Surgery August 2018
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When I was first diagnosed people would ask how I was doing and I would tell them that my emotions were like a river. Any moment you stuck your foot in it would be completely different. 100 seasons all in one day. Louisa Gordon on youtube (shes great by the way) talks about it being like in a convertible car with the wind blowing past.
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caren, that is great news! How is your pain? I’ve got 11 days until my bilateral mx.
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im 3 days post op. Im still on percocet. But im feeling alot better. Still sore. But manageable..ive had 2 csections in the past. I feel that hurt much more.
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hi Caren! So glad you are feeling well. I hope things continue to go well for you. Keep us posted. :-) PS I had 3 sections so your comment about that gives me hope. My bilateral mx is set for next Tuesday.
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Hi ladies,
Praying everyone who had surgery is feeling well. Those who haven’t yet keep strong.
I had mine on the 10th and yesterday I did something so stupid. Felt better so cleaned and moved heavy things around. Well in the middle of the night my drains were overflowing and I had a fever of 102.7 and stil do. The pain despite oxycodone is unbearable. Can’t move my arm and my chest feels like a bolder is on it . Chills and trembling all night and slept like 25 hours. I know I should go to the ER but it just hurts too much. Even my jaw and Teeth hurt. I moved some boxes in my Florida’s room and unpacked them cause was sucks of seeing them all this time since we bought this house. Well mold hadn’t grown around the room where the boxes were and stupid me cleaned it up. I think that’s where the fever came from.
SO if you feel
Better don’t overuse your arms. Worse pain I have ever felt in my life. Hate this just hate it all.
Everyone be well
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Idkidk, please go to the ER or call an ambulance. I'm so sorry that you're in so much pain and I pray that you feel better soon and get some help. Please let us know how you go.
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oh, idkidk.... please do call an ambulance. I know it has to be tough to do after being through everything you just went through but it could keep things from getting worse. Big hugs. We are here for you. Keep us posted pleased.
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idkidk, I hope you sought help!
I am three days post-op for a removal of a <1cm tumor at the scar line of my original mastectomy, lymph node dissection of level I and level II nodes, and implant replacement. It was supposed to be one overnight for observation, but when I was moved to my room, I was told two nights for pain management "because she had to be more aggressive than anticipated." I learned today in my post-op follow-up with my surgeon that my lymph nodes were "aggressive and corrosive". She couldn't give me a number because many of the malignant nodes had clumped together. So while I was hoping based on MO's initial assessment that radiation would do the trick, I learned today that I will not be able to skirt chemo. I'm healing well from surgery and doing my OT exercises religiously. Hopefully I can maintain my fitness level and go into chemo strong so I can come out of it strong(ish). I really have no idea what to expect. This wasn't part of my master plan....
Anyway, for those of you who have had your surgeries, I hope you're healing well. Best of luck for you who are waiting.
Sheri
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Piksie, I’m so sorry to hear about the lymph nodes and chemo, but I know just what you mean about it not being part of the plan! I went into surgery a node negative stage 1A and came out a IIIC with 9 of 22 positive nodes. Very much still adjusting to that and having chemo in my future. I like the plan of going into it strong!
Idkidk, please let us know how you are!
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Piksie And beeline I’m sorry to hear the news got worse after surgery. We have no control over this darn beast but we all must fight it with all we have. Chemo and rads will kill whatever was left behind. You both can do it and get to NED.I never went to the ER, decided not to only because the fever went down to 101.3. Drain holes are definitely infected. But I’m going in today to see the BS and PS. I’ll also be getting my post surgical pathology report. So hoping I walk out of there with no additional surprises. I’m 3C also with nodes that were clumped together and had all sorts of extensions. Interesting that they can’t tell us then how many were malignant. Guessing all were. I’ll see today.
Thank you for the encouragement to go to the ER my friends. Hopefully I didn’t make things worse by not going. I’ll post a pic of infected area where the puss and crust is. So gross and still entire chest and underarm feels so hard. Can’t wait for these drains to come out so I can take a normal shower.
Be back later and thanks again.
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Hello Ladies,
I just had my masectomy yesterday afternoon and waiting to be discharged. The pain is tk be expected but the sharp pains ( I am assuming nerve pain) is almost unbearable in my right breast. I am on some morphine and norco as we speak and half asleep 😂 but heck I couldn't sleep at all last night. I am happy to have found so many woman going on this journey like me. I hope to get to know you all better! Those of you who have under gone surgery God Bless you all.
Elizabeth
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Well, I have the double mastectomy planned for this Monday. I am still confused about the nipple sparing, but I will ask my doctor. I am a special education teacher and today would have been my 13th first day of school. It felt really weird to set up my classroom for a sub. It is hard being home today, but I worked out and cleaned house since I will be at the butcher on Monday.
Boymom4life...keep us posted.
I try to joke about having this, but this is not funny. I can't believe how many poor young woman are forced to face this and then they have try to have a normal life, dating, children etc. So sad. I am 43 and I have chosen to not harvest my eggs. I have no children, but now I am glad. I can't imagine having nobody to help me with this. My fiance has been absolutely amazing. I think he knows more about my diagnosis and surgery than me.
Is there a support forum for the men in our lives? Or for family? I am unaware.
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WonderWoman75, I know it's daunting to be having a double mastectomy soon but you will get through it like I did and the other women here who have.
Here is a link to the threads for caregivers, supporters and family of those with cancer: https://community.breastcancer.org/forum/16
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Wonder Woman, well said. My husband asked for support as well - I see the link now. Should be great to have. And hang in there. My bilateral mx is the day after yours. Idkidk, glad your temperature went down. Was very scary to have it that high. For those who have had surgery, I continue to wish you healing. For those who got unexpected results after surgery, I wish you strength and healing as well. We must continue to be strong. Hugs.0
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idkidk, thanks for updating us. Hope all went well with the BS and PS today.
boymom, hope you are getting some sleep now. I couldn't sleep at all in the hospital -- that part at least got better when I went home.
wonderwoman and sadlynew - good luck to you both and let us know how you get on!
I have been back to work for 3 days now... finally (sort of) got something done today. My right arm/shoulder feels a bit better every day. Hope everyone is healing well.
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I'm posting this under multiple surgery threads as I hope to get input from several of you.In doing my own preparation for prophylactic DMX this fall, I'd read where it helps to have small pillows for under the arms to relieve pressure from your arm resting directly against your side.I had assumed that was because of pain from not only any lymph node removal, but also because of drain sites right there.I made a pair of pillows for myself, and then because I like to sew and wanted to help other patients who don't have the time or ability to sew for themselves, started making more and am donating them through the nurse navigator at my local hospital.She gives them to women (along with a bag of other comfort items) at the time they come in for a pre-surgery class to learn how to take care of drains etc.My thought was for unilateral MX you get one arm pillow, bilateral you get two (drains on two sides).The nurse told me last week that the arm pillow is only needed for the side that had lymph node removal, and a bilateral patient that only had lymph nodes on one side involved only needed one pillow. I suppose for someone like me doing prophylactic MX, she would say I didn't need any pillows.Those of you who have already had your surgery – what are your experiences?Would you consider those pillows not needed if no lymph node surgery on that side?Would they help with drain incision areas?I'm not trying to second guess her as I haven't gone through this yet, but I don't want not give women 2 pillows if they would both be helpful.
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Joining here 💕. Preventative mast of left breast on August 29th. Had my right breast removed in September of last year. Grateful for this community. Was a member when I was going through treatment but couldn’t login anymore so I made a new profile ☺️
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good morning ladies,
Boysmom I hope you’re feeling better as well as everyone else who is post op. I have read many women posting that the pain gets worse days 4 through 6 and I found that to be true and that due to healing and thightibg if incisions and nerves and all regenerating.
So yes went yesterday and my incision and the area connected to that drain is infected so she gave me antibiotics. And she put, yuck a needle in the incision to drain any fluid out.
Pathology report whatever she said was kind of a blur I rambled nervously after hearing 12/17 nodes were positive and her saying “ that’s a lot “. The tumor before chemo was 8-9cms and after mastectomy was 8.5 x 8.5 wow so that’s weird. She said chemo didn’t help much, it’s a nasty strong papillary carcinoma. So according to the SEEM charts for 4 or more positive lymph nodes the 5 year survival is 62% I belive it said. So with 12 I asked Will I see my 13 and 15 year olds finish college and get married. She changed the subject to I need rads and hormone therapy and hope it kills any cells that are hiding anywhere in the body.
She is obsolutely a lovely woman and did get 10 to 14mm margins. At least that’s good.
Excuse my language no disrespect but FUCK CANCER seriously FUCK THAT BEAST I PLAN TO GO ALL WARRIOR ON IT. Can’t wait to get a Warrior tat. Never had a tat, never approved of them for myself. But it’s now on my bucket list.
I’m scared. Gonna go read some survival stories.
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Tatoos, purple hair ah the places we never thought we'd go. Rage on warrior sister!
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Dear Joyseeker43,
Welcome back. We are glad that you are connecting here in the community. Good luck with your upcoming surgery. Keep us posted on how things go for you. The Mods
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@allieben - how are you feeling? I thought I was ready to switch to ibuprofen today but gave in and took dilaudid just now.
At the time of surgery they decided to return the vancomycin (?) (I’d been told it would ne Clindamycin) and use a sister of Keflex since I reiterated that I CAN take keflex. I find that there is much mixed decision making and a lack of clarity about this and also about pain management plan after.
They could tighten up that process a bit.
ANYBODY HAVE BEACH BALL BELLY? i sure hope this is temporary. It’s not how my belly is usually.
Over the hump at least - aware that days 4 and 6 are worse? Glad I havent run out of pain meds.
Ashley
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Just got home from my one week post op. My cancer doctor said the pathology report was exactly what they were hoping. Its all gone. Lymph node free. Clear margins. Still grade 1. Stage 1. Exactly what they wanted to see!!! I saw my plastic surgeon too. He said im healing great. No bruising. No infection. So all good news today. Thank you jesus.
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Lol Rachel yeah gonna go comando.
Great news Careninnj I’m very happy for you !
God Bless everyone.
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Carin/Ashley, congrats on your positive-as-can-be results! Ashley, how's your beach ball belly?
BoyMom, how are you healing? I hope the sharp nerve pains resolve quickly. I took Gabapentin for Post Mastectomy Pain Syndrome (intercostal brachial nerve damaged) for six months after my mastectomy in '16. It started to work at 1200mg, but SEs became too much. Luckily, as I weened myself off, I found that the pain was manageable without and is almost gone now.
idkidk, FUCK CANCER!!!!! Radiate those little fuckers and have a long, happy life with your grandbabies! I have three tattoos that I hate, but I'm also considering a tattoo when this is over. I have no idea what yet, but I'm sure the next 12 months will provide plenty of inspiration.
I'm six days post-op. Walked about 3.5 miles on day four and felt great. Did about 30 squats yesterday, and within five minutes, my arm was on fire. I think the difference might be heart rate? Not sure, but I feel like it may have caused mild lymphedema down to my elbow. I'm not 100% sure because there's a lot going on over there. The drain is still in, it stings, there's likely still swelling from surgery, etc. Lymphedema is my biggest fear as it will sideline me long-term from the Uber-active lifestyle I'm working to get back to. I'll be fitted for a compression sleeve through UCSD soon, but I'm going to get one today from a Med Supply store. They're pricey, but I don't want to wait. And this stupid drain is a catch-22. I can't wait to get rid of it, but my range of motion exercises cause more drainage. I'm not going to stop the exercises, so I guess I just need to carry on. My boys are fascinated by it, so there's the silver lining...
Have a great day, WARRIORS!
Sheri
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belly swelling is killing me....I have IBS and that’s what this feels like though on a bigger scale. I’m likely constipated but I have had that for 20 years so I know what that feels like. This is different. Could it be the Keflex
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caren, that's wonderful news!
Five days until my BMX. Reading these threads are so helpful in knowing what to expect.
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borogirl, with regard to the pillows:
I was given a crescent shaped pillow similar to the ones you are making (bless your heart) as well as a small rectangular one with a velcro strap to attach to my seatbelt. I did not have any lymph nodes removed, but I have been using the crescent pillow a LOT and wishing I had one for each side. I have quite a lot of swelling under my arms since the drains came out (that was day 6 post BMX, now at day 9) and having the cushion tucked in my armpit reduces the pressure on the swollen area. I used the pillow when the drains were in too, but not as much.
Every time I use it I send a little mental "thank you" to the kind folks who donated their time and materials so thoughtfully. Hope this helps you decide!
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Hello All,
Monday is my day. I am physically ready, but my emotions are a bit ramped up. I have all of my button up pjs washed and ready to go. My husband picked out some strange pjs for me that look like clown outfits. I am going to make him wear one while I do just for fun.
Has anyone had their insurance company call them to try and talk you out of the double mastectomy? My BCBS insurance assigned a nurse to my case. By the time I was done talking to her, I felt a bit intruded upon. She knew about my plans for surgery yet kept telling me that a lumpectomy was a better choice. She wants to "check in" on me next week after I am home from post op. I found her to be quite annoying. Did anyone else have this experience? I won't be communicating with her again in the future regardless if she calls several times. Just wondering if insurance companies are trying to save money by gambling with our lives. Really annoying.
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