In May 2012 I was treated for cancer that had spread to a lymph node in my left leg (groin). My swollen leg was the first sign something wasn't right and also the pain I had when walking. The pressure in my shin was ridiculous. There were lots of Drs telling me it could be DVT. Luckily my bowel surgeon and oncologist looked a bit closer and found the cancer. The swelling started to reduce six weeks into the chemotherapy and I was able to wear my clothes as I wanted, even my size 12 stuff.
Unfortunately since October 2012 I've noticed the swelling has got worse. I finally saw someone at the lymphoedema clinic a month ago. She measured my left leg and it was at the time 44% bigger than my right.
22 January I was taken into the local hospice for a break because the pain had got too much. The pain I suffer is in my lower back and almost wraps around my hips, the whole pelvis feels like it's being tortured. The hospice have had me on all sorts of medication to try and stop the pain. When I first got here I couldn't even sleep in my bed as I can't lay flat on my front or back. Laying on my side I can just about manage but only if I have loads of cushions to pad everything out.
The swelling in my left leg has gone down from below the knee mostly and as I type my left thigh is still as big as it usually is. The swelling also spreads to my waist and lower back meaning I can't wear any of my usual clothes.
I've been given a pair of compression tights to wear. I was told to wear them once I'd seen the clinic again as they'd go through how to wear them and they'd also look at massage technique so I can do it when required. Unfortunately I have to wait until next week for this appointment. I have worn the tights twice though, just to see what happens. They don't seem to help me, instead they cause my lower back and pelvic pain to be so bad I can't walk. I'm basically stuck in a hospice bedroom either sat in an armchair or a bed. If I go out it hurts to walk so much it stops me in my tracks and I sob. I've even had a woman stop her car and offer a lift to me because she could see the agony I was in.
I've had a bone scan and they came back pretty much normal:
'...The bone scan said there is no evidence of metastatic disease in the bones. The uptake in the cervical spine and SI joints would be consistent with minor degenerative change. I do not think that the uptake on the bone scan is sufficient to account for the patients pain.'
The MRI result came back:
'Comparison is made with the previous study of August 2012. This scan was performed under intravenous Propofol sedation by Dr F, Consultant Anaesthetic, without complication.
There is now more extensive high signal change in the pre-sacral space on the inversion recovery sequence but no progressive mass is identified, which would favour an inflammatory rather than a neoplastic process, and perhaps reflects previous radiation therapy. These changes are likely predominantly oedematous as there is no significant pathological enhancement. Furthermore, there is no oedema of the sacrum or pelvis to suggest direct infiltration by tumour.
No other pelvic mass or free fluid is demonstrated. There is significant oedema of the let thigh and of the buttock although the sacral oedema may reflect immobility rather than lymphatic infiltration or obstruction.
Conclusion: Extensive inflammatory reaction in the pre sacral space likely to reflect later effect of previous radiotherapy. There is no convincing evidence of tumour mass and no bone destruction or other significant abnormality in the pelvis.'
The radiotherapy they refer to in these two reports started 7 February 2011 and lasted 5 weeks, I had it everyday, but weekends off.
It's frustrating to think that two years down the line I am now experiencing real complications of radiotherapy to my pelvis. I am wondering though that the combined problem with radiotherapy and the oedema caused due to the lymph node no longer working means that I'm going to suffer extreme mobility issues. I can't walk on my own with a hand bag. I need morphine before I attempt a walk outside. I now can't take part in anything that involves standing. I need lifts everywhere and people to help me. I'm not used to asking for help. I have a boyfriend - we've been together nearly a year and I just want to get on with living. I don't want to be treated like an old lady. People suggest sticks, walking frames and wheelchairs. I can't even think about those. I'm only 29. I turn 30 in just over a month.
Does anyone have any tips or helpful hints on how to keep the swelling down? What's worked for some people?
This is my first post about this and I'm a bit all over the place. I'm sorry if I've missed any information out.
I'd just like to know people have somehow got their lives back after this?
Thank you
Hannah
Written by
hjberry
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Hannah, you have my sympathies. I have to admit I was a little surprised at how young you are and what a lot you have gone through already.
I would agree with Lynora in that MLD may help. I would also suggest you write a list of things you want to ask about before your appointment, and maybe take a notebook with you to jot down information when you are there. I know I often forget to ask vital questions at the time, or I forget what I have been told.
I hope that the medics are able to help you start getting your life back.
Hannah, my heart goes out to you. You have been, and are continuing to be experiencing so much physical and emotional pain, it is a credit to you that you are still trying to find strategies to help. You have not given up, and you will not give up.
Is there a physiotherapist at the hospice? If there is, they may be able to give advice and practical help to raise your swollen leg - either by raising your bed or helping you to get into a position that enables you to keep your leg in a 'draining position', even if it is only for a matter of minutes initially.
Manual Lymphatic Drainage seems to be 'the Holy Grail' for so many with lymphoedema, but in your present condition you should be high on the list for such treatment
No one of your age wants to contemplate the technology of the disabled - but it may be therapeutic for you to accept a mobility aid, particularly a wheelchair, as a temporary but necessary support? When your world is confined and restricted by your condition and the pain you are experiencing, there is little to distract you from that pain. Could you accept help, from someone you choose, to assist you in trying out a mobility aid in a safe environment? Sometimes, just getting out into the fresh air can help emotionally.
Your courage is humbling.
Lynora and Lruk have give you some practical advice, and you may have more responses on this lovely site.
You will be in my thoughts, Hannah, and I do hope that you can get the help for your lymphoedema that you so desperately need.
Tina
Hello Hannah,
Good first step.. you've found LSN
In desperation I asked my Lymphoedema Nurse to refer me to Proff Mortimer as a Private Patient. It has been worth every penny as he gave me ways forward and hope that the pain would improve. I think it may be worthwhile discussing that option with one of your care team as it might be possible for one of your Consultants to refer you via the NHS as I certainly think you deserve the best care there is. (GP's cannot make the referral.)
He is very overworked and I apologise for the advert.
I can't begin to imagine what you're going through at the mo.
When I was a couple of years younger than you I was diagnosed with osteoarthritis in my feet (mainly the metatarsals - the bones that footballers tend to break!). The pain was unbelievable and I found walking impossible at times. Because I spent most of my time limping, I ended up with pain in my knees and hips and lost count the amount of times I pulled muscles in my back. I also found myself tripping up on fresh air - so embarrasing doing that in public and ending up flat on my face! I was offered a walking stick but being so young I refused point blank. Eventually I relented and bought myself one to try out (I didn't like to look of the NHS ones). I used it only when absolutely necessary but saved me from falling over several times. Eventually I made friends with my stick and named it Justin - as in Justin Case I tripped up! I upgraded him to one with a nice comfy silicone grip which was easier on my hand. I don't use him all the time - only when I really need to.
Over time, my left foot and shin/calf started to swell and on occasions to the point I couldn't wear anything on my feet. Back and forth I went over several years to my GPs with countless tablets and diagnoses (if that's the word!). I got so fed up that about 3 years ago I went to a different GP at the practice and insisted I had my leg chopped off as I was so desperate. He took one look and thought I had lymphoedema but he didn't know enough to tell me much about it. I even had to look on the internet to see who I could be referred to to get help and passed the information onto my GP. I now am under a wonderful Macmillan Nurse for my lymphoedema even though I have primary not secondary and have stockings that fit and are doing good (it took 4 different makes to find the right one). Unfortunately the lymphoedema went on a trip round my body and it's settled in my right leg too.
Being so young and being diagnosed with something I thought only old people got was devastating and I cried a lot, thinking 'why me'? Over time I have learned to accept it's with me for life. There is no cure, it can only be managed. It's bleeding frustrating not being able to do some of the things I used to at the pace I used to go. I've learned to slow down and if people complain - tough! Although I have been up front with my employer since day one about my arthritis and lymphoedema I've only been there just over a year. The first time I had to use my stick to get to work I knew people would be weary of it and me so I walked onto my office doing a Charlie Chaplin impression swinging my stick and singing 'I'm Jake the Peg diddle diddle dum!' - Certainly broke the ice and caused a few giggles! I couldn't have done that a few years ago, I'd have been too embarrased.
It's going to take time to get back on track, to find your limits, get your pain and lymphoedema under control. But you will get there, I promise. Please don't feel a failure asking for help. It took me a while to admit when I couldn't do things but now I don't hesitate in opening my mouth. Please think about giving mobility aids a try. I don't know where I'd be without my Justin (stick) sometimes and don't know how I managed without it. And there are some seriously groovy ones out there. Mine is plain black at the mo but I'm thinking of customising it with paint and/or glittery things soon.
I take pain medication before I do things like hang washing out or potter around the garden weeding and such like. I found that if I am in a lot of pain, going to the swimming pool helped. I don't do laps but have a relax and a float and tread water a bit. I tried aqua aerobics for a couple of weeks but the bouncing around caused my feet to hurt.
Please let us know how you are getting on. Sending you lots of hugs
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