Hi everyone,
I’m not entirely sure what to say really. I guess I just wanted somewhere to talk to people who are having similar experiences - my family and friends are great but I don’t want to keep dumping my worries on them and it’s tiring working on big ‘strong’ all the time.
I was given the diagnosis of CC just over a week ago - after a colposcopy in early March followed by an LLETZ back on 10th March 2016. At my appointment last week I was given the grading of 1b1; but told I would need an EUA to check the staging and make sure it hadn’t spread to my bladder, etc. I had that 20th April. I asked my consultant what the chances of my grading changing were, as this is what has been worrying me the most, she said it is very minimal as the tumour is small.
Unfortunately I have an aggressive tumour and the only course of treatment is radical hysterectomy with possible chemoradiation as well - I’m still in the dark about a lot of it except the info I was given as was in such a state at the initial appointment. I am due CT and MRI this coming week as well as my next appointment with my consultant to discuss it all. The biggest hit for me is knowing I will never carry children, and having to tell my boyfriend this. My parents have taken it very hard, my dad especially. I had absolutely no symptoms except ongoing tiredness which was put down to b12 deficiency. I neglected my smear a year longer than I should have, so I know I only have myself to blame.
I have a few questions for people if anyone can help:
- there has been no mention of hpv or testing for Hpv
- has anyone had eggs frozen (there was mention of this) and when did they do it? Presurgery?
I guess I just feel a bit lost at the moment. I am trying so hard to be strong and not let myself breakdown. Sorry for the long message. Any help appreciated.
Kind regards
Michele
Dear Falloutgirl: As someone who only got diagnosed this week myself, I have no useful information for you, but rest assured, everyone on this forum will jump in with good advice and support to help you. Don't beat yourself up about missing a smear test. I got one every year and still got diagnosed, so that could have been your experience too. So well done for getting that smear and yes it's shit news but you've caught it early which has to be all to the good.
Good luck.
Hi. Please don't think that you are to blame for missing a smear, I hadn't ever missed a smear and had been going to the gp with gynaecological problems for well over a year before being diagnosed with stage 4 cc. Even at that stage I had very little symptoms.
Unfortunately I can't answer any of your questions but try to put the thought of childrento the back of your mind as you need to concentrate on the here and now. I'm sure there's people who can advise you properly but there's usually a way forward somehow x
Sending you love and hope you'll keep coming along for support
Hi Michele
Do not blame yourself for missing a smear!!! Mine was almost 6 months late and after never having a bad pap smear - I have been diagnosed with CC Stage 2B. My oncologist told us that smears are not always correct and that's why we get them done every 2 years if that makes sense. Even then, my oncologist said that although it takes approximately 5-10 years to develop, it can happen within a year.
The main thing is you have caught it now (and it sounds early) and you can get the treatment.
Also, I have not had any testing for HPV but believe they are going to test me for it because it was mentioned at my last meeting so you could ask at your next meeting with the doctors. The doctor also told me about a specific gene that causes cervical and bowel cancer and I am getting gene tested for that as well they said. I have never heard of this, but once I found out more I will do a post to let others know. Unless it is already known and I in the dark.
As for your eggs - my oncologists said they would remove my eggs and freeze them before my surgery. However, I cannot have this done as I am pregnant and having the baby - so the eggs will not be removed until after my baby is born and they might be compromised by the chemo I have been told. Sorry that is complicated - the simple answer that I have to your question is that they can freeze your eggs so surrogacy could be an option for you. Make sure you let them know how important this is to you! In my experience with my doctors, yes they are in the business of saving lives but they also do care about a woman's fertility so they want the best outcome for you and so they will help you!
I also know what you mean about family taking it badly - the most painful part for me is watching my family and boyfriend suffer. I try to stay strong for them, but also have learnt to just let myself be really upset if I need to be because my pain and their pain all has to come out eventually.
I have also only been recently diagnosed (2.5 weeks ago) and I have found a lot of support on here and I am sure you will too.
Sending you lots of love and hugs
Rosie xx
Hi everyone,
Totally new to all this. This is my first post.
I'm 35 and I was diagnosed with CC on Tuesday and now awaiting an MRI scan and chest x-ray. Been told it is a rare cancer that has been detected under microscope. Still don't know how advanced this is but really hoping they have caught it early.
I have been experiencing discomfort in lower abdomen and sharp stabbing pain around left ovary. Im so paranoid that it is ovarian cancer as well. I also have back ache and hip ache. Has anyone else experienced this in early or advance stages?
Thank you x
Hi Michele :-)
As others have already said, don't beat yourself up about the smear. Here we are supposed to have them every year 'though 14 months is OK' So the time scale for smears turns out to be what the UK govt is prepared to pay for and nothing of particular biological significance. I have had both a rad hyst and chemo-rads so if you have any questions I am happy to help. I have read others here having eggs harvested for freezing pre-surgery though it's not anything I have personal experience of. HPV testing seems to be almost beside the point since even if it is found there is no cure it seems to be a case of 'fingers crossed it will go away' So I don't see the point of the additional anxiety.
If you're feling a bit lost just hang around here till you get into your stride :-)
Be lucky :-)
Tivoli
Hi stacerino :-)
Oh the waiting around for test results is quite the worst part of the entire experience, you'll feel heaps better when you know your stage and your treatment plan. Sending you hugs and best wishes and fingers crossed for an outcome better than you fear
(((((HUGS)))))
Be lucky :-)
Tivoli
Hi Michelle, sorry to hear about your diagnosis honey. We all have been there and know how you feel. Like you, I have missed my smear prior to the latest (Feb 2016) which led to the discovery of my cc 1A2. At first, I also kept thinking how it could have been a different story if I didnt miss the test and all that. However, I did wake up realizing that the only way to go is forward. So I left all the could haves and would haves behind me. Though I also know this is easier said than done, but believe me, you will get through this.
As for having kids, I'm terribly sorry that you have to go through being told it's impossible with the surgery. I'm sure your medical team is doing everything they can to advise you the best treatment plan. Your ct and mri scan results should help in the next steps.
I had radical heysterectomy last April 7 and at the moment I feel so much on the way to full recovery from the operation. My biopsy showed clear results and no lymph node involvement so no further treatment required. Crossing fingers, yours will be the same!
My consultant kept my ovaries and transpositioned them as he felt Im too young (32 years old) to have the ovaries removed. My consultant told me since I still have my ovaries, I'd still be releasing eggs and surrogacy is indeed an option. As Rosie mentioned in her post, discuss with your medical team how important preserving your fertility is. Never hesitate to ask them anything you feel you need to know. I'm sure they will be very helpful.
Keep a positive attitude as there are so many success stories to keep you going. We are all here for you. Sending you lots of hugs. xxx
Izzy
Hi Teresa
Firstly, let me apologise for my late reply. Secondly, I am sorry that you are in this too. We are lucky to have such a wealth of support at our fingertips though, eh. Thank you for your reply. I wish you all the luck in the world.
Hi Philleepa
Thank you for replying. I know it probably sounds a bit strange but it offers comfort to have people away from my close knit support network to talk to. I'm sorry that you are in this. Are they able to treat you (if you don't mind me asking) ?
I am feeling much more positive this week x
Hi Rosie
Thank you so much for your reply and all of the information.
It sounds a lot like what has been said to me. I am going to properly discuss the egg freezing on friday, so I will have a better idea then.
I remain hopeful and am feeling much more positive this week. My boyfriend is amazing, as is everyone around me really. But I agree, it's difficult seeing the pain.
X
Hi
Sorry I can't really help much, I'm newly diagnosed too and awaiting mri and ct which I have tomorrow and Wednesday. I had an exam under anaesthetic last week to check for spread - have you had an eua?
I haven't had symptoms except tiredness but since I had my LLETZ and colposcopy I've had very occasional cervical pain and backache. I worry about every twinge or pain and sit thinking that it must have spread to every organ. So I think I have a small idea of how you might feel.
When do you have your next appointment?
x
Thank you so much. I'm sure I will call on you for advice very soon x
Hi Izzy
Thank you for your reply. Yes, I am going to push for keeping my ovaries. From what I've gathered that is the plan and I may not have to go through the process of egg freezing after all - so fingers crossed.
X
Thank you everyone. I am overwhelmed by how supportive everyone is. I feel much more positive this week. In fact, most days I am pretty good but every now and then I have an off day. I developed an infection on my venflon site in my hand and in my cervix after my eua, so was feeling a bit sorry for myself anyway. Thing are much better - thanks to the joy of super strong antibiotics ;-) And a wonderful boyfriend who turned up with flowers and lots of support at the weekend.
X
Hey Michele
How are you going? When is your CT and MRI?
I am so glad to read that you are feeling more positive, and having good days! You're a brave lady! Your boyfriend sounds amazing too.
Hope you're doing well :)
Rosie xx
Hi guys,
Thanks for the support from everyone.
I Have my MRI and chest x-ray on Tuesday 3rd and results back on Thurs 5th. I have told them I want to know ON Thursday over the phone rather than waiting for another bloody appointment to go back!
Still experiencing pressure around lower abdomen but will just have to wait and see.
I go through days being really positive then to be completely depressed and panicky but just taking every hour by hour. I am also feeling really anxious about the MRI cause I get really panicky.
Stacey
x
Hi Rosie
I have had all of my scans now. Have been quiet as everything has been hectic and moved so fast! I had my scans last week and saw my wonderful, lovely consultant on Friday. I have my radical hysterectomy booked for Wednesday - yikes! But the good news is no chemoradiation and I get to keep my ovaries (so we can use my eggs in the future). The other good news is no spread! My bladder and bowel are fine, chest is clear.
Yes, my boyfriend is absolutely amazing. I worry sometimes about burdening him with too much but he tells me to stop being silly. He has been the one asking to come to appointments with me, not me asking him - which has made such a difference. He lives an hour away and commutes to London for work so we don't see each other everyday in 'normal' times which makes things hard at the best of times but he has gone to the extreme to be there for me - I am overwhelmed. Thankfully I moved back with my parents recently so have them too. They also deserve heaps of praise given that they are currently supporting me (my new job is now on hold until September).
I am feeling much more positive. I'm scared about the actual operation but I am in very good hands - I've met both of the surgeons a few times now and they are lovely. I just want to live life knowing I have the best chance of survival. Things could be much worse than the prognosis I have, and for that I am thankful.
X
Wow Michele... you are an amazing girl. So strong and positive, which will help you get through this so much!
That's such great news about your scan results... NO SPREAD WOOHOO! And also great news that you are having a hysto with no chemo/radio. That's excellent news. I am so happy for you. You will be able to use your eggs no worries in the future.
Have you now already had the hysto? How are you feeling/recovering? Thinking of you and sending you lots of positive vibes.
Sorry I have not been in contact, I have had a full on week with some pregnancy complications but all good now.
Rosie xx
Hi Rosie
My op was postponed for a week - nothing major, one of my surgeons was unwell on the day. They were quick in reorganising a new date etc. He is the one who has done my past 2 ops so I want him and my consultant, therefore I was happy to wait a few more days. So am now due in Tuesday 10th.
Sorry to hear you have had complications, but pleased that it is all sorted now :-)
Michele xx
