Breast Cancer Now Forum

I also developed breast and arm lymphoedema after rads last Autumn . I have had some MLD, which I had to really push for. Mobiderm doesn't seem take any difference, just leaves dents in boob.  Compression bra was no use whatsoever, didn't offer any support. Normal bras are almost impossible to get to the fit properly when the swelling makes you a JJ cup. Doing SLD twice a day. When you look down the affected side is 2cm bigger than the other on a good day.  Asked to be referred to a specialist in London and was refused. I wanted to know all my options as local service is too limited by funding. They don't follow up or review regularly.  Not enough care or support is provided for after effects of treatment. I had three large WLE's and team think I'm barmy when I say I now wished we hadn't gone for conserving treatment. But they don't live with it and have no idea how it makes you feel to look so ugly daily. I'm in my early 50's and it has has a massive impact on my self image and confidence.    ... View more

I'd love to find out more about new treatments or where to be referred for a consultant opinion.  I developed breast lymphoedema from rads, complicated by an underlying infection in it. I saw the rads consultant and a breast surgeon and neither considered an infection, despite redness and swelling, it took six months to get this identified and treated and I will have to take antibiotics for 1-2 years I've been told, its only just starting to settle after 4 months. I've had little response to simple drainage, compression and what I can only describe as fabric bubble wrap to out in my bra.  I've found the local service (nurse led) very wishy washy, and not really helpful. It's having a huge effect on my recovery. They seem confused as to why these things haven't helped! They don't follow up at all when they say they will and haven't written a single clinical letter in the five months I've been seeing them. I'd love to buy some new bras and swimwear but it just isn't worth spending the cash as affected one is several cm bigger.  As I have big boobs they managed to save them, I now find this a curse not a blessing! I can get a second opinion, and wondered where people would recommend that is consultant led ... View more

Hi The Nice guidelines extended treatment to ten years in July 2018, as this was found to be more beneficial in reducing risk of recurrence.  Dont know where they have a crystal ball to say it will cause memory loss, sounds very odd to me!    ... View more

I will admit the emotional side of everything I'd been through hit about two months after all my intensive treatment finished and I was planning my return to work. Its still difficult to think about everything I've been through, even with psychology support and medication. I know its going to take a long time, but I've made some good friends in the local support groups. I worked throughout testing for secondaries in my bone, I had just returned to work the first time, fortunately this was ruled out. Then lymphoedema hit with a related cellulitis that is being very stubborn to leave! There never seems to be an end and I feel so unfit physically now as everything hurts! I returned to work for the second time after a final surgery in March, returning this time was much easier, I was offered a phased return but as I had already reduced my hours, I didn't feel I needed it. I worked one week then put into shielding as identified as extremely vulnerable. But its given me more time to rest and I'm not getting as much fatigue or pain as I am less active with not being allowed out for anything! In some ways its been a positive to help my recovery, as it has given me more time I needed emotionally, and I feel so much more like myself now and have reduced medications to a minimum. I had been worried to take more time due to finances as I'd already had a year off, and I've had some decent time with my family at home. I love my job and my friends there, but I know its not the best role for me physically now, so I am looking around, but I want to know whatever I choose to move too is the right decision made looking at all the pro's and cons. I do feel guilty I am not helping out on our frontline, but I dread to think how my family would have coped with it if I'd become ill due to work or worse. ... View more

I'm also a nurse, my manager didn't send me a card or make contact with me while I was having treatment. Emails weren't acknowledged or replied to. I had to involve union rep to get back to work. A few colleagues kept in touch.  Just had more time off to complete some treatment and same has happened again. I'm looking for a new job! I don't talk about my treatment with colleagues, apart from the couple who are friends. I felt so isolated during treatment and my local support group was a lifeline. ... View more

Morning ladies   It feels as though I'm back on the appointment treadmill again.    Have been xrayed as having constant hip pain on one side, then physio (No muscular cause), back to BCN (mine has left unfortunately, and they forgot to tell me an xray had been ordered, until I rang to chase 10 days later), now having urgent skeletal scan next week. Living in hope it's just the anastrazole and Zometa, but I've never really been the lucky one in life! Can't help worrying, especially as I was never scanned despite having lymph involvement, but feel flat more than anything.   Awaitng lymphoedema assessment next week as well.   Just counting down the weeks until I get back to full sickness entitlements! Worked out it all goes back to normal mid September!!!   Just waiting for a date for ovary removal next month will be delighted to have no more zolodex jabs!   Liz ... View more

Hi Sue   Sorry I can't help, I have anastrazole.  Have you had a look at the side effects on the leaflet inside the box   Lxx ... View more

Hi Debi   I dyed mine last week with no problems as I couldn't stand the grey!   I recently met a hairdresser who said you can dye at anytime, she recommended dyes without ammonia, I found one in boots   Liz ... View more

Hi everyone   Had informal report from xray, oncology registrar couldn't see anything nasty on it. But I've still no idea why it is so painful, can't lie on my left side at all. I'm seeing onc mid January, so hopefully she'll have some ideas.    I've also had the go ahead to have my ovaries removed, instead of monthly zolodex, should be in February (they offered me a cancellation on Christmas eve,  I politely declined!)        ... View more

Hi Everyone   Haven't been on for quite a while, had a few problems with logging in but all sorted now.    Sorry to be hear about your current situation Sue. I've just had an xray of my pelvis as I've constant pain on one side, hopefully get results today. Can't help but fear the worst, but balancing that with its probably just nothing. I also lost weight during treatment but it's stabilised now.    Have had a lot of problems with my mood, emotions and anxiety since the intensive treatment finished, GP finally took charge and insisted I have some medication, which is helping. My onc said this part is the hardest, didn't want to agree with her but now I do!   I've just returned to work, I'm finding it hard as I feel under confident, there was an email sent to tell people I was coming back and not to ask about how I am as I was concerned that this would open the floodgates!   Anastrazole has been a challenge, but now I'm in Teva brand it's great, the cheaper ones gave me horrendous side effects   I hope everyone has a nice Christmas, I've got mixed feelings about it as the last year is so fresh in my mind and I find it a  struggle as I feel guilty I'm OK, when some of my new friends have just been told they have spread and are palliative.   Thank you for all the support this year    ... View more

Hi Debi,    Wishing you a speedy recovery after surgery tomorrow.  I had node clearance in January and you have to look carefully to find the scar now!   3 more rads sessions to go now, then it's time to plan my return to work in November. Anyone else doing the Moving Forward course? I'm starting one next week so I hope it'll help me to be realistic as I try to return to a more normal life as I know I'll need to pace myself, which I've never been good at!  ... View more

Hi MrsJ13   I've also developed swelling and my tean say its not unusual.    My shoulder is also stiffening, so I am continuing the exercises and massage my physio has showed me (I also had cording after surgery)   Liz ... View more

Well done on finishing, the time will pass quicker than you think.    I'm already halfway through rads, don't know where the days go!  ... View more