Hi ladies, wondering if anyone has had targeted pelvic radiation after a radical trachelectomy? My lymph nodes were clear, but margins very close and a patch of LVSI means they are suggesting radiotherapy as an insurance policy. Without it they think I have a 30% chance of recurrence. I’m a bit devastated as we were really hoping to avoid radio and preserve fertility. Also I’m terrified of bladder/bowel side effects and menopause/HRT. Anyone had ovary transposition prior to pelvic radiation? Would love to hear any stories good or bad x
Hi Cj :)
I hope you're doing well after your op.
Sorry, I can't answer your question but I wanted to ask you a question about LVSI and recurrence (if you don't mind).
Has your doctor given you a statistic for chance of recurrence after you have had radiotherapy (i.e how far from the 30% does it go down by)?
I asked my doctor about the effect of LVSI as I have LVSI present and I'm worried about it but he said that not enough is actually known/proven about LVSI and spread, recurrence etc yet.
x
Hi jennyyy, not sure but I'm seeing him tomorrow. The 30% is calculated from a number of factors, mostly I think tumour load and margins because the main thing they're worried about with me is central reoccurance (At the op site not distant LN).
Jennyyy has your doc mentioned radio or are they going to wait to look at LN?
Hi Cj :)
I hope your appointment goes OK tomorrow. Do you have to decide if you're going to have radiotherapy by tomorrow's appointment or do you have longer to decide?
I've been told that if it's in the lymph nodes then I will need radiotherapy and if it's not in the nodes, I presume that is the end of treatment.
I suppose at least if it's central recurrence they are worried about, with the regular check ups they should be able to catch it very early if there was a recurrence (but obviously fingers crossed that no one gets a recurrence).
x
Hi Jenny, sorry for the slow reply, have spent the past few days travelling back from melbourne and giving my brain a rest from cancer thoughts! We had lots of good discussions with th surgeon this week. Basically it's all a numbers game. They calculate a GOG score and that estimates risk of recurrance. My tumour was largeish (21mm), endophytic (burrowing in to tissue instead of growing outward) and some LVSI putting me on border of med/high risk (i think i scored 120)? it sounds like the first LLETZ got all of yours so hopefully your LN are clear and you wont need anymore treatmnt! do you know how big your tumour was? He said LVSI was more a theoretical factor than a proven one. We are considering just monitoring things for a year or 2.. I'm not keen on radio and its side effects for a theoretical risk.. and for me they are most worried about recurrance at the site so hopfully detectable and treatable. hmmmm...
oops.. we have a bit of time to decide, and we will do an egg collection cycle in the meantime. everything feels like slow motion doesnt it? which stresses me at times but at least it lets you think and process the next step x
Hi Cj :)
I hope you managed to have a few cancer thought free days. I don't think I'd be able to manage that if I tried! Hopefully everything will start getting back to normal for you now that you've had your ops :)
Do you have the option of waiting for radiotherapy for a couple of years? If you say no now, does that mean you can still choose to have it at a later date?
I called up this week to ask about tumour size and was told that they cannot give an exact size but they can say that it was no bigger than 20mm. I asked how much LVSI was present and the nurse that I spoke to said that it isn't usually measured in terms of there being a little bit or a lot of it, it's just there.
x
Hi Jenny, yep cancer free thinking days were a bit of a farce, but at least my partner and I decided not to talk about it for the weekend so it felt like a break even though it was still going around in my head!
yep youre right with the LVSI, if it's there even little bit it adds as a risk factor. However my surgeon did say there was only a 'tiny bit' which at least makes me feel better :)
under 2cm is good that puts you in a lower risk group. I think they tell that by palpitation of the tumour unless you have a good MRI that can measure it.
in order for the radio to be adjuvant in terms of lowering risk of occurrence I need to have it in the next 4-6weeks. on my super positive days I plan to leave things be, monitor closely, have a TAC placed at 6mo then try for a bubba! If we're lucky and have a caesarean at term I think i'd opt for a hysterectomy at that point, then depending on whether there's cancer present perhaps opt for radio then? always good to have a plan, even if it's a crazy one! I'm seeing my oncologist Friday so we'll see what he thinks :)
as fat as I understand it, in my case delaying radio might mean I'll have to have more extensive irradiation upon recurrence rather than affecting overall survival. I guess no one can ever be sure...
how are you going with the waiting? nearly halfway through jan so hang in there! Xx
Hi Cj :)
I was hoping to be told something along the lines of "just a little bit of LVSI" but they said they can't say but I'm feeling a bit more positive after speaking with you as you had LVSI but no node involvement so hopefully it will be the same for me :)
Your plan doesn't sound crazy. Hopefully your oncologist will agree that that's a sensible plan and from what you've said, it seems better to delay the radiation. Is it only a 6 month wait after trachalectomy before you can start trying to get pregnant?
I feel like it has been absolutely ages since my last op and ages until my next one! It's three weeks today so not too long and I know everyone says that cervical cancer is slow growing so won't spread in such a short amount of time but I still want the lymph nodes out ASAP! Also, I've started getting paranoid that it's spread to far away lymph nodes as I have a sore armpit and there are lymphs there but hopefully I'm just imagining it. Roll on 06/02!
x
Usually 12mo wait after trach but cos i'm nearly 40 I think they'd go a bit sooner. Nice to think these things might be possible...
i totally understand your paranoia.. Before my surgery I thought every twinge was an enlarged lymph node even though they'd looked pretty hard on the mri and found nothing. I think you're allowed to be paranoid at times in our situation! I hope the time goes quickly for u x
