Hey everyone. I'm 34 and recently diagnosed with invasive lobular cancer. I had a left mastectomy on Thursday. My lymph nodes had to come out to because cancer was present but I don't know how many nodes were affected yet.
I'm not in pain as such but the numb feeling is getting me down. I've got no feeling in my upper arm, shoulder and breast and I'm wondering what experience other people have had.
I haven't looked at my breast yet because I'm not ready to. I have a temp reconstruction until after the rest of my treatment.
It's still early days & all your nerves & muscles have been cut so that's why it's feeling numb.
Have you started doing your exercises yet, that will help & you can gently rub your arm & shoulder with your other hand.
You'll look at your breast when you are ready, I couldn't have a reconstruction due to an underlying medical condition & the Medication I'm on.
Mention to your breast nurse how the arm & shoulder feels, did you have a pain block? I did & I think that can make the shoulder feel a bit numb too.
Very Best Wishes 💐
Keep in touch & let us know how you're feeling.
Mrs N xx
Hi
Yes agree with above comment, its very early days still, i still feel fairly numb after right mastectomy dec 2015, having node clearance too damages nerves etc...I was diagnosed at 34 with invasive ductal grade 3 with just my sentinel node involved as it turned out after pathology report.
try to get as much movement in your arm but gently to avoid it going stiff.
Have you got an expander at moment? I had one and then had my implant put in 2 months ago, really pleased with results, in my clothes you just wouldn't know.
Keep well xx
• in reply to
Thanks for your reply. I have a full temp implant so you can't tell in my clothes either. Just the drains giving it away at the mo. I'm having pain in the arm today. Think it's nerve pain!
This is just the start. Chemo next.
I'll get all the results in two weeks of what they found when they tested what they remove.
Hello there I was diagnosed last oct with invasive ductal. Subsequent right Mastectomy then post op path report said invasive lobular cancer x3 with, as it turns out, full node clearance - 6 nodes positive out of 11 removed). The surgery was Dec 7 - over 20 weeks ago now (I've stopped counting! 😳😄) and I'm still numb at the back of upper right arm close to armpit and at a spot on my scar. Different medical people have said differ not things: some say the nerve has been cut & some say damaged (scraped?) during surgery.
I also have lymph fluid below my armpit, and a bit still in my upper arm. I do manual lymph drainage twice a day.
I got a couple of shooting sensations 2/3 days after surgery - I guess as the post surgery morphine / pain block wore off.
I started my exercises the day after surgery; unfortunately my flexibility regressed a lot during weeks 2 and 3 post surgery due to cording so I am still doing them daily. If I don't stretch my affected arm it stiffens up! But I have maybe 80%+ movement now 😁. So yes it is still stiff when I stretch it and yes it worries me esp with radiotherapy coming up but there has been lots of progress 👏.
I don't have an implant. I first saw my mx wound when the district nurse came to change the dressing, maybe a week after the op? I had a drain at that time, I was okay seeing the wound; it was exactly as I expected.
I wish now I'd taken more photos of it! To track the improvement, to know I am fixing. My scar is now white in places and smooth and I have to say I think the surgeon/s have done well 👍🏻
I found it difficult to imagine making any progress yet here I am, with 80% movement returned, reduced cording and lymph fluid, and a scar that's healing up nicely! It does happen, we do heal and i have learnt to stop panicking. It is worth remembering our bodies have been thro major surgery!! And our emotions have been - and maybe still are - on a roller coaster ride.
Sincerely hope this helps at least reassure you somewhat. I also found reassurance in speaking to MacMillan, esp their clinical nurses.
It is such early days, you need time! I'm 6 weeks post op and I can't bear to touch anything around my chest area because it feels foreign- on the plus side- I sure as heck felt the needle on my right side when I had my chest expander filled on that side- but nothing on the left as yet! For me, the nerve connections feel like electricity going through my chest wall - breathtaking but very bearable! I invested in vitamin E oil that I slather over everything to minimize scarring and it's helped
Ps, move the arm you had lymph nodes taken out of, cording can occur , it hurts and I've just had lots of physio to get rid of mine!
Well I feel I have a tight bra on .i sort of looked at it real quick , I deffo concave.my kids looked as they asked. I hope for reconstruction later.
Went to m and s outlet yesterday with my drain in pocket of big long waist coat. It's ideal . I thought I might pick up post surgery bra but it too early.
Well I said sod it and got two nice Lacey Camis! Make me feel a bit glam.
I'm trying to move a bit cos I don't want constipation.
I have been doing the exercises,are you able to do that.?
I made some soda bread just to use the hands, very gently,I peeled a few potatoes taking my time.
I put the drain in the bag you hang off your knock and stick it under the pillow next to me at night.
I got a cough last 2 days worst at night. So go gave me anti biotic so that gave me good sleep last night.
I wonder did you have a chance to chat to physio?
Do you have district nurse? Mine only visit today!have a chat with her. Don't suffer in silence,we all have our own journeys and be strong, you will get stronger everyday xx
I had a nurse come the next day after discharge but I told her not to bother again because she showed me how to measure and empty drains and I didn't want to waste her time. Your brave going out, I haven't felt well enough. I think the physiological impact is bigger than the physical at the moment. I have a prescription from the gp now for some anti depressants because I suffer and I don't want things to get to bad.
I got bras from Asda they are called soft and comfy. They have some lace cami type ones and bras and they are so comfortable and only £6 each.
Movement seems ok in my arm today. But I have nerve related pain on my elbow and the back of arm.
Tomorrow I am going to visit the haven nearby which is a cancer centre so I can see what support there is.
Hi I wear the Asda soft and comfy bras still two years after my mastectomy, just because they are so comfortable, don't know why I used underwire ones before as they were bloody uncomfortable!
Be kind to yourself at this stage, if you need antidepressants then take them, it is a major thing that has happened to you, talking about it to people helps, especially people who have gone through it, makes you feel you are not the only one.
Exercise has loads of benefits and is essential for movement in your arm, and can help mentally as well.
Keep posting on here and you will get lots of support xx
Hi can't really add anything other than, the numbness gradually gets better. I had all the symptoms you do, and it all gradually comes back to life, with a pins and needles like sensation. You can't pin point though, whether it's itchy, tickles or is painful. Was very odd and would wake me up in the night. I would get people to rub my shoulder blade and my upper arm at the back as this helped.
The nerves are healing after being cut, I think it was about a week to ten days after the op when the pins and needles got worse. My consultant prescribed Gabapentin for that and it worked well. Was only on it for a week or two.
Look after yourself, and deffo do the exercises on the sheet. Have to say have very little feeling in my breasts now just the outer edges really. (18 months since mx and node clearance left side, right mx Nov 16).
Hi ilovemarsbars, it's pretty sh*t all of it isn't it, and you are more than entitled to feel down.
Try and think about the positives, you've had the mastectomy to get rid of something that was killing you. Yes you still have a journey ahead, but ultimately you've done something positive. The numbness does get better but takes time, it's still early days for you so be kind to yourself .. you have to heal mentally as well as physically .
I had my mastectomy in August 15 and still haven't finished, had a preventative mastectomy of my other breast last November and am hopefully Having my final reconstruction in November. It gets me down at times especially how long the process is but I try not to dwell often. Look after yourself, and keep talking when you're feeling down, keep posting, we've all been through similar and can hopefully help you through, or if you can talk to a friend or family about how you're feeling that would help you too ...
We all do underestimate how serious this is you are bound to feel down, l know i did and the pain relief was strong so when i came off that i was all over the place,but its amazing how quick you will adjust or learn to cope!!
I had both of my breasts removed. With expanders put in at same time. I had a lot of pain. I still have some numbness but just in the breast area. Good luck with everything.
We are going to grieve there is no denying and I have had my cries.I cry cos I lost my boob and then I remember why it had to go to try save my life.Then I remember how many of us are out there.Ive been shut up in this house since Jan , feeling tired after two lumpectomies. Yes I am in a bit of pain and feel I have a tight bra, but I want to walk, try get some sun before I face radiotherapy.i will have a month of tiredness.
I'm a lone parent and I want my kids to see me get better everyday.
I think the cancer support groups are great! I'm have a tester facial and reflexology today!
I haven't worn bra ,I don't know what size I am! Going for results weds,I wonder tonthey meaaure me there? Do I get prosecthis then?
I check out the bras you mentioned x
Week two post op, gonna keep those exercise going,the kids are doing them with me lol !!
It's difficult. I went for a walk yesterday which was hard with my drains still
In. It is painful but you need to keep moving.
I don't know about prosthesis because I had an immediate temp reconstruction. Don't be afraid to ask your breast nurse any questions. That's what they are there for x
Hey ladies have you thought about a Look good feel well pamper session? I went recently. Got a free bag of make up. It was 3 1/2 hours return car journey for me to the MacMillan drop in centre at Southampton hospital. Parking was £1 as a cancer patient. There were 6 of us being presented to by a team of 4 ladies altogether. If nothing else it was good to have a change of scenery, like a breath of fresh air. And it was very pleasantly sociable, not overwhelming. If not now - perhaps travel is difficult just now - then do consider it in the near future.
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