Hi I’m new to this but was wondering if anyone has been given the option of having their lymph nodes removed as all I can see on here is people being told they had to have them removed I found out I had cc in August have had cone biopsy and was told I had stage 1a2 now I’ve been given the option of having my lymph nodes removed my consultant said if I was one stage higher if have no option and he would just remove them anyway but he has given me a choice to say yes or no I have said yes and waiting for the op but I think I have changed my mind i am so scared of lymphodema as I’m only 27 I know it’s not nice at any age but I’m a real worrier! Is anyone on here that is stage 1a2 and found that it had spread to the lymph nodes? He told me that it was only a 5 % chance of it being in my lymph nodes so I’m really considering not having them removed anyone that can give me their experience would really help xx
Hi sweet, I am same stage as you 1a2, I was also given the option and decided to have them removed, they remove them at the same time as my hysterectomy. I am now at home 2 days post op.
i was also told exactly the same re if a stage higher they would def be taken, and told 5-8% chance cancer had spread. My reasoning was that the chance of me having cervical cancer was far less than 8% and it happened, therefore it was perfectly possible. Also the consultant said if it had spread and they didn't remove them then my chances of survival would be minuscule. I gave 3 children and they have been through enough.
Its a no brainier to me, but I understand everyone is different xx Huge hugs xx
Thanks for the reply ☺️ I have 2 children myself and that is why I said yes to the op but as its getting closer I'm really panicking iv read that you have to be careful of your legs for the rest of your life I'm so clumsy and such a worrier I know il spend nt whole life worrying about my legs it's so hard! My consultant told me there is only a 5 percent chance and seemed pretty laid back about it I had 3 weeks to decide went back in December to give my decision.. I have read quite a few posts on here and what I can see everyone that I have read so far their lymph nodes were clear. How are you feeling after your op? Sorry to hear what your goibig through xx
What did your consultant say if you didn't have your lymph nodes removed and it had spread? Is it to late then? Xx
Hi Carlee :-)
I had 17 lymph nodes removed, no cancer found in any, and no lymphodema problems later either. I don't know what proportion of women who have lymph node removal go on to get lymphodema but it certainly isn't inevitable. It sounds to me as though you need to ask your consultant a few more questions. Certainly being told that no cancer was found in any lymph nodes came as a huge relief. There is a chance that if you don't have them tested then you might continue to worry that something has been missed so do give that some thought as well.
Be lucky :-)
Tivoli
Thanks for the reply how many lymph nodes do we have he has told me he would remove 98% of mine I think this is extreme I really don't think that many need to be removed what stage did you have if u don't mind me asking xx
Hi Carlee,
I had 19 nodes removed, 9 on one side and 10 on the other. I was found to have 5 nodes in total which were positive for cancer, so I went on to have chemo radiation as well. That was over a year ago, stage 1b1. My consultant did tell me that because I had lymph node dissection and radiotherapy that I would be high risk for lymphodoema as the radio damages the lymph just under the skins surface. Nearly all the posts I have read have been negative for lymph node involvement, so hopefully yours will be similar, and as your consultant said having lymph nodes removed does not make you high risk for lymphodoema. I have actually just been picked up with lymphodoema, although you would never guess it. I am slim and look exactly the same as I always dI'd, but they have picked it up early and therefore I hope will stop it from getting any worse. A good exercise regime, keeping weight down and simple lymphatic drainage self management if your ankles do swell is all helpful. Don't look at the worst because it probably won't happen! Hope the op goes really well.
Hi Carlee
I was stage 1b1 and had just under 40 lymph nodes removed. Luckily no cancer was found in them and I didnt have chemoradiation. I have had no problems with lymphodema whatsoever. Must admit if I'd had the choice I would have had them taken out anyway, just in case.
Wishing you lots of luck with your op. I'm just over 2 years post op now and doing well, now on 6 monthly checks.
Hugs, Cheryl,xx
Hi I have advanced cc and I had cancer confirmed as being in a lymph node but I haven't had any surgery. I've had chemo, radio and brachy and on each of my scans have shown that my cancer has shrunk and there was no further mention of them. To me that means the treatment has killed the treatment within them.
either way if you have follow uptreatment then any trace of cancer should be killed off
hope is helps xx
Hi Carlee,
I was a 2b. I am in Greece where things are done differently in that there is no such thing as an MDTeam. I was diagnosed by a gynaecological surgeon and so my initial treatment was surgery. He later consulted with an oncologist who recommended chemoradiation just to be extra safe.
I couldn't say for certain but I don't believe that anybody knows how many lymph nodes we have. During lymph node removal tissue samples are taken and then lymph nodes are found within those back in the lab. It's not like picking peas out of a rice dish :-)
Be lucky :-)
Tivoli
Hi,
I was diagnosed with 1b1 and had lymph nodes removed. No cancer in any thankfully. I didn't have a choice but it was a huge weight off my mind when they came back clear.
They first two weeks after the op were not pleasant...bloating, swollen lady area ect. Nearly a year on...virtually no scars and back to my gym routine.
If you feel it will lower your stress and worry go for it.
Michelle
Thanks for all your replies it's been a real help I think I'm going to have to have the op for my children's sake just really worrying is spose that is normal though.. So lovely reading all your stories and seeing positive outcomes I wish u all the best xx
Hi there!
I was a 1b1 and only had a cone biopsy with lymph node removal in October. They took out 19 of them and they came back clear thankfully, I was very nervous about that. I think the risk of lymphoedema is about 10% so not that much greater than the chance that they might find cancer in any of the nodes so in my opinion it's much better to know for sure and be on the safe side of things. I don't think I have any lymphoedema though some times wonder if I'm a bit swollen in my groin-but it's so little that even I struggle to understand if it really is swollen. I found the surgery to be not too bad-was up and walking to the shops in 3 days and back to normal after 3 weeks.
Good luck to you!
xx Anna
Thanks Anna glad your results were clear, it's just very scary knowing your life can be changed after it and I've heard you have to be careful with your legs for the rest of your life I'm very clumsy so that's why I'm panicking xx
Hello Anna,
I WAS also 1B1 with clear margins and bood vessels after cone biopsy (in USA). Doc says radical hysterectomy or trachelectomy are the "Standard of Care" for my stage at this point, but I'm not having it!! I don't really see the logic in removing more than likely perfectly good organs when they don't even know if there is any disease in them. There can ALWAYS be complications with this type of approach! After going back and forth with my doctor, she came back with the option for laproscopic removal/sampling of lymphnodes that feed the area. I really don't even like this option, but I am willing to consider more than the alternatives for some peace of mind. Sounds like you may have gone with a similar option? You did NOT have a hysterectomy or trachelectomy at all? I am just curious if your doctor tried to push you towards those options and if you went against their recommendation? Any help/thoughts you can offer to me would be greatly appreciated!
Thank you,
Janine
