Hi everyone, it’s my first time posting here so I hope I’m in the right section. I was diagnosed with cervical cancer on Wednesday. I attended a colposcopy a few weeks before Christmas and the Dr said I would receive results in the post. I tried to put it out of my mind over Christmas as I have a young son & wanted to enjoy the time with him & my husband. Anyway, as soon as I received a phone call on Tuesday to see the Dr for my results instead of a letter, I knew it would be bad news.
Obviously the few family and close friends we’ve told are devastated but supportive. As silly as it sounds, I am actually OK. I was hoping for the best news but had mentally prepared myself for the worst (of course you can never fully prepare yourself for hearing those words) I’m not sure exactly what stage I’m at yet, until I have a scan but I’m trying to stay positive, at least until I have more information. I have found it harder to tell people about it than I found it to hear from the Dr in the first place. I’m just very eager to get to the next stage and face whatever treatment I may need. I feel very restless waiting to find out how bad it is. I’m not nervous about surgery or procedures or anything, I just want to get it out of me and get on with my life.
I wondered if I only feel like this because it hasn’t sunk in properly yet, but surely it must have sunk in, it’s all I’ve thought about in the last few days. Although I can’t believe it’s happening to me, I also know how many people cancer affects and chances are it would affect myself or loved ones at some point in my life, so maybe I kind of expected it. I don’t know, I’m sorry for rambling on. I just wondered what other people’s experiences are, of being recently diagnosed & whether I’m being cold and heartless (albeit to myself) by being so chilled out. Obviously I’ve had a good cry and I’m unsure what the future holds but right now I’d describe my mood as determined. Thanks for reading my rambling essay x
Sorry to hear about your diagnosis. I think it is hard to know how you feel on this journey but it is great that you are tackling this head on. My feelings changed throughout from 'hurry up and get operating on me' to 'OMG am I ever going to feel normal again' and 'Has this all just been a dream'
It is hard to tell others, I had to call my mum and that was the hardest thing to do because I didn't want tp upset her.
I think waiting around is hard so keeping a positive mind when you can definitely helps. I hope you get some answers soon so you can get on with the next steps x
There is no right or wrong way to deal with this news. Everyone reacts differently to this and you don't have to worry that you are not reacting right or wrong. When I first found out I felt worse when I told people because I felt bad that I was upsetting them.
I didn't cry or freak out. I know I had a very hard time sleeping as I could do was read and read. I did go to the dr for anxiety and as soon as I was able to have more understanding of what I was facing it was much easier to accept. I still have issues with acknowledging I am going through this. Some might say it's a delayed response but it still has not really upsetted me drastically.
I have accepted I had this cancer and I have also found a calmness in the unknown. This is a process we are going through together. This forum has helped me so much as I feel apart of a community that understands and can escape here to be with people going through the same issues.
Try to stay positive and once you know the plan you will be able to focus on the treatment. There are many ladies on this site that will be able to help. Stick around we are a great bunch and know you are not alone.
I was recently diagnosed on Tuesday 3rd and had a very similar experience to yours. A smear showed that I had severe dyskaryosis so had a Colposcopy and LLETZ before Christmas which was not the most comfortable experience at all!
I received a letter in the post on the 30th December and as I remembered the consultant saying that if there was aything to be concerned about I would receive a letter quite quickly it did cause an alarm bell. The letter didn't specify anything other then I had been invited to attend an appointment with a consultant so the alarm bells rang even louder. When I googled the consultant his specialist area of interest was gynaecological oncology so I was very much convinced I knew what I was being called in to be told. My partner tried to be optimistic but I already mentally prepared myself which I think helped because they did confirm that I had invasive cancer.
I'm not entirely too sure how to react either and my mood swings are driving me crazy. One moment I feel genuinely fine and so positive and so optimistic and then I was denying I even had cancer and then I was sobbing in the shower. It feels so weird to be going through this, almost like half of me is and the other half is running to catch up a bit.
It's stage 1b1 according to the letter that was sent to my GP - not that anyone told me that directly - but they still need to stage me via MRI, PET-CT and a pelvic examination. They have also already determined that I will be having a trachelectomy based on my stage and age (31) but I don't feel so much like this is my treatment rather then this is treatment that is being done to me. I appreciate (and am extremely grateful) that they are moving so fast but I suppose I am struggling with what is a massive lack of control over any of the process and I don't feel that anyone is really explaining anything to me. If it wasn't for this website I would know absolutely nothing at all.
I've found the website and forum so useful and encouraging and will be popping back on this a lot I think in the upcoming months. Has anyone gone to any of the support groups or called the helpline?
im sorry to hear about your diagnosis but rest assured that you will get through this!!!
it is so overwhelming and it does take awhile before it does sink truly in. I have to remind myself that it was actually me that went through treatment some days as when I look back at this summer I almost feel like everything that happened wasn't actually me.
You will be quite busy with appointments and soon you will know more. Try to just take each day as it is and dont expect to feel any certain way. The emotions of this are all over and some days are filled with optimism and other days seem so gloomy. Keep your chin up, you got this.
Dont be afraid to post as we are all in this together.
Thanks everyone. I agree that it doesn't feel like it's actually happening to me. It's such a weird feeling and something that you never really think about until you're going through it.
I have an appointment with the specialist on 19th January to discuss the next step. It doesn't mention in the letter about having any treatment/scans on that actual day so I guess it's just to meet the specialist and discuss options. The letter sent from the Dr I saw at the hospital states that I have Grade 2 adenocarcinoma and states that he's already discussed the probability of having a trachelectomy.
I am finding it much easier to just put it to the back of my mind and not let the feelings of doom take over every day. I just think taking it day by day will be easier than worrying until the next appointment. It's easier said than done though.
story is exactly the same as mine, I got diagnosed on monday the 9th I have a mri scan booked for Thursday. im really worrying about it. I haven't been sleeping properly at all! I've really found that talking about it all is really helping!
I have 2 young babies and I'm scared to death that im not going to be around for them :(
I had my PET-CT scan done on Tuesday which was fine, took 20 minutes and the worst part about it was having to hold my hands above my head for that length of time! I had my MRI done on Thursday which also went ok, as I am terrified of close spaces I was told that I could go to the Doctor's beforehand and get myself prescribed a sedative which I think helped massively. So just in case anyone else is due to have a MRI and are nervous tell your nurse and ask if the MRI team can send a sedative request letter to you so that you can go to the GP and get one!
My partner came in with me as well (all he could do was stare at the top of my head!) but I found that also helped having him in there so ask your MRI nurse if that's possible too. My cancer nurse told me that they try to discourage people going in but honestly the radiographer could not have been more helpful when I explained how nervous I was.
I ended up having a bit of a difficult phone call with the receptionist at the MRI department beforehand because there had been a mis-communication where I was waiting for them to call me and apparently they were waiting for me to call them in order to book the appointment. As I had tried calling them several times that week and was told repeatedly that I would get a call back I left it only to get a narky phone call on the Thursday morning essentially demanding that I make it in that afternoon except my partner and everyone else I knew was at work so told them I didn't think I could do it.
This resulted in a bit of a snark off between me and the receptionist where she essentially blamed me for holding up the process as they were waiting for me to call even though she had already said it was their bloody error!! Grrrr. I ended up making a phone call to my cancer nurse where I actually started having a cry down the phone which took me by surprise! I think I was holding it all together until someone decided to have a bit of a pop at me and I must admit the attitude of the MRI receptionist really shocked me! So far I've dealt with lovely nurses but clearly it was only a matter of time before I got 'that one!'
I'm having an appointment with another consultant next Tuesday who was different from the consultant that diagnosed me. It's quite confusing as where I live two hospitals work in partnership so I have been going to one for an appointment then the next appointment is at another hospital and then back again so I feel a bit like a tennis ball. Apparantly Tuesday consultant will go over my PET-CT and MRI results and then advise what needs to happen from there.
I'm a little amazed at how little they are telling me at the moment. The nurse dropped the bombshell that I would be having a trachelectomy and the way she said it made it seem like I would be getting my tonsils out or something, it was only when I came on this website that I found out what it was.
I'm also finding out that there are some things that I can't stand people saying. I have one friend who keeps telling me 'it could be worse' and although I know that and I know that I am so fortunate to have caught this in its early stages I realise that I just don't like it when someone without cancer and who doesn't have to go through all this is telling me how lucky I am. I mean I can say I feel lucky but for some reason I hate it when she says it to me! Is that completely irrational or what? When I told her I would appreciate it if she could stop saying it she told me I need to make allowances for her as its difficult to know what to say. Which I get but I was made to feel like I should be more flexible to her needs. I suppose I'm worried that when you tell people you have cancer it does some funny things to your relationships with them.
Sorry for ranting on but as Kalie says talking does seem to help and its hard doing the positive thing all the time for friends and family because you feel like you don't want to worry them and I'm sure that's multiplied by 100 if you have children.
I hope you are all doing ok and are moving ahead with your various scans etc. I found it did really help telling the nurses I was nervous. Let me know how you all got on.
I find talking really helps as well and sometimes I worry that I'm boring people with it as I need to get it off my chest so if you want to get it off yours by talking here then go for it! I'm finding it really helps! I hope your scan went ok if you had it? I took a sedative for mine so if you haven't had yours yet is that something you can still do?
I had massive insomnia for the first week after I was diagnosed and that made everything worse in the day because I was exhausted and it got hard to remain optimistic when I felt so bloody drained. If you're still not sleeping have a chat with your doctor and see if they can help or try using some herbal sleeping stuff if you can?
Fingers crossed for your scan, I hope all went/goes well!
Hi Gerry It's funny what you say about receptionists Ive found every medical personnel lovely but the reception staff have on occasion been complete aresholes. Maybe they resent their jobs or the general public. Makes me laugh. I just pretend to be really dumb and frustrate them further. Usually I am a very gracious person but I also have it in for the imaging staff They are so perfunctory that I barely talk to them. I'm talking MRIs, CATs and PETs. I've been known to pull out my own IV bungs when they say they'll come back and do it in 15 minutes and it's getting on to the half hour. Now they watch me like a Hawk. I should know better being a nurse but I also know when I'm not being treated properly. Jayne
If there is one thing that life has taught me it is to be as considerate as possible to receptionists and IT staff. Without those two on your side you are doomed. Think about it, receptionists have to deal with whatever walks in off the street - literally!
Hi all my name is Shirley and I was diagnosed today with stage 3 cervix cancer I don't know how this all works but I am one scared person. I haven't done so much crying as I have done today. I will be starting my chemo in the next week or two and just looking for people who are or have had the same .
I'be been reading the online forum posts which has helped me greatly since January but haven't posted till now.
I hope all of you have been getting the answers you seek and that there's been more clarity in the way forward.
At the moment , I'm clear as mud!
I opted for biopsy and treatment on 16th Jan as I was adviced it was high grade dykarosis, possibly CIN2/3. Two weeks later I was called in to discuss my results : squamous cells and stage 1b1. I was in the state of shock and disbelief of course! I've got two very young children, 3 and 1 years. I was reassured that within 2 weeks I would have scans and an MDT has been assigned. Strong suggestions of surgery.
I had my PET CT scan on 14/2 and was scheduled an MRI in the evening of 17/2. I was told by my nurse that the MDT team meets up on Fri so they will discuss my PET CT scan but not my MRI as it's an evening appointment. When I questioned it , I was reassured that they can pick up results along the way...I thought this was slightly odd but accepted thry knew better.
My clinic with my surgeon is Tues, 21/2.
Then it all starts to go wrong.
The MRI team disallowed my scan because I had LLETZ treatment only 4 and a half weeks ago and their rule is a clearance of 8 weeks for surgery/ operation. I can't help but think why did my MDT team sent me for a scan I couldn't do?
It's the weekend now and I feel frustrated and left down. There's no number to ring. I have wait till Monday.
I'm just wondering if anybody else has gone thru a similiar experience?
sorry to hear about your diagnosis. It's such a hard thing to hear and to understand what will happen.
First, take a deep breath as you will not be going anywhere just yet. Cc is very curable and the treatment is not as bad as you think it will be. There are many ladies who have been through the same diagnosis and they are doing very well.
I am assuming you have had all your scans such as an MRI, pet/ct, chest xray as you do already know your stage. The next thing will be to get your tattoo markers(3 little dots) one on your Belly just above your pubic bone the other 2 on your hips. That will be to line you up everyday when you go for your radiation. This doesn't hurt and neither will having the radiation. It doesn't take long(10 minutes a day) there will be some side effects but it mostly is just diarrhea. Everyone reacts differently but most have not too hard of a time. The chemo will be once a week for 5/6 weeks. You will not be as poorly as you see in the movies.
Its all very scared at first but after your treatment starts you will be happy your doing something to fight your cancer. Ask any questions you need help with and know you are not alone.
Try to stay strong but don't be afraid to ask your dr for help with coping. You are going to beat this!!!!!!
sorry you are going through this but please believe me when I say you will be ok!!
i believe the reason why they have rejected your scan is because they cannot be certain if your lymphnode are showing up due to your lletz. If they decide to let the surgury happen and it is discovered that the cancer is indeed in the nodes then you will have to go for chemorad anyways. Waiting a bit longer and re-doing the scan will give them a more accurate reading if it is showing lymph involvement. If nothing shows up in a scan in a week or two then you might go the surgury route. I'm sure you will get more info at your meeting on Tuesday. In the meantime just know you are under good care. They do know what they are doing. Better to wait and be sure that they are giving you the appropriate treatment instead of rushing surgury and then still have to have chemorad later.
Please do post and let us know what happens. We are all here for you!!
I went for my lletz treament on 2nd feb on the 18th i was rang up sayin can i go in on Monday 20th to see the dr he thn told me i jad cervical cancer n was sending me for an mri wich was on Thursday 23rd thn was told to return the monday wich i have d9ne i was told he was putting me.down for the radical Trachelectomy and i would hear within 2 weeks i am half way through my 2 week and becoming ever so nervous as i went bk to work and turned my phone off which wen i fijished i turned it back on to a voicemail on the 2nd of march saying WE ARE ? HOSPITAL WE HAVE TRIED TO GET IN TOUCH BUT COULDN'T WE WILL BE BACK IN TOUCH THERE IS NO NEED TO RING US.
We are now half way through 2 weeks and have not.heard a thing from that call and becoming more nervous by the day. Just dont know what to say or do u ir who to even contact.
