April 2018 Surgery Support Group

AbbeyNormal

My surgery (double mastectomy) is tomorrow and I'm so anxious. My fiance and I will be having a quick boobies photo shoot later. "Just so we can have the mammories of what they once were", I said. Humor is my way of coping. I'm really trying to stay upbeat. Boob puns help. Still, I'm so nervous about what awaits. I've learned in this last week what intense stress can do to your body. I had a fever one day, broke out into a rash the next. Best of luck to everyone here. We got this! Soft, healing hugs to you all!

ChelseaSculler

Lumpectomy surgery went smoothly, even the goddamn mammography to place the wires wasn't as bad as the biopsies (pro-tip, pull out an old ipod if that's a stressor for you like me—since it doesn't connect to the world, my radiologist was fine with letting me keep one earbud in during those procedures).

I'm mostly surprised at how good I felt afterwards. I didn't need a nap, didn't even fall asleep early (and I was at the cancer center at 6:15am), and was starving after--insisted on going out for lunch. Took one pain pill because I thought I should, have taken a few tylenol since, and iced. Incisions (2, 1 was for the tumor and the SNB, so that's under the arm, other is for some atypia calcifications) look really good, my surgeon was as good as she said she is! Working at home today simply due to the lifting & shower restrictions, but looking forward to getting outside in a bit. And maybe I'll want that nap later?

You've all got this!

Engine104

Dear AbbeyNormal,

I will keep good thoughts and prayers going for an easy operation tomorrow and an easy recovery too for you. My wife is having her mastectomy next Tuesday. We're nervous.. More and more as it gets closer.

My wife sounds a lot like you. She jokes a lot about this too and it helps her cope. I am sure she is more nervous than she lets on.

Love your user name. That's from one of my favorite films!

LAMinders

Well, I’m one week post op. Had a bilateral mastectomy with immediate TE placement. I came out with 4 drains, 2 on each side. I’m not going to lie- it hurts. I was given pain pills and a muscle relaxer. During the day, I’ve been able to stop the pain pill, but have taken the muscle relaxer mid day to get some relief. Sleep is hard because I can’t get comfortable. A friend gave me a special pillow wedge that helps but my back is still in knots. I have decent movement in my arms, but cannot raise my elbows above my chest.

If you remember, this is actually my 2nd surgery. I had a lumpectomy in November and the surgeon got clear margins. Today I got the news I was most dreading, yet the best news at the same time. My pathology on the remaining tissue that they removed with the mastectomy. They found more cancer (DCIS, stage 0) in a different area of the same breast, outside of the clear margins from the lumpectomy. And this is after I had chemo! Had I opted for lumpectomy and radiation this cancer would have grown. But, with the mastectomy it's all gone!!! No evidence that I will need more treatment but I will talk to my oncologist to make sure. Surgeon said I made the right decision for the bilateral (she initially thought I was going overboard but went along with it). Crying tears of joy and fear and relief all at once.

Hope everyone who is post op is recovering well. Sending supportive hugs to all who are approaching surgery dates.

joy2

Hello AbbeyNormal! I wish you a good luck on your surgery tomorrow and fast recovery too. I have my surgery on 25th and I am nervous too as days are getting closer. I think it is better when you have a closer date instead of waiting and thinking what you are going to go through. Please let us know your experience after surgery.

LaMinders, I am so happy for you that you have no need for further treatment. I wish you all the best and fast recovery too.

mianola

I hope everyone who has had surgery is doing well and that those waiting for surgery can find comfort in knowing You Can Do This!! Tomorrow will be one week since my double mastectomy and lymph node removal. My pathology results came back today and they weren't as good as we had hoped. As expected, I had a large area of DCIS. I also had a 1.8 cm of IDC and 2 of the 6 lymph nodes tested positive. Looks like I'm going to have chemo and radiation in my futre. The good news is my surgeon had great margins and surgery is all done. I had my first fill during surgery, so I even woke up with "baby boobs". I'm healing well, but I am still in quite a bit of pain. My arms and the mastectomy area are really not horrible, but my rib cage where the drains are hurt. To top it all off, I woke up this morning with hives from head to toe. I'm allergic to the antibiotics they gave me. I spoke with the doctor and she didn't seem overly concerned - just some cream and benedryl and hopefully, I'll be good.

The thought of chemo scares me to no end, but I'll deal with that as I go. I'd appreciate any encouraging words from those who have gone through it before surgery.

Wishing quick recoveries to all of you.

star2017

mianola, I was very scared of chemo but didn’t find it too bad. Fatigue was the main symptom. I wish you the best, and please don’t hesitate to ask if you have questions

MAC58

Hi all, got my pathology report back today from the lumpectomy and sentinel node biopsy. It's good and meh...the good is other than one node that they removed there are no other affected nodes! Thank God...I was so worried about that. Then ...margin in one area still tested for cancer. So my surgeon will have to go back and extend the margin. Believe me I know this isn't so bad, but I just hate knowing I have to get more surgery. Has this happened to anyone else? Prayers for all the upcoming surgeries and for all who already are recovering

PaulaAtlantaGA

Hi, other April Surgery Ladies,

My mastectomy with axillary node dissection will be Friday, April 27. I decided to just have the right breast removed as the left showed nothing on mammogram, ultrasound, and MRI either before chemo or after. To those facing chemo, as a triple neg I'ave had AC and Taxol with Carboplatin, a total of five months. I'm happy to answer questions.

Anyone else having or had mastectomy w axillary note dissection?

We already biopsied my sentinel node at diagnosis: malignant. My BS says to expect her to remove 10 - 12 nodes, depending upon what she finds.

I've been strong during chemo, but as my window for surgery narrows to two weeks, I'm finding myself anxious, nervous. Any of you early April folks who want to comment or message me, I'd be grateful.

Paula

CoComedy

Gentle healing HUGS to all ladies who’ve already had surgery and HUGE best of luck HUGS to those getting ready for surgery!

I had my bilateral mastectomy on April 4th. It was my first surgery so I had no idea what to expect. I can honestly say it was VERY easy! Much easier than I ever thought.

Recovery hasn’t been bad either. I haven’t experienced any pain but I’m uncomfortable. It’s mostly a heaviness/squeezing feeling across my chest. The pain pills and muscle relaxers help but they knock me out!

I was surprised at how much I can move my arms and get around. I’ve been showering and washing my own hair since the day after surgery.

The worst part for me is the “surgery blues”. I’m not used to being down, home bound, sleeping most of the time and I think it’s starting to depress me. The surgery kind of made this all “real” too. I had a good cry the other day that helped and am trying to get out of the house for a short time everyday. I think it’s helping. I’m starting to feel human again and not just a “cancer patient”.

Happy positive thoughts to you all!!

joy2

hello CoComedy! easy recovery to you too and a loots of hugs. Did you have reconstruction to? It is so good to hear that it was easy. I have my bilateral mastectomy with immediate reconstruction on 25th.

CoComedy

Hi Joy2! Yes, I had tissue expanders placed at the same time. I was surprised when I woke up to find they were already filled about 300cc’s!! I wasn’t expecting that and really confused at first. The expanders are ok. It feels a little tender around the edges and they feel tingly or numb. It’s hard to describe. Definitely not painful. They do feel HUGE to me. Like I have two dinner plates attached to my chest. It’s just temporary though. All in all, not bad

GOod luck with your surgery!!! I’m sure you will do GREAT!

Mrsmcg

I had saltines and graham crackers along with water and ginger ale. I have severe issues with anesthesia, which the patch and Zofran did nothing for. I thought I left okay, until I asked if I could use the restroom. As soon as I tried to move, I threw up, and had a hard time stopping. I got more Zofran, which did nothing. By this time it was late, my surgery started around 3pm or so. My nurse called my PS, and he told the hospital to keep me in overnight. I vaguely recall ordering a breakfast at some point. I think I finally ate breakfast around 8:30am or so.

Mrsmcg

My sister had DCIS in one breast and LCIS in the other breast. She was told that the LCIS is a marker for risk, and is not cancer, but that DCIS IS cancer, it is just in situ. The DCIS she had went along the underside of one of her breasts. I believe it was 5cm or 6cm in size. My sister literally took MONTHS to make her decision, and had several opinions.In the end she decided to have the affected side removed. One of the doctors told her that he was fine with her waiting for a month to make her decision, but he wouldn't want her to wait any longer than that. Well, she did wait much longer than that, and ended up having the same surgery. My sister now feels that she could have just lived with the DCIS in her breast forever since some people don't think that DCIS is cancer, since it is not invasive.

Sorry I don't know what grade/stage my sister's DCIS was. When I've asked her she tells me that she doesn't remember.

Seek a second opinion. It will likely put your mind a peace, so that you can enjoy the time leading up to your daughter's wedding!

2catsintheyard

Hey All -checking back in post surgery here. I was diagnosed with HER2+ In right breast back in October, had 6 rounds TCHP Nov-end Feb & just had BMX direct to implant on 4/11. Unfortunately in surgery path showed right nipple had some involvement & had to go (areola stayed), sentinel node indicated 8 axillary nodes on tight needed to go as well. What that means for me is radiation but how much will have to wait for rest of path report. Also, I cold capped and kept enough of my hair to look like hair

All that being said-the surgery experience was so much better than I thought it would be. I wasn’t stressed because I knew I had to do it anyway so why give it any further power? Staff was great, had both Emend & Scope patch so no nausea whatsoever, ate a full dinner & snack (surgery was 7:30 AM). Did take percoset all day yesterday but may switch to Tylenol today. Am sore like others and slow to move with T Rex arms but not in massive pain.

Try not to stress, it’s not as terrible as it seems (easier said than done I know, but true nonetheless). I’m trying to feel the same way about radiation now looming in my future and just hope they can wipe it all clean one way or another no matter what has to be tolerated to get there.

Jennifer522

Tuesday was my bilateral mastectomy with expanders placed and filled to 300cc. My BS took 5 nodes from my cancer side and 2 from the other side. While in the hospital I was in little pain. And the only pain meds they gave me was tylenol through IV. I was discharged the next day at 12:30.

They served me dinner at 5 on surgery day but I wasn't hungry. I had only been out of recovery for less than 2 hours. Ate a little soup. Then asked the nurse for a snack at 9:30pm when my hunger came back. Drank a lot of water and pee'd a lot that night. Having to call the nurse to help me to the bathroom and they were documenting how much urine output was. Oh and it was blue! I pee'd blue for 2 days.

Yesterday (Thursday) the pain hit. It wasn't terrible but I didn't do much but sleep and wake to take meds and eat a little. Today is much better as pain goes, still sleeping a lot and being careful how I move.

I made the mistake this morning of taking antibiotics on a empty stomach. Then felt nauseous. I had an appt at the PS for a dressing change. So I took a Zofran for the nausea before I left home and that made me dizzy. Drank a bottle of water at the PS office and felt better after a while.

Dealing with the drains and all the med's has been worse than the pain.

rachelcarter35

Okay so plans have changed. It's so unsettling to have to adjust. I was going to have three lumpectomies and oncoplasty reduction simultaneously on April 25. My surgeon called on Monday and told me she didn't feel confident about clean margins because of the shape of the third lump that was newly discovered. The list of reasons for a double mastectomy are growing. Three lumps, cancer in both breast, check2 mutation, and dense breasts. So I'm leaning towards a double mastectomy with expanders on April 25. It's funny I was walking around last week (with plan A) worrying about the risk of cancer recurrence and this week with plan B I'm worrying about the pain and long recovery from a double mastectomy. I'm sorry we all have to be making these plans and having these worries....gearing up for battle.

star2017

I agree dealing with the drains is worse than the pain

2catsintheyard

I will have to cast my vote for the drains being the biggest pain, both figuratively and literally. Make sure whoever is stripping them to empty does not let up on the pressure so it ‘backwashes’ air or any fluid back up the tube. It Hurts. We are all getting the hang of it though. Am glad I have help to deal with them.

Rachel-for you especially-I went with BMX direct to implant and the matched set looks really good already despite Saran Wrap, dressings and bruises. It’s a hell of a route to get implants to replace less than spectacular 50+ year old boobs, but there might as well be some kind of bonu out of all this! So try not to be hard on yourself when plans change. At least for my journey through this it seems the only constant Was change.

We’ll all get through this inch by inch and bit by bit-then it will be memories to erase or slam into an imaginary box at the back of the closet with a padlock on it. That’s how I feel anyway. I have a lot more living to do and the sooner this is endured and over with the sooner I can start!

joy2

Hello to all you ladies that already had mastectomy. I wish you a very easy recovery and get better soon.I have my on 25th this month, I forgot to ask my doctor if i will need any special bra after the surgery, or bra with the front closure? if any of you ladies have used any please let me know so i can prepare myself to have that too. Thank you!

ShimmerGal

Hi joy2,

I've read a wide variety of recommendations for bras afterwards, and it will depend on the type of recon, if any. For my experience, the hospital sent me home with 2 surgical bras that were mostly OK. I had a wound vac on the first week, so it was a little awkward with that and the drains all at once. My surgeon didn't recommend any compression, that is until I developed a seroma about a week after the first drain came out. So the compression was recommended to help my body re-adsorb some of that fluid.

For after the drains are out: There are a couple of front close bras that are quite affordable online, if your insurance doesn't cover them (I was given a heads up that mine occasionally rejects claims for prophylactic procedures) but the sizing was tricky!! The Fruit of the Loom front close cotton bra was too small in my band size despite my going down in size (34DD to 34C) with DTI. So maybe because of the implant location and swelling and all of that, the 38 fit much better. And I'd say this one is very similar to the ABC Style 110 that the mastectomy boutique offers for a leisure bra. For the Carole Martin Full Freedom front close bra, I'd need to add at least 2-4 inches as well. The 34 fits me like a compression bra at the moment. My favorite so far is the Jockey Front Zip Seam Free bra. It's like a comfortable hug of a sports bra. These were all bought on amazon, and ranged from $8 - $20. Ideally, the best bet is to try some on in person if that's an available option, but with some trial and error you might be able to find some online that work too.

LAMinders

I was sent home with a Dale post surgical bra- bilateral mx with TE. I went into this as a 38 DD and left the OR with 100 ccs in each TE and 2 drains on each side. No compression, everything attaches with Velcro. I’m just over a week post op and got the ok yesterday to wear a regular bra as long as it is front hook with no underwire. I had 2 in my drawer. One fit but was tight in the ribs. The other didn’t fit. I just ordered a few 40s from amazon. Had no idea my existing bras would be too small!!!! Glad to hear I’m not alo

CoComedy

Hello ladies. Hope everyone is continuing to heal and those with upcoming surgery— best of luck! You will all do great!!

Joy- I woke up from surgery with a white, surgical, bra/cami. It was actually very comfy! My PS had me buy a couple front zip sports bras before surgery to wear after week one. I found them at WalMart.

2cats- I agree!!! The drains are starting to become a real pain! My husband is in charge of stripping them. He takes his job VERY seriously and works hard to get every little drop out. Sometimes he’s a little too aggressive and pulls a bit too hard. OUCH! I certainly won’t miss them!

Rachel- sorry your plans are changing with such short notice! I’ve found to expect the unexpected with this stupid disease! My thinking is that the most important thing is to get rid of the cancer. Whatever my surgeon needed to do is ok with me!

I meet my Onc Wednesday. Hopefully, we will know what the rest of my treatment will be. I’m okay with chemo (most likely) but secretly hoping my OncoDX comes back at 1. Lol! Not likely.

Is anyone else still waiting to see what the rest of treatment will be?

Gentle HUGS

LisaK12

My double mastectomy was Tuesday morning, with a sentinel node biopsy and immediate direct-to-implant reconstruction, Mentor smooth round 550 cc silicone implants placed pre-pectorally with alloderm. It went as well as could be expected. The surgery took 5-6 hours. When I woke up in the recovery room I was extremely thirsty but not hungry at all. I did eat a salad later that evening and slept a lot. They were supposed to use a nerve block on me but weren't able to due to an interaction with one of my existing medications, so they used dilaudid, ketamine, celebrex, and Tylenol. When I woke up I was just happy to learn that I had sufficient blood flow to the skin that they were able to avoid tissue expanders and went directly to the implants, and that the preliminary results from the sentinel node biopsy were clear.

My BS was Dr. Christine Teal at GWU Hospital in DC, and my PS was Dr. Joanne Lenert. Both wonderful. I received great care at the hospital for the two nights I was there. The food wasn't bad! I had a small private room with a window. It was too hot but otherwise I had no complaints. It is nice to be out though so I can sleep uninterrupted, without being awakened constantly for blood pressure checks and whatnot. When I was released I was given prescriptions for dilaudid, valium, and an antibiotic and was also told to take Tylenol around the clock. I have not taken any of the dilaudid and only took the valium the first night I was home. For the past two days I have just been taking the Tylenol and antibiotic and my pain is about a 3 on a scale of 1-10. Not completely comfortable, but manageable. I have some soreness in the pectoral muscles in the upper part of my chest where they meet the implants. Things are still lumpy and swollen for now but not too bad.

To my surprise, I have full range of motion in both arms. I went for a 20-minute walk outside yesterday and that felt good. I am not having any problems opening child-proof prescription bottles by myself, or getting myself out of bed, or the basic functions of life. My appetite is normal

My biggest complaint are the drains, because I am not allowed to take a shower until all of them are out, which could take a while! I have four -- two on each side. I am hoping I can get at least two of them out at my first follow-up on Monday, which will be six days out from the surgery. The drain sites are itchy. And I don't like wearing the surgical bra (but I never liked wearing bras of any kind). I think once the drains are out my quality of life will improve dramatically.

My number one tip is definitely take a stool softener before, during, and after -- even if you've never needed one! Those opioids do a number on you.

Good luck to everyone on this journey.

Engine104

We are now about 24 hours away from my wife's mastectomy tomorrow. She is handling it well. As I've written, this is her third time battling cancer ( BC x 2 and AML) over the last 22 years, so it is a familiar enemy, unfortunately.

I'm still a bit concerned that Kaiser is doing this on an out-patient basis, but we spoke with a close friend of ours who is an oncology RN and she said that the shorter time you have to spend in-patient the better. Hospitals are basically big petri dishes for germs and infections.

Please keep my wife Janice in your prayers. I will post updates when I can.

PaulaAtlantaGA

Engine 104: My mastectomy and axillary node dissection is April 27. My husband, like you, is an amazing, loving, thinks-of-everything partner whom I could not imagine going through this without. I know you are a loving rock (funny image, but you know what I mean) for Janice. I am wishing her a smooth surgery and recovery. I'll have to spend a night here at Northside in Atlanta as my surgery won't end until 6:30-7:30 PM on a Friday evening. Hope I get out Saturday! Best to you both!

Paula, Atlanta, GA

Engine104

Thanks, Paula.. I hope your surgery and recovery goes well too. I'm glad your husband is supportive. I try my best.

Through the previous two times, as well as this one, Janice has always relied on me to do the research. I cope that way. She copes by keeping her sense of humor and asking me questions every so often.

Obviously, after one battle with BC 22 years ago (Lumpectomy and radiation) and then acute leukemia 16 years ago, we had pretty much assumed we were done.. Not so much, as it turned out.

LAMinders

Engine - thinking of you both. The surgical center at the hospital was wonderful. My surgeon put extra pain medicine in me before closing me up. Didn’t take it all away by any means, but I am sure it helped let me go home. Hopefully Janice’s surgeon will do the same for her. My boyfriend said that almost as soon as I woke up I asked to go home. He thought I should have stayed in recovery a little longer but I wasn’t having any of that. Luckily he is my loving rock (Paula- love that term!).

Be prepared with lots of do pillows to prop up her back and arms. I was very dependent on Steve to help me up from sitting and laying. I’ve heard lazy boy/ reclining chairs are a huge help but we didn’t have the room for one.

You are both in my thoughts for a speedy recovery.

Anonymous

Hello! I just wanted to chime in! Engine, you sound like an amazing, supportive partner to your wife!! My husband has been that for me, too!! I feel so blessed to have had him by my side through out all of this, as well as the past 36 years. I don't know what I would have done without him. He has been my rock through it all.

Paula & Lisa good luck with your surgeries!! I had my bilateral mastectomy in Sept & my exchange surgery in Dec. I go in this Friday for fat-grafting. I was supposed to have it done in Dec but wasn't able to because of an infected cyst that was discovered in my belly button during the procedure. I'll be glad to get this done. I have 3 more Herceptin treatments and this surgery and I will be finished!!!!!! After a very long year!!!!!

stephilosphy00

Hi everyone, I am two weeks out from bilateral DIEP Flap reconstruction and doing pretty well! I was told today both sides were clear of cancer per post-surgery pathology report!