May 2018 Surgery Support Group
Comments
-
I forgot to add....for those on tamoxifen I was told I don’t need to stop taking it. I asked my oncologist Friday and they said to as my ps. She said because I am younger and healthy I’m not really a risk of the complications that could come with it in my system. I know that question was brought up a few weeks ago so I wanted to share what I was told
0 -
Thanks everyone for your replies on what you wish you had known.
SLL: Woot woot! Congratulations on upcoming exchange surgery! Keep us posted on how it goes!
So far, I don't mind being flat on one side and if my husband didn't care, I would probably go flat on both sides. The only downside to being flat is that wearing a prosthetic isn't very comfortable and I can't bring myself to wear one when I coach tennis or go to gym- it's still unbelievably hot in Nashville and I figure I'm 50 years old so no one's looking at me anyway, lol.
The surgery to remove my infected TE was 9/4, and the PS never called me until yesterday to say that they had noticed I never came in for follow up and that I needed to come in. I called his office this morning, got a recording (of course) and left a message saying that I found a new surgeon to work with and that I wished him well in the future. I'm sure he told his receptionist that I was a troubled patient or something, but I took the high road and am moving on. I did tell my husband that if I have even one more problem with this bad side, I am going to stay flat on that side. I just want my life back.
0 -
ready- so glad you left that ps after everything you e gone through! They don’t seem very professional!! As far as the prosthesis, a lady that used to work with me had a single mx and would only wear it at work so people didn’t question her (the public can be so prying sometimes it’s crazy!) but now that she’s retired she never wears it! Hates it! Hoping for continued healing for you and that your new dr isn’t anazing
0 -
Holy moly, Batman. I seem to have done a number on myself. Last week was a kidney infection and this week the doc has put me on bed rest with the flu so I don't get pneumonia. Coughing with chest expanders sucks. I'm so ready for 2018 to be done. Sheesh. I keep reminding myself it could always be worse! 🙂
0 -
Hi ladies-
SN, sorry about all you’ve been through this month, just hang in there. I’ve battled the stomach flu earlier this week that hit my whole family and some sort of respiratory infection when I was in Mexico too! I think our immune system‘s are still in recovery mode.
SLL- Great news to hear your surgery is booked!
I’m just back from the hospital and had my exchange surgery today. So far so good, and I can’t tell you how good it feels to have those tissue expanders out and how much better I feel after this surgery compared to the last one! Literally it’s day and night, In terms of pain ect. Several nurses even remarked they couldn’t believe I had just had surgery. Coming out of the last one I literally felt like I had been hit by a truck and to be quite honest I hardly remember the first week post op. So just to give you guys hope and some peace of mind for the exchanges.
Now starts the healing again, will keep you guys posted. Dr went with 650 mL natrelle insprira cohesive gel. She also did some fat grafting from my hips, which she says will be the most painful part. Dr. wants me back on the gabapentin for a week as well as Oxi as needed, and of course an antibiotic. The lovely surprise was that I came home drain free, which shocked me because the nurse told me I would be going home with drains for at least a week.
It’s been really great to hear from you ladies and I am sending healing vibes and love to all!
0 -
michi- great news! I’m sure if feels good to have it done! How’s day one of healing going?
0 -
thanks SLL
It’s going good today. So far I am more sore from the fat grafting done than anything with my Foobs. Off the heavy stuff (took an Oxi last night) but i’ve been on Tylenol all day and feeling fine. Snuck a quick peek and all looks good, so let’s see where things end up since I know it takes time for them to settle. Good luck with yours, only a couple weeks now right? you’ll breeze through!
0 -
That’s great you are doing well! And yes mine is coming up, just over two weeks away October 8 I can’t wait to feel squishy agai. My ps said spanx would be helpful for the lipo areas so I’m on the hunt for a second pair, and a few sports bras that zipper in the front (so I don’t have to use the hospital stuff!)
0 -
I’m at a loss. I saw the plastic surgeon today. I was on board to have a bilateral now I’m on the fence due to side effects and long term complications after reconstruction. I’m more confused than ever! Plan to have Left mastectomy with lymph node removal.
0 -
Michi - glad it is going well! Good for you.
SLL - I'll think good thoughts for you!
B84 - it is a tough decision to make. I went through the whole thing of thinking lumpectomy with radiation, single MX with reconstruction and symmetry, and so on. In the end my double with reconstruction and no other therapies was the best decision. My good side ended up having pre cancer that wasn't discovered until the final pathology so I would have been back to do it all again down the road. The long term side effects suck but in end it was worth it. Do what is best for you and what you can live with. It's your body and your decision
0 -
B84, I too was on board for a lumpectomy and rads. I had clear nodes but my margins were not clear. My left breast was going to be destroyed due to the amount of skin I would have removed. So I thought single mastectomy with an implant. After talking it over with my BS, I decided on BMX with DIEP Flap Reconstruction. That decision took chemo and rads off the table because my team already knew that my nodes were clear.
I do not and have not regretted my decision at all. I felt certain that if I did not have my good breast removed it would become cancerous too.
I am seven months post op and doing well. I am very pleased with my new firm breasts. I will get my 3D nipple tattoos in November...just before my one year anniversary of my diagnosis.
It’s a big decision. You have come to the right place. Lot’s of experience shared in these discussion groups.
0 -
B8- what long term side effects are you worried about? You may be surprised and not have any or very minimal. I decided to give tih a BMX because of my age (33), and I may be able to take rads and chemo off the table if I went that route. And sure enough, I didn’t have to do either of those. Did I loose some feeling, yes. But it’s not nearly as much as I expected. And knowing I’ve done everything I could to lower my risk of dealing with this again helps me sleep. In the end make a decision for years down the road, what is going to give you the most peace of mind. I wish you luck and comfort in this decision. You got this!
0 -
b84, you are in a tough spot, I went at first the lumpectomy with radiation followed eight years later by a UMX with so far no reconstruction. I am doing ok. There is so much to consider for each of us and as each situation is different. I worry too about the need to have further surgeries as I would need the more invasive Flap procedure due to the rads. So far I am taking it one day at a time. If I need further surgery on the other side I will do that at the time. So take a deep breath and go with your gut. There is no right or wrong only what is best at the time. Hugs!
0 -
I enjoy hearing how everyone is doing.
Michi - going home drain free is a great surprise and so glad this surgery went so smoothly!
SN - ☹ how are you feeling now?
0 -
I am back. I had to have both of my expanders replaced on September 11th. So both of the expanders had flipped. So they had been filling them backwards and they had holes in them from the needles. So crazy and insane. I told them I could feel the solution but of course I was "crazy" The PS used a different kind and he sewed the new ones in. I also had two big cavities on each side where the boob use to be. The indents were the reason that the expanders flipped or so he thinks. So I now have to to keep my drains in for longer in order to dry everything up in hopes the caves will not come back. I knew they were there because you could see them when I laid down. The PS added saline during surgery and 100 cc yesterday and said I could come in every week as long as I want to in order to catch back up. I really wanted to have replacement surgery done the first week in January. I was hoping I would be doing the exchange surgery in October but that ship sunk.
I am feeling pretty good. Knowing what to expect has made this surgery easier. There was not as much pain as when I had the mastectomy. But I am back to sleeping in the recliner. that part sucks.
SLL-- I am so glad you are getting your foobs. I can't wait to hear all about it.
Michi_ Yeah for foobs being in and it sounding like you are doing well.
Readyabout- I was thinking the same thing about if I have anymore issues I will think about going flat. This is crazy. And my primary doctor knows of a place that does tattoo boobs. they look like boobs but are just tattooed on your chest. LOL She is a friend of my daughter and she was showing my daughter how they look.
0 -
kandyhunt: Heavens, how horrible!!!! Each of my TE's has 3 tabs. They explained that each one is sewn to me, and therefore the TE's can't move. Between that and the Alloderm that is sewn to my pecs to create the "pocket" for the implants, I don't have TE movement. Discomfort in certain positions, for sure. My chest is most comfortable when I'm sitting upright or standing upright. Other positions, they seem to cram against ribs, etc. I don't really know what they're sewn to. Chest wall? Tissue on ribs? I have kind of looked this up, but decided that whatever they did, it has kept them stable, so Oh Well.My implant surgery will be January 2. My SO suggested waiting for 3-4 months after chemo. 3 months is right before Christmas, so I will do it about 4 months after chemo. My body will have had a good amount of time to recover from chemo before that next trauma. So, I will have lived with TE's for 7 1/2 months at that point. Ugh. And mine haven't had any complications. Although, I have healing SLOWNESS, since right side had radiation in 2003. I am just generally whiney about mine for no justifiable reason, and you have a lot of reason to be upset. Horrible. I'm so sorry about what you've been through. We do not need extra surgeries, on top of everything else!
0 -
kandyhunt,
I’m so sorry you’re going through this, how frustrating to be dealing with this now. That’s so curious they flipped..mine were fixed on to me like nothing I’ve seen before, I literally couldn’t make either boob move a centimeter in any direction. It was so bad that I would have to flip sides every hour at night because it was like two rocks into my sides, in the exact position. Don’t worry though, January will be here before you know it.
I’m adjusting to my new implants just fine, but I think honestly anything would have been better than the tissue expanders. I think mine were so painful towards the end because they overfilled them and instead of doing the smart thing and asking them to take out some fluid I just endured the pain for the last two months.
I will say I am bruised all over horribly from the fat grafting, I look like I’ve been beaten pretty severely on my flank area and the top of my breast where she injected the fat I have horrible bruising also..so odd I didn’t bruise at all with the first surgery but this one, though much less invasive and I am black and blue all over. I spoke with my friend today who is four weeks out and due to her radiation schedule she won’t be cleared to have the exchange surgery until next July, I guess she has to wait seven months minimum after she finishes radiation before she can think about the surgery.
Sending healing vibes to all!
0 -
of course my house has been healthy all summer long and now that I am 6 days away from exchange surgery my husband s d daughter have horrible colds!! I’ve been popping the zicam every 3 hours in hopes it spares me!! Last thing I need is for it to be postponed or be coughing and sneezing after surgery!
0 -
SLL
Oh no! isnt It always like that. Cold season starts early here doesn’t it? I got the stomach flu right before mine and thankfully my surgeon rescheduled mine for 2 days later than we had planned, ended up being perfect because I was still queasy on my original day. Hoping you managed to stay healthy and best of luck on the upcoming exchange!
0 -
SLL I hope you are feeling ok and are able to have your exchange surgery. I am so jealous. I have convinced my PS to allow me to have a fill every week rather than every other week. I want to get back to where I left off and have my exchange the first week in January. It will still be within my year mark as it is from January 15 to January 15 for insurance copay.
Other than waiting for my foobs I am dealing with lymphaedema. My arm and my boob are all swollen up from fluid.
I hope everyone is have a good October.
0 -
For lymphedema, there are PTs who specialize in Manual Lymph Drainage, and teaching and managing this in association with breast cancer treatment and surgery. Here's one book that's a good resource, but it's a technique that can be done to you, and also taught to you. Lymphedema information book
I recommend finding a specially-trained PT who knows how to treat lymphedema (they don't all have this training) to be involved in helping you with this.
Warm wishes.
0 -
SLL - I am sorry to hear that! How are you doing?
Kandyhunt - that is terrible on the lymphedema. Hiking lady has a good suggestion. Have you been able to find anyone? I have been surprised and disappointed that lymphedema specialists have not been automatically assigned or at least recommended following any surgery where any lymph nodes have been removed.
0 -
I agree SPD. The lymphedema issue is not discussed enough. Whilst the amount of information can be overwhelming the risks of lymphedema and the condition need to be considered in full prior to agreeing to surgery. The importance of manual drainage for prevention is something I learned post surgery.0
-
RE: LYMPHEDMA as a post-surgery, post-radiation complication
I have a super close friend who is a PT who specializes in this--she just retired, so she doesn't treat me, but she's my expert advice-giver-friend about this. All things about post-breast surgery complications. Range of motion, stretching, scar massage, de-adhering so that the reconstruction and healing goes well, and lymphedema. My own experience is that my plastic surgeon scoffs a bit, and hasn't referred me to PT for any of this. I don't happen to have lymphedema, but proactively, I decided to see a PT who specializes in breast surgery issues. She's working on my pec to stretch it, working on the fascia for comfort for the TE and implant. My situation is a bit unusual. 15 years ago, radiation on right side. So, the right side tissue expander is having a harder time getting the fascia, pec, skin stretched, and she's working on it. My implant surgery is in 3 more months, so I have some time to get this work done. Meantime, she happens to also be a MLD specialist, and if that comes up, I'll go to her.
Back to my super close friend. She has done this work for 25 years, and lymphedema can have solutions. The massage techniques, the "drainage" to learn how to "pump" the lymph, and of course compression and elevation and protection of the sites. For instance, I never have needle pokes on my right arm--I just don't chance it. I have now had TWO axillary node excisions (2003 and 2018) on my right side, so I just don't ever prune the raspberries or roses either, without super-gloves and arm cover protection. Anyway, there are solutions, but we have to self-advocate and find the experts.
0 -
spdgirl- I’m hanging in there! I ended up catching everyone’s cold but it’s not too bad. Hoping the cough doesn’t show up right after surgery! I spoke with my surgeons office Friday and they said as long as I don’t get a fever or it turns into a respiratory infection we should be good to go.I’m about 18 hours away from surgery and ready to get it done!
0 -
SLL-
Good luck today! You’re going to see, it’s a piece of cake after what we’ve all been through. I was joking the with my PS that I’d do it again to have my husband manage the kids and wait on me for a week!
Let us know how it goes
0 -
SLL- Good luck on the surgery
Yes I have a MLD specialist. She is very interesting and every time I think I have a handle on this she tells me I am wrong. At first when I saw her she claimed I didn't have it. Than when I came back and said OK now my arm is bigger what now? she claimed she never told me that and that I should have been coming to her. But in this area there are too few MLD specialist. I have been on this site and have found a good group of women that I dealing with this issue and they have been a great help.
I had 100 cc put in both sides today and it appears that things are going great. I now have 500 cc in and I asked about how much these new ones will take. The nurse said, "950 so I could go up to 1000 cc" I guess my face showed my reaction as she started to laugh. But I have also notice that I am feeling like I am getting the sunken chest again. So I was telling my niece that works for me about this and she says, "Kahli (her sister) and my aunt have this issue. My aunt found out about it when she had a mastectomy last year on her right breast. My niece has known forever because she is very thin and when she lays down you see that her chest in concave. My niece says that they were comparing chests the last time she was out West visiting. So great now that I know this I will pass it on to the PS and hopefully my issues with my expanders will not prove I have that seem concave chest. LOL it would be my luck.
Wishing everyone a happy Monday.
0 -
Hi everyone I’m home and resting. So far so good. No real pain and the compression garment around my stomach where she did lipo is the most uncomfortable, I hope I can put on my spanx tomorrow I’ll have to check with my husband on what my dr said. I’ve been out of surgery almost 8 hours so hopefully any pain issues won’t get worse than this! I woke up without bandages again, and was able to put on a bra I purchased in recovery. (I have two different ones so I’ll share my option of both in a couple days for those still waiting to go through this.) I went with mentor high profile smooth rounds and looks like my ps decided on 335cc. They look very similar to my pre surgery size in my shirt and that was my goal. Glad to be on the other side of this!
0 -
SLL - so glad that all went well! How are you feeling now?
HikingLady - I am jealous of your PT friend
I have not been able to find anyone with that scope of knowledge and I end up feeling odd asking as nobody seems to know what I am talking about. I received a hand out on Lymphodema at discharge from the hospital after surgery, but that has been it. Everyone tells me that there are not any concerns (besides not having blood pressure, blood draws on that side) since I only had 5 nodes removed. Still struggling with chest tightness, so I keep researching. 0 -
RE: Lymphedema, axillary node excisions, and post-mastectomy PT issues
I saw my PT (who specializes in all this) today. How did I find her? Lots of Googling. She also knows Manual Lymph Drainage techniques, etc for managing/preventing lymphedema. Lymphedema IS a risk after all breast surgeries, and after radiation.
My breast-specialist PT is working specifically on my right side, to make it more comfortable. I have TE's, and my right side had radiation (whole breast + site-specific) in 2003, 15 years ago. Right side pec doesn't want to stretch over the TE (because of scar tissue), and that there are more adhesions and less free movement on that side. (I have to have BELOW pec expanders and implants also because of radiation--skin too thin for the newer "pre-pectoral" type implants) My left side is much more comfortable, doesn't mind the tissue fills, and the pec doesn't spasm out and scream at me. Anyway, she's doing some stretching of fibers, movement and freeing of the fascia layer, and generally "working" the scar, adhesions, and scarred tissue so that it can be more flexible. This will make my final implants be more comfortable. I'm staying whatever size I am at this point, maybe B, maybe C, depends what the PS decides will fit well in the pocket. I'm stopping NOW, at 300cc's, although I could have 500-700 put in. Too uncomfortable at this point, and also, healing was slow on the right side after the BMX, so I don't want to get all crazy and have healing complications. Implant swap surgery is going to be January 2, a full 4 months PFC, so I can have time to rebuild strength and heal well. I'm waiting that long for the same reason--my healing will be challenged, so I want to have the best possible good health before that surgery.
My PT says that she can help everyone be more comfortable with TE's and be more able to have the implants have enough "space" in their pockets without adhesions, etc. Scar-minimization, scar-remodeling (so that the incision floats over the fascia layer and doesn't get caught, moves smoothly), stretching of different attachment sites for muscles attaching to joints and ligaments, lymphedema prevention, drainage and management techniques, and working on scar adhesions ARE normal PT skills, so any large system (like Kaiser) usually has some PT's who have this specialty. Obviously, some PTs are orthopedic people, and some are post-surgery specialists, and I did spend a lot of time looking before I found this very skilled PT. Basically, she's doing very specific massage and stretching on me.
AIR TRAVEL & LYMPHEDEMA RISK Today, this PT said, "Oh, you're going on some airplane flights soon? You should wear a compression sleeve on your right arm." I said, "But, I have no lymphedema!" She said, "THAT'S why you need to do this. PREVENT any future lymphedema. Do this EVERY TIME YOU FLY. You're at high risk for lymphedema any time up to 2 years post Axillary Node Excision." So, before my flight, I'll go to a place in Portland that specializes in this (Just Like A Woman--they also specialize in mastectomy bras of all types, with prosthetic forms, removable pads, etc) and have them fit me with a compression sleeve for my right arm, and she instructs me to put it on a few hours AHEAD of my flight and keep it on for a few hours AFTER my flight, as pressurization takes several hours to normalize in blood stream after flight.
Ooh, that will be SO CUTE to wear, along with my tank top when I fly to LA on Friday to see my daughter! Right? A fashion statement! One more cancer indignity. Am working (psychologically) on wearing it PROUDLY. Well, I got in the public pool (a few weeks ago, after chemo was over) baring my horizontal no-nipple BMX incision scars with the lumpy TE square-looking torso in the showers, and just decided to own MY BODY THAT LOOKS DIFFERENT NOW, so I guess I can do Compression Sleeve While Flying.
WOW, this was news to me, and exactly why I sought her out. Preventing lymphedema is way better than managing it, duh. I had axillary node excisions (2 removed, both negative, sentinel/dye trace, etc) in 2003 with my lumpectomy. Again, in 2018, one node excised (also sentinel, dye trace, also negative), and although 2018 axillary node excision wasn't a separate incision (it was done by tunneling through the mastectomy/breast incision, so there's not a new scar), the risk comes from the removal of the lymph node, not from just scar tissue.
This is DEFINITELY not something either my SO or PS ever mentioned. Surgeons deal with their thing, and then we're on our own. I wanted to share this compression-sleeve-while-flying tip with anyone who's had axillary node excisions, which, I'm pretty sure, is EVERY breast surgery patient who's had an invasive breast cancer.
If you're ALREADY dealing with lymphedema, you probably do have a PT who's helping you, and who's guiding compression sleeves and wrapping and manual lymph drainage. If you don't have lymphedema, then, like me, you also don't WANT to have it.
0
