April & May 2015 Surgery Sisters
Comments
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Thank you all for sharing your surgery experiences. You have given me so much comfort and hope. My surgery is still 19 days away & as hard as the waiting has been, not knowing has been worse. How much pain will there be? What will it be like to have rubber tubes sticking out of my body? What will I see when I look under the gown? Will I mourn the loss of my breast or celebrate the loss of my tumor? Or both?
Hearing all of your post-surgery stories, all so positive & upbeat, has been heaven sent. My husband is my rock, my support, you amazing ladies are my inspiration. I promise to pay it forward, do what I can to give hope to those having surgery after me.
Thank you just doesn't cut it. May God bless you all.
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Hello everyone! This is for all of you with surgeries coming up. I am 66 years (young) ☺️And have always tried to be healthy and exercise regularly. Still, I got this horrible BC diagnosis. No family history either. So, I was scheduled to have my surgery at a hospital, and was told last week that I was changed to an outpatient surgery center. I was NOT happy. But the surgery scheduler said someone not as healthy as I am (yea, I have BC, but was told I am healthy) Duh! Anyway, I was moved, but if I wanted to put it off and reschedule for later, I could go to a hospital. No thanks. Waiting is the worse part. So I just kept telling myself, "self- you can do this.....take deep breaths and be calm" So, I had a BMX with expanders put in and SNB yesterday. I came home after a 5 hour surgery and recovery room for 3 hours. Not easy, but I did it. My sister is taking care of me. Last night was rough, but take the pain medal and prop up with lots of pillow. I am drinking a lot of water to try and get the anesthesia meds out of me. The node area hurts the most. I had a nipple sparring /skin sparring surgery and my surgeon tunneled up under to remove 2 lymph nodes. Ouch! So, if I can do this, so can you! Getting up to use the bathroom is difficult. My sister pushes me up with a pillow, then I scoot around to stand up and walk very slowly. Any questions I can maybe answer, just ask
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Oh, when I read this back, I forgot to say they moved someone else to the hospital. Actually, I was happy to be in my bed last night and not be bothered all night. Just rest and relax
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lumpectomy 4/14/15
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we are going in to get a small invasive one...hope it hasn't spread to nodes...we are checking that day of. -
Welcome to BCO puppies4evr,
We hope you will find support and information for your journey here on the boards, Keep us posted. The Mods
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RedPorchLady, Getting those sticky bandages off must be a little tricky. You asked if I noticed any changes in my lymph nodes after the neo-adjuvant chemotherapy. Yes! They were no longer palpable. I didn't have any measurements but know that a couple of nodes were fused together when I first started down this path. My MO said that although I had a great response to chemo, I should expect the pathology report after surgery to come back with at least some micro-invasion. Your results give me hope.
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MySunshine48, I was taken back that they switched you from surgery at the hospital to the one day surgery center. You are the second person that I have heard that had to do it at the one day surgery. You are amazing to be able to stay calm when plans are changed. Hope the aches and pains are not as bad tonight.
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well, I have 3 days left before my surgery. I guess I can say i am thankful for the timing of the scheduling. I am in the army reserve, so I was afraid that when I got my diagnosis that I would not be able to take my Physical fitness test. I am proud to say that i took it yesterday and got the scond highest score in my unit, and I am happy to say that I will be promoted because of it. After all that I am 95% ready for this ( I doubt anyone is ever 100% ready to have body parts cut off). I can do this, We all can. Life is 10% what is given to you and 90% what you do with it. Glass is half full for me!. 3 days left... I am axious to start healing and kicking cancers @ss. Be strong my April sisters.
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Great job Shelly!! You are AWESOME!! Good luck with your upcoming surgery.I will be thinking and praying for you.
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Just got a text message that I have an appointment on April 16th w my oncologist. My surgery is April 29th. Does anyone know what this appointment is about?
It only reconfirms that I have bc which I still have trouble wrapping my head around.
Have been pretty calm past few days. Xanax helps when I begin to panic. Which I do silently.
Anyway, I wish all the that had surgery a speedy recovery and for all that await surgery courage and strength.
Lori
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Sisters, thanks for all the updates.
dtorrent, I'm sure you'll bounce back in no time and be out on your board. It's reassuring to hear that it's not as bad as you thought it would be.
Redporchlady, great news on zapping cancer in those 5 nodes that were treated neoadjuvantly. Congratulations on the PCR...happy dance time. It sounds like your husband is taking care of you well.
Metta, you mentioned considering dropping out. Did you get randomized to the ALND group in a trial and the other group participating is undergoing SNB? Is SNB an option for you? Is it just checking SNB and ALND for HER2+ patients with both groups receiving the appropriate targeted therapies? If you didn't have clinically enlarged nodes pre-chemo, and SNB is an option, wow, I personally couldn't proceed. My first choice of PS was involved in a trial for reconstruction: 1) direct to implant with Alloderm or 2) TEs without Alloderm. Although I really wanted him to be my PS, because I was a candidate for direct to implant and I wanted Alloderm, I wasn't willing to take a 50% risk of being randomized to what I saw as the clearly less desirable group. For me, I preferred to avoid the fill process and I believe Alloderm would provide a better aesthetic outcome.
mysunshine48, great job mentally handling that switcheroo. I am scheduled for 1 night at the hospital, but if I am ready to go home same day and I can convince my PS to discharge me, I am thinking of not staying overnight. I know I will not get any sleep with all the beeps, lights and bustling about and would rather be at home. I will be walking the hospital halls and watching Netflix all night.
puppies4evr, welcome to the April Surgery Sisters. The waiting is the hardest. You've only got a few more days, which is a good thing. You'll be joining Outdoorswoman and shelly4321 on the 14th. Since you mentioned testing nodes, I have put you on the the list having a LX and SNB.
Woohoo, shelly4321, 2nd highest score! Great job and congrats on the promotion. You will rebound quickly with your great attitude.
Lmonelli, your MO may want to discuss putting you on hormonal treatment (AIs or Tamoxifen). Have you had this discussion with him/her yet? If that's what your appointment is about, I wouldn't start taking the pills until after your surgery + some recovery time. You are finding it challenging enough handling your dx and upcoming surgery, so don't need to complicate things by throwing potential undesirable SEs from meds into the mix. You want to focus on healing and recovering after your surgery. There's no hurry for hormonal treatment. Your appointment could be for something else, so you can report back and let us know what it was all about. Glad to hear the Xanax is helping you out. Try deep breathing to relax. You are going to be fine.
I have a beautiful sunny day beckoning me outside, so I will drag my sleepy husband out of bed to do some cycling. Enjoy your day, April sisters!
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Sending positive thoughts and healing wishes to MarieJune, patty101014 and Jstme on your surgeries tomorrow. You can do this.
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I spent the entire day yesterday sitting in bed, watching tv or staring out the window, and crying for no apparent reason. Why does it seem like every commercial break has to show some cancer-related commercial when I'm having one of those days? Today my wonderful husband is taking me on a hike to one of our favorite local waterfalls. I'm really looking forward to it. We spend most summer weekends hiking or camping or both; now that bc has come into our lives & brought major surgery with it I don't know how much I'll be able to do this summer.
Question - has anyone started keeping a journal of your experiences? A bc survivor suggested I do that so I started one. But I'm having a hard time verbalizing what I'm thinking & feeling. Just wondered if anyone else was having the same experience & had any suggestions.
MarieJune, patty101014, and Jstme - sending good thoughts & prayers to you for your surgeries tomorrow. You are going to do great. Let us know how you are doing
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Implant removal surgery on 4/8. I had a BMX with immediate reconstruction in 2010. Never found them comfortable and got worse after developing capsular contracture. Not having them replaced, going flat. Been 4 days since surgery, still in a bit of pain and can't wait to have the drains removed. Hopefully by 4/15. Relieved to have the implants out of me and don't mind being flat... so far. I look thinner.
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My first surgery was a lumpectomy and SNB with 2 lymph nodes removed on 4/2. I have to back in on 4/22 for a resection.
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Barbara, wow, you went through five years of discomfort? I'm glad you are happier now. Shelly, you said it best, no one is 100 percent ready to lose body parts, but seeing so many of you go through it gives me hope that I'll get through it, too.
Flutterby, I'm sorry you didn't get clear margins and that you have to go back. My friend had to do the same. It sounds like a bit of a roller coaster, and we are all on a similar one. I've heard it takes a full year for your body to heal, but two years to emotionally recover. I just hope I survive this whole thing. I'm sure all of us are scared.
Downdog, no, I'm not on that randomized trial, though I was offered it, too, and didn't like the odds of being assigned to a surgery I might not need. I was node-positive at diagnosis (noticed a lump in my armpit in August, but my OB said, "This is not cancer" both times I went in to have her check it out). I'm on a trial that gives me Perjeta along with Herceptin both before and after surgery, supposedly to test cardiac safety. Both my surgeon and oncologist recommended SNB and planned to x-ray the nodes to make sure they got the original tumor, which still has a biopsy clip in it. Neither seemed to realize until last week that I'd have to have a full dissection, nor did I sign anything that stipulated that. Technically, the standard of care for node-positive women is to to a full dissection. In a clinical trial setting, you go with the standard of care. However, the standard of care is changing, thanks to neodjuvant chemo, and many doctors will do an SNB if your nodes shrink from chemo, and my tumor is totally gone, according to an MRI. In the next few years, the standard of care will likely change, thanks to the SNB/ALND study you mentioned. Unfortunately, that's not soon enough for me. So I have to make a choice in the next few days: drop out of the trial and insist on SNB (but if I have a positive sentinel node, my surgeon will have to do a full dissection, of course). It has been very stressful to hear about this two weeks before surgery. Lymphedema sounds really depressing, and now I'll have a 60 percent chance of getting it.
Thanks, sorry to go on and on. Everyone sounds so great and positive. MySunshine, I'm so amazed that you were able to write just a day after surgery! You guys are so tough, bad days included. RoosterGirl, I hope your day outside makes you happy. But it's good to let yourself cry, I think. It's a balance ... feel your feelings, but know when to hoist yourself out of the dark place.
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To Marie-June, patty101014, and Jstme, I wish you all the best for your surgeries tomorrow. My prayers go with you. You will get through this just fine. We never know how strong we truly are until we are tested, then watch out!
Metta, don't worry too much about Lymphedema. I had 17 lymph nodes taken out with my first cancer diagnosis and I wear my compression sleeve every day. I am just careful and follow the instructions they gave me. You can also get Lymphedema therapy.
My surgery was on the 6th and all seems to have gone well. I won't know if I will have chemo for a couple of weeks. I get my drains out on the 22nd. This is my second round with breast cancer, so my husband and I know the drill as far as the drains. It is not too bad emptying them but they can be painful. I am using the camisole with pockets and find it better than them hanging by the string, which I did before. My surgery was scheduled early afternoon but I wasn't taken in until after 3:00 so that they did keep me overnight. Of course I didn't get much rest. They had trouble getting my pain under control because I can't take narcotics, allergic to them. I have other medical issues which complicate things, so I did spend another night in the hospital. We live 3 hours from the hospital so we didn't want to leave and then have go to the emergency room at home. I am feeling well, tired, but much better than I expected. Getting up and around helps.
I am happy to say that it has gone much better than I had thought it would. I hope that this helps those of you that have upcoming surgeries. Having all of you for support and reading your different stories did help me prepare for this and will continue to give me strength during my recovery.
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Metta,
In February, I had a mammogram and requested an ultra-sound to check my previously positive nodes as they couldn't see them on the mammo due to location. Both mammo and ultra-sound showed no radiological evidence of cancer. I agreed to the trial hoping that the SNB would be negative and if they weren't then at least I had a chance not to have a full ALND. Fortunately, the pathology for the SNB during surgery was negative for cancer. The surgeon was even surprised as she said two of the nodes were hard but must have been scar tissue. Hoping, you get the same result. MJ
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One tip, to repeat for those having surgery, get fruit of the loom front closure cotton bras, they are available at Walmart and very cheap. Beware, they run small so up size two band sizes, especially if you are above a C cup. I had asked the PS prior to surgery about post op bras and he said that I would leave with a surgical bra. Boy that surgical bra and one expensive one I bought for radiation(seemed comfortable before surgery and probably will be again) were so uncomfortable, I couldn't stand it. They both rubbed the scars. Went out today to Walmart and the $8.00 bra is way more comfortable than the $40 bra.
MarieJune, Patty101014, and Jstme, good luck tomorrow with your surgeries. I know you will be relieved when they are over.
MJ
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Hi Ladies,
Just wanted to check in and first wish those having surgery tomorrow, MarieJune, Patty, and Jstme best wishes for a speedy recovery.
As for me, I got to go prom dress shopping w my daughter today because I won't be able to do it in May. We lucked out a got a gorgeous dress,shoes, and accessories all for under $200!! She was so happy and I got to spend the day NOT thinking of my upcoming surgery.
Tomorrow I see my bs. Have my list of questions ready and I am hoping my DH will be meet me there.
Thankful for a lovely day.
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Lmonelli-glad you had a great day!!
Just wanted to say good luck to those having surgery tomorrow also.
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Roostergirl, I thought about writing a journal, but did not before surgery. Like you, it is difficult to express how we are feeling. Now that I had surgery, I really don't have the energy to write much.
Lori, I had an oncologist appt. before my surgery. Because of the Mammoprint test result, I know I need chemo. She just waned to talk and get to know me a little, I guess. I will see her again in two weeks after the pathology comes back.
To all - surgery was on Friday. Today was worse than yesterday because of the RX for nerve pain and another RX for muscle pain. I am not going to take that anymore. I have Vicitan for pain and an antibiotic. Tomorrow, I am going to try just Tylenol and the antibiotic. I think it depends on what type surgery you have for pain meds. I am trying to walk and sat in a recliner for 2 hours today.
Positive thoughts and prayers to those with surgeries coming up. You can do this! The anticipation of it coming up is worse. Just go with it and tell yourself "I can do this!" It is crumby for us all, but we are strong
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4/22/15 modified radical Right MX, possibly DMX (will depend on BRCA result), SNB. No plans for reconstruction. Maybe later..
Thank you thank you thank you for this thread Downdog and the awesome stretching tips. And thanks to the other "sisters" for all the great tips, I've got a list of must haves going that I would have never known to do without you. This entire site is a Godsend for this type A control freak!
One question for those already past this point. How soon did you travel? Like a two hour drive.. I have an important baby shower/family reunion (that I am hosting at my mother's house 2 hours away..gah!) on 4/25, 3 days after surgery. Invitations were mailed before the surgery date was set and I have a dear cousin flying in from Denver [I'm in Alabama] that I haven't seen in a year. In other words I HAVE to be there. Any tips for a better car ride experience ?
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Thank you for the well wishes, ladies. I am surprisingly ok. Ready to get through this next leg of the triathlon... I check in at allegheny general in Pittsburgh tomorrow at 8
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In 36 hours it will be BMX surgery time. I'm not really worried about the surgery, it is what it is and I can't change it, plus I want to live a long life. I have a new PS that I met on Friday, I really like her and know she will do amazing work, and will do the reconstruction the no later than middle of June. My first PS kept changing the surgery day (even my MO was getting upset) and if I should loss weight first, which the new one could care less about. However, since I was thinking I was waking up with my new foods and now I'm not(GS and PS operate in different hospitals) I am very concerned about the first time I look in the mirror and the first day back to work. Any advice about what to expect mentally and what to where for those week?
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hello all
wishing the best tomorrow for MarieJune, Patty101014, and Jstme
littletatas - i live 1 hour from the hospital and the ride home was fine, 3 hours might have been difficult, but if you can lie the seat back and snooze it might not be so bad, staying awake at the party would be difficult for me with the pain meds, so since its family they will understand if you need a nap during and after, maybe you could stay the night before returning home.
im following my stretching exercises faithfully hoping to ward off any lymph complications, sometimes i catch myself reaching with the wrong hand and have to re-think how to do things.
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Littletatas, This is my 3rd day posts BMX with TE and SND. I could not travel 2 hours and do shower today. But that's just me and I do have a high pain tolerance. Plus, the pain Meds cause me to be dizzy and nauseous. But, everyone is different. Good luck
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Welcome to our latest April sisters, barbara510, flutterbykisses and littletatas.
RoosterGirl, I hope you had a great day hiking to the waterfall and it took your mind off bc. I think journal writing helps people vent their emotions and feelings that they may not be able to communicate verbally to someone. If someone has pent up emotions that they can purge by writing, then it's an avenue of expression that acts as a coping mechanism. Look at the women who blog about their experiences. Great if it will help you and even better if you have a sense of humour...who knows, some even get book deals. If you are struggling with what to write, that sounds like it could be stress-inducing rather than stress-reducing. If it doesn't flow, I wouldn't pursue it. What's your gut feel - would writing down your thoughts help you? For me personally, journal writing is completely unappealing and would not be the least bit cathartic.
flutterbykisses, you're our double April surgery sister. Sorry to hear that you didn't get a clear margin the first time, but the re-excision will be easier than your LX, since you know what to expect and you've already had a SNB. My re-excision was a month later and there was still lots of inflammation internally from the first LX. The healing process takes a long time.
Littletatas, a fair number of women have to travel 2-3 hours to their hospitals for surgery. They have a long ride home from the hospital, but are resting or sleeping upon their arrival. Would you be able to travel the day prior to the shower/reunion and stay overnight at your mother's? Don't set the bar too high as far as expectations of yourself with respect to hosting duties. I hope you have a backup plan for someone else to take on primary hosting responsibility. Everyone will be happy to see you and will be understanding.
Outdoorswoman, it's difficult to prepare yourself mentally for your new appearance, as well as pain and potential physical limitations, especially since you have chosen recon, but have to wait a few weeks for it. You have probably already looked at photos of no recon mastectomies with the same incision type you will receive, so you will have a good idea of what you will see when you look in the mirror. Have a good support team of family, friends, professionals; whatever it is that you need to help you through this. Since you are concerned about seeing yourself in the mirror for the first time, I would suggest having someone with you for support. I have read about some women covering the bottom half of mirrors, so that they could only see their faces, because that's what they needed to do until they were mentally ready. Everyone is different. Do what you need to do to help yourself recover physically and psychologically in the best way possible. Visit the no recon threads for suggestions on what to wear and emotional preparation. They may have ideas of how to wear what you currently own without investing in new wardrobe items for such a short period.
DayLily15, glad to hear you are working on your stretching exercises. Interesting, but logical, that you have to be consciously aware in order to not use your surgery arm. No more autopilot.
Lastly, but most importantly, best wishes to Outdoorswoman, shelly4321 and puppies4evr with your surgeries tomorrow. Dig deep within yourselves for strength - you are stronger than you think. It will soon be over.
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Littletatas - my ride home from the hospital was 3 hours and I was just told to get out of the car every hour and walk around for 10 minutes. I was told to use my right arm just nothing repetitive. They want me to use the arm to reach for a bowl or cup and when I shower to put my hand behind my head. Otherwise I am to just relax and heal for 10-12 days. I had surgery the 6th and feel good. I sleep a lot (which could be from the 5 months of chemo and my body still healing from that too) and with the ALND my right arm does hurt to move. The Pink Ribbon Mentor's at the cancer clinic gave me a special pillow to put under my arm when traveling. I use it when sleeping or sitting for a long time too.
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