August 2017 Surgery Group
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Glad to see everyone's updates here and will keep checking back for more as time goes on.
LisaBS, looks like you're using a full arsenal against your cancer as I am for mine. My doctors wanted me to have chemo first, so I got six infusions every three weeks between late March and early July. in March I also began a course of Herceptin infusions that will take a full year to complete.Then came a unilateral mastectomy on August 28. At that time the surgeon also saw I needed two layers of lymph nodes removed; two of the 20 that were removed proved to be positive for cancer. These had not been detected in prior imaging. Sometime in October I will start radiation of the chest wall and axillary lymph node area. The simplest part of my treatment will come last-- taking an AI orally for the rest of my life. Life can be "fun" for a triple-positive girl! I agree with all the others who say chemo is doable no matter what complications may arise for you along the way. My doctors were very good at addressing my side effects whenever I reported them. The key thing is to report them, even when you are tempted to think, oh, this is nothing and I can just power my way through it. Nah, save your energy for more important things. Get the help you need when you need it. I wish you all the best, Lisa, and hope to keep reading here about your progress.
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PS I got intrigued by the mention of lymphedema exercises on YouTube and found this one:
https://www.youtube.com/watch?v=mnO02bKMLkAThey look very similar to some exercises my surgeon recommended for me. She also is planning to have me meet with a lymphedema physical therapist soon. I don't have any symptoms of this yet, but she wants to be proactive with me.
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my double mastectomy was booked for 4 hrs took him under 3.
Back from ER all ok the leakage from the Surgery site is ok.. No infection. Its acutlly making my body happier.. Swelling going down. Not sure why i was nauseous.. Anxiety im guessing. Still having dizzy spells looking down no one can explain it.
As for chemo... I dont know my files are at the cancer center now... My MO will call soon for an appointment.
My surgeon suggested physo and massage at 6 week point.
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Glad no infection MrsWinnie,.. Possible you still have some lingering effects from anesthesia(dizziness)? I read somewhere that it can take quite some time. Allergies that your tubes in your ears may have fluid? Maybe massage therapy will help. Feel better.
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Hi All - Yes, lets drop in so often to keep In touch. Great tips are shared. Funny that MRSWinnie (sorry u had to have more surgery) but when you mentioned having Phantom Pain in your Nipples - I had to laugh - it happened to me - middle of the night. Wishing you healthy recovery MRSWinnie.
I started PT today since I'm behind with my left side due to that pesky protruding tube. I think she's trying to kill me - just kidding. I've got a lot of catching up to do. Drove for the first time today - Exhausting.
Incisions - My Doctor did not recommend anything special to apply to my incisions to help the healing and scarring and scar tissue - Any Tips out there besides VIT E and Coconut Oil? Its been 23 days since surgery and my incisions hurt so bad I can't touch them - anybody else in this much pain? My Doctor says I'm just doing 'fine'.
Will find out next week treatment course of Chemo /Radiation after Pet Scan.
AliceAgnes - we are triple + girls. Interesting that your treatments were divided up. I'm realizing that nothing is normal in our world.
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im 3 weeks i cant touch my chest.. Below isnt bad but top theres no touching.. Yawning hurts too lol draw your lips down to one side... Your chest rises up... Hurts crazyyy stuff. Scars my surgeon wanted me to wait 6 weeks for adding vit E to my scars..
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Hi all - I've been gone for awhile! Back to work full time and the crazy pace of life. It's great to read all of your updates. I have cording, too. PT is really helping, but it takes time and a lot of hard work stretching! I celebrated the end of my treatment with my family after I went over the pathology report with my BS. I was so happy to have clear nodes. I followed up with the MO and I'm trying Tamoxifen ( so far so good). Then I met with an RO thinking they would tell me I was good to go, too. But the RO is recommending radiation because I had a positive margin on my BMX path report. The surgeon dismissed it and said the tumor was at the edge but she took it all...i wasn't expecting them to disagree. So, I'm back at making a hard decision. I don't want rads and I've moved forward mentally, but if risk of recurrence is greater after all I've been through...? I just don't know! I'm waiting for a call back from my surgeon and I'm going to request a 3rd opinion.
Praying for you all - one day at a time!
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First time posting but have been following for awhile.
I was diagnosed in May at 36 years old. My dad was diagnosed and had a mastectomy 5 years ago. Four of his five sisters were also diagnosed, with one aunt passing away at the age of 35. Our family tested negative for BRCA genes..go figure...
Beachmama- Seems like we have a lot in common. I also had BMX on August 8th. Path report showed positive margin. Just had a second surgery yesterday (9/12) to attempt to remove the stubborn tissue. Hoping to hear results by Friday. If margins are clear, I'll be able to avoid radiation. My MO was adamant initially about Tamoxifen, but seemed to backtrack during my last visit. Said it would only increase survival by 1%? From what I've read, I feel like it would be irresponsible not to try it. I see her next week and will hope for more guidance. Good luck to everyone, and praying for speedy recoveries.
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MamaBear,
Welcome to the club nobody wants to join. That is some family history, sorry to hear that. Did they do an OncotypeDx test on your cancer? I would ask the MO what she is basing the 1% on. Hope all comes back clean.
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AliceAgnes, thanks for the YouTube link. That is the same video I've been using --from the Haven in London. I like their approach. Similar to the exercises I got from my hospital, but I like the sequence and the emphasis on repairing the lymphatic system.
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I am 3 weeks post surgery for a bmx and reconstruction ( had on aug 24 - DCIS disgnosed). Burning sensation like a sunburn or shingles and pain like wires tieing me up (expanders? I got first fillers today for reconstruction - pain, pain! any suggestions to alleviate? i still have vicodin left... will that help me sleep... ouch! thx for any tips...
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MRSWinnie - I wish my BS would have said either Yes or No to Vit E. She just said to use what "lotion" you normally use. well, I have a heavy duty regiment of all kinds of creams due to skin disease. Maybe I'm over-reacting. I've been doing that a lot lately. I'll hold off on the VIT E and just use AQUAPHOR & EUCERIN - that is part of my 'normal' routine.
Anyone else Using anything on their incisions yet? (to reduce scar tissue?)
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So nice to hear from old and new names!
About the incisions, I saw my PS yesterday, and she encouraged me to start to use a silicone gel on my incisions twice a day since she took the glue off of them yesterday. The one I got from her is called Biocorneum Advanced Scar Treatment made by sientra. I am 3 weeks out and started using it today. She said that it is the best one in her opinion, but it was not cheap at $73. If it reduces the appearance, I won't regret getting it!
Mamabear80 - I would ask if she meant 1% survival or 1% recurrence; it's an important distinction. While I love and respect my BS, I found she often focused on the survival statistics and not other statistics that were just as important to me, like percent chance of getting invasive cancer (I am LCIS).
Someone asked about length of BMX - my surgery was BMX plus stage 1 reconstruction with tissue expanders...scheduled for 5 hours, lasted 5.5 hours.
MrsWinnie - I'm so very happy you don't have an infection! I made an audible sound when I read your post about being in the hospital, so glad it turned out ok.
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I am 3 weeks out from a unilateral mastectomy and doing quite well. Still tired a lot and some positional pain. I got my oncotype score yesterday- 11. I was very excited. I think this means I can skip chemo and just do tamoxifin. No radiation either because I had clean nodes.
Like cyclegal I am also going to be given Biocorneum Advanced Scar Treatment for scars although I'm going to look for an alternative because when I checked the ingredient list it is mostly sunscreen.
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The Boicorneum does have about 28.5% sunscreen according to the label (for scars exposed to the sun, presumably...guessing none of us are doing that!), but rest contains their special crosslinked silicone gel, which is what helps reduce the appearance of the scars.
rokel, great news about your oncotype
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Cyclegal Hi! I am asking you about the Biocorneum Advanced scar treatment you mentioned. where did you get this? I googled it and its all over the place and don't want to get the wrong thing. I am assuming (?) its OTC. Did you buy it locally or had to order over internet? Thanks!
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Rljessu, they sell it at my plastic surgeons office but I'm guessing you can find it online too
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rljessu, I also bought it at my PS office. You can look up providers who have it on their website:
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rljessu,
I've been using palmers coco butter and bio oil. Just bought vit e capsules from Vitamin shoppe and going to start using that also. ive had good results so far. Im going to look into the silicone scars strips
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beach2beach and cyclegal - Thank you for the advice, I really appreciate it. I will discuss with MO next week and see what she has to say..
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i was advised to wait to cream up... I mention this because i sprung a leak here 2 days ago and tonight after shower my scar opened more... Glad hubby was here and i didnt have to man up lol i called him in made him be the nurse... Sigh im such a whimp with my scars.. I dont even want to touch myself freaks me out..(not to mention the strange painful tingling, dead spots and shocks) Dont get me wrong i havent changed my mind on staying flat. No way could i go for more surgery. To the ladies doing reconstruction hats off to you. Im way to whimpy.
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Hi everyone,
Sorry it's taken me so long to get back to the forum. I had my surgery on Aug 29 so I'm two and a half weeks out at this point.
I'm happy to read that people seem to be doing generally well. For those of you who aren't doing so well, I wish you all the recovery speed in the world so that those pains, etc. go away as soon as possible.
As far as I'm concerned, they've kept a close watch over me. At the beginning I had to go in to see the PS team every day, then every two days, and on Wednesday I JUST graduated to seeing them once a week. Next Wednesday will be my first expansion. Hoping for not too much pain.
It's been hard to sleep, and when I tried to wash and dry my hair for the first time myself I apparently pulled a muscle so this week I've been pretty much down for the count! Luckily there's a super cheap place to get my hair washed and dried that just opened in the neighborhood right before my surgery. It was like a sign, I swear.
Does anyone else's TE feel kind of like an uncomfortable metal piece shaped weirdly, almost triangular? I'm hoping the expansion will give it a different shape but I'm also scared of the pain.
I've got to be the only person who hasn't seen Game of Thrones so I started watching it. Already on Season 2!
My PS said regular lotion on the scar and breast with the TE to keep skin as flexible as possible, so I'm just using whatever I can use that feels comfortable and non-irritating on my sensitive skin.
Happy to be getting back in the loop with all of you troopers! Any tips to prepare for first expansion?
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Hello AliceAgnes
Thanks for the positive words. I just got home from the hospital after my second surgery. They took my lymph nodes and I got my port placed. My arm pit is killing me. Hopefully it will feel better soon. I keep trying to move my arm to avoid lymphedema. I will start my 8 chemo treatments every other week for 16 weeks October 3 and then do 6 weeks of radiation totalling 33 treatments. My PET scan did confirm I have other effected nodes prior to going to surgery so I will know how many next week. I also have to get a CT of my liver because they think I have a hemangioma but want to confirm. It never ends. It is like a roller coaster ride.
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Sweet Pea, Nope, I've never seen a single episode of Games of Thrones... maybe I am the last person. lol. I went with direct implants so I have nothing to offer with tissue expanders. Even with direct implants and over 5 weeks out I don't sleep well on my sides yet. Feels weird. Back sleeping is awful.
LisaBs, I hope you feel better quickly. Sorry you have had to go through this back to back. Be gentle with moving the arms though. Hugs..
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LisaBS, here is the exercise my doctor had me do the first week after the axillary dissection, twice a day if possible:
Take 5-7 deep breaths.
Lie down flat with 3-4 pillows stacked beside you on your affected side. Place your arm on the pillows so that your elbow is raised higher than your shoulder and your wrist is higher than your elbow.
Open and close your hand 5-7 times.
Raise your forearm until it makes a 90-degree angle to your upper arm, and return it to its resting position on the pillow 5-7 times.
Then keep lying flat with your arm propped up on the stacked pillows for 45 minutes.
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I did this for a week and it did seem to help me get my flexibility back. So far, no lymphedema. On Monday I go see a PT for additional exercises to prevent it.
By combing through many of these message boards, I have come across at least three other people who had 20 or more lymph nodes removed yet managed to avoid lymphedema over the long term, so I remain hopeful for both of us. I'm pretty sure they all took preemptive measures to achieve that result.
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Lisa so sorry you had to go in for a second surgery so soon. Wishing you the best
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Hi Everybody, Beach2beach there are 2 of us left on earth that hasn't seen Game of Thrones. Ha.
I had my Pet Scan yesterday. I still not sure why I had it. My BS said they wanted to conf no more cancer. After reading more on Pet Scans, its seems its more to do with confirming there is more cancer. Again, imagination going wild. I had my lymphnodes diagnosed during surgery, 1 out of 7 were cancer, so the Pet Scan isn't to check my Lymphnodes.????
The Pet Scan was painless and easy. The bed was compfy and didn't have to put my arms above head, thankfully because I can't. They played oldies rock music LOUD, it was hard to hold still because I wanted to tap my toes to the music. As I was leaving I was told to not interact with Pregnant Women and babies for 24 hours. So when I stopped at the Library and saw the huge gathering of Pregnant women and babies I had to laugh. I'll get that book later.
I'm sitting here without my Binder on for a breather. I feel like I'm being bad.
Take care everyone!
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Hi everyone. I hope everyone is doing well and making progress in healing every day.
sweet pea, I had a lot of discomfort with my TE. I know what you mean about that triangle sharp edge feeling. After my first fill it seemed to provide some relief regarding that part. I think it must have unfolded the expander to relieve the area it was pressing against. My first one was a light fill(30cc's). I did have some mild muscle spasms(chest felt tight) but it was not too bad. As far as the fill itself, I was nervous about that being painful, but due to being numb in the chest, it didn't hurt me. I have had a few fills since. None of the fills themselves hurt. The pressure after my second fill was tough because they switched me to a tight binder( to help slow down my fluid production...my drains were in a long time ). The combo of extra weight from the fill, muscle spasms and the binder, were hard on my lungs. Thankfully, in two to three days, things calmed down and my body adjusted. That has been a consistent pattern so far, that after a few days it gets better. My recent fill, I no longer had to wear the binder(yay!) and it was all around easier. Hope you have an easy time with yours and that it provides you some relief. I think you'll be pleasantly surprised that the fill itself is not as bad as the anticipation of having it done. It was the one time I've been happy to have numb chest.
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Beach2beach - when did you start using the coco butter and other things on your incisions - how many days after surgery? I agree with you MRSWhinnie - touching the incisions is strange. the lumps and numbness and it hurts.
I've been rubbing in Aquaphor my PT recommended - such an odd feeling.
Sat night fluid started building between drain site and incisions. by bedtime it had grown and now covered all incision area, so called "on call Dr" he said it was normal. See him on Monday. In the mean time, Bind it tightly and use bandages to compress. I'm going to ask him if I can put some sort of pain cream or Lidoderm patches on the underside of arm near arm pit. feels like rug burn/sand paper. (not where incisions are)
LisaBS - how is your port feeling? hope your recovering well after surgery. sorry you had to go thru that again.
AliceAgnes - thanks for the you tube video. they must be advanced - there is no way my arms can go straight up. Right side is almost there, but cancer side isn't. But something to strive for.
Take care everyone,
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any suggestions. its been 3 1/2 weeks since my surgery. my expanders must be the reason ( yes?) it feels so tight and stiff plus this burning feeling in my chest all the time - like a terrible busing pins and needles - mobility , though tsill hurts has gotten better - with PT/OT stretching exercises - any suggestion on relief/ I've only had one fill and scheduled for more. thanks all!
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