I'm new to this so hoping for some advice.
I was recently diagnosed with stage 1b1 cervical cancer. I had my surgery almost 4 weeks ago, which was a radical hysterectomy with lymph nodes removed. I have my results on Wednesday to check if the lymph nodes were affected so fingers crossed for good news.
My question was to see how other people are dealing with the risk of lymphedema and the restrictions of what would have been normal daily routine e.g. shaving legs, moisterising legs, having hot baths etc.
The booklet that they gave me at the hospital pretty much says I can't do all the things that I would have done on a daily basis so I'm struggling with this a lot. It wasn't until after the surgery that I was told about this so was very unprepared and obviously upset afterwards.
Can I ask how other people are living with this and if anyone has any suggestions that make life a little easier in these areas? At this point I am open to all suggestions.
Thank you in advance to anyone who sends advice.
I'm following the advice and not shaving, currently having chemo, so hair is patchy, I will probably use a hair removal cream in the future.
I am suppoting my lypmh system via rebound exercises on a mini trampoline.
I‘m 2 years post surgery and haven’t had any problems with lymphoedema thankfully. I’m doing everything that I’ve done before-shaving etc. The thing that I think helped was that my hospital asked me to wear compression tights for 6 months after surgery, during the day only. Which I dutifully did, I was lucky it was during the winter time..
The chance of developing lymphoedema is pretty small, and it’s important to deal with it as soon as you see the first signs, but hopefully you won’t need to..
Good luck for your results!
Hi ladies thanks for replying,
I feel like I've had the fear put in me about lymphoedema, I was given a Macmillan booklet the day after surgery and a leaflet with some exercises and the specialist nurse specifically asked did I shave my legs and told me I'll be no long able to do that, along with not waxing, epilating, creams are harsh so to avoid them also, I know compared to everything else this seems shallow but I've dark, course hair and I don't feel very lady like, it is important to me.
I was sent home with compression stockings which I've been told to wear for 4 weeks but they are only to lessen the risk of DVT and I've also been having injections in my arms for the last four weeks ( last one tonight thank goodness my arms are black and blue ). I'm 39 and terrified of ending up with lymphoedema for the rest of my life as I've been told it's irreversible so I want to do everything I can to prevent it.
Hi Elena. Here's wishing you all the best for clear results on the lymph nodes. Mine unfortunately came back as positive so had to go on and have chemo rads after the RH. I don't recall being given any info on not shaving or having compression stockings, but I did go on to develop lymphodoema, and in all honesty, like most things, you get used to it. I got symptoms of mild swelling after a plane journey, so was referred to the Lymphodoema clinic. I was shocked to be told I had lymphodoema, and it was only then that I got info about skin care, compression garments and manual drainage. I use an electric shaver, which is ok, and try to look after my skin as best I can, moisturise etc. It was a big deal at the time, it I have got used to it now and just get on with it, as it is a life long problem which you just have to manage. I just wanted to reassure you, but also, my chances of getting it were doubled, as I had radiotherapy. All the best anyway.
Thank you Rachel,
That's quite bad that you weren't given the information before hand, I don't think there is enough awareness about lymphoedema, I'd never heard of it before and everyone I mention it to have said the same. I've since been told, when I moisturize to do it in a downward motion, away from hair growth, no hot baths, Jacuzzis or tubs, no leg massage, be careful of insects bites, and I've now got to wear a factor 50 sun screen, and then obviously the shaving thing, does anyone know of a decent electric razor that actually gives a smooth shave? http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/lymphoedema/skin-care-for-lymphoedema.html
I hope this information will help others.
Xx Elena Xx
I was never given any advice around lymphoedema, other than to keep an eye out for swelling, although this was also as it can be a symptom, rarely, of recurrence. Consequently I continued to shave my legs, I rarely moisturise because I’m a bit rubbish and only wore the stockings for a couple of weeks as advised.
But I’m fine, I’m nearly 5 years clear after a radical hysterectomy with lymph node removal and 3 sessions of brachytherapy.
Try not to worry too much, I think it is relatively rare. I walk a lot, so not sure if that helped, or if I was just lucky.
I’m also very dark haired with leg hair that is impossible to remove properly with anything other than a wet shave! I’m almost pleased they never told me I couldn’t as I’ve just carried on and it’s been fine! Fingers crossed you will be too.
Thanks for your reply, I'm getting very confused now as to why I was told what I've been told, I had the same as you, abnormal cells, cone biopsy, confirmed cc1b1, followed by rad hysterectomy just 4 weeks ago so tomorrow l'll find out more, the surgeon did say that the tumor was larger than they originally thought, so I'm not sure if that had anything to do with it, I really don't know???
I just don't feel so invincible any more and don't want to chance anything.
Thank you all for your feedback
Just a quick one ladies, back from Liverpool women's hospital and had the best news! The all clear!! Hasn't sunk in yet, no further treatment needed just a check up in a few months, they got the sucker! Them surgeons are magic.
Woo hoo! That's great news! Now be kind to yourself for a while, you & your body deserve that much. :)
Sorry I'm a bit late to the party, I don't come on here very often. I had my hysterectomy with lymph node removal in July 2016. I wasn't given any advice about lymphedema and when I asked my consultant she told me I was low risk and not to be too concerned. I read up a bit online and it seems the research doesn't really give us much info on why some people get it and some don't. The best advice seems to be to keep active and to keep your BMI normal.
i habe continued to shave my legs, but have decided not to risk having any more leg tattoos. I am a little concerned that the lymph removal will mean I can't have my varicose veins dealt with in years to come, but I suppose that's a small price to pay.