June 2019 Surgery Support Group
Comments
-
Had my follow up today- got 2 drains removed , yippee. My sentinel node that originally came back no cancer when I had the original biopsy on May 2nd came back with some cancer this time - the path report says largest focus 0.8mm. Eight other lymph nodes came back all clear. So that's good. The tumor size went from 1.7 to 2.2. I swear it felt bigger from May til now but who knows if that was reality or not. But in any case the grade went from 2 to 3 and there was cancer in the 1 node so next stop chemo - ugh. But I'll deal it's not a suprise and I'm telling myself I'll be done with the A/C by Labor Day week, so there is that. And done with Taxol b/4 Christmas. Any Radiation is still tbd. I'm glad they will be doing scans and an echo b/4 chemo to have a baseline of my body so we keep an eye on things. So now I have those appointments and I'm on the hunt for a couple of wigs. :-) I was hoping to skip chemo and at the same time, deep down I was like , I'm gonna have to have chemo I just know it.
0 -
2019whatayear: I'm sorry that you have to do chemo. I did it, and it wasn't so bad as I thought it be (of course I was a complain's machine during all the process but what the hell, I'd never been a good patient) I'm 2 months PFC and I'm feeling pretty good, now in pain from my surgery
.Fortunly you are recovering well from your's. Just think it as a bad year (as your nickname suggest) You can do it. HUGS0 -
2019- yay about the drains!! I HATED my 3 drains, too me the worst part of recovery!! Sorry the size and grade changed of your tumor, that sucks!! My sentinel node had 1 with 0.5mm cancer but none of the others had anything. I was able to not have to do radiation which I'm super happy about. Best of luck and hope yippy rock your AC & T without too many SEs!!!
I hope everyone has a great 4th of July, for stateside ladies, and everyone has awonderful week!!
~Katie💗
0 -
Got my drains removed today! It felt weird when they took them out. Didn't hurt. It was an odd sensation. They said to take a shower tomorrow. YAHOO!
Also had my 1st fill today. 100 cc in each. I go back in a week for the same thing.
Medical oncologist on Monday said to eat plenty of protein every day because your body uses protein in order to rebuild. Like 50 gm or so per day.
Also saw a physical therapist who specializes in lymphedema. I don't have lymphedema, but I wanted more info on what to do, what to watch out for, etc. Also, she helped me with some exercises which will help improve my range of motion, which is pretty limited right now. I go every week through the end of the month.
0 -
Katie, I like your new avatar. You look great, and your hair is growing up!😘
0 -
Thank you Sonia!!😊 I am impatiently waiting to see what color it decides to go to. I have areas that are longer in the really really blonde and then some ends that are by my scalp that are darker.
I hope all you ladies are doing good and continuing to kick cancer's ass!!!🥊🥊🥊
~Katie💗
0 -
hi ladies. I was wondering the average time to keep drains in for a unilateral MX
0 -
2019 - I’m sorry about the path report, but you have a great attitude about next steps. Your timeline and goal-setting is great I hope for the best and anticipate the not-so-best, so upon diagnosis, I ordered a wig anyway, and I still don’t know if chemo is in my future. I now realize there is a shoppe right in my treatment center, but I went online initially and ordered a human-hair, lace-front wig and guess what? I’ll wear this thing anyway because it looks so good. I took photos and sent them to my family and they thought I got highlights, they couldn’t tell. I also read a lot about the Dignicap helping people out a lot, so maybe look into that, too if hair loss is a concern. I’m thinking of you.
0 -
ucfknights - I'm not sure what the average time is, but mine were in for 2 weeks.
0 -
countdooku, thanks for the info on protein. that's good to know I'm going to work on upping my protein by focusing on lean protein and adding in beans and probably more fish in my diet.
Katie, your hair is so cute!
My hospital gave me this B.C. handbook and last night it suggested making some lists and just adding to it as you go like 50 things cancer taught me. 50 things l love about my life. Frankly this idea spoke directly to me. I think making lists is my love language. LOL
Sonia thanks for your perspective on chemo. I try to remember when reading the posts on this community that it's a small sample of the entire population of people with BC. Like people are more likely to come here looking to commiserate than to say. Well that wasn't too bad.
Xtra thanks I'm trying, I had some great anxiety last night that came out of nowhere. I have to keep reminding myself that they got the cancer out that I had, the mass isn't there anymore able to spread and so I can focus on great nutrition and exercise and heal and go into chemo as prepared as I can and the chemo is going to do it's thing and clear up any random cells that might be running around. I'm going to get at least 2 wigs and I hope I enjoy wig wearing so I can mix up my hair for the many many years to come well after I have my own hair back- just for fun. I will say I looked into the cold capping but it seemed IMO like it would take a lot of energy and time to add that to chemo. Also weird as it is, I think there is something pretty cool about the regrowth of hair and how it signals and end to a hard time. And ALSO- down with the patriarchy! Men run around shaving their heads bald all the time and everyone doesn't think oh no they must be sick- hair doesn't define me. LOL
0 -
2019: I totally understand the anxiety out of nowhere. This is real roller coaster. You've got a great approach. More power to you! One of my college roommates had chemo, said it was totally doable (though she didn't want to do it again).
0 -
Ucfknights: I had a uni mx and had that drain removed on day 10 (but I also had immediate diep flap reconstruction at the same time, and I suspect it was the determining factor in drainage).
0 -
2019- As my hair started falling out more then normal at the beginning I decided to buzz my hair before the clumps got to much as I figured I'd have a much harder time with that. People have commented that I lost my hair due to chemo and i correct them saying I took my hair and chemo is delaying it growing back. Guess my little way of taking control It also took me multiple months to go out in public without my hat on but it feels so good without the hat!! I still get irritated at the staring at times but others don't have to like my hair, it's mine and like you said it shows growth after a hellish time!!
I hope all you ladies are having a good day!! Keep up the kicking cancer's ass fight!!!!🥊🥊
~Katie💗
0 -
Sorry I haven't posted. I've had a bad couple of days with pain. Back to work has been rough and eating anything other than oatmeal and soup makes it even worse. Uggghhhh
2019WhatAYear - Big Hugs! I am so sorry about the chemo. Cancer sux, but you have a very positive outlook on the process - eating healthy etc. I had lots of anxiety/sleepless nights. My onco is great and she did not hestitate to prescribe a med that helped me get some rest. Yeah on the drains.
Katie, your pix looks great. Hope your surgery recovery is going well.
Ucfknights. . .I had my drains crom BMx cor 9 days. I kept a digital record of the output and showed it to my PS.
Countdooku. . .Yeah on the drains and on the 100 cc fill. Physical therapy will be great for your ROM.
Sonia, hope the pain lets up soon.
Scottie
0 -
Katie I love that! I have already lined up my BFF to shave my head on 7/27 a few days after my first
Chemo because hair falling out in clumps seems unnecessarily scary for me
Scottie’s mom feel better xoxo
UC I was really grossed out by the whole drain thin prior to surgery but once in couple days passed I was unbothered
0 -
2019- I have a friend who went through chemo who told me, in addition to my chemo nurses, that it will start falling out more about 16ish days after your first chemo. My surfing increased slowly but was definitely more about 10 days after first chemo. I had mutt head buzzed on day 16 and left it buzzed for awhile until I just had splotches of hair then I shaved it all off.
I think it's great your BFF is doing it for you, what a great way for them to support you and help you through such a hard experience!!! I was ok until the first pass of the clippers and I cried the rest of the passes. After it was done I don't think I cried anymore about it, I think it was just the shock. You've got this!!!
Scottie- sorry your having some rough days!! I hope they resolve quickly!!
Hugs to all you awesome cancer kicking ass women!!!
~Katie💗
0 -
2019: before my hair began to fall, my stylist cut a few long wicks and made a curtain with my own hair. I used it under hats and scarfs. It looked very natural
0 -
HI Everyone- This is my first post here. I have been active in the April Chemo group as Chemo came first for me.
I had bilateral skin sparing mastectomies on June 26th. Saw Plastics on July 3rd and had my drains removed with was a great relief at 1 week.
I hate to "butt in" late to the game, but I have a question that has sent me here:
Is anyone else struggling with severe burning/crawling sensations of the surgical area (for me whole chest) and the underarms? I know this is fairly common, and is due to nerve disruption but I am wondering what if anything has worked for anyone. It is driving me crazy!
I can not even stand to have my clothes touching my skin lightly, I have not even attempted any sort of bra (not that I need one). I will see plastics again on Thursday for a "trim" to my incision sites as some of it has turned black... Which they say is not that abnormal?? Also planning a fill of my expanders.
Thanks so much in advance- I will start to go back and read and chime in where helpful if possible too.
Karen0 -
Karen: my lumpectomy was almost 1 month ago and it still burns and hurts. I have pain and numbness that runs through the chest, the armpit and the back of the arm to the elbow. The cold makes the pain worse (it's winter here). I also have punctures and the nipple is very sensitive. I hope you get better soon. Hugs
0 -
Hurray for all the drain removals. Hope the healing continues to go well for everyone. Scottiemom11 sorry about the pain, hope it starts to get better. Karen, I had burning for quite a while after my DMX. Karen, I still get occasional burning pain in my chest and under am area. Last night it felt like something pulled under my left arm towards the outside of the left chest and it burned for quite a while when I moved my arm or reached for things. 2019whatayear sorry you have to start chemo. After starting chemo both times I had my hairdresser friend cut my long hair into a short style to make the shedding a little easier. I had my head shaved about day 16 as the shedding was just too much.
I had my first fill on the right side last Tuesday, like the right there was no pain just a little discomfort a few hours after. After 7 months I finally had a week of feeling normal and enjoyed having normal energy levels and kept up with the family activities and works on some projects at home.
0 -
Karen,
Welcome and HUGS!
You are not alone. Shooting and burning nerve pain from our surgeries is too common. Are you taking pain meds and muscle relaxers? Talk to your PS about changing or adding to your dose so that you stay comfortable. Also with fills my PS had me take pain meds before each one.
Take care and keep us updated on your recovery. Great support on this and other boards.
Scottie
0 -
Dear Salty, (hee hee cute user name) I have some passing zingers and as the day goes on by the evening I'm fairly sore under my left arm esp. Ive been taking reg. Tylenol and a max of 2 norco per day. The norco is the lowest dose they had so I don't get loopy or barfy. I do know I am a bit more sore and achy now at 2 weeks out - but that has to be b/c more feeling has returned to my chest. Over all it has not been bad at all, IDK if part of that is I have no reconstruction going on? Hope you feel better soon, if your pain interferes w/your ability to function for sure get some better medication from your docs. :-)
How are you doing today Scotties Mom?
RRShannon,
Chemo 2x ugh. My fingers are crossed that you continue to enjoy normal weeks and normal energy levels moving forward!!!
0 -
I haven't had burning or crawling sensations on my chest, but my chest just feels...weird...different. Definitely way less sensation than before and sometimes when clothes brush across parts of the skin, it doesn't feel very good. Feels irritating. 1 of my doctors said that nerves grow at a rate of about 1 mm per month, so it'll take awhile for more feeling to come back I think.
I have my 2nd fill scheduled for Wed, along with another physical therapy appointment. I've noticed that I feel pretty good in the mornings and evenings, but afternoons not as much. Still getting used to what my tissue expanders feel like.
0 -
Thank you to all of you that have shared your experiences.
I see my onco surgeon today and will finally receive my final Path results too. I will ask her about starting something for the nerve issues. Some others have suggested Lyrica or something similar. Taking narcotics makes me sleepy and sometimes nauseated. I am not normally sensitive to medications but can't see functioning daily relying on them.
I am a professor and my job is to read and write all day, online. Can't do that if I can't keep my focus and eyes open! LOL
Today is my return to work date, I don't "have to" but want to, to avoid using all of my sick time. Since my work is from my couch, on my computer primarily, I can do it.
Thank you for all of the warm welcomes and suggestions!
You might also check out the boards for chemo based on your start dates too if that is now part of your treatment plans.. I found my board to be really helpful there too.
Karen0 -
Well my surgeon was no help at all about the burning. She told me to contact my plastics people. I asked about Lyrica etc. she said she thought it was likely the expanders causing the pain in my chest, arm pits arms and back...
NOPE! I said it is more likely the nerves and that I had looked into it and asked the "experts" other BC patients... She just wanted to write narcotics instead and said to follow up with plastics again. SO frustrating. Said she wasn't worried about the "black" areas on the incisions either, which is fine.
Also got my path back. mixed news. No nodes (yay), close margins, now classified as HER2+ so now more chemo.My hair just started to grow in a little. Now Taxol and Herceptin. NOT happy. Radiation is still being debated. My case will go to tumor board because my mass was 13cm (yes really) but only 5% was Invasive, the rest DCIS. Thanks for the moral support. I hate healthcare and I am actually a part of it and teaching others to go into it.... Feels wrong some days.0 -
Salty - welcome! As a matter of fact I saw my plastics doc today...I have been having shooting pains in my breasts and he told me that my nerves were cut and are just kind of hanging out in scar tissue under my arms. He said to gently massage under each arm from above the surgical scar to my armpit, all around the area, kind of like a breast exam, when it hurts, and daily when I get up or get out of the shower or whatever. He said it stimulates the nerves. It helps!
2019 - I’m with you, smashing the patriarchy is my cardio! I’ll find out in 2 weeks about my oncotype.
My nipple is still dark and the doctor said the outer layer will definitely fall off, let’s hope it all doesn’t fall off, requiring surgery. Wearing the yellow xeroform gauze every day and that’s just lovely
0 -
Thank you Xtra-
I just appreciate knowing that others are dealing with it too. I will definitely try the massage once things are healed a bit more!
I hear you on the black skin falling off! Hopeful my suture lines will just scab and those areas will come off too.
Thank you everyone!
Karen0 -
Karen, I'm sorry you have to do more chemo. There is a weekly taxol thread that you can find very useful. Good for your negative nodes!
I will try the massage also because the pain continues ... (sigh)
Pd: my hair grew during taxol. Maybe yours will keep growing. I wish you luck ! Hugs
0 -
I'm glad to hear that I'm not the only one experiencing changes in sensation in one's breast area. I'm going to start doing some mild self-massage, too. So thanks to everyone for mentioning that!
Saltypepper - re: chemo news...how frustrating! :-( However, if only 5% of your 13 cm tumor was invasive, that would mean 0.65 cm of it was invasive. That's much better than only 5% of it being DCIS, I suppose! Hang in there!!
I went back to the naturopathic oncologist today for a follow-up appointment. He's a naturopathic doctor who I see in addition to the traditional oncologists at the cancer center. I go back to the naturopath in 3 months. Changed up some of the supplements I'm taking based on lab results, nothing major...just some minor adjustments here and there. Continuing with oral supplements of Vit C, Vit A, zinc, magnesium, Vit B12 and probiotics daily & removed a couple of other supplements that I don't need anymore given where I am with recuperating from surgery.
Going to physical therapy & reconstructive surgeon tomorrow (for fill #2).
0 -
Thank you Count and Yndorian-
Yes, the chemo starting again is a super bummer. Today it really sunk in. Basically, it is like starting over, again. My original plan was surgery then chemo. Then based on a second biopsy at a new hospital, it went to chemo then surgery and radiation.
Midway through chemo there was no change so they move surgery up. Now, based on patho again, it is back to chemo.
So many ups and downs.
Today I am extra thankful to be working from home, as I have spent the entire day shirtless due to the irritation! LOL
Could not do that in an office! Trying to keep my sense of humor here!
Count- I would love to know more about how you found the naturopathic oncologist in your area. I am in Chicago and imagine we must have a few here too.
Thanks again-Karen0
