So today I had my first meeting with the oncologist and the hospital that I’m going to be treated at…2 hour drive each way which is why I’m worrying slightly that today he’s told me that it’s looking like 1b2/2a staging but to be 100% sure he wants a pet scan and a eua in the next few weeks…I’ve already had a MRI and a ct and they came back ok but it showed that the tumour has extended quite a bit but still within the pelvic area I think he called it local advanced cc ( the advanced word freaked me out a bit) anyway…no hysterectomy for me it’s going to be chemorad which I hadn’t even considered I would need so this is why I’m feeling overwhelmed again…so any advice/info on this treatment would be welcomed…I’m also wondering what happens if this doesn’t work?? Do they then do a hysterectomy?? My oncologist seemed positive in that we are looking to cure it but I’m sure most of you understand that no matter what we are told there are always doubts and we always think the worst!
I do feel a lot calmer now I kind of know which direction I’m heading in but anxious whether to know how affective chemorad is? It’s probably a silly way to think but in my head I have the thought that if they take it all away during a hysterectomy then surely that’s better than just shrinking the tumour especially as I also have cin2 and I also have high grade hpv…so my thinking is just whip it all out or at least after I’ve had chemorad! But I guess they know there stuff and I need to listen to them as they know best…thanks for listening
I am waiting for confirmation of my treatment plan, I havent been given an idea of the staging but have a similar sounding tumor. I thought that one type of hysterectomy or other would be used for cc but the consultant told me today that chemorad is just as effective in this situation. I think like you said they know their stuff but it dosent stop you worrying about it! Hope it all goes well for you whatever treatment you have, keep positive xx
chemorads is a super effective treatment for cervical cancer...and after having a hysterectomy then chomerads i know how hard it is on the body to recover from!! if I'd has the option again I would of chosen chemorads as primary treatment!! The trouble with giving a hystertomy when your a 1b2/2a2 is the likelyhood of extra treatment after bcus of lymph node involvement or bigger tumor it is so tough to go through extra treatment whilst recovering from major surgery...seems no point when to survival statistics are the same!!! Chemorads def weren't as bad as I thought and are very doable...just rest when you need and look after yourself!! drink lots of water that will help too!! You'll be fine it's 5 weeks to focus on ...you'll blink and it will be done!! Keep positive :))
Thanks everyone for your comments it really does help to hear positive things...I'm just wondering...I also have cin2 cells as well as the cancer and I'm hpv positive high grade...the chemorad won't remove any of that so does that mean that eventually i will have to face a cancer diagnosis again because of the cin2 and the positive hpv...sorry if it sounds like a silly question but kicking myself I didn't ask my oncologist today
Hi Kay :-)
I'm in the same camp as Halfpint. Having gone through the whole radical hysterectomy thing and then had to have chemo-rads and brachy anyway I remain a little resentful that I had the surgery in the first place. Don't worry yourself at this stage about 'what if the chemo-rads doesn't work?' because if that happened on even a semi-regular basis it wouldn't be regarded all over the world as treatment of choice.
Try to look at it this way; you have a dirty window, are you going to remove the glass or just clean it in situ? :-)
Be lucky :-)
Hi, after speaking to some of hear wonderful ladies on here I'm beginning to think that if we do have chemorad first that maybe this is the best decision...I also think the fear of the unknown is a dangerous thing and that's what I'm battling with as I'm the type of person who likes to be clued up on everything and ever since my diagnosis I have spent hours educating myself!
Anyway..good luck on your journ and keep me posted
That's a very good way to look at it tivoli lol
thanks once again
Love that analogy @ Tivoli!
Good luck Kay! Sure that's a lot to get your head around. My best friend's mum had 6 weeks of chemo/radio when she had cc and it got everything and now she is doing great.
When I asked the consultant about options ( we don't know mine yet as still to be staged - but the best case would be trachelectomy to preserve fertility, otherwise chemo/rad) he said in general they don't do surgery AND chemo/rad as both have been proved to be equally as effective.
Do you know when you will start?
Best of luck
Hi Rachel, being 44 and having had my 4 children I'm very fortunate that I don't have to consider my fertility but I know this is not so easy for others..I am having a pet scan this week and he would also like to do a eua just so he can be 100% with what he already knows he's then allowing me to go on our family holiday to Majorca for a week on April 20th and I will start my treatment as soon as I am back from the hols.
good luck on your journey also
Good luck for the pet scan and EUA.
Really pleased you can go on holiday! You deserve it! I have a long weekend at Easter in Italy which I am also hoping I can go on and start whatever it is after that - think we'll both need a hol before it all starts!
They mentioned EUA for me too, think they like to have a feel around ( eugh!) to make sure it all joins up with what the other scans are saying. Good luck and let me know how it goes!
I have everything crossed that you to are able to have your long weekend away because like you said I think we certainly deserve it! Thanks for the good luck..I'm actually really nervous about the eua for some reason probably because Ive never really had a gemerald anaesthetic before so it's the fear of going to sleep and not waking up (silly I know)! but I think it's something that they do like tondo just to confirm that was the scans are showing is right!
let me know when you have more news about yourself and good luck
Hi Kay - I know what you mean, I'll be freaking out about that part too. Never had GA and know what you mean.
However you'll be great and actually, probably best for you to be asleep rather than awake whilst they are prodding around!
So undignified isn't it!
Best of luck this week keep us all posted.
how did your trachelectomy go? Hope all went as well as it good and your on the mend!
ive had a turn of events...the day I came back from my holiday the Macmillan nurse rang me to say after my pet scan and eua they have downgraded my staging to a 1b1 which now puts me in the category for a hysterectomy...not sure how I'm feeling about this! I also don't really understand why because after my MRI and ct they said there was lvsi present plus suspicion of parametrial involvement both sides!! This should take me straight to chemorad so I have no idea how they've ended up with wanting me to have the hysterectomy..got a meeting with them all may10th so hopefully will have my questions answered then!
Sending lots of healing hugs
Wow that sounds crazy! Good news that they've 'downgraded' it but still takes some getting used to to think you're having one thing and then get used to having another.
I had some LVSI present too, when I asked the surgeon about this he said the aim of the trachelectomy was to remove ALL the cancer, so they must be able to get that part with surgery.
Do let me know how you get on on the 10th? How are you feeling now?
Thanks for asking - I'm 5 days post trachelectomy. Came home after 2 nights in hospital. Doing not too badly, very swollen, bruised ( down there! ) tired and dizzy but getting more and more mobile by the day. I'm still on strong painkillers which the nurse thinks may be making me dizzy so going to get blood pressure checked at GP this evening.
Best of luck let me know how you are
Great to hear that it's all over with and you can now concentrate on healing and feeling better...ahh maybe your right with the lvsi as I just assumed if that was present then it would have to be chemorad but maybe not after all then...make sure you get plenty of rest and I will keep you updated as I'm going along