Hi everyone, I’ve had conflicting information and I’m really worried.
Is there anyone reading this who has had surgery with removal of lymph nodes?
Heading for radical hysterectomy with removal of all lymph nodes within this month with 1B2 that was not able to be fully removed by cone biopsy in August. I was first offered choice of surgery or treatment- went to radio-chemo appointment but after learning about what’s involved I returned to ask for surgery. Everyone expects it can be cured either way. But if (post surgery) it’s been found in the lymph nodes I’ll be sent back for 5 weeks radio-chemo anyway.
This is my issue I’m really struggling with: the senior radiologist said don’t worry they don’t take out all the lymph nodes these days but then the surgeon says she will take out all the lymph nodes- and that taking only the “sentinel nodes” is still regarded as experimental.
Doesn’t make sense!!! I’m terrified of lymphodaema because of my self-employment and lifestyle. Why would they take out all lymph nodes and risk lymphodaema when:
A. It’s unlikely that cancer has spread beyond the cervix, and
B. If cancer is found in the lymph nodes they’re gonna radio-chemo me anyway (the normal treatment alternative to surgery minus brachy) which was supposed to have equal chance of cure.
This happened to me. I had the hysterectomy and cancer was in 5 lymph nodes so i went on to have the chemo rads. The chemo radiation is more damaging to surrounding organs if you have already had the hysterectomy. So although i survived the cervical cancer i went on to develop vaginal cancer from the radiation 20 years later and that needed really radical treatment.
After what i have now been through, if i were in.your position at this time, I would want to find out more about the lymph nodes. Is there something suspicious on the scans? If they think there is a high chance that one or more were affected then i personally wouid go straight to chemorads. If they think its unlikely then it may be worth a go. Only you can choose.
I am sorry you have this dilemma and i wish you the best of luck.
Karen x
Thanks Karen, I hope that your life has improved but it sounds like it was quite a journey.
Yes the thought of going back for chemo-rad is not good. So much damage. The possibility of what you’ve faced hasn’t yet been mentioned. What was your stage?
However they really don’t think mine’s gone further and so they are still calling it stage 1B.
There is totally no point taking all the lymph nodes and causing more surgical disturbance to my endometriosis riddled pelvis.
I think they’re approaching it with a set routine.
I was staged a 1B and that became stage 3 when the surgery revealed things to be worse than thought. However, it was 1997 and although i had an MRI the PET scan wasnt available then. If the same was happening now, they would have had a much better idea and we wouid probably have gone straight to chemorads.
Important thing is that I survived even with lymph node spread. I was 34 when i had my treatment and i just turned 60 on Friday.
Hopefully you will be rid of the endometriosis too!
Karen x
Thanks Karen.
XXXX
Hi DebHunter
I was in a similar situation to you in 2017: stage 1B1 old Figo (stage 1B2 new Figo); there was an element of doubt about my lymph nodes from the scans in that whilst my nodes didn’t light up some were visible. My medical team were keen to try and prevent their patients having both hysterectomy and chemo-radio so I initially just had a lymphadenectomy and was found to be node negative. I was then robustly advised to have a radical hysterectomy which in my case, according to my surgeon, gave me a 90% chance of cure. Unfortunately my post RH histology revealed LVSI, PNI and a close margin and, much to my horror at the time, I was then advised to have chemo-radio which I agreed to.
I can very empathise about the risk of lymphoedema. It was one of my worst fears and unfortunately I did develop it and very unluckily for me it started and progressed fairly quickly and extends from my right hip through right leg to foot. However, I know of others who’ve had similar treatment to me and they’ve not got lymphoedema, even several years on from their treatment.
I can’t really say what I would have done with hindsight because there’s no way of knowing what the outcome of choosing a different treatment route would have been. I asked about sentinel node biopsy during my first consultation and was told my surgeon didn’t offer it as an option. I have sometimes wished I’d pressed for a referral to a surgeon who does sentinel node biopsy but it didn’t occur to me at the time e.g. I believe it’s done at The Marsden, London. I sometimes wish I’d refused to have my nodes removed; I didn’t know at the time that it’s very much a minority of patients with early stage cc are node positive e.g. In one study 18.6% patients with early stage cc were positive for pelvic lymph node metastasis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8750515/
But then I just might have been one of the minority?! Sometimes I wonder if i should have agreed to the chemo-radio; I didn’t ask at the time what my risk for recurrence was - my surgeon restrospectively told me that he thinks he got all the cancer out but he was over-ruled by the chemo-radio vote! Sometimes I wonder if I should have gone straight to chemo-radio and bypassed surgical removal of lymph nodes; sure the radio ‘fries’ the lymph vessels and nodes but I think the risk for lymphoedema is higher if you have lymphadenectomy + radio than just radio alone. However, I believe I had a lower dose of radio on account of having had a hysterectomy than I might otherwise have done.
Sorry if the above makes for heavy reading. Your situation very much resonates with me - it’s a tricky one.
I wish you all the best with your decision making.
x
P.S. Something I wished about sooner than did is LVA microsurgery for lymphoedema. It’s generally only available privately and is expensive but seems to offer a lot of hope for those with very early lymphoedema:
https://olp.surgery/understanding-lymphoedema/surgery-for-lymphoedema/
Professor Hannah Fry has recently publicised her personal experience regarding cc and lymphoedema:
https://www.dailymail.co.uk/news/article-10929935/Why-TV-maths-guru-Hannah-Fry-needed-surgery-cancer-treatment.html
Jazza,
I am going to Oxford on Friday for lymphodoema scans regarding the treatment. I do have awful lymphodoema but its been the price i have paid to survive against the odds. Wil let you know how it goes if you are interested.
I saw the Hannah Fry documentary. It annoyed me at one point because she described lymph node involvement as “a death sentence” which is an extremely negative view. Poor prognostic markers for sure but i am testament to the fact that you can survive.
Karen x
Hi Karen
Yes, Hannah did come across as a bit OTT about lymph node involvement. Maybe it’s a reflection of her own fear that crept into her writing?
To date, lymphoedema has been the bete noire of my own experience and I was pleased Hannah she got something out in public about cancer treatment and lymphoedema.
You might already have read on this forum that I had an assessment in 2019 with one of the surgeons at the Oxford clinic. I wasn’t considered suitable for LVA or VLNT surgery but was advised that if my swelling was to get worse then SAPL would be an option. Although I was especially diasappointed not be suitable for LVA, I felt the assessment which included a ICG lymphography scan was very worthwhile as it gave more understanding about how my lymph system is malfunctioning.
All the best for your appointment on Friday. It would be very interesting to hear how you get on if you are OK to share.
x
Great insights here from Karen and Jazza. Good luck Friday, Karen. Yes please do consider keeping in touch as to how it all goes if you’re ok about that. I find out my surgery date today. I also had a good talk with the specialist nurse yesterday who was going to take my informed and reasoned request for removal of sentinel nodes only to the surgeon on my behalf. I will follow those links for more info this morning. Cheers.
I’ve just been told I have to have another appointment with the surgeon now that I’ve raised a request to consider only sentinel node removal (instead of full lymphadenectomy). So my surgery is not yet scheduled as I expected. Maybe scheduled at next week’s Tuesday triage meeting after I meet with the surgeon again Monday.
Hi
I had this done 5 weeks ago!! I was originally diagnosed as 1B3 then during surgery they found it was larger then expected and had 36 lymph nodes removed and now just about to start chemo/radio therapy. I haven’t suffered from the removal of the lymph nodes.
Happy to answer any questions you as as it’s very recent for me.
Hi ziggylight1,
That’s a good news story! Good luck with your chemo-radio.
What’s the secret to your success? Any tips will be appreciated.
I have sccc large 7cm tumour and no evidence of spread into lymphnodes but because aggressive cancer i received 3 cycles of cisplatin and etopisde daily for 3 month then chemoradio for daily 5 weeks then 4 brachy HDR. Awaiting to see if has worked. Into my 10th week until rescan at12. Feeling very anxious. However all this aggressive treatment was given for best outcome hopefully but i was not told about effect on. My limbs. My legs and arms i could cut off they are so cold feelingand unbalanced walking and dropping things. Peripheral neuropathy. Now it looks like i may have lymphodeama in legs. Going to lympedema clinic this week. I was very worried prior to treatment of lymphodeama and was told very slight chance only as not blasting the nodes. Now i realise they did blast them just incase any cells around that couldnt see on scans. Been left like a cripple. So ruining my life but i suppose if i get cancer free for now i will excuse this but its still a hard journey. I wished i had not had my lymph glands blasted as there was no spread seen it was done profolactically. Cant complain if it saves my life which i am yet to find out but i do know last check it had shrank from 7cm to 2cm prior to brachy radio… But it is defo not the body i had before. I am slim to now fat and painful legs. I need a wheelchair to walk longer distance of 200mtres. Hope this treatment has not left me permanantly disabled so ask lots of questions before going ahead if you have a choice. I had no choice due to the aggressive cancer diagnosis
Hi Denise,
That’s no good, you should have been told more about what they were intending to do and its consequences so that you did not received this reality so unexpectedly. It’s the least you can expect and should receive. I am so sorry for you in your situation and hoping mine is not a similar path. Mine too is “invasive with multiple positive margins” not sure how large as some was removed in the cone biopsy. I asked about sentinel node removal only (to reduce risk of lymphodaema) and that just held up my treatment for another week as I’ve been called back fro another consult. It should not be so difficult to get information out of them. I think what you’re feeling is so understandable and regarding the ultimate outcome I’m hoping for the best for you i.e. as you say, saving your life, but also improvement in disability. If you feel able, talk to the professionals around you as you continue your treatment, telling them that you needed more information than what you got and why. Hopefully it will gradually get better for others. xxx
Sorry about my spelling. I have peripheral nueropathy and hit all wrong keys when typing. But so much I could write about my experience initially. Suffice to say i met a lovely lady on this site who also has same rare cancer as myself who has been a massive support to me throughout. Thank goodness as she is ned after 9 months with same size tumour etc and same treatment i have had so it keeps me positive to my outcome. No thanks to the original gyneacologist who basically insisted there is no way i will survive. Cruel and unproffessional.
Your courage and persistence is inspirational. I’m so glad you found this site and support. All the very best!
…and thank you so much for sharing.
Hi, I’m sorry you’re going through this and it’s causing you so much stress. I had a hysterectomy as my surgeon said it was the preferred option for him. I also had lymph nodes removed but not all lymph nodes in my body just some of them. Unfortunately I did end up going through radiotherapy, chemotherapy and brachytherapy too but I’m in remission.
I hope this helps even a little bit!! Good luck, I’m keeping my fingers crossed for you 
xx
Hi- I went through this exact dilemma at the same stage as you.
After discussing it with my surgeon he put together a really well written letter that went through the options and my particular risk of it having spread. We settled on an interim ground of sentinel lymph node removal but also the ones around it being the ones least likely to drain the legs for future lymphoedema purposes and most likely to drain the cervix from cancer spread perspective. In the end I had 27 removed none of which showed any evidence of spread. Feel free to private message me if you wanted to discuss more xxx
Hi- thanks for the insight into your situation. Can you please tell me what stage yours was? I have just been told that sentinel node only is outside protocol for stage 1B2 and anyway this hospital doesn’t offer sentinel node only removal.
It’s so hard to get information from the medical people. Why does it have to be this way?
Meanwhile my surgery including complete pelvic node removal is scheduled for Tuesdya.
It may be a bit late to be heading off somewhere else anyway but I’d like to know from you!
Deb
