Lymphodema

Hi Kittycougar , sorry you have this additional complication. There are a few of us here with breast lympheodema, it’s a less well known after effect of radiotherapy as I discovered  - it hadn’t been mentioned to me and I guess they can’t mention everything that could happen plus I think it’s relatively rare. Mine came to light when I queried that the treated breast was bigger than the other, after being scooped out and radiated. It’s more common to have shrinkage. Anyway after a course of antibiotics in case of underlying infection, a lympheodema nurse (referred by the oncologist) confirmed that I have lymphoedema, but luckily for me at the mild end of the spectrum. She showed me massage, recommended fully supportive bras (I was still wearing soft post op bras, comfy but hardly any support). She also recommended Nordic walking or aqua aerobics. So I got fitted for better bras and took a course in Nordic walking. I’m still doing it 4 years later! Can’t recommend it enough, I love it and have met a whole new group of friends as well as seeing lovely bits of local countryside that I wasn’t aware of before. I had a follow up appointment with the nurse and she was amazed at the improvement in 6-8 weeks. As you’ve said it’s a lifelong condition but I feel it’s being kept in check. I’ve had one episode of red skin around the area, went straight to GP and had a course of antibiotics to nip it in the bud. Thankfully it cleared up, again I was also warned to look out for any signs of cellulitis. 
Sorry for the long ramble, mainly to say you’re not alone. I’ve been fortunate to escape so far with the milder version but I do try to be vigilant. I don’t know whether the Nordic walking or aqua aerobics would be suitable (or desirable) for you but could be worth asking your nurse. 
Love and hugs, HFxx 

Aaahh,many thanks for your lovely reply,I do try to walk regularly but not tried nordic walking

I was told one area was caused by the radiotherapy  the other area under my arm,caused by lymphatic fluid not draining away,it is so painful

I'm also taking letrozole, I average 3.5hours sleep a night,and painful joints and muscles

It's so nice to be in contact with people who are going through similar problems

You take care

Oh yes the added joys of hormone therapy! I’m on Anastrozole, basically shoved into a renewed but super charged menopause. My ‘natural’ menopause wasn’t too bad but this is something else. I had 6 weeks of ear acupuncture for the hot flushes at the Maggie’s centre at Addenbrookes. I’d recommend it, it didn’t stop them altogether but less frequent and less intense. Think I need another course though as I believe the effects wear off and it was over 3 years ago that I had it. Not to mention joint aches, mine are mainly in my feet. Re sleeping, I think the first year was the worst, it’s not great now but definitely better than it was initially. And I think the acupuncture helped that too. 
But I’ll keep popping the pills in the hope of keeping the beast at bay! Xx

Yep,been through the menopause once,this time it's a lot worse!

As you say,you're not forwarned about what can happen,and side effects of the meds

Like you I'd rather keep popping the pils,and hopefully keep cancer away

Hi Kittycougar, I also have lymphoedema in my right breast and under the arm. It is also very painful, I saw my breast surgeon last week and he said it wasn’t bad enough to do drainage and that breast massaging myself would help. I have tried that and it’s too painful.

He prescribed me with an anti inflammatory gel and told me to use it twice daily. It has helped with the pain, I also do aqua aerobics and that helps too.

I was on Letrozole, but had such bad bone pain I came off of it under the guidance of my breast surgeon. I now take Tamoxifen and have for the last few months. I have had no side effects from it thankfully.

Good luck and I hope you get everything sorted xx

Thank you for your reply,I'm going to see if I can get my consultant can recommend some gel to make things a bit easier

Sounds good that you've altered your meds and that you've noticed an improvement 

Take care 

 Kittycougar i finished radiotherapy on the 17/7/23 and each week since I’ve seen my left breast slowly go bigger and harder,and painful now to the point of my nipple has sunk in…I’ve been in touch with the bret care nurse 3 times now first time she said try massage 2nd time prescribed Codiene but that was totally making me cuckoo and on Friday I saw a different one who said oh it feels ok I was wincing wh pain every time she touched it,but then left and came back with a doctor who prescribed Flucoxillian and Cocodamal only for 5 days and said massage..I’m now in excruciating pain but manageable or m just putting a brave face on,because I’m sick of all this now. Wear a tight sports bra popping them pills and no relief at all,massage sends me crying.There’s sicky feeling there’s dry mouth omg seone please put me down

Hi,thanks for messaging

Yes the pain is pretty unbearable, I'm been prescribed  Nefopam,they knock me out!

Massage does ease it slightly plus the Pitpaks from oncology 

Hope you get some relief soon

I have it in my left breast. I'm 2 years post surgery. No one really mentioned it to me. Arm swelled and still get puffy armpit. Bottom of boob is quite hard by about 4 or 5pm so when i get home from work the bra comes off. Finally been referred to clinic and go see them next week. My rib under my boob also hurts. I was on tamoxifen for nearly 2 yrs before they switched me to Anastrozole.  6 weeks down line back on tamoxifen as the side effects for me are horrible.x

Thank you for your message it's lovely to hear from people who have similar problems

The lymphodema nurse was really good,I have another appt in 2 months

Hopefully you'll get some results next week

Take care