Hope you are all well no matter where you are on your path or treatment.
I had the letter of doom through the door a week ago asking me to come in and speak to the gyn team today with no indication of what about, but unless you are completely naieve or in denial then I think most women suss that they have found something by that point (still not happy with the letters they send out women or the time we have to wait to see someone). Went to the appointment on my own by choice and was told that it looks like a minimum of stage 1b1 but want to do an MRI on the 24th Dec, and on the 7th Jan they are doing the cystoscopy and proctoscopy as well as further biopsy and pelvic exam to stage it properly and come up with a treatment plan.
Have just had to break the 'bacon really grown on trees' version of events to my 13 year old daughter and downplayed it, which was difficult as my mum passed from cancer just over 3 years ago, but thankfully my girl is ok and will have the support from her school as have spoken to them also.
Does anyone know how long results may take from the MRI scan and how soon after I may be able to expect treatment? Will be difficult to arrange child and animal care as am single parent with limited family who do not live locally, and have commitment with cats and dog, as well as working full time too.
All happens at once doesn't it, funnily enough I am a lot calmer and less worried than I was during the week, I think it is the not knowing bit that gets to you. Hopefully staging will confirm 1b1 and not any further, and thankfully I am not worried in the slightest about treatments of any sort, just who is going to look after my girl and pets while I have what treatment I need.
Sorry to hear your news. Sounds like you are dealing with it pretty well so far, and I was much the same, but you do have ups and downs as it all sinks in and I found this forum to be a lifeline. Try to allow yourself time to process the news.
I had MRI initial results a little under a week after the test. My path to treatment has been a bit circuitous, but my initial surgery date was a couple of weeks after the results came through. It just hasn’t really panned out as planned.
I found that friends, family and neighbours have been very willing to help with things and that it helps if you are specific about what you need. When they say “just let me know if there’s anything I can do”, tell them that you might need help with the pets or kids and see if they are up for it. You might be surprised about how much support you can tap into.
I am sure I will get a bit more worried when staging results are due as would like to have it confirmed it is still in quite early stages, worst bit was telling people I think as some work collegues did get a bit teary, but we just have to get on with it don't we!
Have you had a set date booked for your treatment yet as I see you have just put January, or are they going to let you know nearer time? I will be working step by step and just looking at the next stage at a time, as looking at the whole journey may be a little much for me. Thankfully work have been excellent and can work around my needs which is one less worry.
I will bear in mind what you say about being specific, is good thing to remember and offers of help are already there. I have helped out friends in the past going through similar and done housework for them and shopping and will no doubt have some offer to do similar when and if I have the op.
I am encouraged by your history that they did not restage you much further after doing the MRI and EAU as that is a bit of a worry to think it may have spread but hopefully mine have been reasonably accurate also.
Best of luck for the rest of your treatment and thank you again xxx
I had my MRI and they sent the results immediately to the MDT meeting (just so happened they were meeting that day) where they were discussed & a treatment plan agreed. I saw the doc a week later for my final staging & plan.
I can assure you waiting is worse than treatment & recovery. I was lucky and only needed an op, but that was more pleasant than waiting for results.
Sounds like your daughter is smart & tough. Hopefully your experience will make her understand cancer is not a killer.
You should lean on as many fiends and family as you need to, it’s much easier to win the battle when you have an army helping you fight.
I hope your staging is soon, and as good as it can possibly be, like I say I was lucky & I hope you will be too.
You’ll find lots of emotional support, practical advice & as many cyber hugs as you need here. Despite having lots of friends and family supporting me, I found chatting to girls who really understand it on here incredibly comforting and liberating.
I’ll be thinking of you & hoping for the best result.
Hi Lisa, and thank you for your reply and kind words, am so glad things went well for you and that you are all clear!!!
I had my xray yesterday and had a nosey at it, and to an untrained eye it looked normal, thought they are the experts and can tell. The waiting at the moment is not too bad, family being overbearing and worrying is doing my nut in a little, I love the fact my brother cares and love him dearly but need to ask him to take a step back as is not doing me any good by texting me a dozen or more times a day every day asking if am ok even when have told him am fine. I do not like attention at the best of times but to be barraged by his good intentions is to much for me as am a busy woman with work, daughter, dog, and so on, and now this too.
My staging is over the xmas period which is typical lol, so will not find out until about the 14th Jan I believe, have been told it is likely I would have a radical hysterectomy probably end of Jan beginning of Feb - knowing me I will be in hosp on my birthday! lol
I did get some sleeping tablets from the GP which I will use once or twice a week if having trouble, and they are really good ones! Drifted off to lala land within about 5 mins of getting to bed (they take about 1/2 hour or so to work) to try and retrain me to sleep properly. Bliss!
How cr@p you’ve had to wait over Christmas for more info, that must have been really tough for you.
I understand what you mean Re family being overbearing, I’m 32 and married and didn’t tell my parents until the cancer was confirmed, once it was they insisted on coming to every appointment with me. They were instinctively being supportive and just wanted to be there to hold my hand, and god I love them dearly for that, but I felt too that I just wanted a bit of normality and them travelling over 100 miles mid week for my appointments was tough on me, I hated the attention and hated that I was causing all the upset!
I realised they were terrified too, and I just swallowed it and let them do what they felt they needed to. When I was weak after my op my Mum was a superstar looking after me so I can’t complain - but I know where you’re coming from, don’t feel guilty for feeling like that, but try to understand your brother is simply scared, and there is nothing he can do except be there for you.
Once you know what treatment you need you’ll feel stronger & more in control, then you can recruit him to do some positive things which will keep him busy & stop you going crazy!
Thankfully my brother has stopped pestering which is great, and now I do not feel pressured I feel good about keeping him posted and messaging him often as am not pushed in to do it, yes he does feel a bit helpless but also neeeds to realise you cannot live someone elses life for them, I love the fact he cares though and am very tactful and thoughtful with him, only thing is he is does not have the ability to travel much and no transport and I live a half hour drive from him, so he will feel isolated from doing things, only thing I can do is keep him up to date with stuff. I know exactly what you mean about the attention as I do not like it either, would rther keep my head down and get on with it, but sometimes others do not deal with things in the way we would and need to work out a way to keep everyone happy, but at end of day I think sometimes you do have to be selfish when it comes to your own health and while trying to make sure others are happy you do have to put your basic coping needs first.
Just thought would let you know the chest xray and mri came back clear so there has been no advanced spread, am just waiting on the EUA on Monday now and another biopsy at the same time so hopefully within about two weeks I should have a definite staging and know my course of treatment. All things at this stage point to just a radical hysterectomy being needed but will not be confirmed yet though.
Good things are work have been amazing and so very understanding of time needed for appts etc, the hospital and consultants are great and have faith in them completely, friends have been fantastic, and I know my family care. So in a good place mentally and emotionally and feeling very strong and prepared for everything. Sleeping is not great at the moment and more often than not I am awake for hours, but thankfully that is the only real knock on effect from everything which I think is pretty good! Sleeping pills when I need them but only had couple in past few weeks when really bad as do not want to get hooked on them!!
Had Exam under Anaesthetic today - was told that there appears to be no spread into the bowel or bladder, they also took another LLETZ which was confused at as thought they wanted time to heal before doing hysto, but am sure they have their reasons, maybe they want to get as much as they can prior to the op. Have got consultant appt on 18th Jan and likely in fr the hyst on the 25th Jan, which means will be home before my brithday!! My brother is still being great which is such a help to me!
Am so impressed with the staff there, all are absolutely fantastic! I did find out that recovery hospital stay is not likely to be 3 days, but more realistically 5 to 7 days, but am going to aim for 3 and hope for the best! Need to get child and dog and cat care sorted now and make sure everything is prepared for when I return home!
The most important thing to worry about when you get home is YOU lady! I was diagnosed with CC in the first week of Nov 2012 and had a radical trachelectomy on 12/12/12 which was a fertility saving treatment that removed the cervix and neck of the womb - meaning that hopefully I will be able to conceive naturally in a couple of years fingers crossed (I'm 24). I was essentially given the 'all clear' in Jan 2012 and now will have 3 monthly check ups.
I too was so super impressed with the care I received - my consultant was a superstar and his constant transparent honesty was what I needed to continually comprehend what the next step to beating the cancer was! And my nurses - well if they had wings, I would genuinely believe in earth bound Angels! I just wanted to write you a quick message to wish you all the very best with your surgery!! I have to say the first week after mine wasn't easy but nobody said it would be easy! If I have one tip for you it would be to make sure you have some peppermint tea in your cupboard (I was blown up with air in surgery so the trapped wind in my body was excruciating!!) and a cushion in the bathroom to hold to your tummy for when you need to go to the toilet!
Hi all, quick update to say had the op done on 22nd Jan and now recouperating at home, the op went well and should find out the results of biopsies in the next week, wound healing well and was only in hosp for 3 days thankfully (made my aim lol) few minor probs but nothing major and to be honest most is just now a fuzzy haze from the hospital stay, but the nhs side was incredible, they were fabulous all of them, but when had to move to private ward due to bed shortages, the only great things there was the woman serving the food and drinks, and the view, would pick nhs any day!!!
Doing well at home now but bit miffed that only people who have not sent a get well soon card are my work team as they have done so for all other people bar me! Still, could be worse lol
I am glad Lucy that you saved your fertility, that is great news for you and I really hope that you will have children with no complications in future, am sure that will be the case xx
