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Recovering from a mastectomy

Recovering from a mastectomy

Posted by Badass Warrior on Oct 14, 2019 8:33 pm

Last Monday I had a mastectomy and reconstruction (implant) on the right (Matilda) and a reduction on the left (Priscilla).  I also had a sentinel lymph node biopsy, but there is some question in the node was located. Hopefully I will know more once the pathology report is back in another week. 

The drain gets removed tomorrow. 

I'm not really in pain, but, man, the discomfort! The binder is annoying and really needs suspenders. It feels like I have a baseball under my right underarm, not that I am poking around. Is it swelling? Or, is it possible that implant has already shifted? I just freaked myself out by consulting with Dr. Google.

Is this degree of discomfort normal?

Re: Recovering from a mastectomy

Posted by Wendy Tea on Oct 14, 2019 9:50 pm

Hi Badass Warrior‍ , great questions but please know everyone's experience is different. Since your surgery was so recent, likely the discomfort is from the node surgery. There is always swelling in the armpit. Do your arm massages which may offer some relief.

The chest compression bandage is necessary. Much of my discomfort was from the drain. You should have some relief soon. Use a soft pillow under your armpit to take the pressure off your arm and chest.

You are a warrior and I wish you well on your journey. 
Wendy Tea

Re: Recovering from a mastectomy

Posted by Ten_minutes on Oct 14, 2019 10:24 pm

Hi,
I too am recovering from recent surgery. 4 weeks today since double mastectomy and reconstruction surgery. My armpit is still swollen and like a softball! Make sure to put your arm on a pillow as much as possible, it helps a bit. Once the drains are out and the staples removed it is a tiny bit better. Such pain, so much that it is like a workout just to put up with the constant pain, stiffness and sharp zaps in my new “breasts”. I agree the binder is annoying. Open it up and rest on your bed without it for 5 - 10 minutes, lets you breath a bit. Hope you get a good rest tonight and your pain eases.
 

Re: Recovering from a mastectomy

Posted by Enise74 on Nov 9, 2019 11:29 am

Badass Warrior‍ I'm curious how you found recovery from mastectomy/reduction now that its about 6 weeks later? I'm decidng between what you had (Mastectomy with implant and reduction on other side) vs. lumpectomy with some reconstruction to reform a smaller breast and reduction on other side, and just wondering about the recovering from mastectomy. I'll have a node biospy as well, so probaly 2-3 removed. How did you feel after 4 weeks? In part we have a trip planned that I'm not sure I can go on if its 4 weeks after surgery, and wondering about how I'll feel. Some people say they are out riding bikes and grocery shopping 4 weeks after surgery, but others seem to be much slower. 

Re: Recovering from a mastectomy

Posted by Picasso’s mannequin on Nov 9, 2019 2:21 pm

Suggestions, as I became disabled after mastectomy. Be very fussy about your surgeon and ask how many times they have done it. I know it’s a discombobulating time but be warned.

if I were doing it again I would leave the number of sentinel lymph nodes up to the surgeons discretion, as I think I was injured by her digging around to find the five nodes that were neg anyway. She did not discuss the reasoning or risks.

As well, I didn’t think to tell my surgeon that I had somewhat limited movement in my shoulders, but she confessed that one of the reasons I was in a lot of pain was probably from events during positioning. It confused everyone as she didn’t tell anyone else or put in my record. The whole c*** up prevented me from receiving radiation or be able to do the physio. I think. They tore my rotator cuff or something, but who knows.

So, I would recommend loosening up your shoulder joint before surgery!:) especially if you are over 50!

As a result I also have two frozen shoulders, though I am relived to hear that resolves in time like many of the other side effects

Re: Recovering from a mastectomy

Posted by Scared on Nov 11, 2019 6:21 am

Hello,  I am 7 weeks since single mastectomy of left breast plus sentinel lymph biopsy plus removal of 1 other. 
I am guilty of not doing the exercises regularly but maybe once a day or every second day.  When I do them my arm aches so I stop.  Suffering from anxiety and depression doesn't help either.  I have done well getting off original take home meds if oxycodone. In fact I still have 3 left but am scared of addiction after hearing a few horror stories.  I vacuumed one room yesterday and arm has been sore since.  Too soon?  Trouble sleeping so now I took 1 tramadol.  I hope it works. If not, I may just take an oxycodone after about 4 or 6 hours. 

what has your experience been?  Will those exercises really help with swelling under arm or can they cause more problems like lymphodema?  
has anyone gone to physio on regular basis to get help with these exercises?  Should I ache after range of motion exercises?

I've also heard from others that binding helped with swelling. I was never bound after surgery. There was just a huge bandage across my chest.  Doctors seem to do things so differently at different hospitals that's why I'm asking for others opinions. 
 

Re: Recovering from a mastectomy

Posted by dmarie on Nov 12, 2019 11:34 am

Scared

Sorry to hear you are having problems with your recovery. Everyone is different and we have different levels of tolerance to aches and pains. How physically fit you were before the surgery will also impact your recovery.

I had a left breast mastectomy and 14 lymph nodes removed in December 2018. Of the 40 prescription pain meds I was given after surgery I still have 37 left. I did use some regular over the counter pain pills for a couple of weeks but that was it. I tend to be a grin and bear it kind of person :). 

It was stressed to me that doing my stretching  exercises was so important to ensure that the scar tissue did not tighten up and I would have full range of motion. I am still doing them a year later. My chest and arm did ache at the beginning but no more than if I overdid it a bit at the gym.  If you are having trouble doing them or are worried that you are not doing them correctly then it might be a good idea to get some help. Just make sure that you use a therapist that has experience with mastectomy patients.

Have you tried going for a walk at all? Even a brief walk a couple of times a day might help you sleep better and take you mind off of things. I know it certainly helped me.

Did you talk to your surgeon about the aches and swelling?  It might be wise to request a follow up appointment if it is causing you concern. He/she could also advise you about physiology.

I hope things improve for you.

Re: Recovering from a mastectomy

Posted by Scared on Nov 13, 2019 9:51 pm

Hi dmarie, thanks for your input.   I'm afraid I wasn't in top notch shape physically before surgery.  I was always busy between taking my 92 year old dad for appointments and outings almost every day and picking up grand daughter from school every day and with 4 children and 6 grandchildren children coming and going for all occasions.  My house was always grand central and I cooked and baked for all the birthdays etc.  Now I hardly see anyone anymore.   Hubby and I were alone for Thanksgiving too.  Oh well, they know I get tired easily so maybe they were being thoughtful leaving me alone.  They have busy lives of their own with kids in all kinds of activities. 

I like your idea of taking a walk but its freezing out these days although I do go to store and I'm walking lots there.
yes I went to physio yesterday and was bit sore after but only for short time. I'll be going twice a week now. 
today I did a couple of the exercises given but now still sore.   It's that darn swelling.  So frustrating.  Still hurts to wear a bra. It's almost 8 weeks since surgery.   I've seen my family doctor and he says its normal.  The surgeon is further away so I'm putting off seeing him.
it's bad enough I have to see oncologist again in 2 weeks for results of cat scan. This is when he tells me if he thinks I should have any radiation or chemo.   The thought of it makes me sick.  Especially  when I was told that lymph nodes are negative and surgeon got whole breast and tumour with clear margins.

WE booked a 30th anniversary trip for February 4th so I'm hoping I'll be feeling better than I do now.  This trip was booked way before I knew I was having surgery. 
man!  These nights alone are hard.  I'm retired but hubby is not.  I can only take so much tv.  It gets dark so early so I go out in mornings while hubby is sleeping but the evenings and nights are long.

do you take anything for inflammation?  Like to help reduce swelling?  I wonder if theres something natural I could take.   I think garlic is an anti inflammatory.  Someone mentioned massaging area with castor oil.  Anybody ever hear of that?
oh well now I have indigestion.  Ugh and I ate 4 hours ago! Crazy. Hard to sleep with indigestion.  I just cant win these days. 


 

Re: Recovering from a mastectomy

Posted by Wendy Tea on Nov 13, 2019 11:54 pm

Scared‍ , you certainly have lots going on. Firstly right now you are the only one that matters. Get better so you can get back in the swing of things.

Dont worry about wearing a bra unless it is comfortable. I wore elastic tube tops as they were more comfortable. I was given exercises to massage both arms. Start at the wrist and massage up to the elbow. The upper arm massage sideways from near the body away to the outside. Then massage up and over the shoulder. Massage the chest away from the armpit.  Do this often and be gentle. This will be done for the rest of your life. Swelling will slowly go down if you keep this up. My incision shrunk by an inch.

I had a mastectomy and lost 3 lymph nodes.  Everything was clear so I did not need chemo nor radiation. I am hoping the same for you. I too booked a trip and then got my diagnosis!

Please dont take any herbal remedies without consulting your oncologist. I am sure pain killers are allowed.

Try to walk as much as you can. Go to the library to get out. Grab a coffee. Try to stay active and involved. Even if all you do is people watching.

Best wishes 
Wendy Tea 

 

Re: Recovering from a mastectomy

Posted by dmarie on Nov 14, 2019 9:36 pm

Scared‍  I hope your CT scan results are good and you are clear to go on your anniversary trip. It is nice that you have something to look forward to in the midst of all this stress. 
Glad the physio is helping you. 
I also had a hard time wearing any kind of bra for the first couple of months after surgery. They all rubbed under my arm and drove me crazy after an hour. I found some by True & Co. at the Bay that have no seams and are really soft. They have removable padding so you can put in a prosthesis if you have one or just add more padding to the 'missing' side. They are still the only bra I can wear comfortably. 
 

Re: Recovering from a mastectomy

Posted by Scared on Nov 15, 2019 10:01 am

Thanks dmarie‍  . I will check out the bras at the bay. 

and wendy tea I do feel better if I force myself to get up and out of bed once I wake and make a plan to get out of the house for whatever reason.      I'm also trying harder to make myself do those exercises to get swelling down but the pain seems to last longer.  I woke a few times last night trying to get comfortable.  
sometimes I wonder if I should stay on pain killers like every 4-6 hours till this heals.  Although advil and tylenol do nothing for this underarm pain. I get temporary relief from icing it.  I sure wish they hadn't taken those lymph nodes especially now that I know they tested negative.   As they say 'hindsight is 20/20'.

you know they never put a chest compression bandages on me either.   Maybe that would've made a difference.?
who knows?  Should I try wrapping myself loosely with a big tensor bandage? Guess it couldn't hurt. I can just remove it if it hurts more.

Do any of you worry about lymphodema?  Both My surgeon and family doctor say I have nothing to worry about but the mastectomy specialist recommends I buy a light compression sleeve and make sure I wear it when I go on a flight.  I'm not going anywhere till February but I'm very nervous about it.   

Re: Recovering from a mastectomy

Posted by Wendy Tea on Nov 15, 2019 12:32 pm

Scared‍ it always amazes me how different the protocols are between provinces and between hospitals. I was lucky to have my surgery in a location where everything was covered from A to Z. I was so squeaky clean when I arrived for surgery, the health inspector would have approved of a meal being served on my tummy. lol.
I was given a two hour training session which covered drains, physio and self massage, arm measurements, chest binding, and even a social worker to answer any logistical concerns. I was also given a pillow for my arm pit and one for the car shoulder harness.
I hope that one of the nice ladies here Lianne_adminCCS‍  will be able to attach the massage protocol to this thread to help you. I was told that lymphedema would be a life long challenge and could rear its ugly head at any time. Don't worry about your February trip. Closer to the date you can assess your health and think about things you need to do to make your trip easier.
I would keep taking pain killers. With some pain, if you can stay ahead of it, you are better off than waiting until the pain is so severe. Also please mention your pain and swelling to your doctor as there may be a simple fix.
I did not know, nor did the doctors know, that my lymph nodes were clear until after the surgery. Better safe than sorry, in having some removed for testing.
Yes I would try a gentle compression bandage but again a visit to the doctor first might be a good plan.
Best wishes
Wendy Tea


 

Re: Recovering from a mastectomy

Posted by Lianne_adminCCS on Nov 15, 2019 1:32 pm

Thank you for the tag Wendy Tea‍ 

Scared‍ 
you have received some great tips here. As always, it is best to check with a medical professional about your side effects for the best course of action for you.
Regarding lymphedema , most if not all provinces have a  provincial organization. For Ontario, I am including a link to lymphedema risk reduction and prevention: https://www.lymphontario.ca/Risk-Reduction

Have you seen the breast cancer post surgery exercise book from CCS?  It can be found here.  Many physiotherapists take an extra module that specifically deals with women who are post lumpectomy, mastectomy and node surgeries as well as massage therapists can deal with lymphatic drainage.  Try to get hooked up with one of those if possible.

I had a lumpectomy and axillary dissection with 11 nodes removed ( 9 yrs ago ). I did the prescribed exercises daily for months and have little to no problems. I have a little stiffness in my shoulder ( likely from radiation ) but exercise and weight training helps keep it at a barely noticeable level.

Wishing you well

Lianne

Re: Recovering from a mastectomy

Posted by Scared on Nov 16, 2019 9:59 am

Lianne_adminCCS
Thanks for the info.  I did receive a book with exercises in it but just before I left hospital a nurse showed me the one where you stand facing the wall and your fingers crawl up slowly plus the pendulum one and I didn't feel like I could do those until drain came out and then I just concentrated on the pain and rest.  That's when I should've been doing more I think. It was a couple weeks before I started and even then I didn't do them every day but I sure am now.

Wendy Tea‍ 
I also hope and pray that my scan is clear.   I dread those treatments. 

Sounds like your hospital is way thorough than mine.  I even asked for a nurse or social worker to check on me and the surgeon said no we dont dont send anyone for that.  But I was told by others that he could've.  It has something to do with cutbacks.  
man  it's hard enough going through all this but it makes recovery harder when you don't get full support from our health institutions. 

oh and thanks for the tip on how to massage my arm.   Have you ever used one of those compression sleeves?
I wish I could stop myself from worrying so much.  At least I have Christmas to think about and then one month before the trip.  I kind of wish it was over already.  I'm a bit of a homebody. I like getting away but always look forward to coming home. 
I will keep up with therapy and try to keep busy too. I should get my 92 year old dad out of his apartment.  I haven't seen him all week. I used to make all his appointments and take him out almost every day.  He's been taking a cab to get to seniors centre to play chess instead of asking me.   
I want to get back to normal or as normal as I can 
 

Re: Recovering from a mastectomy

Posted by Lauren55 on Nov 19, 2019 12:12 pm

Hi Scared‍  I had a bi-lateral masectomy with lymph nodes removed on the right side in 2017.  The exercises are very important.  I  wouldn't push hard enough to cause a few days pain but I would do them till I felt stretching.  The massage that Wendy Tea suggested sound very much like the massage to reduce lymphodema.  It is not a deep massage but actually a very light gentle massage.  The idea is with repeated massage in the same directions the lymph system will rebuild and find new directions so the fluid doesn't pool.  It does work.  I had lymphodema and with dilligent massage and going to a lymphodema massage clinic I have managed to reduce the swelling to almost normal.  I suggest keeping your arm elevated when sleeping or sitting watching tv.  It makes it feel much better and also helps with swelling. 
I went on vacation shortly after i finished my chemo, masectomy and radiation.  I swelled up like a balloon.  I then spent the better part of the next three days in the pool which gave relief.  ** A pool is recommended for lymphodema as is provides constant even pressure over your whole body.
Now when I fly I wear a sleeve, mitt, socks and a pressure cami.  I landed in Hawaii without swelling.  Felt a bit like a mummy all wrapped up but hey it works.
Another thing about swelling, when walking it is recommended to use a walking stick so your arm is not hanging at your side.  I usually put my hand in my pocket to keep my arm elevated a bit or if it will be a long walk I bring a walking stick.  The idea is to keep your arm above your heart level as much as possible, or close to it.

As for heart burn, i asked my oncologist and he prescribed Rabeprazole.  Works like a charm. I don't take it often but it is a Godsend when needed. Usually one is all I need to clear up a bout.  Then it could be weeks before I take another.

As for pain relief my oncologist suggested tylenol arthritis as it is stronger than extra strength but not addictive.

Re: Recovering from a mastectomy

Posted by Scared on Nov 19, 2019 4:18 pm

Lauren55‍ 
thanks so much for the good info!   Even though I dont have lymphedema now I think I'd rather get ahead of it by buying a light compression sleeve to wear on the flight February 4th.   Not sure about the sock and cami.

Another thing I've noticed since I have this swelling is my underarm body odor.  I never had body odor like that before. Its gross.  I can't stand  myself!  No one else has noticed it ......but I do..... so I'm showering and sponge bathing throughout the day. 

sounds like you've got your situation under control.  Hopefully with your advice,  I will too.
thanks.

Re: Recovering from a mastectomy

Posted by Buffythevampire on Nov 19, 2019 6:22 pm

Scared‍ I had the foul smelling armpit too. Eventually it went away. I am not sure how long it lasted though. I went on the same type of training appointment prior to surgery that Wendy Tea‍ mentioned. I didn't get lymphedema but have heard of the compression sleeves.

Re: Recovering from a mastectomy

Posted by Picasso’s mannequin on Nov 20, 2019 11:39 am

I had my surgery in the states, and I was very poorly prepared.

A very nice “angel” volunteer from Chicago warned me to keep my arm elevated, especially as I slept on my back, so I did, on soft pillows. In the US they downplayed or never mentioned the problems.

The surgeon hinted that something had happened during the surgery, as I had a lot of pain. I believe now that they damaged my shoulder, and I could not really do the exercises til later.
 

Re: Recovering from a mastectomy

Posted by Scared on Nov 20, 2019 11:20 pm

Picasso's mannequin,
you were lucky to have that 'angel ' with the good advice .  I dont know why we aren't given all information before tests and surgery.  Scariest part of getting sick is that we are vulnerable and at the mercy of the professionals.

so since you've started the exercises do feel that your shoulder is getting better??