Post Mastectomy Pain

DebsSA

Hi I had her2 negative in left breast in 2019. I had chemo, lumpectomy and sentinel node removal, radiotherapy and Herceptin. Got the all clear then in November this year they found cancer in situ in what remained of left breast so I had a double mastectomy and some nodes removed on 4th Dec. 
The scars go from under my arms to the centre. I look like someone’s tried to saw me in half! The actual scar and skin just around it is numb. The pain I have is like a band around that area. It’s like a tightness and burning. Stretching seems to relieve it. I’m 5 weeks post op now and was told it would be ok in
4 to 6 weeks after op. I just want to know if others had this pain and how long it lasted. It’s not bad enough for Panadol but if I do take Panadol it doesn’t work.

Afraser

Dear @DebsSA

i only had a single mastectomy, but numbness and tightness are not unusual and can linger for quite a while. As you know, stretching helps so keep it up - scar tissue can tighten and you need to keep it as flexible as possible. Numbness depends on how nerve endings have been affected by surgery  - it will improve but can take time. Any increased pain or different pain is best checked with your surgeon. Best wishes. 

FLClover

Hi @DebsSA, I had my left nipple removed on 4th Dec. Also due to DCIS. I had a double mastectomy in April 2020, but it was skin/nipple sparing with expanders put in. Same feeling of tightness for around 6 weeks. Extremely uncomfortable. I didn’t need pain relief either, but felt a lot of pressure around the area. By the 7th week, it eased up pretty quickly. I didn’t even realise that it had, I just became aware one day that I was moving around like I used to and felt no discomfort. Give it a couple weeks more, and of you’re still really uncomfortable call your breast care nurse or surgeon 🍀♥️

DebsSA

Thanks Afraser and FLClover good advice. I will give it another couple weeks and keep doing the stretches. Some times it just seems it will never end. Deb

Mazbeth

Hi @DebsSA I definitely had that tight feeling you are describing. I had a BMX mid June with expanders, but my friend also had a BMX and no expanders and we both experienced the tight feeling. It feels like you have a really tight bra on that you can’t wait to take off, but you can’t. I used to say it felt like a steel band around me. The good news is that the feeling does pass over time, but I found that I just felt stiff through the shoulders, probably through not being able to stretch properly as well as always having to sleep on my back.
Keep up the exercises they tell you to do as they will help. When I was a little further along in the recovery, I went to a physiotherapist and got some exercises to help.
I have a lot more numbness on the side where I had the sentinel node biopsy, but that also is changing over time. The doctors can’t really predict how much feeling we will get back after the node biopsy - I guess they have to dig around a bit to find them and nerves get damaged in the process 😯
I agree that calling one of your medical team is a good idea as it will put your mind at ease. Take care Mx

AllyJay

My bilateral mastectomy, node clearance on the left, and sentinel node on the right left me looking like someone had taken to my chest with a weed whacker. From the left armpit...in a somewhat straight line, but dips, valleys and slightly raised areas...all the way to the right armpit. My Buddha Belly swelling greatly (thanks cortisone and our friendship over the last decade). reposes on my thighs and I now look almost like a mauled cane toad. The tightness is still there, but a little less than four years ago, although maybe now, I'm just more used to it. Feels just like the chest strap of a much too tight bra. No amount of rubbing, massage, stretching or similar has helped, but I do also have scleroderma...Latin...sclero) stiffness...derma...skin. Sometimes I fell like one of those "alternate" chicks with their rubber suits on. You may now fetch the bleach and a spare toothbrush and try to scrub this image from your eyes...much love...Ally.

Blossom1961

I still have numbness two years after mastectomy. I gets bouts of pain in my chest and arm but nothing major. For about six months after my op (I had full anx clearance one side) I had sharp burning pain in the back of my arm where the surgeon informed me they did a lot of digging around and probably damaged some nerves. It felt like someone was stabbing me. Fortunately, I no longer have that but the dull pain comes and goes. I also still get quite sharp pain where they inserted the camera for the port but that is becoming less frequent. Nerve damage takes a long time to heal.

Sister

Nerve pain from the damage that happens during surgery can be quite intense from sharp searing pain to pins and needles or throbbing and can take a long time to settle down.  I felt like I had blistered under my arm and on my side but the skin wasn't even pink.  However, tightness can also be caused by cording and that is something completely different which should be treated by a physio experienced in this.  I also had this and while stretching was good, it didn't get rid of it and it continued to get worse until treated.  Cording often runs down from under the arm towards the wrist but can occur on the chest wall and ribs as well.  It is characterised by tightness in sensation and movement and if in the arm, you may be able to see the cords standing out when you try to stretch but I don't know what it looks like on the chest wall.  Your profile doesn't show your region but I'm sure that someone would be able to suggest someone local who specialises in diagnosing and treating this.

DebsSA

Thanks for your replies it’s good to hear its not unusual. But I’m sorry to hear you are still having pain.  I hadn’t considered cording thanks Sister. I saw a physio in 2019 as had a frozen shoulder on the side I had the lumpectomy. I remember at his practice there was a lady who specialised in lymphoma. She may be a good person to contact initially Even if I don’t have that.
Your description made me smile AllyJay. I’m going to tell people I was a magicians assistant and he tried to saw me in half in a box and it went wrong! I have put on weight since my hormone therapy and it’s on my stomach. It didn’t look so bad when I had boobs to hold my clothes off it. Now my chest is flat my stomach looks enormous. I know time will help all these thing and stopping emotional eating would be good too. One thing at a time..x

Sister

It is kind of weird looking down at the flat side.  I've put on a lot of weight too and my stomach is bigger than the flat side.