August 2013 Surgeries

poodle_mum · September 2013

One of my first requests to the surgeon was that I wanted to have nipples. It might sound weird to some people but I'm sure you all have had that same feeling. He told me he would make sure I had my nipples. I do know they did the skin sparing method and my nipples are sewn back on - sort of like you see in breast reduction pictures.

He took everything and used my own fatty tissue to give me what will be AA boobs when the swelling is gone.

I only had three weeks to get used to this whole issue but even on the day of surgery when he was doing his various artwork, he asked me three times if I wanted the way he was doing it or have a different surgeon take everything off, perfectly flat, nothing there and some day later go back for a "re-build". I said no way - do what you're doing but "please" can I have my nipples.

From what I've read of the nipple sparing method, it is nothing like mine.

Granted I've only been doing this since July and my head is still spinning.

How to explain the pain - if you were (without all this mess), lie on your back and take a deep breath stretching your back into the mattress, you would feel a pressure spot between your breasts and if you put your hand there, you'd feel your ribcage. That is the area I always have pain. It used to be "knock me over" sharp when I moved, got up, etc. Now I just feel it as a dullish pain but constant.

Sorry for not knowing exactly terminology, etc. This truly was a surprise (as it was for all of you).

As far as not having drains, I was expecting them too but for some reason he said he didn't feel they were necessary. I haven't had a great deal of swelling - the seroma has been draining. The swelling on the right side has stayed consistent in amount - give or take. The nurse said within 2 or 2.5 months all the swelling will have re-absorbed into my body and everything will be much better.

Hopefully it doesn't decide to move to some other area like my rear end! :-D

Please forgive me - I tend to approach everything with a sense of humour and I do not mean any disrespect to others - I've had a lot of medical issues over the years and I find I'm happier leaving a room seeing a smile on someone's face, than not.

Pam358 · September 2013

My drain came out on Friday!! (Day 16). Mine didn't hurt at all to be removed. I felt her snip the stitches and before I knew it, it was out. The "hole" stopped draining enough that I got to take my first shower today - that felt as good as getting the drain out! It's interesting that some people got instructions to shower with drains and others told to wait.

Lisa, I hope your drainage amount stays low and you can get yours taken out tomorrow.

I have a relative that works in MO office and she said I'd be surprised to hear some patients want to know as little as possible about what's going on. Even not wanting to know anything about their chemo or side effects. I don't think that's the case for those of us on the message boards seeking info but it would help explain why some medical professionals aren't always as forth coming with details. I know that I told both my BS and MO that I'm a person that likes a lot of information and they seemed to appreciate knowing that. The MO even noted that in the letter he sent me summarizing our appointment. I thought the letter idea was great by the way.

Stay healthy and keep healing!

LiLi1964 · September 2013

Poole-mum – first, you never need to apologize. We’re all in this together and it’s new to most all of us so keep that in mind.

I did not have an option to keep the nipples. I had both ductal carcinoma – that meant the nipples HAD to be removed. You are lucky to have been able to keep them; but I don’t know what your diagnosis was so I don’t know why the surgeon asked you several times if you were ok with the procedure you agreed to.

I don’t think our pains are the same. I wonder if yours has to do with using the fatty tissue to keep your breasts – so I’m sorry I can’t help out there.

I think, too, we all had very little time to come to grips with our diagnosis and the surgery itself. I, personally, would have opted for surgery the day following diagnosis but had to wait 2 weeks so Plastic Surgery and Breast Surgeon could coordinate a surgery date and time. I fell apart in that 2 weeks; but when I woke in the hospital alone (they had not told my husband what room they were putting me in for my stay yet) I completely lost it. My breasts were now gone…..and the overwhelming grief I had not expected overtook me. My poor husband came in to see me like this but I was inconsolable. I’ve been fine since, other than a little bit crying the morning after surgery. We all mourn different things in different ways, I guess. So in saying all that…..we all understand the “head spinning” you’ve gone thru but you’ll get back on a level field soon.

Have you spoken to your Surgeon about this pain? Hopefully he can explain what it is – might be very common for your situation, so if you’ve not yet asked, please do so. It will make you feel better knowing why the pain is there.

I’m still surprised by no drains. I’ve never heard of that; but I’m new to all this as well so what do I know? I’d rather have the drains (even for the nearly 5 weeks I’ve been stuck with them!) than to have seroma and require aspiration. Just my preference.

It is hard seeing our bodies so drastically changed. No doubt about that. But in time, we can be “rebuilt” and the main thing to remember is the goal is to be cancer-free. All else takes back seat to that. You’ll find it’s easier and easier to see your new shape.

I’m hoping someone sees your pain description and can help give you an idea – but please call your surgeon and ask about it. That’s what their paid for and they’re the experts so don’t hesitate to call them first thing tomorrow.

I hope your pain continues to decrease; it can really wear on you after a while!

Lisa

poodle_mum · September 2013

Thanks Lisa,

I'll be going on Tuesday for my regular checkup with him so I will ask. For sure the nurse will sit and give me more answers.

I think his way of telling me pre-op that it was not preventative as I had thought was by giving me the other option. I finally said, can you do everything you believe needs to be done and still leave me boobs and nipples (and I criticise his articulation? Lol).

While at that point he couldn't give me 100% but he said "I do believe so". I trusted him.

After surgery all he said was he got everything, clean margins, all clear. I reversed the question and said "was this the best method?" He said "yes, we got everything (apparently they really do go on a fishing expedition in there), I was able to give you a nice little shape even though your nipples are smaller." Well, coming out of surgery those sounded like good things to me :-)

He told me that since everything is ok and at this time I do not require any chemo or radiation, he'll discuss the details later. He did say he was happy he went in when he did. I'm only speculating but maybe he just found some "minor issues"? Perhaps something that had I waited for a mammogram in a few years could have put me in a whole different world.

I don't know. I just go Tuesday to Tuesday :-)

All of you ladies have gone through much more than I have and I lift my hat to you.

Jo6202 · September 2013

Babs, congrats on getting your drains out!

Lisa, praying you finally get your drains out on Monday.

babs6287 · September 2013

Aviva

It's usual for drains to come out when their output is 30cc or less in a 24 hour period

Babs

aviva5675 · September 2013

I know, Im good with that. Have read on other threads where some Drs not take out unless less than 20. and people who had theirs in for 4,5 even NINE weeks.

poodle_mum · September 2013

I was re-reading some of the posts (now that I'm on my computer instead of my phone). I think things were hard for me because I actually volunteered to have the preventative mastectomy done (this from someone who can't even stand the sight of a needle). So when I went in for my first appointment, I had a different mind-set.

His comment about he doesn't do any surgical procedure without a recent mammogram that suddenly changed to "you don't need a mammogram, I'm taking everything out" just left me confused. Now I have to say, I am Deaf (I can follow a simple conversation one on one - which thankfully this doctor has limited communication skills LOL to my benefit). When I had surgery, and pre-op, etc. I had an interpreter with me the full time. In his office, I don't bother. I'm never there for more than 15/20 minutes and since the man barely says anything, I figure it's not worth it. (Plus, I do understand his nurse at the office)

Then I get my "Day Surgery" package (which surprised me since I thought I would be at least in the hospital more than one day). They scheduled the surgery while I was at his office for 8 days later. Then I called to book my pre-op appt and they told me they had to change my surgery date for another 13 days because they doctor requested a longer opening time for the OR. I was still going on the "Ok, this is just a preventative thing, I've seen pictures on the internet, I can handle this, no problem....."

As I walked into the hospital and asked the first lady I saw where Day Surgery was, she said, "oh come walk with me, that's where I'm going." We only walked a few feet (my parents had driven me as it was in another town and I don't drive) and all of a sudden I blurted out "I'm tired of hearing how hard it is for everyone else to cope with this, THEY aren't getting their boobs lopped off!" She turned to me and said "*I* know exactly how you feel, I've been through it myself. I'll be part of your nursing team and when you've finished the pre-op things, I'll come and talk to you." It was just like this angel had put her arm around my shoulder.

So I went through all the pre-op. At one point in time another nurse popped in and actually really caused me alarm. She said "so is this is a breast reduction, a mastectomy, are you intending to keep your breasts, what is the purpose of this, why would you want to have this done....." and a whole lot of other quick jabbing questions that just left me speechless. Soon afterwards, the original nurse came back, sat down and took my hand and I was in tears. She had heard the other nurse and had actually asked her from outside the room to stop the questions. I could understand her without my interpreter so that helped a lot too. First she asked me if I was volunteering to have a preventative mastectomy. I said yes. She asked if anyone had coerced me or if it was my own free will. I told her I wanted it done because I had a strong history of BC in the family. I told her that someone told me a "real" mastectomy meant that I had to lose everything from my underarms, breasts, chest wall, every single thing. She asked me if I had the lymph nodes in the underarm areas tested and I said yes everything was fine. She said then I didn't need to worry. So I told her that I wanted to keep my nipples. She smiled and said that was perfectly natural. She explained that the surgeon's report said there was concern in my left breast and she said they would probably have to do a lot more work on that side because there was obviously something there, it could be a lump or a cyst or something, but he wanted to make sure that he got everything out. So I asked her does this mean I have cancer? She told me not to think about that, she would see me in a few days and everything would be fine.

When I came out of surgery, she was there - the nurses were surprised he didn't put in drains as well, but apparently he said he saw no reason for putting them in. He then said (through my interpreter) that he had taken everything out, all was clear and he got clean margins. I looked at my nurse and I saw her facial expression change.

To make an extremely long story short(er) (if possible), before I left the hospital I sat down with her again and talked with her. She said, obviously she didn't have the information about what may or may not have been found. They did run into some complications with the left side. They took out all the breast tissue (including other more specified terms that I can't recall), they used my own fatty tissue to create boobs and as promised they were able to keep small nipples too and everything looked like real boobs (or at least would eventually when all the swelling was gone, etc.) She said for him to speak that confidently, she knew he had taken everything that he would have taken in a preventative mastectomy but made sure that he had not missed anything that was questionable. That's when one of the other nurses who had been in the OR with us said "yes, he definitely went on a fishing expedition!" (They all understand my sense of humour). (Ironically, *my nurse* (as I've come to call her) has his PS partner who will be starting her reconstruction surgery in a few weeks so she knows this surgeon quite well.)

She told me not to worry, everything would be fine and it might be a bit of time but I would eventually get a written report of everything that would include the "questionable" complication. So from my understanding, what he said, is that (again in simplified terms because I did not have an interpreter there that day during the appt after surgery), "technically you have no breasts but I kept the skin and the nipples and made you nicely shaped breasts that will make you feel better."

I'm starting to feel different sensations like sudden sharp pin feelings but the nurse said that was nerves connecting and part of the healing process.

Sorry for being long-winded. I've had no one to talk to and I think my friends are getting tired of the "show and tell" and constant "boob talk" but, they just don't understand what I'm feeling.

LiLi1964 · September 2013

Aviva – did I understand you correctly that your PS takes out drains at 3 weeks regardless of output? That seems strange to me. When I brought up issue of drains to PS (like everytime I’ve been there!) she was very clear on the dangers of removing them too soon. The TE is foreign to the body and therefore, the body goes into “attack” mode and can either (or both) begin encapsulation or if there is too much fluid sitting there around the TE, it’s “like a Petri Dish for bacteria” (those are her words exactly). Told me they know the drains are a pain and every woman hates them, they all know that, but the risk is very, very high of getting a bacterial infection if the drains are removed too soon. Of course, there is the risk of getting an infection from the drains themselves, but when weighting one against the other, the risk and potential infection then having to remove TE’s is much higher than if they just leave the drains in until the output is at the level your particular PS determines sufficient (and you’re right, some say 30ml/24 hours and others say 20ml/24 hours). I, too, read those threads about women who had their drains for 8-9 weeks which is what put me in such a foul mood on Monday and led me to feel completely, emotionally drained (the thought of having my drains in until 8 weeks – well, having been at 4 weeks already I could not imagine having to wait ANOTHER 4-5 weeks!).

It’s obviously something you’ll be discussing with your PS. And I know that you, too, have done research as have I, and you no doubt have read that if the drains come out too soon and seroma sets in, then you may need to go in for aspiration (I’ve had that 2x prior to surgery and it’s something I prefer to stay as far from as I can). Better to let the drains stay in to do their job instead of risking infection during aspiration (any time you put a needle into the body you are subjecting it to possible infection).

I thought that last Thursday you were ready for drains to come out but your PS was not in on Friday – have you begun to drain more since then that has brought up this issue?

I hope if your drains are ready for removal, that happens for you tomorrow. And you enjoy that first shower!!!

It seems clear that the only consistent thing with our PS’s is inconsistency. However, from what I’ve read it seems they all wait about 4 weeks post op for your first post op expansion. They want to make sure you’ve had a good amount of time to heal and I’m guessing that the healing inside might take longer than what we see on the surface – so I think you might be about 2 weeks away from your first post op fill.

Pam358 – Thanks for the info regarding what you discussed w/MO. It makes me feel as though, knowing that now, that I need to speak up right from the start and let my doctors know I want to be informed on everything. I can’t imagine why any patient wouldn’t want to know……

And congrats to you for getting your drain removed on Friday!! And I bet that shower felt awesome!!!!!

Jo6202 – thanks for winging those thoughts skyward on my behalf! I really, really want these drains gone!!! Did you get your surgery set up yet? I believe you were supposed to get a surgery date set up on Friday but I don’t see any update……..

First Expansion Update – I gotta say, I am so pleasantly surprised by how it went. Yes, I was very sore 6-8 hours after the expansion. It lasted for about 24 hours and that was it – other than some little tension in the right/upper back, I feel the same as I did before the expansion. We are all different, but hoping the same is for each one of you when you get your first expansion (I believe Jacquie had a very painful time of it so it just goes to show – you don’t know until your time comes). But my best wishes to each of you that you breeze thru it as I did!!!!

Have a great evening!!!!!

Jo6202 · September 2013

Lili,

Yes my re-excision is scheduled for Wed. Sept. 11th. If I don't get clear margins this time, then will be going for mastectomy. Wish me luck.

LiLi1964 · September 2013

Jo6202 - You have more than my wishing you luck, you have my thoughts and prayers with you as well.

I wish you nothing but the best and that they get everything that needs getting out this time. Will this be done outpatient?

Keep your spirits up and think positive. I'm praying for you!!!!!

Lisa

Pam358 · September 2013

And for my drain to be removed I had to have two days under 30cc. The nurse slipped on the phone and said 3 days and before she could finish her sentence I said "3days???" She apologized and we laughed - you can't just move the finish line like that.

Jo6202 · September 2013

Lili1964

Yes, my surgery will be outpatient then 3 work days for results so at least 5 days waiting because of the weekend. I think this whole situation is about God testing my patience :-)

LiLi1964 · September 2013

Good Monday Morning Ladies,

Well…..tubes will NOT be coming out today. Fluid output increased again last night and the left is still too high and something odd happened w/right. We emptied the drain (had 15ml in 24 hours) and then 10 minutes later it started to feel a little heavy again. Sure enough, almost 5ml drained in that short 10minutes. So I’m not comfortable that one is really ready yet either so I STILL will be tied to this darn things….forever? That’s how it feels, anyway.

I sent a message to my PS asking if I can have another expansion this Friday. Seems last weeks expansion helped start slowing down fluid output and since I handled the fill so well, I’m hoping she’ll agree to another fill. I just can’t believe I’m nearly 5 weeks with these stupid drains!!!!

Returning to work today – kind of excited but also nervous. I can’t wear the cami or prosthesis because both drive me nuts that I end up constantly pulling at them to get them off my chest (doesn’t look real good in front of the public and a bunch of men). So ala natural is how I must go – and lets not forget I have drains still hanging off my waist – so I’m quite misshapen from how everyone last saw me but……well, it is what it is. I’m a wall-flower and hate attention directed at me but there’s nothing I can do. I just have to deal and remember it’s only temporary.

Hoping you all have a great day! Keep healthy!

Lisa

babs6287 · September 2013

So sorry lisa- that's a bummer!!!

I'm going into work for 3 hours todau for a meeting-not sure if I'm happy about returning or not!!!!

Babs

aviva5675 · September 2013

Lisa good luck at work today! I have 2 weeks to go and Im already nervous. Going to go back half days to start.

I did get the drain out today - yippee!! I have been 22cc and lower all weekend, so it was no problem. Maybe I misunderstood what the nurse said about the 3 weeks, cause it seems to me also that it'd be worse to take them out too soon, regardless of time frame. I like your comment about being emotionally ---- drained! good one

I go back for a check up next week then first fill a week or two after that he said. I start PT soon- got the prescrip from the BS today and am connecting with a PT who specializes in avoiding lymphedma.

Which, one thing that might be interesting: I havent heard yet about chemo but have been reading about stuff....I read about getting the port in your arm instead of your chest. I thought that was interesting, having it in the chest sounds painful. Anyway, I asked my BS today if he had an opinion and he strongly recommends in the arm-- and his thinking is to keep it away from the nodes to further avoid chance of lymphedema. I thought that was interesting.

honeybair · September 2013

Liberation Day today, final drain removed. Will be sent to a physical therapist but I had to insist. Since all my node were removed, I fear getting lymphadema. Next step for me will be radiation after I heal.

Sending best wishes to all of you to be as pain-free as possible.

Pam358 · September 2013

Aviva - I had my port (power port brand) placed while I was having my lumpectomy and my axillary node dissection so I can't speak to the pain during the procedure - but afterward the pain was limited. Mine is in my chest and completely under my skin. It was a little sore from the incision and a little black and blue - but minor. After about a week I didn't even think about it being there unless I touched it by mistake. They have not accessed it yet - but they will tomorrow for some lab work and a CT scan.

aviva5675 · September 2013

i'd like to think that either place its put the pain is minimal. The concept of the arm being farther from the nodes re lymphedema was what caught my attention. When I see the onco Thurs Im definitely going to see what he says.

babs6287 · September 2013

Avila. I never even knew there was a choice of port placement. Mine was put in my chest last year when I had my left UMX and all the lymph nodes removed at the same time. Surprisingly I didn't develop lymph edema-which also surprised my BS. But I did all the arm exercises he gave me to do religiously! I actually just had my port removed with my right PMX. The port never bothered me. It was just a little sensitive to the touch.

Today I returned to work for a 4 hr meeting. It was great to be back but boy was I tired the rest of the day! I'm lucky. I can work 1/2 days and get paid for F/T.

Happy for all who had their drains out and hoping all others get theirs out sooner than later!!!!

Babs

KBeee · September 2013

Lisa, I am so sorry you were not able to get the drains out today. I cannot even to begin to imagine. your frustration. I will keeping hoping and praying that your fluid output decreases.

Aviva and Honeybair (and anyone I missed), I a glad to hear you got yours out today.

I get one of my velcro hair pieces in today...the kind that can go in a hat. It looked like something out of Wayne's world at first, but when I tried it with a ski hat it looked fine. I got it to use at cross country meets and when I am out for walks, and for that it will suffice. I am still waiting on my wig. Hopefully it will come in the next week. Tomorrow I get to go to a meeting at work from 8:00-3:00. I never thought I would be so excited to be at an all day meeting. I will probably be the only one there smiling all day...so nice to be out and about!

Today I made 4 quarts of salsa. That did not put a dent in my tomatoes (who's brilliant idea was it to plant 25 plants? oh...mine). Wednesday, I will make and freeze sauce.

wrenn · September 2013

I have another drain question. Mine is down to 50cc which gives me hope but it is still bright red. The other side was pink and then yellow a few days before coming out so i am wondering if i am still a long way off if it is dark red? It has gone from 130cc to 50 so heading in the right direction

I think i am afraid to trust that it is going right in case yet another complication arises.

Long story short..... What colour were your drainings?

Thanks

honeybair · September 2013

Wrenn, one of may drains was removed one week post surgery and the drainage was always dark red, but it drained very little. My other drain remained in place foor three weeks and the color was always a watery colored pink. In my case, the drainage had to measure no more than 25 ml in order to get removed. The amount must matter more than the color.

Hope your drains don't have to remain in place very long. They are a painful nuisance.

Jo6202 · September 2013

Lisa, so sorry you couldn't get those drains out. How frustrating! Have you been getting any of those patronizing comments from people like "it's just a bump in the road"? If I hear that one more time, I'm going to tear my hair out! Guess I won't have to worry about my hair falling out :-)

Aviva and Honeybear, I am happy that you are free of your drains.

KBee, I have never known anyone with that many tomato plants! You are one hardworking women to keep up with that many.

Babs and Lisa, I hope you can still fit in a nap now that you are working. That is one thing I'm grateful for..not working and being able to rest when needed. I retired a few years ago from the public school system and I know several ladies who faced those kids every day with all those questions and germs. Talk about sister warriors!

Thinking of everyone this week and thankful for your support. I have learned so much from you.

wrenn · September 2013

Honeybair, Thank you for taking the time to reply. Your reply made my day. Because this drain is the one that caused the bleed in the beginning I have always worried about it. Reading about experiences of others and finding out mine is not unusual makes such a huge difference to me.

It only drained 37.5 the last 24 hours so has really slowed down the last few days. I see the surgeon Thursday and I really hope she says everything is going well. I am ok leaving it in as long as it is doing it's job. :-)

LiLi1964 · September 2013

Jo6202 – Thank you for the thoughts about my drains, my stupid, ever-draining, disgusting, never-ending drains. I actually have gotten so frustrated it’s led to another emotional day. I’m tired of them, so very tired. I have gotten quite tired of hearing “they’ll stop draining when they’re ready to” – I feel like slapping anybody who has the nerve to say that to me at this point. But I want everyone who has gotten their drains removed to know that I’m happy for you! It must feel great!

I never napped, Jo. From the day I came home from the hospital until returning to work – I was always either in too much pain or too uncomfortable I was lucky to be able to sleep 4-5 hours a night. It was not a pleasant recovery but I guess since both breasts are now gone, I’ll never have to face that recovery again (trying to be positive about something). Not only did I go to work the first time on Monday, I also drove for the first time and wore deodorant for the first time! Was not about to return to work without that little safeguard. It felt great to drive! I’m really amazed at how much I improved from last Monday to last Friday – obviously somewhere in there a huge turning point happened and I finally felt better (took long enough!). It feels good being back to work even for just ½ days….makes a big difference getting out of the house and returning to some normality.

I love your comment about pulling your hair out! I think many of us are not going to have to worry about that very soon now.

Jo, I wish you the best of luck tomorrow with your surgery. My thoughts and prayers will be with you and hope you have a speedy recovery. Please, as soon as you’re feeling up to it, let us all know how it went and how you are feeling.

Babs – I am so thankful my doctor finally released me for work even if just for ½ days for now. You sounded unsure of how you were going to handle it - glad to hear it went as well for you as it did for me. Just getting these little freedoms back feels so good!!! And you are very lucky to be able to be paid for a full days work even if only working ½ days – I miss those days where I was salary but those days were much more stressful than my current job so in the end I’m happy with the set-up I have. And, since I can work out of my home so that I’m actually working full-time hours, it works out very well because it keeps me busy.

Aviva – congrats to you on getting your drains removed! You cracked me up with your “emotionally draining” comment – I had not realized I wrote that. Perhaps it was my subconscious – because it is making me emotional at this point. I’m actually feeling quite down and out about it. I know I’ve jested about it, but these last 2 days it’s wearing on me a great deal. I just want them out, and there’s nothing I can do to get there. Other than another expansion my PS agreed to do this Friday……I just don’t understand why nearly every other woman has them out within 3 weeks or less and I’m at 5 weeks and still see no end in sight. It’s depressing.

Are you experiencing any signs of Lymphedema? You’re going to PT – did something happen or are you doing this as a precaution?

Where in the arm does that port go that you read about? I’ve never heard of that but I’ve not researched anything to do with chemo (besides scarves and caps/hats). I think I’m the only one in this group of ours that is Triple Negative. I know chemo is very individualized. Therefore, I have purposely stayed away from research and will let my MO tell me what applies to me, then I’ll go research what I’m told. I think the chemo regimen is different for TNBC so instead of confusing myself with the plethora of info online, I’ll wait. Don’t get me wrong – I think it’s great you’ve researched and you found info out you were able to share regarding arm placement of the port – I just don’t want to research because I know so little about what they use for TNBC. My BS offered to place a port but I told him “no way – I’ve got good veins and they can use those”. However, I’ve never heard (and he never said anything to me) about an arm port. Please let me know what your Oncologist says about it on Thurs (my MO appt is Monday 9/16).

Honeybair – congrats on your drain removal! Do you have signs of Lymphedema or are you also going to PT as a precaution? Both you and Aviva are both going so I’m curious. I’ve had shooting electrical type pains shooting from my underarm incision (where I developed seroma) down the inside of the arm to the elbow when I stretch my arm out. It had gotten much better but I’m obviously not paying very close attention at work and stretching it too much reaching for things that it is acting up again almost as bad as at 1 week post op. I was told on another thread it was nerve damage; I read on another thread it could be Lymphedema; my BS said it was seroma pressing on nerve or the tube on that side is pressing on a nerve. What do I know? I don’t want to go to PT if it’s not needed ( I already missed more work than I expected and don’t want to lose more – and I have upcoming chemo as well so if I don’t need PT, I don’t want to use it as a precaution in my individual case). My first thought was nerve damage (which makes sense since the BS can’t see nerves they’re easy enough to cut) – and unless I develop swelling in the arm, hand or trunk – I’m going to go with the nerve damage theory. But I want to know what you 2 have going on to have made the decision to go to PT.

Pam – let us know how your labs and CT scan went today. Hope they didn’t find anything that delays treatment. Are they doing CT scan in lieu of a PET Scan?

Wrenn – I agree with Honeybair. I believe it is the output amount that determines when to remove the drain and not the color. However, if you get to the time-frame I’m at and if you still had very red drainage, then they might consider that a cause for concern. Mine looks exactly like they want it to – kind of a yellow-orange color (like a really, really dark first morning urine – although I’ve never had that dark of color urine but I digress). You’re about 3-4 weeks post op so I wouldn’t be concerned with the color – but if YOU are concerned, please call your BS or PS. Either can tell you if there is any reason for concern and then you’re mind is put at ease. Or just wait til Thurs for your next appt.

Hmmmm, I just looked at your diagnosis and you are TN as well. I hadn’t noticed that before. I guess you and I will be comparing notes on this journey – and our surgery dates were only 9 days apart.

Have you met with Oncology yet?

It also seems we are a bit alike in that we seem to drain much more that other ladies. Not that there is anything wrong with it and it’s not unheard of – but we are outside the “normal” timeframe which is just the way our bodies handle the surgeries we endured. I hope your draining continues to decrease and you have it removed soon. They are a pain and I personally never want to see another one as long as I live!

KBeee – glad you got some of your hairpieces. You sound a little like me in that I want to be prepared ahead of time – I want what I need on hand before I need it. I ordered some scarves and caps which I should receive tomorrow. I’ve watched quite a few Youtube videos on scarf tying and am looking forward to being able to play around with them. And learning how to wear them before the actual need arises. There are just so many cute ones out there and I’ve found some really inexpensive places online that I’m looking forward to building quite a wardrobe of them. Personally, I think I would be too uncomfortable in a wig with all I’ve read on scalp tenderness. Then there’s the issue of my chronic headaches and I worry how wearing a wig would affect that. With scarves, I can make them as loose or tight as I want (or feel) so I think it’s the best choice for me.

You are one courageous lady planting 25 tomato plants! You must have had a great deal of tomatoes. It takes many, many tomatoes to make that amount of salsa! You were obviously a very busy gal. And more to come, huh? Perhaps it’s a good thing you have some extra time on your hands recovering; well, you might need a recovery period from putting up all your tomatoes when you’re all done with that!!!!

Sorry if I missed anybody. Hope everybody had a great day and stay healthy!!!

Lisa

wrenn · September 2013

Hi Lisa. You were diagnosed 2 days before me. . I think your recovery would be harder because of reconstruction. I skipped that to keep it simpler. It never stops amazing me that i just have to logon to feel better. I am so grateful to you women xoxoxo

aviva5675 · September 2013

Hi Lisa- hang in there with the drains- it will happen for you soon! Are you using any kind of drain belt to hold them or?? I had found a belt online, actually thru that TLC wig/scarf/supply place that worked great and ended up being easy- velcros around the waist and came with 4 little velcro on pouches to put the drains.

I dont have LE and want to keep it that way. My BS said my chances are minimal but still. My PT is more for range of motion. My right side, 6 nodes taken, has less mobility than left side (2 nodes). I did agree to participate in a process improvement project thru my hospital- to identify and treat potential arm side effects following breast surgery. So this will give the PT with emphasis on LE avoidance, and follows me for a year. So helps me and helps my wonderful hospital. (Good Sheperd, Barrington, IL). My BS has said pt even before the surgery so Im glad its working out this way.

I think the arm port goes above the elbow on inside of arm? I only heard about it online here at these threads, then did a bit of other looking around on Dr. Google. Will advise what MO says after Thurs appt.

Anyone looking at knit caps? Im looking ahead (even tho totally hoping no chemo)- figure Id just wear those knit caps 'like the kids wear'... anyone found soft unfancy ones?

LiLi1964 · September 2013

aviva - soft caps....the softest ones I've seen (and the ones i'll be ordering for sleeping) is at paulayoung.com. they sell wigs - and have the fluffiest, softest looking cap.

other types of caps can be found just about anywhere. largest selection is at ebay; myself, I'm an Amazon.com shopper and there are many there as well. also find them at Target, Walmart, Shopko, etc. but be careful because if you lose your hair, i've read an awful lot about your scalp being VERY tender so you have to be careful with seams inside caps. so you might want to look at a wig online shop - another one is headcoverings.com.

lisa

honeybair · September 2013

Lili, I am going to PT because my surgeon says I have developed cording because of not exercising and lifting my arm enough. However, I was told no exercises until all drains were out. Since I went three weeks until the last one was removed, I did not stretch or move the correct way. I insisted upon the PT because I want full motion of my arm. No lymphedema symptoms yet, but I will certainly ask whenI recieve PT. Since I will most likely have to receive radiation in the near future, that is a valid concern. Right now my biggest irritation is itching on my chest wall. Anyone else have that? I opted for no reconstruction at the time of surgery.

August 2013 Surgeries

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