Hi all
It’s been ages since I posted as I finished my treatment last July. Thought I’d been ok but just been diagnosed with lymphedema and feel so miserable and angry and sad I don’t know what to do with myself.
It was the main thing I worried about whilst going through chemo and radio as I knew I would feel like this. I want to snap out of it but I also want to rage about it and I just don’t know what to do with myself. My cancer had spread to one lymph node but it was v early and the surgeon didn’t seem to think they should take them all out but my oncologist said just to get it out and despite the fact I didn’t want to I went along with it.
I know, like everything else that’s happened I will come to terms with it but its really upsetting me and I feel like I can’t cope. Sorry for going on.
Xx
Hi Goldie112
I’m sorry to hear you’re feeling this way but you’ve done the right thing by posting here as I am sure your fellow forum users will soon be here supporting you. In the meantime I have put for you below the link to BCC’s publication regarding lymphoedema which I hope you find helpful. Also if you give the helpline team a ring they’ll be only too happy to talk to you about your concerns. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2
Take care,
Jo, Moderator
Thanks Jo.
Thanks Rattles. It just feels a bit like the straw that broke the camels back. Also it’s one of those things that people don’t understand and don’t think it’s a big deal in comparison to the cancer stuff.
I feel like a child, I don’t want to be told its manageable and to positive, I’m so sick of being positive about horrible things that I want to stamp my feet! It’s so not me, I feel like I can’t be happy and I’m being moody and snappy and on the verge of tears all the time. Bleugh.
Sorry Rattles also meant to say, I’m so sorry to hear about your situation too. Sounds like you are better at dealing with it than me though. I would suggest we could use a punch bag only it would probably over exert our blooming arms!!! Xxx
Thanks Lacuna, I think the reaction is fairly normal but that’s not really making me feel better. It’s as if I used all my positivity up on the surgery, chemo, radio etc and now I can’t seem to muster any more!
It’s great to talk to people who have gone through it though as I don’t think anyone else really understands xxxx
Well they just sound marvellous at your work! What a nightmare! Hope you’re feeling a bit better now. I had a similar conversation last week (before I’d told anyone about this) with my md asking how I’m feeling now and then looking surprised when I said I still feel tired! It’s like you’re supposed to be just completely get over everything straight away. I just had a big cry and told my OH everything I was feeling today which I think shocked him a bit. Problem is he keeps wanting to fix it, which he can’t and that’s the problem you can’t fix it and its freaking me out. He thinks the chemically induced menopause and tamoxifen might be making me feel so hysterical. I’m just constantly on the edge of tears. It’s ridiculous. X
Thanks Zeppa, it is good to talk to people who have gone through/ are going through it. Sorry yo d had such a difficult time xxx
I think most people really have no understanding of lymphoedema. They see a sleeve and think that’s it. They don’t get all the physical and psychological things that go alongside a diagnosis nor do they get that it is a constant reminder of the cancer diagnosis.
I’m constantly staggered by the insensitivity of people in workplaces. You don’t expect people to know what it is like but you do expect them to ask and try to understand not make ridiculous stupid statements.
I went to a market today and the first thing the women at the stall said to me was ‘oh what have you done?’ I wanted to scream at her because I don’t want my sleeve being the first thing people are looking at. Three years down the line and I still don’t know what to say when someone asks out of the blue like that.
Goldie - I think the feeling of what could I have done differently is something that many of us feel. I had a terrible seroma after surgery which went on and on and I think was made worse because I’d had chemo first. Sometimes I sit and think that if I’d had surgery first I might not have had the seroma and then I might not have had lymphoedema.
But it’s not our fault. We rely on our doctors to advise us and I honestly believe they do what they believe is best for us. Even with the removal of one lymph node you may have developed lymphoedema so that was no guarantee in itself.
take care
Elinda xx
HI Goldie, I’m on my third diagnosis of BC and when I ahd my first diagnosis my Surgeon advised removing all my node, on the affected side. I questioned this, as I told him I was worried about Lypodema, as my Mother had this after having BC. He said to me, “you have 30% risk of Lypodema and 6% risk of a recurrance coming back in your nodes and if it does, it’s very difficult for us to deal with.” On his advise I had all nodes removed on my right side. On my second diagnosis I had them all removed on the left side. This third time I again have aggressive Grade 3, but no opportunity for the cancer to have spread to my nodes. I do have slight Lympodema, but I’m grateful for his advice, as otherwise I could be facing that nodes are affected and difficult to deeal with. Take care & try not to be annoyed with yourself x
Hi All
Thanks for your comments. I really do appreciate them all. I think just bring able to talk about it has really helped. I had been holding it all in and posting here and talking to my OH ( which I had been avoiding as I felt he’d been through enough already) has lifted the cloud. Funnily enough when I went to see my gp about treatment I also asked about counselling as I knew this would tip me over the edge. I have been having a cycle of thoughts which kinda go, oh my arm is swollen, Oh yeah I had cancer, it coincides with a hot flush which reminds me I’m in the menopause that’s made me infertile and I can’t have kids, should I try other options, well probs selfish to, as you’re going to die young anyway, ooh arm’s aching, what if there’s permanent damage and you can’t manage it as you get older, dont worry about that you’re not going to get much older anyway…
Apologies for the lack of punctuation but I’m posting from my phone.
However I am feeling less like this after talking to you all and it’s so great to hear all your different perspectives, so thanks so much for helping me through xxxxx
Thanks Erin, my oncologist and breast care nurse suggested doing it through the gp. I had my first session the other week and we have the bank holiday now but I think when I went through my list of things it blew her mind a bit.
I’ve got a check up in another week so I will ask my oncologist then. I’m really glad the counselling has worked for you xx
Hi ladies, I am new here and have just been reading your posts. I developed lymphodema almost immediately after my mastectomy. I had read the leaflets as you do, and scanned over all the information, thinking it would never happen to me! Wrong! 
I had 17 nodes removed from under my arm, so I guess that hasn’t helped? I just feel like I wasn’t told that the more nodes that are removed the greater the risk. You know so much after the event! Too late then.
I have had to endure all my chemo, blood tests and treatment in hospital in my other arm, I now have an arm full of thrombosis, there are no veins left, my arm is tunnelled and feels very tight.
So both my arms are now ruined I’m only 45 and have an active 6 year old boy at home, I feel like a cripple some days and most of all I just feel so very sad. Sending hugs … K xx
Hi KLL
I’m just sending you a big hug.
It’s awful that you’re struggling with both arms.
Are you getting support and treatment?
I find my breast cancer nurse to be really helpful and hopefully there are lots of options to explore. I hope you’re finding the posts useful I know I did. I also find that, like everything, time helps get your head round things and you can learn to manage the lymphoedema - I do the daily massages and wear my sleeves every day and I think that definitely helps. Sending lots of love
G x
Hey Goldie,
I was totally livid and also very deeply upset when I got lymphodema 18 months after finishing my treatment. My mates couldn’t uderstand how upset I was, but it felt to me as bad as a recurrence. But I have had some fabulous support from local lymphodema service, and I now do 99% of what i want to and i wear a sleeve probably 5 days out of 7. I am super careful about some things but you know its just become a habit so its not so much of a drag as I used to feel it to be.
I got some funky sleeves from chic compressions who get them from lymphdivas in USA and they cheer my up no end - have got a great one that looks like a full arm tattoo - got some compliments of a fully tatooed guy in manchester yesterday!!!
sending you very best wishes, and I hope it helps to know my fury and deep sadness settled as i got used to managing the lyphodema and not letting it manage me. M