Removal of lymph nodes - cervical cancer

Hi Noodles,

Sorry to hear of your diagnosis. I have a close friend who was diagnosed with cervical cancer 2 years ago. I will ask her if she is willing to talk to you about her experience.

There was also another post (from Carla??)recently on the board here. You may want to try to contact her. And please ring the Irish Cancer Society Helpline 1800 200 700. They can give you advice and also put you in touch with someone who's been through it also.

Good luck with your treatment.
Hugs,

Flo.

Hi Flo,

Thanks a million for your response, I'll have a look for Carla and call the helpline, I don't know why I haven't done it before!

Noodles

Hi Noodles, carla here...i was diagnosed with stage 2 cervical cancer 7 weeks ago...there was talk initially of a hysterectomy, but they opted for the radio/chemo route. i ve head 4 radio and 1 chemo so far, not too bad, anti sickness seems to be keeping things under control so far.Hope you recovering well from surgery?

Its a scary old journey isnt it? last week before i started i had PET scan, which found a prob with my right kidney that didnt show up in the MRI, not draining properly...as the chemo drug im on can affect the kidneys they were humming and hawing about doing the chemo. they decided to go ahead on Friday but when i came home from radio today there was a letter saying i have a NUCLEAR MEDICINE scan next monday..WTF!!?I ts the tests and waiting for the results i find the hardest.

I know i have a different story to you treatment wise, but would love to stay in touch...sounds like you re like me, i would be worrying about shaving my legs too...thank god i wont have hair loss, but i will have early menopause at 40 cos the radio. I have 4 kids so fertility isnt an issue but it made me realise i am clueless about the menopause, as well as basic anatomy, i told the chemo doctor that the urologist said my right liver wasnt draining properly, DOH!!

Hi Girls,

I'm on the breast cancer rollercoaster, not the cervical one but arm lymphodoema was a big issue for me (well us, really, as my partner and I do a lot of outdoors active stuff), since they warn you never to get a graze, lift a heavy weight etc etc.

Anyway, I may be way off the point here, maybe leg lymhodoema risk is different than arm and please forgive me if so; there's nothing worse than well meant but incorrect leads, but anyway, the thing is I posted on American forums to get in touch with American women who had their lymph nodes removed and who were living an active lifestyle. The women who got back in touch were really lovely and helpful and gave me lots of advice about how they resumed their lifestyles and try to prevent lymphodoema.

Maybe you don't care about the whole outdoors active thing, but I guess my real point is that there are way more women over there and you can tap into more experience. Also, truth be told, I found only depressing scary stories about lives curtailed on UK forums. The women I got in touch with in the States and Australia seemed to have found ways of dealing with stuff, and were getting on with things.

I also discussed it with my surgeon and he was pretty adamant you just had to live your life and get on with stuff. I was horrified at the lymphodoema prevention list they had given me which included never lifting enything heavy, implied you could never fly, climb out of the sea onto rocks, get a mosquito bite, sunburn and so on. Maybe so, but your life, hairy legs an' all doesn't have to stop. That's the big lesson I learnt and it's great to get some positive vibes from the other forums out there.

Good luck with the journey(s) girls. (I sympathise with the early menopause thing too, I'm 44 but I still think it's crap, but I'm going to deal with it anyway).

xx

hey Ephemere,

Thanks for the message...i m learning more about this business every day. I never even heard of thsoe restrictions following the removal of lymph nodes, that s a bummer. but you sound to me like you have a positive attitude that wont hold you back from doing what you want outdoors, and i say go for it all!

i know what you mean about some of the forums being a bit depressing...i got a nice surprise a few weeks ago, a friend of mine {and cancer survivor} sent me a book CRAZY SEXY CANCER TIPS. It s a follow up from a documentary called Crazy sexy cancer. It is laugh outloud funny, and not all scmhaltzy like you might expect. it gives womens personal accounts many of which are hilarious and touching. i was really delighted with it. Check it out!!xxxx

Cheers Carla,

Great tip! And good luck. It's difficult, those first few months I think- trying to piece together all of the information (the macmillan site is really good for info). Beware posters-of-online-medical-horror stories as you have no idea of their physical condition/treatment etc (am lecturing myself here ). It does get easier I have found..-and Arc offer free counselling, if you are near an Arc centre, and that's a great help if you get overwhelmed at any stage.

Which I hope you won't ! It does get easier, really.You get more used to it, and more positive about it, and more accepting.

xx

Hi, ihad a radical hysterectomy 3 weeks ago today , also had lymphnodes removed and some blood vessels from the area. I was not given any information about my legs swelling or anything like that. was just told to come back in three weeks for check up and to find out if i need radiotherapy and chemo. i,m still in a lot of pain and have serious cabin fever cause i'm not allowed to drive and i live in the middle of nowhere.

[color=#408080:3s9dg4ao]Hi Elle,
I'm just back from a drive (my first in nearly 10 weeks!) The most important thing is to take one day at a time, I had good and bad days in my first few weeks, it does get easier I will be starting radio in the next few weeks, I don't need to have chemo because my cancer was caught early.
A physio should give you information of prevention of lymphodema, the main thing is to keep your legs moisturised and not to cut/scratch/break the skin as your body can't fight infection as well now that the nodes are gone, I was quite upset about this, but prevention is definitely the key. I'm having my first post op check up this week (9.5 weeks post op) so its good you're having one so soon.
Its also very important to talk to people on the phone if you don't have someone at home, it keeps your head in a better place. I hope this is of some help!
Noodles [/color:3s9dg4ao]

Hi Noodles, its good to hear from someone who's been through the same. it feels like i'll never feel normal again. miss the car and my independance (dont like asking people to bring me anywhere).
i seriously hope i dont need any further treatment, i just want to forget about it all now. i was at stage 1b1 so fingers crossed i wont need it.

Hi Ladies,i was diagnosed with level 2A cervical cancer in July 2010.I was having surgery for a radical hysterectomy on 8th Sept but unfortunately they abandoned surgery halfway through as the cancer was slightly bigger than the guidelines suggest for surgery.The surgeon did say this can happen,but i might have known it would happen to me! So the option was treatment which i didnt want to happen! I was really scared as you do think the worst.I had to wait to heal after the surgery and on 17th November i started my treatment in St Lukes.The staff there are unbelievable,made it easy to go there every day.I had to have 28 radiotherepy sessions, 6 chemo & 3 internal radiotherepy's! Im a single mum of 41 my son was 9 at xmas,so i had to continue on as normal,i did plenty of crying whenat night when he was in bed.I would leave him to school, travel to Dublin,home cook,homework etc.But i rested when i had to.My goal was xmas as i was finished xmas eve.I went back after new yr for internal radio & i was finished Jan 6.
Had pet scan in march & all was clear.back to work in April.Tiredness is now gone & everyone says i look better than ever!! haha.
So ladies it is daunting but you can get through it with keeping things as normal as possible & being positive & trusting & listening to the docs.

hey all,

well i have just been through all the treatment for stage 1b2 cervical cancer. i had some lymph nodes removed from either side of the uterus and 5 of 15 nodes removed were positive.
i had treatment (chemo/radiation) to the pelvic area and extended field radiation to the abdomen. also i had 3brachytherapy treatments.

im just ten weeks over all the treatment and i had another biopsy on monday as there was something irregular detected on the cervix. i have to wait until next week for results. its such agony. im so scared i have too have more treatment or worse.....

the cancer was found when i was 40weeks pregnant when i had a sweep, thank god it was picked up then... so the birth of my beautiful daughter was totally over shadowed with this horrible disease. it was an awfully traumatic experience and i am praying everyday that it will soon be over.

is it ever over?

with regards to prevention to lymphodema in the legs...all i have heard about is the flight socks, using a new razor or preferably not shaving...i hate that hair removal cream!!! it makes a quick and easy job to tedious!!!!! moisturizing legs everyday and being careful not to cut the skin. thats all i know about so far but its so early days i havent had a chance to think about that yet.....

has anyone else been through all the treatment?

bren xxx

hey darcy1...ur story was similar to mine...how are u now?

xxx

Hi Bren1980, How ru now? Well done on finishing your treatment & on your new daughter.You certainly have had a hard time. How did your latest results go? I was in the mater for my six month check-up, ive to have an scan on my liver as there is a cyst, so they want to keep an eye on it.Im doing ok, some side effects of radiotherepy are kicking in now.small amount of bleeding from bowel. so ive been told i cant eat anything with fibre in it anymore! (there's me trying to be healthy).My bloods are still low,but doctors says thats to be expected at our age when we have busy lives with not much time to rest. It is a scary road, as sometimes i think whats that ache & pain!! But i dont want to be a hypochondriac. My cousin died in june after 8yrs from breast cancer,it came back to her liver last yr.she was grt help to me last yr.She went to see her son in Australia 6 wks before she died, that had been her goal.She was told 2 days before she went she only had a few wks left.It was at her funeral it hit me what i had and had been through and i panicked! But we have to get on & be positive. I was told by my doctor before surgery about lymphodema, no waxing, shaving. I noticed after the treatment hair on my legs is very slow growing which is great.Also few months back i was getting facial & therepist said always tell them what you've had so as they dont massage lymph area! Well as i said i hope your results went ok, i just want this scan out of the way, and look forward to xmas as i wasnt fit for it last yr.
xxxx