I'm new to this site… I have been recently diagnosed with infiltrating ductal cancer. I was dumbfounded and truly thought that the mammogram, ultrasound and biopsy were all going to result in good news. My surgery will be on August 9. I will be having a mastectomy and am opting out of reconstruction. I would love to hear from anyone who is interested in sharing their experiences in regards to their surgery and post surgery recovery. I have many questions; will I need button down the front shirts that are bigger than my size to accommodate the drains? Can I pin the drains to my clothes or use a regular lanyard? Are mastectomy pillows helpful? For how long after surgery will I need to wear a mastectomy bra? Has anyone accessed massage for their incision?
Any tips to make my surgery/post surgery recovery more comfortable would be very much appreciated.
I'm so glad you found us. I think most everyone can say they were dumbfounded when they were told they had cancer so you are with kindred spirits who certainly get it!
You've got some great advance-thinking ideas already for how to deal with this upcoming surgery.
YES, get button-down or zip-up tops. I lived in the same zip-up hoodie for most of my post surgery recovery. Larger tops are better, not only for accommodating the drains, but also for the ice packs and extra bandaging that you'll be sporting for a little while.
YES, mastectomy pillows are a lifesaver. Especially in the car ride home from the hospital when you don't want that seatbelt strap anywhere near your sensitive chest area.
I would add to the list of wellness tips the importance of doing the post surgery exercises. Can't stress that enough. And start doing them the day after surgery. You may only be able to do simple shoulder rolls at first, but stick with them and you'll regain your range of motion.
I had a double mastectomy (no reconstruction) so can't answer your question about mastectomy bra, but maybe cancertakesflight can (she had a single mastectomy), or the many wise women in this thread, Drains after Mastectomy, can.
I found the most painful part of the whole experience had to do with the lymph node removal. The removal of the breasts, and managing the drains was a distant second in comparison.
Are you having lymph nodes removed, either by sentinel node biopsy or axillary node dissection?
PS: I love your site name! Is there a story behind that name choice?
welcome to this community - sorry for your diagnosis---lots of folks here to share their stories and experience.
I know EXACTLY what you mean when you said you kept thinking it would not turn out this way. even tho I had some pretty convincing images I was SURE the biopsy would come back clear (ha ha ha)….funny what our brains do to protect us!
I had my diagnosis, surgeries & radiation therapy last year. March - July.
I had two lumpectomies so I cannot speak to the mastectomy question, but I did have a sentinel node biopsy done at the same time as my first surgery. the initial injection of the radioactive tracer was fine. done at a separate clinic outside of the hospital, it was quick and almost painless. the surgery site was quite small, it was a bit tender….had it not been in the thick of COVID I would have returned to work within days of the surgeries. it all healed up fine, but I was left with some numbness down the underside of my upper arm, that lasted easily 6 - 9 months. from what I read here, not uncommon at all, and nothing I worried about.
good luck on the 8th. if you think of any other questions or just want to chat, we are all here for you.
#newdiagnosis #breastcancer #mastectomy #sentinelnodebiospy
@Sunny One Welcome to the site. I'm sorry to hear about your diagnosis, but I'm glad you found it. I didn't discover this site until after all my treatments were over. If it makes you feel any better, I was diagnosed 10 years ago and I'm still going strong.
As @ashcon said, I had a single mastectomy waaay back in 2011. Like she also said, I did exercises right from the beginning. I received a list of exercises from the place where I had my surgery. There were light ones (really kind of stretches) for right after the surgery that progressed as time went on. They really made a difference and I recovered my movement more quickly than others I have heard share there stories.
I didn't have a mastectomy people but that could just be because it was so long ago. I just used a regular pillow to put between myself and the seat belt. As for pining versus lanyard. I pinned them in place and my husband rigged a sort of daisy chain of elastics around my neck that I could the drains in when I had a shower. Depending on the hospital and doctor, some people can't shower until they have their drains out and others can. I had someone come in to change my bandages, so I would shower half an hour before she came so that I wouldn't be sitting with a wet bandage for very long.
As for the massage, I did a massage on my scar tissue. I was told to use some vitamin E sort of lotion and to make sort of a circular motion going one way on my incition and then a zig zag motion going back. I only touched the incision. There are special massages to get lymph moving, but I wouldn't really get into that right away. There are people specially trained to do that but there are some things you can do at home by yourself. There is right and wrong way to do this.
When it comes to mastectomy bras, I want to confirm what you mean. I have heard for after some kinds of surgery, but that didn't apply to me. If you are referring to the bra you wear if you want to have some kind of prosthetic, then that doesn't come until quite a while later. I didn't get a final one until about 6 months after my radiation treatments because the treatments can affect the shape of your chest wall.
I didn't have any pain after my surgery. I don't know if that is common or if I am just special. I never took painkillers and I never even used ice. It was just the drains that drove me crazy. They are awkward. Just remember, if you do pin your drains to your clothing, don't pin them to your pants. I forgot once and went to pull down my pants and I ended up pulling on my drains, but no harm done. :-)
As the others have said, this is a very caring and supportive group. My only regret was that I had found them sooner. Please ask any questions you have.
Hello @Sunny One , I was diagnosed two years ago with IDC, and like you, dumbfounded. Went to the doctor feeling 100% confident it was a mistake, but biopsy does not lie. A reality hit me hard. After not getting clear margins with two lumpectomies, I opted for a left sided mastectomy with immediate reconstruction. I just wore a loose button up shirt and pinned the drains to it. Being propped up with pillows helped with the sleeping and over all resting, but you will be uncomfortable for a few days. You will find what works for you best when you get home. Make sure you have help and someone with you, because for the first couple of days, it will be rough. (sorry for the bad news) I think I had two rough days after the surgery, and then it was off to the races to get back to normal. You will be dealing with a double mastectomy, a bit tougher than me, but it is amazing what the human body can overcome.
Others on this site prepared meals ahead of time, so you can just warm up, when you are not feeling 100%. I did not do that, but I also had help for a week afterwards, so this was not an issue for me.
Wishing you all the best and fast recovery. Let us know how you are doing.
Maybe you're getting more answers as others reply to you, and maybe through exploring the site too!
It took me about 4 weeks to get a reasonable range of motion back, but it wasn't till about 8 weeks of doing exercises regularly and returning to the gym (this was pre-covid days) that I got full ROM.
You're name is wonderful. I thought of you when I saw this. Sometimes you need to allow yourself to not be positive, and that's ok. Especially now!
Thank you for your kind words and information. I think I am realizing that I will not need a mastectomy bra as I do not plan on having a prosthesis. I will be vigilant in doing post op exercises and am glad to hear I will be able to do some incision massage myself.
After my lymph node removal 3 years ago, I still have numbness under my arm and some pain but it is not lymphatic drainage just angry lymph nodes.
A shower chair was really helpful, I could just put my drains on my lap and not worry about fussing with them.
The exercises to keep range of motion are important. I lost about 10-15 percent range right after but that quickly returned. Because I had good range of motion, I liked wearing long tank tops to keep the drains from catching on things.
Best of luck and definitely continue to reach out. Each person has a different experience but there is always someone that had something similar happen.
if it were not for the stomach incision from the DIEP, I would have been able to do most of my regular personal hygiene and household activities about 2 weeks post op.
Just be patient. The healing process takes time. Even after the drains are removed your body will need time for all the swelling to go down and for you to get to your new normal.
I'm so glad you posted and got so much great feedback around other people's experiences. I really hope you feel more prepared going into your surgery.
The importance of exercise was brought up a few times. I wanted to give you a link to our publication: 32071-exercises-after-breast-surgery-en.pdf (cancer.ca). I hope you find this helpful!
Please feel free to reach out as questions pop up! We are here for you!
I had my single mastectomy less than a week ago, and I feel like I have almost full range of motion already! I have an expander, but I asked to have it pre-pectoral, so no muscle is affected. I've been on Tylenol extra strength only (didn't feel like dealing with side effects of morphine), and I am going to try going off of it today - although I do have a few twinges and it gets sore under my arm from the sentinel node biopsy (they took out 3 lymph nodes).
I've been wearing the post-mastectomy camisole since the operation - definitely recommend one, it is pretty comfortable and convenient. I also use the filler inserts that come with it as a hidden 'pillow' under my arm (tucked in the side of the camisole) when I go out. And I've been wearing an improvised arm sling around the house to help me remember not to lean on that arm or use it too much.
Good luck! For me, the last week has gone a lot more smoothly than I was expecting.