October 2014 Surgery Sisters
Comments
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Thanks so much Sharpei and Fourminor! And thanks for the visual about Barbie boob! I have a mini one with this seroma lol! I am definitely feeling your pain Fourminor and this seroma is like a painful pimple that won't pop! Ugh ;
Thank you so much for the cording info Sandra. I was wondering if that's what I have and I am positive that's what it is now. I didn't have this after my Lx but it is so,painful and does feel like this knot that runs from just above inner elbow to inner underarm on right side. I've been trying to massage it and stretch etc which does help somewhat but doesn't last. The article did say I could add moist heat and that's what I wanted to try but was worried about lymphedema etc etc and heat. I will check with PT Monday and see if I can see someone on Wed when I go for my post op with BS. Thanks again Sandra! Always so helpful and I'm so appreciative!
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Recently we were discussing not being able to read a book in the early weeks after surgery or during other treatment. I mentioned that I would ask some of my friends on the Book Lovers Club thread. WOW. This happens all the time to most all of us. I had no idea. Several suggested this would be a interesting topic to establish as its own thread...so I did.
Please go to the new topic I just created https://community.breastcancer.org/forum/91/topic/new called What's wrong with me? I don't want to read! and either repeat or copy the posts you've made here about not being able to read much or at all after surgery. I'd like to have them all in the same place. The more stories I hear, the more fascinated I am. Please share your ideas as well as observations too. Hopefully someone will either know the answer or will lead us to someone who is studying it already.
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Su: I'm curious, since you had those clear nodes, do you still have to meet with an oncologist?
I hope we hear from Akitagirl soon, thinking of her.
Barbie boob totally cracked me up! Once I get to that point I'll probably op for tattoos.
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Sandra,
Axillary Web Syndrome sounds likely; the cord is right at the site of the SNB. I actually have a pretty good ROM, but I can't get the arm completely straight up over my head and then lean into a slight back bend. That's the motion where i feel most limited. I have an appointment Monday after work with PT.
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Hummingbirdlover, I hope that will come up at mypost op meeting with BS. She's the one who said might need chemo and/or radiation at my Lx post op. I don't know if the 3 positive nodes from Lx surgery are a done deal and nothing to worry about since newest ALND nodes were negative? We will see and I'm crossing my fingers and toes ;
Yes I'm hoping Akitagirl is doing well too.
Fourminor,I know my SNB site was very tight after LX surgery and pulled every time I did the ROM exercises. I'm glad you're getting PT advice. I'm going to follow your lead
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Four, you are asking an awful lot of your body so soon after surgery. Mine was 5 days before yours and I'm still not cleared to stretch like that.
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Sorry one more...
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Cute necklaces! Seriously I must be a wimp because these ROM stretching exercises kill me. The area under my arms and right at the underarm joints are SO tight. I'm doing these 3 times each day, reaching up the wall and holding for a count of 20. That's all my BS has told me to do at this point but I'm sore from doing these. Will I ever get my arms straight up again?!
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Yes. Be patient Grasshopper.
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Fourminor - that is choice! Thanks for the laugh!
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evening ladies I've been catching up or trying to. The support I've witnessed in the last couple months is amazing!!!
I went for my appointment with breast cancer surgeon on Friday and I didn't get the news I am being sent to an oncology team next week. I have clear nodes all 4 sections were filled with DCIS and IDC so it's grade 3 and he referred to it as an aggressive little guy of 1 inch. I'm also HER2+ pr/er+ He mentioned my nodes being clear are a good thing but I feel very deflated .... I had childhood cancer in the 80s and kidney cancer in 2010 soooo I'm very limited with the type of chemo I can have that I'm not resistant to. It will be interesting to see what cocktail they offer me. I'll check out some other boards on here for IDC and see if I can find a group as great as all of you! Also I'm going to check out the book club it's a great idea ATIKA had!
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Oh Swoobs. I'm so upset for you.
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Swoobs, I hope you get some good news soon--like oncologists having a good plan for you. Your third different kind of cancer? You are already a warrior.
Fourminor--I about died with those boob necklaces! There's something for everyone out there
Now, if I could just get a little bit closer to Barbie's waistline, just a tiny little bit...Sandra, thanks for the links about cording etc. Will go explore some of them now. I don't like that my underarms (really, the side of where my breasts used to be, or upper ribs) feel so puffy all the time. I had just one node removed on each side. Hope it's just a matter of time and nothing more, but reading will help me feel better about it.
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Swoobs, I'm sorry you didn't get the news you were hoping for and I understand how you feel. Mine went from grade 1 to grade 3 after pathology too. I'm also sorry you've had to deal with cancer before, that sucks! I know nothing about chemo but research has come so far and I just hope the doctors will have a good plan for you. Negative lymph nodes is good news! I'll be praying for you for peace and hope. ((Hugs))
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I had a lumpectomy on October 23.....and then a seroma accumulation....and then it drained 2days ago on its own . The surgeon removed the steri strips and cleaned the wound after the drainage . She packed the opening and instructed me to do the same thing daily and return for a check up next week. I'm freaking out somewhat....worried about infection, pretty terrified of the gaping wound now that I can see it in the mirror to tend to it. I was on my back when the dr was doing it.
Have any of you been through this self packing? I understand the principle behind letting it heal from the inside out, but this is so so scary to me
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Fionascotti, is it possible to get a referral for a Visiting Nurse to support you here?
My insurance pays for the nurses who have supported me on an as needed basis. The doctor had to order it initially. My surgeon pooh poohed it but my plastic surgeon suggested it. These women have bailed me out several times when I felt overwhelmed with my care and alone.
I hope your confidence and skill will grow quickly with this. I'm sorry. Every day I seem to learn about another complication that can happen during these breast cancer treatments. It is such a bumpy road.
Good luck.
Sharpei
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thanks for the suggestion, Sharpei! I'm going to call and talk to my 'nurse navigator' first thing in the morning and see if she has suggestions. If not, I will call the surgeon and ask for some guided supervision at least once to make sure I'm doing this right. My husband offered to do the packing, but I can't go there! He's going to pick up some latex gloves so at least I'll have another germ barrier. I have been washing my hands with hot water and soap and then pouring alcohol over my fingers before handling any material. But I have several fingernails that are threatening to 'lift off' after chemo, so I know the alcohol isn't helping that!
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Looking at myself in the mirror today while stretching and comparing side to side (advantage to having unilateral mastect), I'm pretty sure the thick firm cord I am seeing is the pectoralis minor tendon. That fits with the action that I am finding most difficult, which is stretching backwards with my arms overhead. Since I had not issues whatsoever with this action doing yoga for years after my prior RT, this may not have anything to do with that. Assuming the TE is behind the pec minor (will have to ask PS), that may be what is troubling me. Have PT appointment tomorrow evening.
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Hi All, Hope everyone is doing well.
Swoobs, am sorry to read your news. Be sure to join the Triple Positive thread on BC.org. SpecialK is there along with other nice women and you'll be welcomed. My Her2 status was studied three different times by three different tests and it's been determined to be negative. The invention of Herceptin has been a lifesaver for Her2 cancers though, so thank goodness for that. I'll be interested in hearing what your protocol will be.
I also saw my oncologist last week and even though my largest IDC cancer was an inch she said my tumors were well differentiated. She explained that some larger tumors are well behaved and slow growing and some small tumors are aggressive and grow quickly. She sent my cancer for further Oncotype testing and depending on those results I may not have to take chemo. I'd already been told that I would need chemo by the surgeon, so that was a welcome surprise. I'll know for sure in 10 days.
How is everyone healing and to those with immediate implants, how are you doing? I was told it was too early to start massaging the implants and am still bandaged and not allowed to shower. Two more days and I can't wait!
Welcome Fionascotti and good luck with your nurse navigator...Hope you get some good instructions.
Bright Blessings...
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Fionascotti- I have an open wound under my foob. My husband has been cleaning it an packing it with no problem. I clean and pack it myself when he travels. Once you get over the creepiness of it all it isn't bad. It takes a long time to heal, like 6 weeks. But it will heal. Good luck.
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Sharpei: I hope all went well with your surgery! Your posts sound strong! I hope we can meet for coffee or whatever. Just PM when you feel ready. Lis
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Ocean, I've only read of two other women who were told to massage their implants. The vast majority of us are given the opposite advice from our PS. I know massaging is something often advised for those who have augmentations (boob jobs) so I wonder why a few docs advise it for "our kind." I'm a month out from my latest surgery, still not healed inside, have new 410 gummy bears, and even the thought of massaging and moving them around on my chest sounds unpleasant and frankly, painful. There is absolutely no way I could have done it after my BMX & Direct to Implants. The underlying wound was far too extensive.
Four, I truly think you are expecting too much to be able to raise both arms over your head at only a month post-op.
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Good morning everyone!
Well - this weekend has been a challenge. The surgery on Friday was fine, but they really had a difficult time getting my pain under control and didn't release me until 9pm. However, I was starving so I made hubby take me to Old Chicago's for my favorite pizza and even had a sip of his beer. :-) I know, crazy...but it hit the spot and tasted really good. Funny thing was that I was so whacked out on drugs, I don't remember a thing I said. Probably a good thing.
Slept most of the day yesterday and then spent a lot of time reviewing my final path report from the bilateral mastectomy. Wow. It looked pretty cruddy and now I see why everyone is anxious to get going on chemo and why my BS was so quick to get me in for the ALND. I still am doubting my decision, as my armpit really hurts, feels like there is a boulder in there and the upper part of my arm is numb. Part of me will be really upset if they find no other positive nodes. However, my BS reminded me that if the do find more than 2 more positive nodes, then I will have to have radiation anyway. Geez. Also on the report, the grade of the tumor went from 1 to 2, and they found not only IDC but also LCIS in both the left and right breast. So, like many of you...it was a good decision to move forward with the bilateral mastectomy.
You won't hear this from me often, because I am a tough cookie that has been through a lot in my 42 year life....but I am very scared. Fear has started to creep in as I look to PET scans, CT scans, colonoscopy, kidney/thyroid/endometrial ultrasounds, probable hysterectomy, etc, etc. There is a song that keeps coming to mind, as even though I love my family, I am beginning to look forward to
Going Home by Sara Groves:
Ive been feeling kind of restless
Ive been feeling out of place
I can hear a distant singing
A song that I cant write
And it echoes of what Im always trying to sayTheres a feeling, I cant capture
Its always just a prayer away
I want to know the ending
Things hoped for but not seen
But I guess thats the point of hoping anywayOf going home, Ill meet you at the table
Going home, Ill meet you in the air
And you are never too young to think about it
Oh oh, I cannot wait to be homeIm confined by my senses
To really know what you are like
You are more than I can fathom
And more than I can guess
And more than I can see with you in sightBut I have felt you with my spirit
I have felt you fill this room
And this is just an invitation
Just a sample of the whole
And I cannot wait to be going homeGoing home, Ill meet you at the table
Going home, Ill meet you in the air
And you are never too young to think about it
Oh oh, I cannot wait to be going, to be going homeFace to face, how can it be?
Face to face, how can it be?
Face to face, how can it be?'Cause this is just an invitation
Just a sample of the whole
And I cannot wait to be going home -
Good Morning!
Sorry you have to wait some more Swoobs but glad they will have a plan in place for you next week. So happy your nodes were negative!
Sorry you are going through this Fionascottie. I understand how painful it is. I have developed them too. My PCP didn't tell me that it would need to be packed just that the body would absorb in time. I can't see how at this point but do they drain it when it gets too big and thus the packing. I will talk to my BS at post op on Wed.
The cording is an issue for me as well Fourminor and I had UMX right with no recon. This feels different than Sept surgery. I did well to recover ROM after Lx but this one is tough. Sooo painful to do stretches etc. but am trying to be patient. I guess the seromas don't help either though.
Hi Akitagirl! Thanks for the lovely post. Sorry your recovery was so painful. I had same issue after this last surgery so maybe ALND related
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Akita,
I'm so sorry. The lyrics are beautiful. But you are not going anywhere just yet.
It sucks. It totally sucks.
I was crying myself tonight. I'm in some serious pain.
You just have to take it one step at a time. Stay with the step you are on.
Good night all.
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oceansky not sure what thread to look at ....I don't need her2 triple .....I don't know yet what treatment I'll accept or be offered....so I'm just reading a bit here and there trying to see where I fit in. Who all from October sister has to have herceptin, chemo, tamaxofin??? Also anyone in here who has IDC grade III? On top of it all my alloderm/implant stitches gave way in one area and I need a quick revision to lift her up....not a huge surgery but PS won't obviously touch me once if/when I begin treatment....UGH I can't win these days! I've been massaging my implants since day 3 (I don't have gummys) my PS huge believer in it...I was told for 6 weeks TO MASSAGE AWAY...,,also to massage the pec and underarm since weeks 3 to think of it like tenderoriIng meat gotta tell you I have no pain or swelling there. and every fri I went to his clinic and he would teach me a new technique and give new bra instructions. Feeling so low and disappointed that I have to start the whole entire decision process all over again.....the descions about surgery damn near drove me to a white jacket, now I'm afraid to think what these choices might do to me. I cannot read, relax, eat, sleep, think or breath since my appointment. I just did not think I could get a primary cancer for a third time......
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Swoobs
Like oceansky, I'm waiting on an oncotype score to determine if I'll need chemo or not. If that number is high I'll have 4 infusions of chemo. I have been told regardless of chemo, I'll be on tamoxifen for the next 5-8 years because I'm hormone receptor positive and premenopausal. My tumors were grade 3 as well but small. The biggest one was 9mm but because of grade 3, we are having the chemo talk even though mine was negative in the lymph nodes. It's discouraging to think about chemo but there are ladies here who have already gone through chemo (before surgery) and threads for those currently going through it and it's just another step in treatment we have to endure on this crappy ride back to wellness.
Akita, I will PM you but I'm glad you're surgery went well and you are a tough cookie! Keep your faith strong and you'll get through this!
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Swoobs, because you are ER+, PR+ and HER2+, it's called 'triple positive'. There is a very active thread on BC.org called 'triple positive', and all participants are. A lady named SpecialK is active on that thread, (as well as many other threads) and has an extraordinary knowledge of BC, surgery and treatments and being HER2+. She's been through more than I can list. It's easy to find that thread and I recommend you chime in and get to know the many women there who are in your shoes.
All the women on the triple positive thread are taking Herceptin or have taken it.
My PS believes in massage too Swoobs, but told me it was far too early to start. I've had my implants for about 10 days and am still bandaged. I'll share notes with you when I get my instructions.
Am sorry you had a break in your incision. When is the PS going to address it? Let me know what he does...I am always concerned about that happening.
Swoobs, hang tight. Find a way to calm your mind and know that this too will pass. We're all in similar situations and we all have to find ways to cope. ((((((((HUGS))))))))))
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oceansky my breast surgeon says because I'm barely ER/PR + I'm not considered her2+++ so that's why I too am confused! I would have assumed the same thing.....because of the all chemo I've already had he suggested the oncologist will maybe suggest herceptin no chemo...my tumour was hiding it did not show on mamm or ultrasound little buggier it's the size of a large pill that's how he described it less than one inch.becauseof the renal cancer....a few yrs ago I won't be taking tamoxifen either....seems to me today I don't have lots of options to help me fight reoccurance...only thing on my side is nodes clean. Also I do t have an opening on my scar I have stitches inside that let loose from alloderm so they just need to be reinforced to lift my boob back up it's a very quick surgery about an hour!
hummingbird thank you for reminding me I'm not alone even though it feels that way....I just want my life back to how it was in June!!!!!!!!!! The BS says here in Ontario it's very unlikely they oncologist will look for onconotyoe test...why I have no idea but I'm going ask about it Friday.
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