Sorry not been in for a while I’ve been lost in my own mind.
I had my results meeting 1A2 cancer with surrounding Aggressive CIN 3
Been told radial hysterectomy needed and they want to check nodes while removing everything.
Scans came back clear of spread so I’m a little unsure why they want to check nodes while doing it.
I’m a mum of three children two with additional needs. 11, 8 & 6
I also have a lovely wife with epilepsy.
What I would like is advice tips anything you wish you knew before hand and after that might of helped or did help.
I’m scared crapless not that I would admit this to anyone in my normal world…. I’m scared they will find more I’m scared of how much pain I will be in and the emotions after I’m just putting a big brave face on because at the end of the day it’s this or worse so I’m lucky right! Xxxxxx
I had a different type of cancer a few years ago and I was offered the chance to check the lymph nodes in case there was any spread. I would honestly say that any chances they have of checking everything is ok,go for it. And if anything is noticed at least they notice early. I had lymph nodes removed under both arms, due to possible spread. If I was ever offered any checks like this again, I would definitely take them.
I am on week 9 of recovery after a radical hysterectomy. I was staged at 1b2 with no spread to lymph nodes. This is what was indicated at my mri and also what was found during my operation. I was advised that they go to next stage and thats why some of my lymph nodes were removed. To be sure.
I think everyones journey is different but im happy to share my own. I had no pain at all on waking up from the operation. By day 2 i was getting back pain and stomach pain from wind and constipation. I think this is common or at least it was on my ward. This was also causing sickness. I was out of bed on day 2 walking around the ward with a catheter attached. For my op this had to stay in for 7 days to rest my bladder after the op.
By day 5 i could have come home but decided to stay in until the catheter could be removed at day 7. By this time i was quite comfortable with walking and bending but no lifting.
On getting home i could shuffle for a 30 min slow walk but got tired very quickly. Unfortunately i did get an infection and ended up back in hospital for 4 days…this was just bad luck though and not the norm, so dont worry about that.
On getting back home by week 3 i was no where near as tired and was walking my dog for 2 x30 min walks and pottering around not needing to go back to bed. I took paracetamol and ibruprofen as needed but it was only really if i did too much.
I then slowly increased my time out and have just slowly got back to a more normal life. I was fairly fit prior to my op (apart from the fact that i had cancer) and im now trying to slowly get that back. Not being able to drive for 8 weeks was a huge issue as im not used to relying on others. Also no hoovering or carrying heavy bags. You will need help.
My main advice. Big baggy knickers and nightshirts. Nothing that has a low waistband. Think about your clothes to leave hospital…check if you will be leaving with a catheter. Make sure you have help in the house and have meals ready prepared for the first few weeks. A supply of lactulose is a must or at least it was for me.
Im not sure of your age but consider hrt. I was already on it and advised to increase, it was one less thing to think about or have in the mix. So no night sweats and i think it allowed me to deal with things better mentally.
Im not going to dress this up as something it wasnt. The first two weeks and the hospital stay was really hard but you will get through it and then you will be the one giving the advice to the next person. If you have any specific questions im happy to answer but please do bear in mind that we all come through it in a slightly different way. It is a major operation with many factors in it and alot of upset to your body but its amazing really how we recover from it and what the surgeons can do.
I had a radical hysterectomy with lymph node removal. Im 38 and 10 weeks post op. Was staged at 1b1 prior to the op, with clear scans. Although you consent to removal of certain bits and bobs the lymph node removal for me was kind of non negotiable as i had a rarer type of cervical cancer with an increased risk of spread. Im mum to 2 kids and so such things as removal of ovaries (which can still be left in of you dont want to enter premature menopause) was an easier decision than perhaps would be for someome without children and i am now on hrt which is fine i just have night sweats and an increase in migraines but i can cope with those.
After the op i was restaged to 1b2 as the tumour was slightly bigger than thought but there was no evidence of any spread into the lymph nodes but they took away everything with a good margin of clear tissue. I know its a worrying time thinking they may find more but for me the decision to take everything they can to test to ensure its not spread (they cant be certain from scans re lymph nodes) made the most sense to me but it really is a personal decision.
In terms of recovery of the surgery, i was out of bed by day 2 which i think, if you can, is a very good thing to do it helps release the gases that wjg also mentioned and gets you feeling a bit more you. But dont overdo it go at your own pace. I was discharged on day 4. I was off the strong pain meds by around week 2 and managed ok on paracetemol and ibuprofen for about a month after as and when needed.
Little bit of trouble being able to use my bladder afterwards for a few weeks so was with the catheter at home for a while but i think that was more to do with my pre existing shy bladder than anything else.
Not being able to drive is a pain as you do find yourself relying on others, ive started walking about, i havent been able to go back to the gym yet but physically im doing ok just twinges of pain where the scar tissue is. You might be told to have a look re lymphodema if you have lymph nodes removed as the lymphatic fluid wont flow around your lower half as easily and ive been told to massage my legs and abdomen daily to avoid build of of fluid but the nurses will explain all of that in more detail.
As wjg said, baggy knickers and loose fitting clothing is a way to go. Nothing that presses onto the scar which i appreciate is quite difficult if you have a vertical abdominal scar.
Setting your own pace and not pushing yourself is a must, take some time to recover it is a massive operation and unfortunately the emotions dont end with the op particularly when you are waiting for the results.
If you have any more questions about my experience please ask away. I hope thats helped in some way. Sending hugs
Hi Zanna, I understand how you feel and it is a totally crappy choice you have to make, between consenting to radical hysterectomy and “or worse” like you yourself put it. No one wants to be here but hey, while we don’t have much choice we try to understand what’s happening and what will be coming.
You received very good tips above, and what I want to address is the one question you made about the nodes. My consultant explained this node checking to me before my op (I had simple hysterectomy: uterus, fallopian tubes and two sentinel lymph nodes removed). I am no medical expert and I am not 100% sure your ‘checking nodes’ means the same as what was done in my operation. However, I want to share it because I understood much better when she explained it:
The sentinel nodes are the first of the about 20 lymph nodes in the pelvic area where the stream of something (blood? lymphovascular fluids? I don’t know exactly what) flows from the uterus. So they would be the first to spread the cancer as I understand. But it is not evident which ones are the sentinels. During the operation, before removing the uterus, they inject some marker liquid to see where the flow goes from the uterus. The sentinel nodes are then lit up / seen and this way the doctors know which nodes to remove. And here is the trick: you can only spot the sentinels when the uterus is in place. When the uterus is removed, you will have no way to see which of all the pelvic area lymph nodes are the sentinels. So if, after removing the uterus, something indicated that lymph nodes would have to be removed, they would have to take all of them. Now I might be wrong and generalizing too much something that she explained that applied only to my situation, but it was very interesting to understand why this method meant that it’s better to take out 2 ‘just in case’ and check them (when they are expected to be clean) than leaving an option of having to do a completely new operation and have them all removed which might cause more risk of problems because of course the lymph nodes are useful in our body.
The other thing is also that if they check the nodes during the operation and not after, this indicates that they anticipate that what is found in the nodes might completely affect the course of the procedure / treatment plan. Finally, I am happy to hear that your scans came back clear, and I think that’s positive news and I hope that you will also be cured by this one operation only. All the best!
Just wanted to say that is a brilliant way of describing the lymph nodes and which they remove. I had no idea how they did that and it was never explained although i suppose i could have asked the question . Thanks for sharing, that definitely should be something explained if its not already done so as part of the course. I had 20 out but it was just explained to me that it was due to the rare cancer cells but I am glad they were removed
Hi @LBN2022, thanks for your comment, I am glad the explanation was useful and it was very nice of you to let me know :). For me, the explanation helped me accept my operation because originally only uterus & fallopian tubes were planned out, but then suddenly some medical meeting decided also the sentinels, and I did not want to give up my body parts without being given a proper explanation why. I hope you are doing OK!
Not doing too bad thank you. Just have some adjuvant chemo to get through to blast the rare cell type as an extra insurance policy against recurrance. I definitely should have asked more questions ha, but with the rare type I just said yes to everything they said to me to be honest, which could have been a bit naive. Hopw youre doing well aswell. Your explanation has certainly given more positivity to my experience in that i know theres no stone thats not been unturned if you will x
I’m also getting prepped from some adjuvant chemo/rads. I’m 5 weeks post hysterectomy, appreciate you sharing your experience. Good luck to you! Sending love.
I had my radical hysterectomy in September along with 36 lymph nodes removed. I think we all have different outcomes but for me I was able to get around and be there for my 3 children after a couple of weeks.
I needed follow up treatment, chemo and radio, which started 7 weeks after my surgery and was feeling pretty normal by then.
I think I have been lucky as my lymph node removal hasn’t caused any major issues and the surgery itself was ok.
I wish they had been more informative about the possible issues with my bladder that I encountered after surgery. I had to go home with a catheter for 2 weeks (which had not been highlighted) but it was temporary and everything was fine after the 2 weeks. I would also have liked more warning about the jelly belly I got from the surgery but it’s a small price to pay for what they removed and I can now start working on that!
Hi Zanna4getmenot,
Previous replies: great information and advice.
If I’d had more info before my surgery. I would not have been so scared. Yes, everyone has their own situation that differs from others’, so ask questions regarding your own situation.
I am 13 weeks post radical surgery for cervix tumour 1B2. No radio-chemo was necessary! I am so glad.
The surgery: uterus, tubes & ovaries, 1/3 vagina and all deep pelvic lymphatic tissues. Number of nodes dissected from the tissues and examined were unknown by the surgeon, but all nodes were found clear of cancer. Sentinel node removal (which I asked for) was not available here and my surgeon considers it still an “experimental” approach. You may read scholastic papers on patient outcomes following sentinel node approach.
My MRI and PET scans were clear, but with my long history of abnormal cells over decades and previous cone biopsy the prospects were uncertain. The best scans can show is absence of metastases 1 cm or more in size, not whether smaller ones are present. But I was offered the choice of radical surgery OR chemo-radio ending with four brachytherapy (instruments inserted under GA). Surgery was expected 90% chance of getting all of the cancer but some risk it didn’t and would need chemo-radio anyway. I chose surgery.
I had a history of endometriosis as well as HPV, so the first part of the surgery was an endoscope to view any further endometriomas and the extent of adhesions (endo-related or from previous surgeries). If surgery was going to be greatly complicated by these, then I’d be stitched back up and sent for chemo-radio. The situation was found to be favourable, so the big cut and radical surgery. It was 6 hours. I was in hospital for 8 days. IV analgesia for 6 days. Was up and walking around from the next day with a “xmas tree” of pumps and had five tubes attached into me: two drains, two local anaesthetic tubes and a catheter for the bladder.
The pain of the gases and constipation was severe at times. The pressure of the gas expelled the catheter one night in hospital. I had to go on clear fluids.
It was good to get home, I was nursed by my son for two weeks and he put weeks of meals in the freezer for me. The bladder was rested for two weeks total and then tested in hospital- outcome was good and catheter removed. The bowel has taken some time to become more normally functional, but it’s really good there was no accidental damage to the bowel or bladder and the surgeon said everyone has some changes to the bowel.
The histology downgraded the tumour to 1B1, which means that the cone biopsy and D&C I had prior to radical surgery actually got all the cancer and that the previous pathology post cone biopsy report of “multiple positive margins” was a cautious or overestimated conclusion.
Nevertheless, I have to agree with others that they take whatever they need to, with safety margins, in order to give you the best chance of surviving, by not having the cancer spread.
The thing I wasn’t prepared for was that in my case I needed a lot of analgesia in hospital and the ketamine gave me bad dreams and a lot of brain fog. I feel it is still clearing. I’d also had a lot of anaesthetic with the two surgeries close together, the second being 6 hours. After the course of Clexane injections (an anticoagulant to prevent blood clots) was finished (that’s 4 weeks) I consulted a herbalist and went onto herbal tinctures to help clear my head, support the lymph system and kidneys and help sleep and stress.
I was allowed to drive after 6 weeks, I was allowed to lift up to 5 kg, and have been fanatically walking every day, doing yoga exercises prescribed for me and tai chi. Only this week I returned to work part time, but my work is very physical. I had 12 weeks to build up fitness before considering work.
I do have lymphodoema. This is a risk whether chemo-radio or surgery. It started soon after the surgery. I could tell even though my tummy was still swollen and tight. It’s called lymphoedema if a swelling persists after 12 weeks. Like someone else has said in this thread, I have a jelly-belly, but now I have guidance of a lympho clinician. She thinks we can get over it. So- news for me- lympho is not always permanent or lifelong?!?!?!? If you get it, act quickly.
I hope my comment helps you. You have to be brave and do this with faith in the medical people around you.
Finally, keep asking them questions and write their answers down in a special notebook you keep for this. I found even with the histology report post-surgery it did not give me and my GP as much info as the surgeon did face to face in discussions after surgery in hospital or when I asked questions at the 6 week review consultation.
Keep in touch with this forum. It is full of absolute angels. XXXX
Deb
I had radical at 39 three tumours was very lucky had a hard time after it lost a lot of weight 6 stone the lightest but it does get better ladies an 57 now nearly 20 years clear we just got live with it thinking it will come bk but life does get better . Menapause is hard but still here and very grateful
Hi im 32 with 2 children i was diagnosed with stage 1b1 to start , i had a radical hysterectomy with lynth node removal . I was in hospitals for 5 days , i used a pregnancy band when i got home so that i could move around the house better as i couldnt lay in bed all day with the kids , i just couldnt pick them up. When results came my stage was changed to stage 3 cc and that was due to lynth nodes. There was microscopic cancer cells . I have now finished 5 weeks chemo and rads . And now waiting on ct scan to show if all os ok. Posative thinking helped me . You have got this . It is best to be safe and get as much done now incase of spred and could be worse . They didnt find any evidence it was in my lynth nodes untill they were removed . Even when consultant saw me after operation she said they were not enlarged . Xxxsend love you all
I was diagnosed 3 weeks ago and advised radical hysterectomy via abdominal surgery. I’ve been pretty scared, I had a EMC but was awake for that. Started to calm down a bit and think practically but just found out my surgery has been pushed back another 2 weeks
Thank you for taking the time to explain this I’m the same as you with the information I can stay calm as I understand the reason and then don’t panic x
. Thanks for sharing, that definitely should be something explained if its not already done so as part of the course. I had 20 out but it was just explained to me that it was due to the rare cancer cells but I am glad they were removed 
