Anxiety over node sampling

Hi fluety thats good news that your surgeon thinks you are stage 1 by tests i presume you mean ct and mri scans? Final staging happens after hysterectomy as im sure you know. Are you referring to sentinel node sampling? That is only done for cervical cancer although they are trying to develop it for endometrial. Otherwise the problem with removing random nodes wouldnt give you the peace of mind you are seeking you would need all your pelvic nodes removed. That is a big operation which brings with it the risk of lymphedema just adding another health problem. I would be guided by your surgeon who im sure has your best interest at heart.

Hi Flutey, I was diagnosed with probable grade 1 stage 1a in November 2021, and had my hysterectomy in January 2022. When I saw my surgeon end of December 2021 I asked him if he was going to sample any nodes during my op, and he said no as it wasn’t usual practice to do so for my probable grade and stage, especially since it was a more complicated surgery and carried extra risks. I was happy to accept that as I didn’t want any more surgery than was necessary. 

Hi MarmiteFan59, thanks so much for sharing your story with me. Had we been sitting together having a cuppa, I would have asked you how your histology turned out and whether you had to have any further treatment. This is because the thing that bothers me is if they dont take out a sentinel node for testing and the womb histology says stage 1 contained, there is not likely to be further treatment. This would be fantastic provided there is nothing lurking in the nodes but they wouldn’t know that if no sample taken. I think its a really bad dilemma as I just want to know either it has definitely all been removed or needs further treatment xx

Hi Papermoon, thanks so much for your reply. Yes, I was referring to sentinel node removal and testing. I have only had an ultrasound and MRI so far. The surgeon said they would only remove the sentinel nodes if they thought it was a higher stage, but since they can only tell you this after the lab work I think the logic is a bit thin really. I did read that in stage 1 contained, about 10% may have cancer cells in the lymph. I would have thought that was enough of a reason to take the sample so at least we get the full story and they can make a fully informed decision about further treatment requirements. Anyway, what do I know! I was told that the experience of the team in the cases they’ve dealt with tells them whether it is worth taking the risk of node sampling, ie stop asking questions and just let us decide what’s best! As you can guess, worry and frustration are my 2 main emotions at the moment. I get what you say about lymphoedema though, it sounds extremely unpleasant xx

Hi fluety we all have a tendency for our brains to go into overdrive at a cancer diagnosis. I had a sentinel node biopsy for melanoma in 2015. They only do it for a melanoma over a certain size. Staging is different but i was stage 2. Thankfully it was negative. I was stage 3 with endometrial cancer as a pelvic node was positive but i refused a lymphadectomy as there's no evidence it prolongs life. 

Hi Flutey, my post op histology showed a few cells on top of my cervix, so my cancer became a Stage 2 (albeit technically only) so I was offered radiotherapy and brachytherapy, to which I agreed. My surgeon did say that if I’d had node sampling and it was clear, I wouldn’t be being offered treatment. Though it all came as a bit of a shock to me to be restaged, I’m glad I had the treatment. Having prior node sampling is I think only an indication that it’s not likely to have spread to the lymph nodes, not a guarantee. They only sample a few of the many,  and, if it was me, I think I’d be wondering if the ones they didn’t sample were okay. But that may be just me! 

I hear you that you’re anxious about whether or not you may need adjuvant treatment. I’ve been there and I understand that and empathise. But just to say that even if you did have node sampling done, and even if it was clear, it’s no guarantee that your cancer might not be restaged to a 1b or 2 if it happens to have spread within the uterus, and treatment could still be offered. And I do also know of people whose cancers have been regraded up from a 1. So although in theory node sampling might ease your mind a bit, it doesn’t guarantee no need for adjuvant treatment. 

I think it’s pretty standard across the UK not to node sample for predicted grade 1 stage 1a, so you may well find it hard or even impossible to change their minds. But whatever happens, I hope you find some peace and that your procedure goes well with a good result for you.

Thanks Papermoon for your message. I’m so glad I came on this site and very much hope that you’re okay.

I’m going to see the surgeon today as op is next week so will wait to hear what he has to say now they have had an MDT xx

Thanks for sharing all of that MarmiteFan59.  You’ve given me a lot of food for thought. Will see what surgeon has to say today. I hope you’re a lot better now and have come through it all xx

Hi Flutey, I’m good thanks - but then again I’ve been fine throughout really! The radio was annoying from a time consuming point of view, as I live an hour away, but the treatment was okay, both the radio and the brachy. I finished mid May, have had one check up and will see my oncologist for one more end August. Hope you have a good appointment today - do please let us know how you get on. In case you’re interested, I did a diary thread for when I had my hysterectomy - it’s here 

community.macmillan.org.uk/.../hysterectomy-day-and-after---diary

You may also find this thread useful, started by MrsBJH, on what to take in your overnight bag community.macmillan.org.uk/.../what-to-take-in-my-overnight-bag