No help after bilateral mastectomy
I've tried Googling and I see a wide range of recovery information, from one woman who was up and ironing shirts the same day as her bilateral mastectomy surgery to people that cannot do anything for weeks. I won't have any help or assistance with my bilateral mastectomy (no reconstruction) on July 1. My family and people I know are across the country. I am boarding my dog for a week (due to work have to drop him off three days before surgery) but would have to be able to drive to pick him up four days later. (Alternative would be taking a train and expensive Uber). I'm participating in a pain study and told them I am not taking pain medicine afterward. My dog is 14 pounds and I would likely have to be able to walk him after that week. I stocked up on soup and things I can reach and be able to eat without reaching up. I am teleworking and can only take five days off from work, due to needing to support myself and no time off accumulated. I have a car with a low steering wheel (Honda Civic) and am checking if anyone knows if I'd be able to pull the door open and be able to drive to pick up my dog. I can't afford to board him that long, and don't know anyone out here. He's also paper trained so I guess he would be okay inside the apartment with me if I cannot walk him for a few days. I am in seemingly good health aside from the extensive DCIS, hike etc. My mother had a horrible time with two separate mastectomies (breast cancer three times) and had a bad time with the drains. I had a lumpectomy that failed to get all the DCIS and the lumpectomy did not bother me whatsoever. I know this would be hugely major surgery though, so I thought to ask. I just see widely contradictory information about it online. The surgeon is taking a few lymph nodes out, based on a test the day before, to see how they drain. My main concern frankly is just surviving the surgery and after that, I feel like I can somehow deal with it all. I am prepared to just sleep on the bathroom floor with my futon mattress if I don't feel like I can get around. I have a medical service transporting me to the hospital for surgery and then picking me up afterward.
Comments
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I had bilateral mastectomies, but had 2 separate surgeries. I was able to return to work (drive there and back) after taking 2 weeks off after each surgery. I likely could have driven even prior to the 2 weeks. Reaching above my head was a problem for a while, making washing my hair difficult. Once the drains were out, (one each time) things were much better. Pain was never a major issue. Tylenol was effective enough. In what city do you live? You should ask to speak with the social worker of the hospital where you will be having the surgeries, before you are admitted, and discuss with her about resources in the community so you can get help after the surgery for whatever comes up. Your oncologist’s office may also be connected with a nurse navigator or social worker who can give you information about resources that are available for after surgery.
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I agree that it would be good to ask a patient navigator to see if there are services available to you. My BS did not want me driving prior to my 2 week follow up, and I didn't end up driving until at three weeks when my drains came out. I probably could have managed it, but driving was painful for a while after I did start driving, even with a pillow. I had to put the seat belt behind my back. You don't really realize the range of movement involved in turning a steering wheel, especially a sharp turn.
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I had a UMX with an expander, so not quite the same. I'm a lucky one who had minimal pain and I was out walking within 48 hours of my surgery. But driving? Not for two weeks. And no backing up for another couple of weeks after that. What you don't want to do is strain the incisions, and pulling a car door closed, and turning your head to check behind you - those are things that directly impact your chest and could result in damage to the incisions.
Other things... with only one side affected, I was able to use my other arm to get myself in and out of bed, but it wasn't easy. Many women who have BMXs sleep in a lounger. On the floor on a futon.... unless you can get up and down without using your arms, that's not likely to be possible.
Best case scenario, you have little pain, you aren't wiped out by the surgery, and you have full lower body mobility and are able to move you arms to about the height of your shoulders. But lifting stuff, stretching, pulling, pushing, reaching up or out - you may not have that mobility for a couple of weeks and even if you do, you'll want to avoid those movements so that you don't damage the incisions.
Are you having nodes removed on both sides or just the DCIS side? Since it's likely most of the DCIS was removed during your lumpectomy and no invasive cancer was found, have you discussed with your surgeon why nodes need to be removed? I would guess that the risk that some invasive cancer will be found in your MX pathology is probably extremely low, since you've already had the lumpectomy. For me, the SNB was the most painful surgery and the most painful recovery. And node removal leaves you with the risk of lymphedema.
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Thank you very much. I like the sound of your experience, Beesie, with being up and walking in 48 hours. That helps to know that about driving then even though it is not the answer I hoped for. I will aim to take Uber and the train to get my dog. I guess I can't lift him though so that is going to be a challenge. The surgeon wants to check the sentinel lymph nodes for possible spread of microinvasion I guess, from the DCIS. I had a long delay with nearly 9 months passing before I got to the point of today, but the first surgeon (in San Francisco) said she got "most of" the DCIS. The surgeon (here, moved to 55 miles from LA) just last week had me do an MRI, which did not show anything she deemed suspicious. I do appreciate the idea of asking more questions about the lymph nodes. My mother had lymphedema and it caused her a lot of troubles. I did not realize one could get it from sentinel node removal. The surgeon wants to take them from just the right side, unfortunately my dominant arm. She said it might just be a couple, but I am heeding your words on the pain you experienced, so at least I can try to be ready for it. I did not realize that about getting in and out of bed, so I guess I'll have my futon mattress on the floor. It really helps to read your words today. Thank you for sharing what you experienced with me.
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Pessa, that is a great idea about the social worker. I am 55 miles outside of LA in Ventura County. The surgeon is in Santa Monica. They handed me a notebook with a lot of information but I have not gone through it. I think a social worker is listed in there so I need to try to call them. With the lumpectomy (in San Francisco), a social worker actually reached out to me when I got the diagnosis. In this case, I will try calling them to see. Thank you so much. I need to get up the energy to call them to see. It is good to know that after two weeks you were able to drive. That really helps me to hear today. I was thinking about how to shampoo my hair. I guess I'll have to do the best I can. It really helps to know that about your pain level. I volunteered for a pain study, so I am supposed to document how much pain I am in, and then report it at the post-surgery appointment, which is 1 week after the surgery.
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KARW41, is your surgeon willing to let you go home by yourself, with no help or anyone to check on you, or is your medical service taking care of that? I don't believe you can check yourself out of the recovery room without another adult agreeing to keep watch for a while.
As for the ability to get around and function after a mastectomy, everyone, absolutely everyone, is different.
I had a unilateral mx after a lumpectomy and axillary node dissection turned out to be not enough. I took opioid pain meds for a few days, but I was out walking the day after surgery, drove myself to a pedicure the day after that, and back to my office job 9 days post-op. Driving was not an issue. BUT...it was just one side, I'd already had the lymph node dissection months prior, no painful tissue expander was placed, I was taking a pain pill from time to time, and I am a tough old bird. I also had my hubs and brother hanging around (mostly having good times together) but there were there if I needed an ice pack or a bowl of soup.
And as Beesie said, even if you feel great, there are physical activities you shouldn't do for a while. Your surgeon will probably instruct you on those, and some surgeons are stricter than others. It's important to follow YOUR surgeon's instructions carefully.
I'm sorry you're facing this alone. If it's your choice, plenty good, you'll figure it out. If it's not...please PM me, I used to live in CA and have boatloads of lovely friends there who would consider it an honor to help a sister if they're anywhere close by.
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Whatjushap, it helps to hear your words on the driving and agreeing about the social worker/resources. I can imagine what you are saying and I guess I will find that out, on the range of motion. I have weak upper body strength to start with, and was in a car accident with whiplash about a year ago, and had trouble turning around for a while after that. They scheduled my post-bilateral mastectomy appointment for one week after surgery. I guess I will see what they tell me. I ordered two mastectomy pillows, one to use with the seatbelt in the car, and another one that holds drains in pockets. I don't know if they will help or not. Thank you.
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Thank you SBelizabeth. I have a medical service person who is waiting there (for a hefty fee) during the surgery and then driving me back home. It is a 55 mile trip each way, but I wanted to get a good surgeon. (One place there is still not doing surgery for patients in my category with the pandemic, so I tried this second place and they agreed to do it.) That is amazing that you drove so soon and were back to work in 9 days. I am liking the sound of that a lot right now. That is fantasic that you could do that. I hope I can be a tough old bird too. That is very motivational. My brother is back in Virginia as is my sister who is a recently widowed single mother of three young boys, so it is just me out here. I was going to try to move back to Virginia when my mother got diagnosed with pancreatic cancer in April (after three times having breast cancer) but with the pandemic, I stayed here and she died within two weeks of diagnosis. I seem to like being alone right now. I'm also a combat vet with PTSD (diagnosed with that a few years ago) and after being in a not-so-good marriage for 4 years, I kind of appreciate the quiet. It is good to know I can reach out though if I need to do so. I actually have a friend (not close anymore) south of LA but she's got three young girls and a husband who requires her to cook and clean and do everything for him, so I did not want to burden her. If I really get stuck though, I know I could ask her for help. Thank you SBelizabeth.
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A suggestion for getting your dog home from being boarded would be to reach out to the facility to see if they know anyone who would be willing to drive your dog home. You could explain your situation and perhaps offer gas money. It would be much easier than you trying to take a train and Uber, especially just after surgery with a Pandemic in full swing.
Have you checked into veterans organizations to see what support services they offer? Another resource is the American Cancer Society. The have some great community resources available to anyone undergoing cancer treatment.
I think you'll be surprised at how many people are willing to help.
Best of luck to you.
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I live in WLA. Another place to call for resources is the Community Cancer Center. It is in WLA about a block from Santa Monica. I have gone there for exercise groups, support groups, educational programs. Everything they offe is free. Call them to see what info they have for resources for help in Ventura. Their number is (310)314-2555
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KARWA - It's my experience with a bilateral mastectomy - sentinel nodes only on both sides - and no one at your house - that you should spend at least one night in the hospital if possible. Most docs can order this as medically necessary so insurance will cover this if they understand you have no one at home. Be prepared that you shouldn't even lift a gallon of milk - put things in smaller containers. So no - while YOU can walk, you definitely can NOT lift the dog, and likely not walk the dog for a week or two. Also as others have said, you shouldn't lift your arms above shoulders for at least a week & probably two. You'll have lots of internal stitches that will be at risk. And most are not allowed to drive for two weeks.
You've gotten some good info about help. I know it's hard to ask, but please put yourself first so you don't damage the incisions or stitches and get stuck with a "do over".
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I had PBMX direct to implant in 2014 - day surgery and left with two drains.
I was able to go for long walks daily starting the next day (slowly). But I had “T-Rex arms” for a couple weeks - not able to lift things or even arms above shoulders or over head including washing own hair - was not allowed to lift more than 10lbs for 2-3 weeks until first post op visit, and definitely would not have wanted to be walking even a smaller dog in case they pulled or needed quick attention. Definitely was not driving for two weeks or so - you don’t realize how much you use arms and chest driving, and you MUST be able to react quickly in an emergency for yourself and others.
I could work from home a bit after a week or so but only on limited amounts as I was fatigued between anaesthesia and my body trying to heal. Everything took longer for a while Went back to office fully at about 3 1/2 - 4 weeks.
I only took prescription pain meds the first day, after than only OTCs (Tylenol). My pain was manageable but it was the swelling and restrictions (and concerns about stitches popping) that got me. My drains were out after a week but I did have one instance where one got pulled and displaced so I was bleeding a lot and had to go get fixed back up.
You are going to have swelling, most likely drains, a lot of internal stitches....you need to be careful even when you want to do more. Can you get a dog walker or a neighbourhood kid even to take the pup for walks? Can the boarding facility bring your pup to you or find someone who can?
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Thank you very much. I am really grateful for the insights. I ended up reserving two weeks at the boarding place for my dog.
It helps to hear the experiences and about the fatigue. My mother had a bad experience with the drains and it may be the bleeding like you describe.
I will definitely have drains, and the nurse showed me how to empty them and measure the fluid, so I have a vague sense of it. I will find out in a week, I guess.
It truly helps to be able to read about your experience to know what to expect.
I just got a gadget that allows people to pick things off the floor without bending over or to reach up for objects, with the clamps on the end of it.
It also turns out that the office admin assistant told me the wrong information, and the doctor is having me stay overnight one night at the hospital after all.
I truly appreciate the thoughtful and helpful information today.
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Pessa, I am truly grateful for the phone number. It is comforting to know there is support out there.
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I am glad you were able to extend the stay for your pup; and it will make it that much nicer when they come home! It’s better to be safe than sorry and if you feel better after a few days maybe you can have them home a little earlier. Also nice they are keeping you overnight; I have heard they sometimes do that that especially if you live on own. Here they kicked me out within hours!
I had a relatively new to us but adult cat at time of my surgery (she is still with us, and still spoiled and lovely) and it was difficult to keep her from walking on my chest at times! I myself did have recon so was very concerned she would also do something to the recon as well!
Yeah my drain got pulled or pinched somehow during sleep I think. It was just a lot of bleeding and they had to clean me up, restitch the drain, and remove a clot that had formed and blocked proper drainage. It was a pain but it was more inconvenient than terrible. I only had them for a week or so but everyone is different and you don’t want to remove them too early either.
Oh, and little tip - make sure to put your microwave at counter level if it’s not built in. Get smaller containers of milk, juice, etc (or pour into smaller glass bottles before you go in) etc. Single serving containers of things like yogurt are not as environmentally friendly or cost effective but a lot more convenient after surgery.
I wish you a smooth recovery, take it easy and let yourself heal. Even without recon your body needs time even when your brain is ready to do more! -
Here are some additional resources for possible assistance closer to where you live. They might have some volunteers who are willing to help, or some programs available. ACS often has free rides available for patients.
http://www.ribbonsventura.org/resources/
American Cancer Society Ventura Office 2186 Knoll Dr., Ste. A, Ventura, CA 93003 (805) 644-4237, M-F 9-5
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Please have some pillows ready to support your body to get up. I had BMX and a lot of pillows under my head like a slope helped me able to get up. Please have a device to pick up things from floor. You can check it on this website in the list. I bought it from medical supplies store. Driving after a few days later surgery is risky for stitches. I would suggest not to pull or lift. Good luck to your surgery.
Cutie
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I feel so bad for you. If you lived anywhere within an hour of me I would most certainly help you out because I'm kind of in the same situation not as much but Im close to it. Please ask your surgeon about home care, Because I asked mine and they said that absolutely I could have someone come in once a day help me with my drains and help me out in anyway. Can you talk to them about that? I live in the Central Valley.
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Dear Michellelyn,
Welcome to the BCO community and thanks for sharing your story and support. We appreciate your reaching out. We hope that you will stay active here. Let us know if we can be of help. Thanks again.
The Mods
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I did my BMX as Same Day Surgery. I walked out of the surgery center and then walked into my house (up a flight of stairs) without issue.
I was self-sufficient from day 1 with no pain. My drains were ready to come out on my 1 week post op visit but, the PS decided to leave them in over the weekend to be safe. It's annoying because I now have to make another trip just to get them out.
I was told not to drive until the drains come out but, physically I can drive, in fact I did a mini drive (2 miles round trip) just to see how it felt.
I haven't lifted my 10 lbs cat or reached over my head but, physically I could do both without pain, I just don't want to damage something by doing too much because I feel good.
There is definitely a wide range of how you feel. I knew (based on previous surgery) that i would most likely handle it well but, I was shocked at how well I handled it.
Best of luck with your surgery!
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I definitely feel for you. I am having a double mastectomy with immediate diep reconstruction with almost no help if none. I will talk to hospital about one care for sure though. I'm sure insurance will approve of it. I hope my brother will come when he can but he lives a good hour or more away in traffic coming out of Boston mass to me in Rhode Island. But hoping my friend will check on me more than he acts like he will. Let me know how it goes for you. Best wishes.
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I recently had a bilateral mastectomy with reconstruction and two drains. I'm not in the same situation as you but somewhat similar. I had surgery that afternoon and didn't stay overnight. I was able to get up in the middle of the night to go to the bathroom by myself (due to my husband not hearing his alarm to come check on me) but it was a true struggle both due to pain and weakness but I did it. It helped that I was elevated in bed with a wedge pillow. I couldn't pull myself up or push myself up in anyway. It got easier after that. There was no getting up and down on the floor for weeks. Had I fallen, I would've stayed there. Carry your phone with you everywhere just in case. Get one of those grasper things (that people use to pick up pine cones) and don't plan on doing anything quickly. Everything will exhaust you. Everything. I wasn't back to work quickly but I have a labor intensive job. I was able to take care of my twin 4 year old boys a few days after that when my husband went back to workbut nothing was easy. I didn't drive for a while but when I did, both hands stayed at the bottom of the wheel with small movements to turn the wheel. Every day gets better. Practice getting out of bed before surgery using only your legs. It will help you prepare since bracing and pulling yourself up is out of the question. Good luck to you!
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Hi, KARW41, did you have your surgery on 7/1? How are you doing?
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Hi Morrigan_25,
Definitely get a visiting nurse to stop by. I am getting my left side off at the end of the month. I had the right side off last August. I drove right away and didn't take any pain meds. It was a bit uncomfortable and I had my drains in at least three weeks. The only problem was discomfort while sleeping because I am a side sleeper, so having one off at time helped. I got a U shaped pillow from Amazon which was a life saver. (Pharmedoc) brand. In fact, I need to wash and get into ready for the next round. The best of luck
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I wanted to tell you all thank you so much. I had minimal pain from the bilateral mastectomy (went flat/no reconstruction).
Just took extra strength Tylenol.
I wasn't quite doing work around the apartment like another person above noted, but I was able to fully function, raise my arms, reach into cabinets etc.
I had taken everything out of the higher cabinets, and now it is a mess in here, but it turned out not to be necessary.
In short, thank you all very much.
I am just glad to be alive.
I was really anxious about the surgery and anesthesia itself, but it turned out okay.
You all eased my mind and helped me prepare and I am very very grateful to you. Thank you.
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Ekojio, I hope to hear how you are doing.
If I were getting reconstruction, I would probably personally want help if I could get it, perhaps through health insurance if available.
With no reconstruction, I had minimal pain. I was really shocked by that.
I managed okay on my own, but I did not get reconstruction.
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So glad to hear you're doing so well, KARW41.
Best wishes for continued healing.
Trish
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Good to hear you're doing well, KARW41. Still, be easy on yourself, eat healthy meals with protein, get some outside exercise every day, and heal, heal, heal.
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Thank you so much for the kind words. Yes, I am totally re-doing everything here, in terms of how I eat, after this experience. I got new pans and realized I had pans from 1995 that were scratched and non-stick, etc, which is not good. Got a BPA free coffee machine etc. I am so looking forward to getting the drains out and going outside. I am truly grateful for the kind words of support today. Thank you.
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Glad to hear things are working out better than expected
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