August 2014 Surgery

Imheretoo

Milaandra, so I'm understanding now that the issue of the breast radiation,  for both you and Dr. Kerr,  isn't whether you do it at all, but whether you do it right now, when the spine thing seems to be a more pressing issue, and your breast skin is still in bad condition from surgery consequences, and you are hoping to be able to fit some much needed fun into your life, knowing intelligently that happiness is a very important part of your arsenal for battling this thing.      .    Although I am concerned about your anticipated bad skin reaction to the radiotherapy, it makes me happy to know that not only nasty guest-onc, but also Dr Kerr and head-onc don't  feel that the fact that you already have cancer cells spread to your spine automatically removes breast irradiation after your quadrantectomy as a significant weapon that could  potentially significantly reduce the load of metastasized cancer cells free to roam about in parts of your body where they can do serious damage.    So I say  YAY for having one more weapon that I was afraid you were telling me your other onc thought couldn't possibly help you, even if the number of cancer cells out of the barn is not so many, and you are in great fighting condition, as is clear that you are, .    (I hope you don't feel that I'm cheering against your desires by expressing that happiness)       I AM ALSO VERY happy that they feel the weapon will still have it's power if you delay its use a bit,(hope you can delay it as long as you are wanting to!) so you can take care of those other things!      You keep on sticking up for yourself and not letting things that don't seem right sweep you down a path that's all wrong for you!      

I don't think that the importance you put on your fun, enjoy life dress-up activities sounds stupid at all.     The corset dress idea sounds grand!      You've got a big battle to fight to keep this disease from reaking havoc on your whole body, but you've been lucky in that at least you've still got whompers that look just fab in clothes;  why not have fun and flaunt them?   Putting a corset on a radition burned body would definitely be rough.     

    

     

Imheretoo

Psalm, Great news that you got two coinciding views that you don't need Chemo and can fight this with Tamoxifen and Radiation!      (I do understand your nagging worries about potentially "renouncing" to a therapy and then have it turn out that maybe it might possibly have been able to contribute to the battle.      I'm sure though, as I know you are too, that your docs know their stuff and the Tamox and radiotherapy are going to clean it all away!)       I'm very sorry to learn that you've had pain issues that have been giving you those awful  bone mets anxieties , and I'm very glad that your docs gave you a scan so you can have real answers.      I'm sure hoping along with you that that result, and your BRCA test answer, will be good!    

It's great that you've got your rads dates lined up.    I'm waiting for a telephone call to tell me when I need to go in to talk to the radiotherapy folks.     (I sure hope they have my phone number right!...)

natalyamacneil

I'm another August baby, August 13th to be exact: BMX (one breast prophylactic)  & reconstruction. I had seven weeks prior to surgery to plan, research, & to educate myself & friends & family (that was the most exhausting part), ask a million questions of my doctors, their nurses, & other BC survivors---& I basically ran myself to exhaustion (good for sleeping) daily with lists of things to accomplish. And did it all again the next day for seven weeks.

Everything else in my life really had to become perfect; it was my way of exerting some control in my life while realizing I had lost control. It was my way of coping; I needed to be on the phone or running around town getting things in order. I became an obnoxious control freak (& I had always been one to begin with)!  Everyone around me humored me, especially when I explained that my way of coping was not allowing myself to have much time alone to think. My whole life had become a project centered around breast cancer. My husband was (still is) a saint. When I came to after the surgery, I experienced the biggest wave of relief: finally, no more thinking, planning, talking, fretting: it was done.I  Much to my surprise, I came out if it peaceful & accepting.

Couturehousewife

hi there!

This is my first post here- so forgive me if I'm in the wrong spot. I'll happily taken directions to where I'm supposed to be!

I had a lumpectomy on August 21 and am still super sore. I'm wondering if anyone else is still in the same boat? I've driven only a handful of times and no more than 20 min trips. I'm still swollen around my back ( either from them turning me on the table, or because my lump was very "deep" says the surgeon) nonetheless, sore back with occasional twinges, and a sensitive scar area, but overall general soreness in that area. I've stopped the prescription pain meds about 2.5 weeks ago, and occasional pop a TY if need be. Feeling like the pain should have subsided by now. Is anyone else in a dull ache all the time, turning into substantial pain every so often? Any advice would be most welcome. 

Kristin 

quiltlibrarian

Couturehousewife hello August 21 sister. I had a mastectomy on that date and I have little pain. I even did a lot of house work today and have very little or no pain. Is your surgery site hot and red at all? Have you talked to your surgeon at all. Or family doctor? You might want to get it checked out.

Hope that you will feel better soon.

quiltlibrarian

Hello Ladies, I am laughing at myself today when I realized what the swelling that I had in the arm area is. Just feels like that because right beside it is very concave. I realized this after thinking about what my Surgeon said, and the ultrasound doctor said that the swelling was a muscle. I am still glad that I got it checked out. Plus feeling very relieved it is not something worse.

Hugs all

bobogirl

Yay quilty!  You have muscles!  

Welcome couture!  You are welcome with us.  This is an awesome group of women, I will tell you.  I'd get that checked out.  And quilty was right to get it checked out.  Anytime you feel something is not right, you should check it out with your BS.

That being said, I had a partial MX in 2008 -- a big lumpectomy, and it was deep -- and I had 'deep aches' for some time.  Don't worry too much.  But your BS should be the kind of person you should be able to go to with your worries.

Welcome!

p.s.  You look so pretty in your avatar

Couturehousewife

Morning! Thanks for all the kind responses! 

I'm going to call on Monday for sure- while my BS doesn't have the best bedside manner, his nurse is amazing and he's (BS) is very talented in the OR.  

The site is not red, but I would say I'm still swollen- I was told the swelling would take 6-8 weeks to go down. And that the hardest surrounding the scar was normal as well. 

All that being said- bobogirl- you nailed it. A deep ache is exactly the words I should be using to describe the pain. Also bobogirl- thanks for the compliment! 

I'm scheduled to go to DFCI in November to discuss future options. I've just turned 31 and am debating a PFBMX. I'd welcome thoughts in regards to that as well. 

Happy to have a place to turn to, as none of my girlfriends "get it". 

Happy weekend. 

Sunflowercat

yay Angelfaith!  So glad you don't have to do rads.  

Quilt, so glad you figured out what was causing the "swelling".

Ganz - good luck at your pain clinic appt.  I really hope they can help you get past this.  Have you tried drinking smoothies to help with your nutrition.  I'm not a big smoothie person, but when my pain was at its worst, I found them to be much easier to stomach.  Smoothie king has a killer mango smoothie.  Yum!

Hope everyone is having a great weekend.  Last night I went to a "mom prom" that was one of the Breast Cancer Awareness events in our town. The theme was "A Night in Arendelle" (from the movie Frozen, for those of you who are unfamiliar) There must have been over 100 little queen Elsa's running around.  My kids had a blast and it looked like they raised a lot of $ for a local BC fund.  

Only 5 more days till I get to shower. Not that I'm counting or anything...

Sassy_Seven

Hi Couture, 

I had a lumpectomy on Auguat 13 and I still have some aching and soreness. not as deep or often as yours, it sound like. But when I told my BS's Physicians Assistant it still hurt she said it was going to for awhile. It was starting to go away but I started rads this week and it is back. Especially last nite after rad#5. Gonna have to ask about that. It was really sore. I still have some twitching and random sort of shooting pains which I understand are normal nerve healing. The pain after rads may just be from having my arm stretched over my head, a new position.

Glad you will ask about your concerns! Let us know what you hear.

Allydp

I love seeing this thread so active! I just love our little group here.

Ganz - how's the pain? Any better? When is your appt with the pain clinic? 

Mil - your castle getaway sounds like so much fun and so romantic! How's the gown coming along? You'll have to post a pic and show us! I haven't read your other posts yet, but will catch up soon. 

Drago - welcome! I'm glad you're healing well despite the door incident. What day was your surgery? I'll add you to our list.

Sunflower - so glad to hear you're healing well. I hope you're allowed to shower soon! And happy birthday to your little one! 

Quilt - LOL at collecting the fake breasts, and you really had me laughing about the swelling. That is something I would totally do. And how awesome that your surgeon squeezed you into her day like that!

Ml - sounds like you had a great appt with you PS. Glad to hear he's willing to fix the muscle. I'm sure that would be a pretty easy recovery. Keep us posted on how things go with your MO and chemo decision. 

Imhere - I think nerve damage from chemo is what this pain is going to end up being. I was on an aggressive regimen, so it would make sense. I had the bone scan on Friday and then my onc's office called to ask where the CT results were. They still wanted me to have the CT, so I was able to do that this morning. I'll get results Monday morning when I see my onc. Trying to stay positive and busy this weekend. 

Angel - YAY for no rads! And yay for being done with fills! Keep us posted on when your exchange will be. I think I'm going to nail down a date next week as well. 

Well, time is getting away from here as I catch up with everyone. Hubby and I are celebrating our 11 year anniversary tonight with a nice dinner out. They only had reservations for 5:30, so I need to get my butt in the shower. I'll be back tonight or tomorrow to finish catching up! Hope everyone's having a nice weekend! 

quiltlibrarian

Happy Anniverary Ally and Hubby

bobogirl

Happy Anniversary Ally!!!!!  And congratulations to your husband, because you are so sweet and 'a keeper'  

Definitely voting for 'chemo nerve damage' and awaiting your results!  XXX

Imheretoo

Natalya and Couturehw WELCOME to both of you!    Two newcomers in a row is a record for our August group in September!    

Natalya, I think people may have accidentally missed seeing your post, or forgotten to comment to you just because there was another new poster right after you that had a specific question.     I, like you, had a very long period between learning that I had breast cancer and getting my first step towards treatment (the surgery).    Like you, I ran myself to exhaustion, keeping busy (although in a totally different way than you-- I can't and don't control anything!), (over) educating myself, getting really worn out talking to and explaining things to my family (that lives in a different country from me and needed lots of reassurances) and my family-in-laws (that live in a different town in country I live in, and had a hard time understanding that NO, I did NOT need them to move into my house and take care of me!).    But most of all, (totally opposite you) I wore myself out spending way too much time alone thinking.    Like you, once the surgery finally happened, I felt tremendous relief and peace, even though I still knew absolutely nothing about the level of seriousness of my diagnosis, and what other cures I would have to affront. (My biopsy tests were very basic and only told me that I had cancer, but not even a preliminary hint about grade , hormone sensitivity, agressivity and all the rest-- that  info came only after the  tumor was taken out and the path report finally came back.      (It turned out, I am lucky---  My relief is totally justified because my cancer ended up being low stage, medium grade and can be treated with hormone therapy plus radiotherapy, NO chemo.)       I hope that whatever future cures you need to affront will not be too hard on you, and that you find friendship and support here in our little group.

Couturehw, You're in totally the right place!!      This is a very welcoming, supportive, caring  group of friends, always open to new "membership".    Although our group is fairly small, it is diverse, active, and has people that have had all sorts of different issues and specific bc diagnoses, and undergone all sorts of different treatments, so you're likely to find someone here that  has something helpful to say about the things that concern you.     Of course, there are other bco threads where you might find more people that can address specifically some specific topics, and you'll probably want to check those out too, but we hope you'll feel at home here and consider this your support home.    

I had my lumpectomy the day after yours.    I've been a lot luckier than you, in that my pain and soreness is almost completely gone now.    Wow, surgeon must have had to "beat" and dig  you up pretty bad if he told you from the start that you would remain swollen for 6 to 8 weeks!   I agree with the others that it's a good idea to check with the surgeon's office just to make sure that the amount f pain you're still feeling now is normal and doesn't require a check-up.       Hope you start feeling better soon!!    I can confirm that it's normal for the area around your scar to be hard.    

Quilt, That's a happy and very understandable explanation for your "swelling"!    When the scenery changes and the normal landmarks are gone, it's hard to understand what you're looking at, and bumps look like mountains.      I think anyway it's good that you went to see doc to make sure nothing serious was going on.    And anyway, he took out that fluid that was built up.   

Sunflowercat, I'm glad you got to get out and have fun with the kids, and enjoy it!!!    I'm counting the days until your shower too.   (Not that you smell, just that mine felt SSSSSSSSSOOOOOOOOOO  good, and I didn't need to wait nearly as long as you!)

Sassy Seven , Good luck with those rads!      I'm sorry they're starting to give you issues.    

Ally, Well- Nerve damage wouldn't be nice, but it sure is better than that alterative that has been scaring us all out of our wits!     Hoping so hard that both scans show that that can be the only explanation-- and that then it turns out to be TEMPORARY AND ON IT'S WAY OUT THE DOOR!!!!!!!!    And in the meantime, hope they find some solution for the pain.    HAVE A WONDERFUL ANNIVERSARY!!!!!!!     Oh forget about catching up here for a few days--- Snuggle up with hubby!!!!     

We'll be looking for your report on Monday to learn what onc tells you, but hoping that after your visit you'll be busy having another celebration (of relief!) or getting some much needed rest.    Whenever you want to talk to us, we're here.

Couturehousewife

thank you all! I'll give a call on Monday, but my fear is that's it's normal and will just be a slow process to heal. I'm doing a 5 mile walk for BC on oct 5 and I'm hoping to try and make most of it. I've been trying to be good- not doing anything more strenuous than blow drying my hair every so often and lifting the remote.  My fear- that this may prolong my next course of action bc this isn't normal. DFCI is coming up in nov and I don't want them to reschedule! Also, if I'm being honest, makes me incredibly fearful if doing the PFBMX. Gulp. 

Also- anyone have any expertise in this- wondering if I'm more sore now as I'm ovulating. Could be adding to the swollen factor hence hurting? Thoughts? 

ganzgirl2010

Allydp ..I hadn't seen any posts from you in a bit (unless I just missed them, this is a busy thread !)  and was glad to see that your doing ok...happy anniversary ! My pain is slowly but surely getting better (or I am just learning to live with it)...daytime pain seems to be a bit better but night time, especially when I try to go to sleep is still hard. Cant get comfy ..I CANT WAIT to get these TE's out of me. My appointment for the pain clinic is this coming Tuesday and Im seeing my PS the same day. I really hoping Im not in so much pain that I cant get a fill. I haven't had even ONE yet But on the up side, Im not stuck on the couch ALLLL day lately..I have been able to finally do a little lite house work

Coutoure..welcome ! I am being treated at DFCI..they are awesome !! I had a lumpectomy in march of 2013 and I remember being sore for about a month or so (my memory isn't that great) maybe a bit longer.

 

 

Imheretoo

Couturehw, how many lymph nodes did you have taken out?    Just a 1 or 2  sentinal nodes or did they take out additional lymph nodes?   Did they have to dig  into the chest wall muscle??   (When you say "deep", do you mean deep in breast tissue, NEAR chest wall, or did tumor invade chest wall muscle? )     If they didn't dig or scrape into chest muscle (beyond taking just the upper membrane of the muscle),  I'm having a hard time understanding why you're swollen on your back (...unless you actually fell off the operating table and they didn't want to tell you???)   What kind of "turning" did they have to do to you on the table??)        And the level of pain and incapacitation you describe just sound like too much for a partial mastectomy  (although maybe that's just because I was very lucky in my surgical reaction and healing, and I don't really understand what you other lumpectomy/partial mastectomy people are going through.)    Just starting to wonder if this "swelling" is the beginning of truncal lymphedema???     Did/do others here have swelling on their back???   I know that lots of the people here have lots of long lasting pain after the breast surgery, including back pain, but Couture didn't have any reconstruction (which seems to account for a large part of the big post-surgery pain discussed on this board) -- just a "deep" lumpectomy.    

http://www.lymphedemablog.com/2011/10/05/lymphedem...

I understand that they usually talk about lymphedema only for swelling that persists after 3 months after surgery, and that seems to be because (as this article - which confirms Couture's bs' prediction-- states) swelling up until 3 months is considered a normal breast surgery consequence-- but I guess the lymphedema starts earlier anyway (??) -- just that until 3 months there's the simpler explanation of normal post surgical edema (??) 

If it's just severe post-surgical edema, Couture, did you get drains inserted for edema fluid drainage when your surgery was done?     If not, could it be that the breast edema fluids are running to your back?   

I'm glad you're going to call the doc on Monday.

i

Couturehousewife

I didn't have any nodes removed- a "simple" lumpectomy. No drains either.  It was very close to chest wall. The back pain is more of the end result of the deep ache. Feels almost like a through and through. 

My mum thinks it's because I'm so small- that there isn't much space to move around in there ( AA cup , 98lbs 5'3 ) 

ganzigrl- I'd love to hear your experiences ! PM me! 

Also- I had a through look tonight- and while part of my scar is looking great! The other is still stabbed- and I tried to touch it and see if it was close to coming off- and I'm convinced I see/ feel a teeny tiny sliver of white string? Could this be the staples still? 

Is it Monday yet? At least the pain doesn't require meds, just ice seems to help. Small victories.  

Cheers girls- again, so happy to have found you. 

natalyamacneil

Hi IMHERETO... I was wondering why I hadn't received any replies to my first post, so thank you for acknowledging & including me in the conversation! I hope others  have been able to read it as well.

Allydp -- I can tell from your photo that you have such spirit. And you look absolutely GREAT in that photo.

Re. post operative pain  --  after my August BMX with tissue expander surgery (by the way, how do I get on that list above?), I was really in a lot of pain. I slept 15-18 hours a day & took painkillers for over 12 days.  Then my pain began to lessen considerably, bit by bit each day.  When I began with the saline injections, i a different kind of pain was acute for the first couple of days after each injection, & then I was good. So the pain element has gone up & down for me. When my PS's PA saw how much pain I was in post-surgery, she explained that everyone is very different (we all know that, right?), & that I shouldn't be too concerned about it or compare myself to others for those whose surgery seemed much less painful. But of course, I did check it out with her first to see if that level of persistent pain was something "abnormal."  We've all read about or know someone whose recovery trajectory was quite different from ours, even if we may have had the same surgery. Though the initial post surgery pain was awful,  when tucked into bed I felt surprisingly peaceful because there was nothing I needed to do in the world (i.e no need to meet any demands or expectations) except rest & heal. Ffortunately all the meds made me extremely sleepy as well! In a way it is a little more difficult to deal with the saline injection/tissue expander pain now, because I am so much more active & mobile,  yet not strong or healed enough to be anywhere near my "real" self.  The nurses at my breast clinic keep reminding me what a huge surgery it was, & that it does take a long time to recover fully. A little frustrating to be sure, but I count my blessings every day.

Imheretoo

Natalya, Allydp will add you to the list.     She's under lots of stress right now, and she's got a nice celebration tonight, but I'm sure as soon as she has a chance to catch up on the posts she'll add you to the group list.         You need to pamper yourself for a while now and heal!!    

(Don't feel bad about the slow responses to your post--    Some of the people posting in these days have big issues going on and just skimmed the posts without being able to read and comment on all of them.   ..    Others in group don't check in every day, and  they'll give you a delayed welcome, I'm sure.    Couture's post got noticed and I think others saw the reponses to her and so knew she was in, but your post got a little lost, I think, but it will get re-found

Couturehw, Sounds like the backache is due to muscle contractions you're doing in response to the strong breast ache?    I'm small breasted and little too, and I actually figured that was the reason I got off with so little pain---   And my tumor was right against chest wall too (but didn't really have any choice in being that way, since my breasts are small-- It was "deep" but superficial at the same time!   Also I got no drains.     My surgeon said small breasted people usually don't produce a lot of fluids and usually donì't need them, and I didn't.    (Unlike you, I got two lymph nodes removed, through a second underarm cut)   ---But you've got all that pain anyway!    Like Natalya says we all respond differently to surgery and can't compare ourselves with others.        I didn't get any staples, ust stitches, so can't comment on that.     

Ganzgirl, Glad you're feeling some improvement as for pain, and hope the pain clinic helps you find solutions for the rest of it!   

Couturehousewife

update- sent the photo to a friend who's a doctor- and she thinks it's the vicryl suture that is sticking out- the white thread I mentioned- it should have dissolved already but most likely means my stitches came off to soon. Will have a def answer when I speak to BS on Monday 

Imheretoo

Couturehw, That makes more sense.   Was thinking last night after I got in bed that they couldn't possibly have put a metal staple on the inside of you, and was wondering myself if it was an internal suture string.  (but reading back now, I realize I probably just misread your earlier post when I thought you were talking about a metal staple, and that you did call it a white string!   I saw "sliver" and read "silver")

bobogirl

Couture, that has happened to me too with the stitches, more than once.  Don't know if ours is exactly the same situation, but the PA has always offered to 'clip it' when I came in for a check up.  Sometimes they pull it out, though.  It has never hurt to do that.

quiltlibrarian

Hello Natalya I reread your first post again, and thought about all the tests and biopsies and trying to find information. Then when I finally got my diagnoses and then had to make the choice of lump or mastectomy. My choice the mastectomy after I told the bs I was at peace with the decision. I hope that your pain will be soon under control.

I have to admit that after reading about getting te and exchanges. That the thought of going through reconstruction freaks me out. I think that you ladies that have done so are very brave.

Hugs to all

Gramof2boys

Hi girls! Checking in - had R prophylactic MX with bilateral hip flap reconstruction on August 20, feel good but still not much energy. I return to work tomorrow,1/2 days for 1 week, so hopefully I will get more energy. I will have my stage 2 in December and then will be done!!! Hope everyone is on the road to recovery!! B

Imheretoo

Great to hear from you Gramof2boys!     Glad you're recovering well from the surgery!    YAY for seeing an end in sight of surgery and sure hope that means a forever end to  treatments as well!!    Enjoy your return to normality, and I hope your body collaborates and gives you back the strength to deal with all that work requires from you!!

ml143333

Ally - thinking of you today and hoping for good news!

Natayla - welcome to our group.  Sorry we didn't all respond to you at first.  I was out of town in Maryland for the weekend totally tuning out from all electronic devices. 

Couturehouse - welcome to our group.  I hope that your pain will lessen over time.

Sunflowercat

couture - Welcome! I had a stitch in my node excision that drove me absolutely nuts. My PS snipped it and it healed right up and quit bugging me. I hope your BS has an answer for you tomorrow.  Also, I have a question.  I don't know much about lumpectomies, because I didn't even entertain the idea, but why didn't they do a lymph node dissection? Your siggy doesn't say what type of cancer you had, but I'm sure that plays into it.  Just curious, especially since you're so young.

Natalya - welcome to our little family. Some of use do tend to skim through and reply quick, so yes I missed your post. Sorry. I was like you and used my 5 weeks to prepare like a mad woman. I didn't do it so I could rest afterwards, I just did it to keep my OCD at bay while I recovered. (I had knee surgery in May and was mopping my floors the next morning at 5am). We all do heal differently and I have been really frustrated with the slow recovery process and surprised at the pain level.  At least the pain has kept me from doing too much and injuring myself.  

Allydp - good luck today!  I hope you enjoyed your anniversary dinner. 

Imheretoo

Oh Ally I've got stomach flies thinking about you getting ready to go to your doc to get answers!      Pushing with all my might for the answers we want!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

angelfaith456

natalya - welcome! I, too had a BMX and the recovery has been slow go. Don't rush yourself, it's an serious surgery(any surgery is serious). This surgery requires quite a bit of healing and recovery. I've had 3 fills for my TE's and I really have mountains now on my chest. LOL! I was sleeping and resting so much because I had chemo for 22 weeks before I had surgery. So my body is having to recover from that and my BMX. If you need to take the pain meds, do so. Don't feel bad about it. When your rest and allow your body to heal, you are better off. Sometimes, we women - Moms, wives, etc..- think that if we are not doing something we are failures. I had to learn that the hard way! You will be fine! Enjoy the rest!