the next day (through 3 1/2 months of chemo every two weeks) for that shot.  Hey, it's free if you go there :)  And $4,000 is a lot of money!  Not sure why it has to be administered by the hospital/doctor's office, but insurance companies have freaky rules if you ask me.

    Actually, I received a bill for one of my surgeries (at one point) for $4,600 and it was so much that I called my insurance and asked them WHY I was receiving such a big bill and they said: "Oh you're not supposed to pay that!  Disregard it and we will send the hospital a 'balance bill' letter."  So I did not pay the bill and never heard from the hospital again, which means it was taken care of.  I subsequently have received other bills from the local hospital that also were NOT owed by me due to arrangement on prices between insurance and the hospital (though none were quite as price as that).  I now ALWAYS call my insurance if I get a bill for anything other than a co-pay to make sure it is correct.  I have the feeling this local hospital -- a good place in every other respect though I've since moved on to Sloan Kettering in NY -- just routinely floats these bills out to see if people will pay them.  So ladies: make sure you really owe what they say you owe!  Call the insurance company!

    Cheers,

    Lilah

  • kanthony
    kanthony Member Posts: 24
    edited December 2009

    Leslie,

    I was also having muscle spasms in my chest, especially the first week. they have since mostly gone away, except when I get cold. When I go to bed, I heat up the sheets with a heating pad!

     I know someone else who had very bad muscle spasms and her doc ordered her a muscle relaxant, such as skelaxin. That is a drug they often order when someone has back spasms. It worked for her.

    Hope you are doing well!

  • YoYo44
    YoYo44 Member Posts: 203
    edited December 2009

    Hi,

    Scary about the insurance issues.  Good luck sorting it out.  Money worries are not a welcome added pressure while getting treated for BC.

    I had my follow up visit with my surgeon yesterday and he was funny.  I asked if I could lift things now and he said yes, do everything and anything.  Go rock climbing, parachuting, parasailing, anything I wanted.  Funny guy.  I thing I'll just stick to some shopping, housework and baking for now with some extreme gift wrapping tonight perhaps! 

    I still have the muscle spasms but they are not as bad or frequent.  Maybe the next fill will change that too.  My movement is not bad.  I gage it by taking off my t-shirt or tank top-how easy or painful it is.  It is also harder with a tighter less stretchy top so that is also a gage.  I try to stretch as much as I can and lift (carefully) more and more.  It is getting better and hot showers help so I try to stretch when I am warm.  The nerve thing in my chest and back of the AND arm is pretty irritating too. But that is also finally getting a little better.

     BTW, I got the path results back too.  Left breast all clear.  Yay!!  But 6/8 nodes pos.  Yuck!  So Chemo starts again Jan 14 and rads after.  Oh well. (Still very happy with the BMX decision)

    At least I know now.  There is peace in knowing and the evil tumour is at least out now!

    Have a great weekend everyone!

    Yo

  • dmorgan2
    dmorgan2 Member Posts: 241
    edited December 2009

    Marilyn- We'll have to pray about the whole $4,000 shot insurance ordeal!! Just what you need, right?!?

  • Issymom
    Issymom Member Posts: 264
    edited December 2009

    I had a BMX on 12/4 and also had the muscle spasms/contractions in my chest.  In my post-op appointment I mentioned it and the NP said it was the clots being pulled into the drain tubes.  I had many long (several inches) "clots".  Anyway, I had my drains removed yesterday (YEAH!!) and had NOT had the feeling since. 

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    Issymom I love your name because, and please don't take this the wrong way, my beloved dog's name is Issy (so I am also Issy's mom :) 

    How odd that your NP said the spasms were from the clots; my PS said it's just the stretched pectoral muscle from my immediate reconstructions with TE's... a device placed under the pectoral muscle and designed to stretch it by being filled once a week with saline solution to create room for a permanent implant.  My spasms are minor... like a fluttering feelng.  Did you also have TE's (tissue expanders) for reconstruction when you had your BMX?  I have experienced my little flutters SINCE having the drains out... so maybe two different things.  Anyway, YAY for getting those drains out!  Does wonders for a girl's ability to heal :)

    Cheers,

    Lilah

  • jane1254
    jane1254 Member Posts: 62
    edited December 2009

    Lilah

    I had a unilateral Mast. on 12/7 and I was also told the spasms were from the muscle stretching due to the TE  I was given a prescription for a muscle relaxer. I was most uncomfortable on a fill day.

    Jane 

  • MsMarilyn
    MsMarilyn Member Posts: 125
    edited December 2009

    I got to thinking (which isn't always a good thing...lol) and decided that I wasn't going to wait for my hair to fall out.  I know that due to the chemo it's going to happen so tonight I had my daughter buzz my head with the #8 guard.  So it isn't military type buzz but it's pretty close.  My reasoning is if I'm going to lose my hair.. it's going to be on my terms period!

    I had my sister take pictures of it all and when she sends them to me you can see them on my Facebook, just send me a PM and I'll give you my full name or give me yours.

    Anyway I'm happy with my choice and honestly I don't think it looks too bad.  I've had long hair (down to my lower back/waist) since what seems like forever.  Then 2 weeks ago I went and got a swing bob and now I'm buzzed. Tongue out

    I hope everyone has a happy weekend!  I'm off to finish up with baking cookies for Christmas!

    Hugs ~ Marilyn

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    Marilyn -- I did that too!  About two weeks after my first AC and just before my second.  Had a buzz cut for a week lol -- the hair fell out by the end of my third week of chemo.  I was very glad not to have to lose my very long hair; it was empowering to cut it off, too, before cancer (or chemo actually) could take it.  Good for you!  I finished chemo Nov 9 and am still waiting for any sign of hair.  Sigh. 

    Jane -- Yes that's what I thought too -- that the stretching of the muscle can cause spasms.  I am fine at the moment.  We'll see how I feel after first fill on Monday.

    Cheers,

    Lilah

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited December 2009

    Hello everyone - it was a busy weekend! We had a 50th anniversary celebration to attend on Saturday evening, then church Sunday followed by a planned carry-in dinner. A couple of us did the meat, someone else the rice and everyone else brought what we asked them to....green beans, green salad, or dessert. It went well and was yummy too! Hope everyone else's weekend was good also!

    It's hard to believe that I'm 6 weeks from surgery already. Still have a couple little issues but they really are little compared to some of you ladies! Thinking of you all. Special group hugs for all who need them.

    I've got 3 days to be ready for Christmas now, but no work, no tutors - just the final details. We don't do alot, and will just be here together, so it's not any high stress event! I plan to run several errands today, wrap gifts tomorrow, make some Christmas yummies on Wednesday. Sounds do-able with some free time too! I'm on call from 6 am Christmas Eve to 6 am Christmas morning. I'm sure we'll work some - the rest is ????? Then we'll be together as a family Christmas and the weekend! Everyone have a good day!

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    For what it's worth, here's my first fill report:

    1) the magnet thing is cool -- it's like a douser! 

    2) no pain -- just some odd sensations (probably because no feeling outside but some feeling inside)

    3) taking advil (600mgs) every 4 hours just in case but really just feeling the same as before (slightly sore/slightly uncomfortable)

    4) found out I have a TE with 600cc capacity -- today they added 90 cc to the 180cc already there, so I'm almost halfway there (maybe more because they don't necessarily have to fill me all the way)!  Yay!

    Cheers,

    Lilah

  • MsMarilyn
    MsMarilyn Member Posts: 125
    edited December 2009

    This pink ribbon I wear isn't just any pin,
    It isn't an accessory, or a fashion trend.
    It's hope, it's faith, it's the belief in me.
    That by Gods' mighty hand I will beat this disease.

    It says I'm not a quiter, I won't give up and surrender to,
    This monster that is raging, trying to tear my body in two.
    It says I'm a fighter, this battle, I'll win,
    It may as well surrender, never show its' head again.

    This pink ribbon I wear, stands for my heart that still beats,
    For the life I still have, for Gods' grace that covers me,
    It stands for the strength that I never thought I had,
    And for the joy that appears when I think I'll stay sad.

    It represents my dreams that still can come true,
    My life that isn't over, that can begin anew.
    It means I am a survivor not just of a disease,
    But even the me that almost didn't believe.

    This pink ribbon I wear is so much more you see,
    It means I'm strong, though my body is weak,
    It stands for so much more than I can describe,
    But most of all, it says,"I will survive".
    By; Tina Haynes
    To My Hero&Sister In Law
    Marilyn Thilges

    My sister-in-law wrote this for me tonight and it meant so much to me that I thought I'd share it with you ladies as well.

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited December 2009

    What a poet! Your sister-in-law expressed thoughts and feelings so well! Thank-you for sharing with us. I printed it and saved it also!

    Only a few more days until Christmas. And only a few more things that I need to do. It's nice to be relaxed and stress-free!

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited December 2009

    On call tomorrow, so most things are done. Always a few last minute details.... Everyone must be busy since there are fewer posts! Hope everyone is doing well, recovering steadily, and thankful for the season! My thoughts and prayers are with you all through the Christmas season.

  • dmorgan2
    dmorgan2 Member Posts: 241
    edited December 2009

    Marilyn- I see you made it! Tell us all about your Monday (surgery and first treatment) when you're up to it. You have been so much in my thoughts and prayers!

    Merry CHRISTmas, everyone. We all made it through the month of November. We all had a huge hill to climb. We all had our fears (especially before our surgeries!). But we faced our fears and made it through! We have supported each other in an amazing way. You all have been a huge support to me and I am very grateful for that and for this safe and supportive place to read, comment, and vent. We have been linked in a way that most people don't experience.

    This is a very different Christmas for me...as I'm sure for most of us. I never would have dreamed I would be in this position/place. I never would have wished for this and it's been a very scary place to be. However, I can see where I've grown through this and how, in many ways, it's been a good thing--in that good has come out of it for me and my family.

    I find myself very grateful and more appreciative for things and people than I normally would be. I feel humbled by the journey I've traveled these last 4 months.

    I hope you all have a peaceful Christmas and that this time next year, we won't be dealing with the issues we are or have been dealing with this year. I wish and pray for us all healthy bodies.

    Merry Christmas, friends--- 

  • MsMarilyn
    MsMarilyn Member Posts: 125
    edited December 2009

    The easiest thing about Monday was the port placement... I was soo scared about being "awake" during the placement that I wasn't sure I even wanted to do it.  Which seems pretty silly now, after the fact, but at the time... whew!

    But I can honestly say that it was NO BIG DEAL for me.  I didn't feel anything at all.. the worst part was getting the IV started!  Thankfully they left an access to the port so that when I went for chemo they didn't have to do anything.but take some blood and hook up the IV to it.  It's still a little sore but nothing to really complain about.

    The day after chemo I was tired but not sick or anything.  The next day I woke up to being "Lobster Woman" I looked like I played in the Florida sun without sunscreen all day!  Was told that it was a reaction to the steroids in the chemo and it should go away in a few days and it did for the most part. (Thankfully!..lol) 

    No real bone pain to speak of yet just my normal aches and pains.  Acid reflux is another story all together... the over the counter meds didn't help so my doc called in the heavy duty meds and it seems to be helping some.  Basically the same thing as the OTC only 3 times stronger and a lot cheaper with the Rx.  And the doc also told me to NOT take the steroids tomorrow because they are what has been keeping me awake and not letting me get any real sleep.  She said that with the AC chemo the steroids weren't really needed yet (but they did help) but they would be needed when I started the T cycle of chemo.

    The only sad thing I have to report is that I'm going to have to miss out on going to my Dad's house for Christmas this year.  There is going to be about 20 people there and I was told that most of my nieces and nephews have running noses and coughs and I just don't want to take the chance of getting sick and put in the hospital.  But my family and I worked out a way for Samantha to get to spend Christmas evening with her Papa and the rest of the family and not have to miss out on anything.  My brother and sister in law are going to pick her up in the afternoon to go to Papa's house and then she's going to spend the night with her Papa and come home the next day.  Going with her is the Clairitin and GermX to name a few things I'm sending so that when she comes back home she won't be bring back all of the germs..LOL  I know I can't stop her from bringing everything back but I can try to put a limit on it.  I just don't want her to miss out on being with the rest of the family on Christmas.  My family isn't rich by any means but we are a tight group of people that love each other and truly know the meaning of FAMILY.  We've been through so much this year with the passing of our grandpa in April, my husband losing his left leg, going into a coma, suffering strokes in May and me dealing with BC starting in Oct.  I want her to remember this holiday as the one that brought our family closer not the one where Mommy was sick.

    So I'm going to end my post with smiles, laughs and the warmest wishes I can to all of you lovely ladies and I truly hope that you all have a VERY Merry Christmas!  Live with Passion, Love Deeply and Laugh out Loud for everyday we have is truly a blessed gift!

    Hugs~Marilyn

  • Issymom
    Issymom Member Posts: 264
    edited December 2009

    It is definately a busy time.  My father in-law and brother in-law arrived on the 18th and so I have been busy with "entertaining" them (they are very low key so they don't really require much).  It is more my hangups with wanting to make sure that everything is good for them.  Fortunately and unfortunately, I look good and have good mobility so everyone forgets that I just had surgery less than 3 weeks ago.

    LILAH: No offense to liking my name because it reminds me of your dog.  I have a cat named YoYo and I so I like YoYo44. I didn't have TE (I am doing delayed reconstruction).  The "spasms" completely went away after the drains were removed.  Probably 2 different situations.

    I am happy not to have chemo until after the first the of the year (probably Jan 12th).  I am trying to decide whether to do AC x 4 then T x 4 or a clinical trial of TC x 6 vs. TC x 6 plus Avastin for a year vs. TAC x6.  The trial sounded good until we found out that if I was assigned the Avastin group, I would not be able to have surgery until I was off it for at least a month.  That would mean March 2011.  I did delayed reconstruction and I am BRACA1+ and was planning on having my ovaries removed after I was done with chemo.  I don't like some of the longterm risks with Adriamyacin (sp?), Chronic Heart Disease or Acute Leukemia.  We are going to talk to my Onc about it again tomorrow.  I just someone would give me the answer and tell me it was going to be OK.

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    Issymom -- it's a Hobson's choice no matter what one chooses, it seems to me, in all of this (no good choice, really, in other words).  Aren't the chances of heart disease or leukemia extremely low?  What risks do you face with the trial (vis-a-vis getting something like leukemia?)   I know how you feel, though, for what it's worth; it's all so overwhelming sometimes and, really, so hard to know what is best.

    And you know that fluttery feeling I had in my chest did go away about two days after they removed the drains, so maybe it WAS the drains :) 

    Marilyn, I personally loved the stereoid-induced all-nighters I had during chemo.  Usually, for me, it was on the day of chemo (and then I would crash the next day).  But then I'm a night bird.  Glad to hear the red skin went away!  I did not have that particular SE.  Drink lots of water!  It helps.

    Cheers,

    Lilah

  • Issymom
    Issymom Member Posts: 264
    edited December 2009

    Lilah,

    Yes, the risks are extremely low ( 1-2%) but as we all know, when you are the 1% that number is too high.  None of us know what SE will affect us in the short term and long term.  For me, a big part of the decision is whether I want to wait an additional 9 months or so before doing reconstruction (vanity mostly) and also an oomph or hysterectomy (BRACA1+).  I am leaning torwards doing the conventional AC+T.  I'll see if my onc has any other words of wisdom for me and my husband (she is great at spending the time talking through these facts).

  • Lilah
    Lilah Member Posts: 4,898
    edited December 2009

    Awesome Issymom.  And yeah I know.  My life never used to be about percentages.

    Sounds like you have a great ONC!

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited December 2009

    The last day of 2009....and what a journey it's been! In spite of the trials, God has been faithful as He promised. He is still in control and will be with whatever 2010 brings. I'm thankful for the many blessings He has provided also. May your year ahead be filled with more blessings, comfort and promises!

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