August 2019 surgery support group
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To all the fabulous and brave August surgery ladies....well, it's been quite a month, but we all made it out the other side. Thanks to everyone for the support and encouragement; you all have been great. This forum has made the summer from hell much more manageable. May everyone heal physically/emotionally and may we all stand a little taller. Warm wishes and gentle hugs to everyone. xx
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Ak_btrfly - glad to hear things are moving forward for you! My part-that-hurts-the-most changes constantly, lol. I almost posted a question on the DIEP thread to ask when the back stops hurting but I went on Friday to get my drains removed, which meant it was time to start wearing my abdominal binder. I discovered it almost instantly made my back feel better! I was able to stand up straight and my body stopped hunching to protect the belly. I think its subconscious cleanching. Idk, but the binder has done wonders for the back. It's a bit of a PIA to sleep/sit with but I'll take it for now.
My abdomine is feeling better/stronger every day and my back is better too. My new sorest spot is under my arms. Always has been sore and swollen but it's the current front runner for discomfort. My PS made the vessel connection in the armpit area. On the up side, this meant no rib removal. On the down side, I have an incision that goes all the way under my arm and stops at my latissimus area and it's very swollen and sore. Its manageable though. Starting to feel human again and seeing that light at the end of the tunnel.
Glad to hear everyone is progressing!
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Hi all!
We've been preparing for Hurricane Dorian. I've also been taking the time to get stuff done around the house and enjoy some "normalcy" before I start chemo (scheduled for a few days from now, but may be pushed back a week if my area gets damage from the hurricane).
I just want to let you know that I'm sending you all continued good wishes for quick and easy healing. Take care and please check in from time to time....I hope all of us have nothing but good news and improving health from now on!!!!!!!!!
Leah
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TMH-my oncologist did not know or forgot to tell me that after bmx the nurse cannot apply anymore pressure to insert the needle for IV. If I or my BS were advised I am sure my BS could insert the port during surgery. I am disappointed but there is nothing can be changed. The onco nurse could not see in the system how many lymph nodes were removed as well because the BS is from another hospital. The clinic who did biopsy recommended me a Mo and a bs from different hospitals I do not know for what reason. I didn’t notice it at first and then i liked both of them and decided to go forward. But this create problems of communication .
The ladies who placed the port in separate surgery, how it is done and is it too painful
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Margun-I had a rough time with my port right after it was put in. It was mosty discomfort in my neck area. It lasted about 3 days, and then it was fine. I think I was an exception though. Most don't have issues with their ports.
I hope you are all doing well
Hopewins-my pain has been moving around too. I have had the binder on since my surgery, and it is annoying. I feel too compressed from my chest down. I am wondering how long I will have to be this way. My current pain is at the last drain site. It is itchy and pulling. My next appt is Tuesday, and I hope it comes out that day. I would like to take a regular shower!
Wishing those headed for chemo no side effects. You got this!
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I am in the third week of post surgery and the sixth week of post Taxol. I am still sore due to surgery and still have neuropathy due to taxol which I think are expected. But I have fatigue and I feel lying down and have nap during the day, which is not me. Is this unusual fatigue is normal after more than 2 weeks of surgery? Maybe herceptin is adding to the fatigue?what is your experience
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Margun
I haven started chemo yet, but I’m 4 weeks out from surgery and still feel like I could nap each day.
I would imagine for you, the fatigue is a cumulative effect of past chemo, Herceptin, and just the overall mental and physical stress from diagnosis and treatment.
((Hugs))
Tracy
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Margun--I am 3 weeks out of surgery too. Perfectly healthy going in (starting chemo 9/10) and I am still really dragging. I don't have much pain. Just super tired. I am almost certain its the mental aspect of the whole diagnosis. Take it easy.
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Hey All!
3+ weeks out of surgery and I’m still tired too. One of the visiting nurses told me that effects of anesthesia can effect your body for months (?). Apart from childbirth, I have never had major surgery as an adult.Our bodies have been through a lot, I guess we should be tired. Hope everyone’s drains come out, and that everyone is doing okay!
Lauren
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Has anyone with expanders experienced discomfort with fills? The first was fine, but I had a fill today and I have to say, I am uncomfortable
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I got my last drain out today, and I am so relieved! I feel much better today, and got the thumbs up to take off the compression garments at night time. I am also able to drive. I am very happy with my results, but truth be told I didn't like my size before. I meet with my oncologist this afternoon, and then no appointments for a month.
Good luck to those starting chemo and radiation. Prayers you are all recovering well.
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congrats notdefined!!! How far out from surgery are you? I love what my compression garment does for my back and belly but it is a PIA at night? The PA said she thought I would need to wear it 24/7 for 8 weeks... It would be great if I could at least take it off at night.
Finally got my pathology back and no surprises. Sentinel node negative. Right breast had some additional DCIS and atypical. Left breast had atypical and calcifications. So I guess I'm NED... im trying to get my head around this. Has felt like a nightmare but I think its over.
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Congrats HopeWins on NED! So glad there were no surprises! It's weird how everyone is given different guidelines. Yes, I was told I could go bra-less at night, and not need to wear the binder or spanx. During the day she recommended I stay away from any underwire bras, so I need to stick to the sport bra with zipper, and I will replace the binder with spanx. I really hate my binder, so that is a relief.
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HopeWins, that's AWESOME news!!! Yay! I'm lurking on this board still to see how y'all are doing. I'm technically on the September list, since my BMX with implants is scheduled for 9/11. Still anxious waiting out here, but SO glad to read all of your various posts and updates. Thanks!
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Hi Ladies ..I've joined the September surgery group ..I'm having the second breast removed ..but just wondering what you ladies who've had BMX have been advised to do for having blood pressure and blood tests taken regarding the risk for lymphoedema ?
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Yay! Congrats, notdefined and HopeWins!! That's great news all around.
I'm 11 days post op and my drains aren't out yet. Sigh. I'm starting to dream about showers. All is healing well, though, and I'm trying to keep the itching down.
Lucy55, not sure what you're asking. I have high blood pressure and had a BMX. The nurses did the bioimpedance testing before everything and I have a follow up in a few more weeks to be tested again. I unfortunately get my blood pressure taken regularly and no one has said anything about changing those processes due to the surgery or lymphoedema.
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Lauren - my PS is waiting until after chemo to do fills. There is a tissue expanders (TE) thread under the reconstruction board, they may be able to answer. I'm not looking forward to that process. Hope your discomfort lets up soon.
Notdefined - Welcome to the drain free club! Isn't it wonderful?
HopeWins -so happy to hear your good report, hopefully you can start to move on now!
ACchaos - I hope you join the drain free club very soon!
Lucy55 - did you have lymph nodes removed on the other side? Will you when you have this breast removed? The rule is no BP cuffs on the arm where nodes were removed. If you have nodes removed on both sides they can do BP on your leg, and find alternate veins/sites for injections and blood draws.I made the mistake one time years after my first DX. I wanted a flu shot and a pneumococcal shot. They wouldn't do both in one arm, so I didn't tell them about my node removal and had them give me one of the shots in the arm with the nodes removed. Trust me, you don't want to risk it. My arm HURT for two weeks. Not sore, it HURT.
I started taking pre-chemo steroids today, and get my first infusion of Cytoxan and Taxotere tomorrow. I'm so ready to get this first one done so I know what to expect.
I hope everyone is recovering well.
Tracy
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Lucy55 - I second what Tracy said. Headed into surgery and once you've had lymph nodes removed you have to take precautions on the effected side to prevent lymphedema. I don't remember the whole list but I think you can get it from a PT or maybe your BS office. Avoid:
- Needle sticks/blood draws
- Blood pressure checks
- Hair bands on wrists
- Sunburn
- Harsh cleaning chemicals
- Gardening without gloves
Point is - take extra precaution against trauma/infection because it can trigger lymphedema and once you have it, there is no cure, just management. There are also some folks who recommend wearing compression garments when flying - gauntlet and sleeve on effected arm. The more nodes removed, the greater the chance of developing lymphedema.0 -
Greetings! I am 6 days out from my BMX with direct implants 7 years after radiation treatment to one breast. Had 2 drains removed yesterday.
I am 7 years out from my lymph node removal and have been doing great not having any signs of lymphadema.
Still get used to my new body and the weird numbness of the new breasts. Pain has gotten much better and am trying use just motrin, tylenol and CBS. Fortunately my plastic surgeon had me showering the same day as I was released. The soapy water is to just run over the incisions.
Keep progressing everyone!
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Belinda so glad to hear you’re doing well and feeling more comfortable. Getting rid of even some drains is wonderful isn’t it?
Tracy
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dear Belinda977 I'm so happy to hear you're doing well. I just took a peak at this board because I may be getting a double masectomy in Sept and wanted to see how the recovery was for people.
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gretchy
I was worried about recovery too, but it was really a lot better than I had prepared myself for.
Tracy
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I had surgery on August 19th and it is close two weeks post taxol. Last Wednesday and today I vomited a few times. The first was combined with diarrhea and nurse concluded it was stomach flue. This time they believe that tomatoes I ate was too acid for my stomach but I ate already tomatoes post taxol. How er I was very fatigued from yesterday and nurs told me that my hemoglobin level in blood taken last week was dluightly lower than post taxol and they are giving me snother appointment next week to monitor it. I did not eat as well as before surgery than after surgery. May be that is the reason but the lowered hemoglobin level worries me a lot. My lymph odes were believed negative but still no one knows in cell level apparently. anyone has hemoglobin problem post surgery
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I had surgery on August 29th. Doing fine
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HopeWins congrats on good news! I finally had my post-op appointment today but still waiting for genetic testing? Which BS said could indicate a need for chemo? No problem in sentinel node & the margins of the tumor were "clean." So maybe chemo (3-4 months), maybe not, but definitely radiation (3 weeks). BS said the days of burns etc are the in the past (congratulate me, I didn't laugh). Overall, no complaints. But more waiting, of course. Why in the WORLD am I so tired? Weird.
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Had a rough moment today when my TE felt soooo uncomfortable. Hate when I get to brake down mode. Did too much today, and paid for it I guess. Sleeping without a sports bra tonight. Sounds silly, but feels like I’m taking back some power😳. Keep recovering Warriors
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prehistoricmom
I was not supposed to have chemo, but then they did the Oncotype Dx and it indicated chemo was beneficial. So here I am, had my first chemo today. Hopefully your score comes back low and you can avoid chemo
I’ll throw everything we can at it to keep it from coming back. I’m jaded after 20 years of dealing with this.
Tracy
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Lauren
The skin stretching is probably the discomfort, I hope it feels better soon. I’m interested in your experiences as I will start having fills in November once chemo is done.
Tracy
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Tracy,
Sorry you have to do chemo. I did not think I had to do radiation and it appears that I will do some. My experience since January is that plans continually change 😡. I’ve been through chemo first, and it was not as terrible as we have seen in the movies, really. My worst SE was fatigue (and hair loss), but I made it through. You will too! We will all get through this mess (even with the occasional melt down and maybe a glass of wine).
Laure
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I'm curious how other folks with expanders are doing. It feels like I've got two plates stuck to my chest and they're super in the way of everything. Mine are above the muscle in preparation for DIEP flap reconstruction after chemo. They put some air in during my BMX to hold some of the skin projection. I drove for the first time today and was shocked how awkward it was due to the expanders.
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