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Topic: September 2019 surgery support group

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Aug 14, 2019 08:39AM

JenInMass wrote:

Hi all! I'm still pretty new here but I just got the call yesterday with my next surgery date and thought I'd go ahead and start a thread for September as I'm sure I'm not the only one who has or is expecting a September date at this point.

I am having a nipple-sparing mastectomy of my left breast plus tissue expander placement on 9/10. This will be my 3rd surgery this year. I had an excisional biopsy in June (after 2 failed attempts at a core needle biopsy), followed by re-excision and sentinel lymph node biopsy in July since the first surgery had DCIS in all margins in addition to the small mass they were going after that turned out to be IDC. The second surgery was good news on the lymph node front but still did not have clean margins, and there was a second slightly larger IDC mass that hadn't shown up on any of the imaging (multiple mammograms, ultrasound, and MRI). So, mastectomy it is.

Anyone else getting ready for a September surgery? I like that the August group has a list of everyone's surgery dates updated in the first post; I can do that here as well if people would like that.

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Sep 12, 2019 11:46AM purple-flower wrote:

Lucy

that's exactly what I did.

PF

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Sep 12, 2019 11:50AM Belinda977 wrote:

Purple Flow, for getting out of bed, try rolling and letting the gravity of your legs help with momentum. My legs/core have been getting a work out as I avoid using my arms to pull myself up. Hang in there!

Belinda Dx 4/23/2012, IDC, 1cm, Stage IA, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 5/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/30/2012 Breast Hormonal Therapy 9/18/2012 Dx 7/25/2019, DCIS, Right, Stage 0, Grade 2, ER+ Dx 8/29/2019, DCIS, Right, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/29/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Sep 12, 2019 11:55AM - edited Sep 12, 2019 11:55AM by Trying2staypositive

Hi all, surgeon said things went well for me. Got Home yesterday. In quite a lot of pain though. Not sure if it was the sentinel lymph node biopsy or just the tissue expanders. Surgeon told me my margins and nodes were clear in surgery. I should get the pathology back sometime this week or early next week and he said he would call me. This is the hardest recovery ive ever had from a surgery but I guess I haven't had too many major ones. At night especially hard.Hoping for a quick recovery for all. Hugs 💗

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 12, 2019 11:57AM purple-flower wrote:

thanks Belinda! what about when in bed just trying to scoot back to pillow to sit up higher?

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Sep 12, 2019 12:00PM - edited Sep 12, 2019 12:03PM by Trying2staypositive

pf are your expanders over muscle or under? Mine over but still needing muscle relaxers. Also im majorly retaining fluid everywhere. Anyone else? Maybe all the iv fluids I got. I am paranoid about lymphadema but doesnt sound like he took more than the sentinel row. Arm swelling makes me panic my mom is a retired nurse and she said trauma related and all the fluids. Have no pain in arms though. Prob doesnt Help I had an allergic reaction to antibiotics a few days before surgery which caused my skin to be red and have mild hives. (I have super fair skin) The spots arenot too bad right now but I wonder if hat some of the problem also my skin is angry. The pink portion is nowhere near my tissue expanders or under arm it's on the upper outer arms. My mom said it was probably the way they tied me during surgery that led me to a contact allergy of some kind. Not surprised I react to so many things

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 12, 2019 12:06PM Trying2staypositive wrote:

PF do you have a small stepladder? Mine has a handle- Helps me get in and out of bed. I put my butt sitting as close to pillows at top of bed as possible and using my core gently move my legs up and onto the bed. Not easy but doable

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 12, 2019 01:14PM purple-flower wrote:

Hi Trying

My expanders are over muscle (pre-pectoral). The right side feels fine. The left side feels too big for my body - it's even sticking out too far and seems square w/some bumps. that's really where I am aching and I am trying to contact PS about it now. Seems bigger than left side and lumpy too expanded. When I take a deep breath, that is where it hurts, not particularly anywhere else. I haven't had any muscle relaxers... feel drugged enough. bleh.

PF

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Sep 12, 2019 01:32PM purple-flower wrote:

Btw Trying - SO glad you are done and promising results so far too!!! It does feel good to be on this side of the equation. My surgery was yesterday. Definitely in pain today and last night. I have no bandages on or bra or anything do you? just open except the surgical tape over the incisions on bottom. Not what I expected, but good all in all - to see what's up. PS wants to monitor swelling etc and said good to watch it all. And no advil for that reason too. I was in 8:30am, out of surgery 1pm and them home by around 4:30 - amazing. Surgeon said upon that look during surgery lymph nodes looks clear. But I am anxiously awaiting lab results in about a week, as I am sure you are too! Rest and heal my dear. sorry about the added challenges you have had w/the allergies, but this will all be behind you soon.

PF

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Sep 12, 2019 03:14PM aaoz19 wrote:

Purple-flower,

I'm glad everything went well for you! You sound like you are in good spirits and being taken good care of! I'm glad lymph nodes look clear! Sending along positive thoughts for a good recovery!

Dx 3/29/2019, IDC, Right, Stage IIIA, ER-/PR-, HER2- Chemotherapy 4/17/2019 AC + T (Taxol) Surgery 9/23/2019 Lumpectomy: Right
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Sep 12, 2019 04:39PM Lucy55 wrote:

Trying and PF ...Woo-Hoo !!! You're both on the other side ..👍🌞.I seriously can't believe how quickly you girls are going home ! I went home on the 4th day last time , and doctor said probably the same this time ...It must be just different in Australia ..Did you feel ready to leave ..or was it too early ? I know it's nice to be home in your own bed !

Hugs to all

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 12, 2019 04:44PM - edited Sep 12, 2019 04:45PM by Lucy55

Trying ..is the fluid seroma ? I got seroma last time ..had to go back to the doctor last time to have it syringed out ..It was painless having it done . I only had it done the once , but I know others who had it done a few times ...

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 12, 2019 04:47PM Lucy55 wrote:

Its 6.45 am here in Australia...I'm exhausted ..only had 2 hours sleep last night !!! This surgery is coming between me and my rest ! I so want to be on the "other side " too !!!

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 12, 2019 10:02PM purple-flower wrote:

Hi all.

Low fever right now (100-100.5). (in addition to ongoing pain). anyone experience? nurses and friends say just body reaction to surgery and if it gets over 101 to call back and they will page aurgeon. Not that high but feels bad and creates worry. the incisions etc look ok. nothing red or inflamed.

Sorry to be a downer all. I was feeling decent today but a bit worse now toward night and w the fever.

Lucy at the time I was scared to go home but I slept all day and eve and sounds like it was better than staying in hosp w IV in arm and beeps and checking all night. we set alarm and husband gave me pain meds during the night. not sure how much different in hospital. now I am just frustrated and worried w fever. i slept on and off all night so was fine.

GOOD LUCK!

PF

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Sep 12, 2019 11:22PM cathy67 wrote:

Purple-flower,

Just talked to husband and friend, I got low fever today, and I guess yesterday as well, but yesterday I took advil to relieve pain so I did not feel it. Then I checked the booklet from hospital, once it reaches to 38.5c, shall go to emergency. Right now, fever is already gone.


Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2-
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Sep 13, 2019 07:17AM Trying2staypositive wrote:

hi all, yes low grade fever normal post op I ran 99 and no one was concerned. Extensive bruising is on underside or outer side of each of breasts since last night. Scares me alot but surgeons notes say some bruising normal and can worsen 3-5 days out. Still im freaked. My mom is a retired nurse and told me its not a seroma bc that is raised. This is hard ladies-I cant lie although I feel better in some ways day 4 post surgery. But the pain is real. I need those pain meds and im the type that hates taking them! My drains are going good-have 4 and the fluid is already becoming lighter colored.

Pf yes I was placed in a bra post op and must be in it 24/7 only to remove for washing How I wish i could take it off. Seems to make things feel worse.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 13, 2019 08:20AM purple-flower wrote:

Hi ladies. 5am here.

Trying2stay - I am in a lot of pain also!! took Narco (narcotic with tylenol) before bed and during night again just to sleep for a few hours and now I am counting the seconds to take another dose of tylenol. i don't like meds either. not allowed advil sonce she wants to monitor swelling. what are you taking? so weird that I have no bra... nothing. just yucky bruise chest w expanders in then that you can tell. have looked at my chest a thousand times already so I guess that's good so no shock later. PS said I could shower starting today and I think she is insane. I am really hurting right now almost hard to take full breaths. hate this part. Sorry to scare others if you. everyone is different so donr worry about it.

PF

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Sep 13, 2019 08:25AM purple-flower wrote:

Cathy thanks for checking. fever hasn't really gone up so that good. In U.S. terms it's around 99.5-99.8. they told me if gets to 101 to call. how are you feeling? I am not allowed advil. I wonder if it would help cut pain more than Tylenol? PS wants me to watch for swelling and advil masks that. man this sucks I am in a lot of pain right now only 2nd day out but I was assuming drugs would help a bit more than they are. I have a drain on each side which hasn't been too hard to deal with. love my hubby!

PF

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Sep 13, 2019 08:27AM purple-flower wrote:

Lucy - hang in there! I definitely had very little sleep the days leading up to surgery. and woke up slightly panicked every morning to be honest. it will be behind you soon!

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Sep 13, 2019 09:12AM Trying2staypositive wrote:

PF did you have a bandage instead of a bra? Wow if you get to shower you are lucky! My PS says no showers till all drains gone. But all surgeons are different.

Cathy and PF i had same fever but it went away.

Was taking muscle relaxers for back spasm but had to stop bc it started effecting my ability to go to the bathroom (sorry tmi).

Lucy I dont think I have a seroma just bruising near incision but my mom said normal. Anyone else retaining a ton of fluid? Its getting better for me but dang!

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 13, 2019 09:51AM purple-flower wrote:

hi again

no bandages just the surgical tape covering under boobs where incision were. I had nipple sparing w all skin too there so they look like badly bruised deflated pockets but you can also see the expander edges inside which looks very ugly and weird. (they basically cut open at bottom and scooped everything out). I am actually kind of happy nothing on chest. can see it all... the good the bad and the ugly. i have a drain in each side and I bought that little waist pocket thing which works pretty well. I assumed I would have bra so strange not. I have/had pretty smallish boobs I wonder if thay is why..? where are your incisions? do you have expanders in now also? apparently they put some kind of numbing meds on them that wears off in 3-4 days so that is supposed to be uncomfortable at that point.

I am not retaining fluids I don't think but drinking a ton and peeing a lot too. very bruised which I am not worrying about. arm where SLN removal was is sore now also and scratchy throat and ear ache. geesh. morning now. kids gettinf ready for school. I am waiting for next round of tylenol to kick in. bleh.

PF

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Sep 13, 2019 10:36AM HopeWins wrote:

hi ladies. I'm thinking about all of you. I ended up having my surgery end of August but hanging out here as well because at one point it was going to be September. Anyway, wanted to give some unsolicited advice/thoughts.

Even if you're not taking opioids, I would take stool softeners until you're feeling regular again. The anesthesia alone is enough to stop you up. Day 4, my nurse advised 2 Colace 2x daily and I still didn't go. Day 5 (at night), I took a laxative to move things along. TMI, I know, but what goes in MUST come out, lol! I knew nothing about pooping issues prior to this but I learned that stool softeners make going more comfortable, laxatives stimulate you to go. News to me, but I needed the full cocktail.

This was just me, but around day 5 post surgery is when I started feeling more human. I took a couple walks, over did it and had a down day the next day. Then I bounced back and repeated that cycle around 5 days later, lol.

Everyone is different with pain. I've seen a few women say, looking back, they wish they had allowed themselves more pain meds because they feel their pain may have been a hinderence to healing. Idk, but it's an interesting perspective. I don't like the way narcotics make me feel, but I took a few doses the first week. Then I transitioned to Tylenol and then Sominex at night to help me sleep. I was taking ibuprofen but I think it gave me indigestion, so I stopped that.

Getting the drains out was huge for me. Wishing you <30ml soon and quick drain removal!

Retaining water - yes, and I'm also totally paranoid about lymphedema. The PT told me that swelling post surgery is totally expected through the chest and upper arms. I think drinking a ton of water helps. There's also a weird numbness and skin sensitivity around the arms/armpits that my BS explained can give the perception of swelling, even if it's not swollen or not as swollen as we think.

There are certainly ups and downs with these surgeries - pain, pathology results, body image, set-backs and little milestones. Glad we have this place to share and ask questions.

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Sep 13, 2019 05:29PM purple-flower wrote:

Hi all. just heard from my surgeon who said a common reason you get a fever after surgery is from not taking big breaths. which I can believe as it does hurt to expand chest that much. she said to practice a few times a day deep breaths and it should help. just thought was interesting so I am passing on. hope all going ok.

PF

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Sep 13, 2019 05:30PM Trying2staypositive wrote:

yeah be careful of muscle relaxers if they were prescribed. I only took them for 3 days and as a result cant fully empty my bladder so I am in the bathroom every 15 min it seems w little result. Its AWFUL. The half life of that drug is forever (literally days) so it will be a week before its gone from my system. I swear sometimes the “cures” for pain and problems have side effects that are worse than the disease! Im sooo uncomfortable. Im off the norco now bc it makes my heart race so just onto tylenol which amazingly works ok so far. Im not pain free but better than all these freaking side effects. This experience has been the hardest of my life so far health-wise. Waiting to hear path results is nerve racking too....

My te are over the muscle for those that asked. Theres a good amount of bruising and upper arm swelling and one vein that still has dye near my underarm, but its faded to bright green vs aqua blue. I dont have my first follow up till next Wed and my help leaves early Sun. Lord help me. My family depends on me alot-too much and I just cabt do much this moment.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 13, 2019 06:01PM - edited Sep 13, 2019 06:04PM by Lucy55

PL and Trying ..sorry to hear you are both having some issues 😟..This is what worries me about the surgery ...I remember the recovery for me wasn't all plain sailing ..which it is for some people ...I don't know if I had a low grade fever or not , as I wasn't told to monitor ...but I definitely had the fluid build up ...( but mine was at the outer edge of my insision .) .and I think depression started to set in for me after the surgery regarding having cancer ..I was diagnosed on the Thursday and had my surgery on the Monday ..so it was very fast ..which I wanted it to be ..so now I don't know when I think back to my recovery what was caused my surgery, and what really was my anxiety because of my diagnosis .

Oh well Saturday morning here in the Land of Oz ...so I just have to get to Monday morning for my surgery !

Cathy ..hope you are feeling good !

Hope ..good idea about the stool softeners...I bought my psyllium husks yesterday so I can be ready when I get home !!!

Hugs to all


Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 13, 2019 08:26PM - edited Sep 13, 2019 08:31PM by purple-flower

hi all. fever up again. was fine all day. now 100.4 bummer! frustrated and worried. no real other symptoms and on antibiotics etc so just not sure what to do and trying. not to panic. having fever headache on top of all really sucks. btw there is also "smooth move" tea to try.

PF

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Sep 13, 2019 09:29PM JenInMass wrote:

Jlimo, I hope all went smoothly today for you!

I think I am progressing well for just a few days out. I'm really looking forward to being allowed to shower and being able to comfortably get a non-button-front shirt on. I only have 3 ... running laundry right now.

My tissue expander is under the muscle and I'm not sure what pain/discomfort is from the expander itself vs. the muscle. I'm getting a little woozy from time to time. Grateful that I can still use my other arm for the most part (though still restricted because motion on the non-cancer side still can make the cancer side hurt). And even so, last night I gave up on finding a good postion in bed - I was fine at first but woke up at 3 to use the bathroom and could not wiggle myself into a position that didn't hurt so I gave up and came downstairs where we have a recliner on one side of the couch.

I also gave in and took a laxative a bit ago as the stool softeners weren't enough. I hope that will do the trick soon.

I have two drains and one is at very low output so I am pretty sure I will get it out at my appointment Monday as the doctor said was likely. I'm also supposed to be able to shower Monday though not until after my appointment. I am really looking forward to feeling clean but also dreading it. My instructions are to leave the dressing alone so I haven't seen the incision yet.

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Sep 14, 2019 04:13AM - edited Sep 14, 2019 04:14AM by Lucy55

Jlimo ..Hope everything went well , and you're resting comfortably !

PF...I hope you've got the fever down !

JenninMas..Hope you have a more comfortable night tonight ! It's so good when the end of the drains is in sight ! I know what you mean about the button up shirts ..I really don't wear shirts...so only have a couple ..but will make do with them ..I also bought a couple of over-sized T-shirts ..I figure that with a bit of help from hubby I may be able to get them on ..

Hugs to all


Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 14, 2019 07:55AM HopeWins wrote:

pf- ugh, I hope that fever goes back down! Big breaths are HARD the first couple weeks. When I had a tickle in my throat all I could do was a wimpy half cough. DH said I sounded like Zoolander with the black lung... movie reference there for any movie bluffs, lol

Ladies - on shirts, I was able to step into and pull up some v-neck t-shirts and wide necked sweaters/sweatshirts. Could also probably do that with any kind of shirt that has a zipper or a few buttons at the top, like henley's or quarter zips. If u can get it over your hips, you're in!

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Sep 14, 2019 06:43PM Sheila57 wrote:

I had a lumpectomy and sentinal node biopsy Sept 9th to remove two invasive ductal carcionma tumors and they took two lymph nodes to test as well. It was a long day with having radioactive dye inject first thing then an hour nuclear scan followed by an ultrasound and then topical freezing and insertion of two guide wires and then another ultrasound to confirm guidewires were inserted properly then two hour surgery. Then they tried to release me in the evening and I passed out in the lobby of the hospital and they had to re-admit me and keep me overnight. I am recovering well now but very tired and very sore. Every little movement hurts of course. It is quite an experience if you are also having the sentinal node biopys.

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Sep 14, 2019 09:29PM cathy67 wrote:

Hi Sheila57,

I had exactly same experience on September 10, but only one lesion area. I also felt very bad when the recovery room rushes me out, but they gave a wheelchair, and said I can stay in the hallway. We are very close to the hospital, so I let husband drive me home. After one hour, then I am okay to eat food and stay on a recline just myself in the evening. Every staff was very caring, especially the girl who handles my injection, her smiling face gave me much warmth, and I was just one of her many patients. The only thing made me unhappy is the recovery room, I already said I was not ready to leave, who wants to stay in hospital longer if one can leave, why they did not listen from one just back from operation room.

I am in Canada, vancouver area.

Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2-

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