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
I had a wle four weeks ago, and my oncologist told me I'm unlikely to develop lymphodema as only three nodes were removed, but a friend who has it wears a sleeve and really you can't notice it..do they come in different skin tones? Just a thought...don't know if any of you have seen the images of mastectomy tattoes, some are fabulous and you don't even notice the lack of a breast. You can get walking sticks which are brightly patterned or coloured, so why can't someone develop sleeves which are a talking point because they are beautiful, rather than being merely functional? Come on ladies, get your thinking caps on, you could make many women happy and make yourselves money into the bargain. (I'm hopeless at anything to do with design or I'd try myself!). I hope everyone suffering at the moment can come to terms with it before they commit murder on the next person who comments on the sleeve.
Hi again Goldie,
Most of the counselling that a GP has access to will be time limited (eg 6-8 sessions), and the counsellor will not necessarily be that familiar with the effects of going through cancer/lymphoedema. It's also usually CBT. However, If you can access counselling through your local cancer support centre, or via your breast care nurse, you are more likley to find someone who specilises in this area, and they are less likely to be time limited. The issues you are dealing with, eg the infertility, early menopause, worrying whether you have a future, lymphoedema, are all too common in younger women after BC, and it does take time to deal with everything. I've been lucky enough to have had counselling for over 18 months at my cancer support centre, and it's taken that long to help me to come to terms with things. It's been so worthwhile. Many people find it harder psychologically post-treatment than during it- I found that hard to understand before I had cancer, but know only too well now!
And by the way, don't expect your GP to know anything about lymphoedema- It's dealt with soley in secondary care.
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
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.
I gather it's not what you want to hear, Goldie, but all I can say is the same: I was really angry when I got lymphoedema. I didn't get it in the arm, but in the breast and side, and it took me ages to understand why I had it. I had a huge amount of my breast removed and a lot of radiotherapy, and the radiotherapists say it's their fault. But lymph drainage specialists tell me a mastectomy wouldn't have avoided the problem. I don't understand that. I couldn't have a mastectomy because the hospital gets judged on how many mastectomies they avoid. I had two tumours and some DCIS, all caught quite early, but covering a big area. I was angry for a few years on the little interest that treatment in the years after OP, chemo and radiotherapy gets. My gyn knew I had lymphoedema but didn't think it could be treated in the breast, so it was a year before I got treatment. Then I couldn't find a doctor who understood what lymphoedema is. I even went to a specialist clinic for three weeks (I am in Germany) and got a new doctor who prescribed me a sleeve, which the senior doctor said I didn't need, but ignored the breast.
The thing I really hated was the thought that for the rest of my life I'd be dependent on doctors and therapists!
I just wanted to say that I find it just as hard to cope as anyone and I really do hate that expectation and pressure to not only cope with all the effects of cancer treatment, but be positive- as if it is not enough to have cancer to deal with, we also have to come through smiling! Yeah, right. To give you an example, I had some coaching at work as I am finding it just hard to manage the demands and expectations of others (and myself) and I was talking about how hard it is (to write, type etc) and how I hate the reactions of people to my sleeve ('Oh, I do like your sleeve' to which I go 'uuhh?') and was basically asked why I had not come to terms with it after 9 months! I wanted to scream and though I did patiently explain that this was not a great deal of time to come to terms with a life-changing condition, I left and cried in the toilet as I just felt a total failure. I think we all have our lows, but I was hoping to show you that it also does get easier.
Keep in touch, Rattles x
I just wanted to say that you sound exactly like I did when I developed lymphoedema last November. The thread I started is probably about somewhere. Like you I was so angry, and angry at myself for being angry, and I didn't want to have to deal with this on top of everything else. To be honest I am less angry now but still resentful and have found it hard to fully come to terms with it. Instead I am just hoping that a cure will become available soon because I still struggle to comprehend that this is meant to be forever. In time you adapt and managing it becomes part of your daily life, but that doesn't mean you grow to like it! I hope things start to improve for you soon. Take care.
I just wanted to say sorry of your recent diagnosis. It is hard when you go back and look at past decisions/events with a feeling of regret. It's hard I think when the 'cure' takes away quality of life. I have had clearnance both sides and developed lymphodema in the 'lower' risk arm and it is baffling to everyone as also my 'unaffected' limb has a higher total volume despite larger measurements in the lower arm. There is no 'right' way to feel and I understand your anger. I was devestated when I developed lymphodema and the way I look at it was that getting through the treatment had just taken so much from me and it seemed so unfair. I think that there is a lack of support when you are first diagnosed so you feel quite alone. I have had some good tips from ladies on the forum and learnt lots of ways to manage my own lymphodema. Even though I wear an all-in-one glove/sleeve which I hate bitterly, I have learned to cope and the swelling has gone down. I am rambling on but think you just have to keep on venting!
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