Lymph node removal op

Hi Christmas I had 7 nodes removed on one side including an infected one after my hysterectomy in 2016. Im trying to remember details think it was a couple of months after. The surgeon warned me I would be a bit sore afterwards as they went through my belly button again and he said my insides would be still be recovering from the hysterectomy. It did knock me back for a while though the recovery wasn't as long as the hysterectomy. I haven't had any lymphodema so far. I had another lymph node removed from the same side last year which was a recurrence.

Thanks Papermoon

sorry to press you but my recovery from hysterectomy (currently 6 weeks) seemed longer than the norm but I did have a lot of work done.

would you say I’m likely to be up and about after 3 weeks? Surely it’s a lesser op than hysterectomy?

I hope you are doing ok?

Hi Christmas,

I had my lymph nodes taken out the same time as the hysterectomy, so can't help you on that.

My left ankle started to swell in the evening after 3 months post op, and I immediately asked about it. In all I asked 4 health professionals (including a consultant at my check up), and they all dismissed it. My own doctor said if it got 3 times the size of the other one, then worry!! He also said if the skin stops down when pressed its called 'pitting', and worry then. Not bad enough for compression stockings (for which I am truly thankful.) Its always down by morning, and what I do each day seems to bear no relationship to it swelling, or not. Consequently I have tried to forget it, and only check now when I think about it, not every night!!!

Reading on here I think you may have more problems if you have had radiotherapy, which I haven't. I am two years on from the operation, and the ankle has got no worse.  Good luck xxx 

Thanks NannyAnny

I was given a choice of lymph node removal or radiotherapy but went with consultants advice. Might need radiotherapy as well depending on results.

The treatment seems to be taking forever!

Hi Christmas my son looked after me for a few days then I was on my own after that. I think it was a couple of weeks before i started to get back to normal. Sorry it was a while ago now. The problem I had mostly was the trapped wind the same you get after hysterectomy and I felt quite depressed which didn't help because it all felt like a set back when I was feeling quite well. The body takes quite a battering having two big surgeries within a short space of time. Unfortunately I wasn't prepared for the aftermath because I thought it would be a doddle after the hysterectomy. Everyone is different though and I don't want to put you off. I didn't have a catheter I seem to remember but I did when I had a paraortic lymph node removed last summer. 

Hi Christmas,

I think you have got to try and see the bigger picture. Think in terms of months rather than weeks!!! They have to let your body recover from one lot of treatment before they attempt another. We were messing around with my husband's treatment for 3 years. Our lives certainly went on hold, but that was 14 years ago now, so well worth the inconvenience at the time. xxxxx  

Hi Papermoon and NannyAnny

thanks so much for your replies. CNS thinks 3-4 weeks recovery and also mentioned giving me time to recover between surgeries.

Whilst I understand their thinking, the time lapse is worrying me. I had the hysterectomy on 3 December and lymph nodes will be removed 10 February. That’s a whole two months for cancer to do it’s dirty work if it’s got into my system.

Histology showed it was confined to the womb and hadn’t penetrated 50% and nurse CNS said they would be surprised if it was in lymph nodes but it’s grade 3 aggressive.

That doesn’t stop me worrying though!!

Hi Christmas,

I see your point, but I'm sure they know what they are doing. Each time my husband had a new treatment or operation, or procedure he had to wait 6 weeks until he had recovered from the previous thing! I was very worried because he had two big operations with a year between them.!!! He lost a lot of weight, but gradually got back to normal. If you think of 6 weeks, with Christmas and New year added on, you are nearly at your 2 month mark.

I was Grade 2 Stage 1A,  less than 50% through. The lymph nodes were clear. I don't see why yours shouldn't be as well, but you won't be happy until you know! I've learnt if cancer is contained in something else (like the womb) its far easier to get rid of. xxxxxxx

Hi Christmas2019, totally understand your worries, another surgery. I assume its due to it being grade 3 I was borderline and they wanted to avoid removing nodes or radiotherapy as I may need it later. Touch wood I have been OK on the gynae front I have to assume its because its grade 3 with you and they are trying to avoid radiotherapy if they can. I am right thinking you were 1a grade3? Which is good it was contained I suppose they want to be sure that its all removed. 

Sending you a big hug

Hi GBear

thanks for your reply.

I was told grade 3 stage 1 so assumed that’s 1a? It was planned to remove nodes during hysterectomy but they unexpectedly found stage 4 endometriosis  and apparently I was in there 4 hours as they had to cut away from around my organs.

They initially worried it was cancer and not Endometriosis and said I would have chemo. So it could have been there was no point removing lymph nodes if they thought I was riddled with cancer! Or they simply ran out of time.

They haven’t been clear on that and I don’t know the size of the cancer they found but it was from a polyp removed before the hysterectomy.

I don’t have a choice really so will have to suck it up! Just concerned about time passing by.

Glad to hear that side of things is going well for you xxx