On 20th Feb 23 i was diagnosed with what they thought was stage 1B cancer- i had a LLETZ procedure 10 days prior to this and although the colposcopy showed no cancer to the naked eye the bit of the cervix they took had cancer cells in it and i was told that it had evidence of cancer beyond the sample they took but not sure how much. Had an MRI scan a few days later and today spoke to the specialist nurse who said although my case still hadnt gone to MDT she could tell me the MRI scan looked reassuring because the cancer “wasnt really visible”. Does this mean i could actually be an earlier stage? At my initial appointment with the consultant i was told a hysterectomy would be more than likely what I’d have but i really dont want that if i dont have to- ive finished my family so that isnt an issue but the recovery of the operation is big and ive read for early cancer sometimes another LLETZ is enough to cure it. Does anyone know if 1B is normally not visible on MRI scans or could it possibly be not as bad as that and maybe 1A?
Lots of info im just so scrambled atm dont know what to think obviously i know im lucky to have been diagnosed so early on.
Thanks girls any info of similar experiences would be great
I’m just in hospital recovering from my hysterectomy after a diagnosis of 1b1 CC in January. I had LLETZ for CIN 2 cell changes in December and was diagnosed early Jan, the deep margins weren’t clear. I was also told radical hysterectomy and lymph node removal but was quite clear I had already finished my family. I would suggest asking if you do have any other options.
In my case I had an MRI and CT and they didn’t show anything up, following my surgery I’ve been told that there was nothing visible and we now need to wait for the histology, if anything changes it would be restaged at this point.
Thankyou for your reply @alwaystheweekend i hope youre doing okay after hysterectomy. Yeah i was just confused cos the scan didnt show anything but reading more it looks like for early stage it doesnt show. Yeah i havent met with anyone yet other than the first consultant meeting to tell me about the cancer so hopefully I will be discussed at this weeks MDT then my options will be put to me!
Everyone says the waiting around is the worst bit not knowing etc
Best of luck with your recovery, im so scared of having surgery!
Hope it all works out well for you
I was diagnosed with 1b1 initially based on the lletz biopsy having a mixture of cancerous and pre cancerous cells so no clear margins. I was told the lletz took most of it out but there was a small section left over. Mine was in the endocervix so whilst ‘the face’ of the cervix so to speak was clear, deeper into the cervical canal it wasnt.
I dont know of anyone where the tumour has been down staged once the histology of the hysterectomy has come in so unsure how possible that is but there could be some people who are.
When they took out the lletz i was already 1b1 so a tumour of under 2cm. My MRI showed that it hadnt spread but a small section was still visible on the MRI. That said the MRI doesnt show up microscopic cells that could have found their way into the blood stream or lymph nodes. This is why they remove the lymph nodes to test them although i believe they can see whether the lymph nodes look swollen on both the MRI and to the naked eye when they do the surgery.
When they did the hysterectomy they couldnt physically see the remaining bits of tumour but once histology came in what was left bumped the tumour up to 1b2 so >2cm but <4cm. They did however manage to take 1.5cm of clear tissue all the way around so i was reassured that what was left was only very small.
I too had finished my family and so the decision to have the hysterectomy was quite straight forward for me personally. Yes it is a big operation and yes recovery can be slow but it is doable. I had two c sections with my children and i likened it to those really. I had the full abdominal surgery. You may be able to ask if you could have it laprascopically which may have a shorter recovery time?
Personally i wanted everything gone and reduce the risk of recurrence.
What you could consider asking i suppose is whether you could have just sentinel lymph nodes removed to test? Not all trusts seem to be doing that though and you could end up with having surgery for lymph node removal then a hysterectomy if they saw something in the nodes?
I completely understand though that it seems such a massive op and sacrifice for something that could be so small in size. To me the risk of microscopic cells being left over and the higher risk of recurrence made me choose the full op.
Im sure your nurse will be able to guide you through the MDT results and macmillan website has some great questions to ask your consultant. If you do have the op im sure you will smash it!
Yeah the way it was described to me was what they took on the lletz had cancer cells on the edge and some cells had been cut through meaning there was more beyond what they took is that what no clear margins means? Ao based on that she said 1B she thinks. Then when i spoke to the nurse about MRI she mentioned it was reassuring. I think i need to have a list of questiions to ask. I was also told i would have a CT or PET scan originally as well but nothing has come from that but i know most people do.
Im definitely finished with my family i think its more me being scared than anything but i also would prefer the hysterectomy if it is safer for the future.
I think after the MDT i should know more
Thankyou for replying though i didnt know about some cells not being seen in blood etc, i thought i had read so much but always learning new things thats why i love this forum as well so much info.
Hope youre all well now xx
@MissAb86 yeah when they have mentioned that there may be more beyond what they cut away it means they havent been able to get clear margins so theyll need to do more treatment to get rid of anything else.
My nurse told me that they measure whats in the lletz biopsy first to determine an initial stage in order to consider what treatment is best and then will add on what they find in the tissue from the hysterectomy to provide an updated stage.
My understanding is that if for eg they believed it to be stage 2 initially the treatment would vary and surgery is not always possible. In that sense a hysterectomy whilst its confined to stage 1 was a sensible approach for my case. I took a sense of comfort from having it cut out if you know what i mean.
I wont lie and say it wasnt scary, it was, but honestly the feeling of that weight lifted off my shoulders afterwards, knowing that for the main part it was gone, was amazing. Dont get me wrong there are still hurdles of course but i am so glad i had it.
Yeah take loads of questions with you, it is a whirlwind and there are times when you dont take everything in but your specialist nurses will be amazing and always there for you. Dont be afraid to ask as many questions as you can and to ask them to explain alternatives as there may be things on offer that werent for me.
This forum is definitely one of the best places to be, i googled the hell out of everything but there is so much thats out of date.
Good luck for the MDT meeting, if theres anything else you want to know about my experience just give me a shout xxx
Sorry forgot to say re CT scan, i had one of my chest due to a component of my tumour being small cell cancer which is usually found in the lungs, dont concern yourself with that though if they havent mentioned this type to you. However if theyve said they were going to do one for you, i would chase them up on that or at least ask for an explanation as to why youre no longer having one. Ill be having a PET scan as part of my follow up in a few months time i dont think everyone has a CT/PET scan initially xx
@LBN2022 thanks so much, youve answered so many questions already, i feel as though things are a bit clearer now, im definitely going to ask alot more because I feel as though so far ive kind of just got on with it without asking so heres to being a bit more vocal as you said its a whirlwind. Hasnt even been 2 weeks since my diagnosis but feels like forever when you dont really know what’s going on. I will definitely come back and ask if i need to thanks for all your help xx
Hi this forum is so helpful for the million questions you forget to ask. I was diagnosed 2 weeks ago also ,told at least stage 1a1 had my mri yesterday to see if there is lymph node involvement. The waiting and not know is the worst. Longest 2 weeks of my life. I’m 43 and have 3 teenagers so feel lucky our family is complete.
Hey @Lawro79 I hope all goes as well as possible.
So my stage after MRI and CT scan was still 1B. Im booked in for a radical hysterectomy on 25th april and then hopefully no more treatment but that of course will be decided once tissues and lymph nodes are checked after the op, but scans look promising. Best of luck with your journey xxxx
Thank you I’m hoping for mine to stay the same and just surgery no treatment. Hope you have a speedy recovery from yours xxx
Hope you are well. Very similar to you I’ve just been diagnosed with cc following two Lletz procedures due to Cgin and now they’ve found and area of 2mm cancer. They are recommending hysterectomy but leaving ovaries. I have just been for my pre op assessment and I had a lot of questions for the surgeon around the sentinel node testing.
How have you recovered following your operation, I hope it was alright. Did they take the sentinel nodes and how did that affect you? I’ve been bombarded with percentages today and my mind is all over the place. Apparently if I just have my womb removed then there’s a 2% chance some cells may have migrated. I’m also booked in for an mri on Saturday.
Hi I had a full radical so they took everything also 4 lymph nodes, I’m not going to lie the first 2 weeks were hard physically and emotionally. But once I hit the 2abd 1/2 weeks I felt ok. They left my ovaries but they have stopped working so I’ve now hit menopause and it’s bearable. I had so many questions but don’t really think anything sinks in. Xxx
Thank you so much for replying I really appreciate it, it’s so kind of you. I’m sorry to hear your ovaries have stopped working, this isn’t something I knew about either. There are so many unknowns that no one speaks about. I’m very grateful for this forum, there’s so much we can all share and benefit from.
Did you suffer any kind of lymphoedema at all? Sorry to keep bothering you!
I don’t mind at all I had a million questions. I had no side effects from the lymph nodes. My hips ace a lot apparently once you’ve had everything out your spine and ribs drop and it puts pressure on your hip joints. I only knew this 6 weeks post op when I went to the doctor as it was a constant ache. Jot down any questions so you don’t forget when you go to see your consultant, I had so many things to ask but kept going blank until I got home. There is just so much to take in. Honestly feel free to message me anytime xx
Hi Nelg448, sorry to hear about your diagnosis! I happened to read this thread and thought I could contribute to answering your questions. I had a simple hysterectomy in January, uterus, fallopian tubes and two sentinel lymph nodes removed. I was very concerned about what consequences removing the lymph nodes would have. Luckily, after time has passed, I am not noticing anything special. Maybe, just maybe, I got more cellulite more easily and I have been thinking if this was due to the operation. Then when I started exercising more again, I think it disappeared. I’m getting back into shape and physically things have been fine, no signs of lymphoedema at all. I think just after the operation things take time, adjusting and healing takes time. In the short term, problems might arise: I had infection, constipation, fatigue (due to mental reasons). Later I had scar tissue granulation in the vaginal vault. With time, they have healed, some treatment has been needed to solve them. But I find that after the operation it is easy to get help with these problems. I hope your operation goes well, all the best!
Thank you for commenting Stepper it’s so kind of you to reach out. What a wonderful place the forum is!
I’m glad you didn’t have any problems with the sentinel node removal that you noticed, that makes me hopeful that I can avoid it best I can. I need exercise for my mental health so with time I hope to get back to it gradually after the operation and hearing how you are not finding lymphoedema issues is definitely reassuring. Sorry to hear you had short term issues though, I hope you aren’t suffering with these anymore and are on the other side. But hearing you say that there is help for these issues post treatment is lovely to hear. Thank you for your kind words it means a lot!
Thank you Lawro79. I’m so glad you had no side effects from the sentinel node removal. That’s good to hear. Sorry to hear about your hips though, I hope you’re not in too much pain now and that they are helping you with this? This is something else they don’t tell you about and I’m so pleased you have shared this so I can prepare myself for it. Thank you again for your kindness I hope you continue to recover well!