Hello Laura,

I know this is an old post but I could really do with someone to talk to, I've been for a coloscopy today and the doctor saw what she said was very suspicious with a high risk of it being cancer, she said there was a nasty infection there as well, she sat me down I was in total shock, she did the biopsy and said the cells just fell away, I need mri and ct to see if it has spread, I'm so frightened, the only symptoms I've had is a few spots of blood on the toilet roll, and a bit of pelvic pain , I'm frightened to death x

Hi Dawn, 

I understand that this is a frightening time but you are doing the right thing in taking care of your health. Like Minska said, cervical cancer is treatable. Take it one day, one appointment, and one treatment at a time, if it comes to that. You can do it! Let us know how you do.

Laura xx

Hi Minska,

Thank you for your lovely reply. Sorry for the delay in mine. I have had the colposcopy and it isn't good news, unfortunately. I was glad the specialist was so honest with me though, otherwise I'd be waiting for a couple of weeks for biopsy not knowing and for me that's worse.

I have an MRI booked within 2 weeks - so will know more then. Hoping it's contained and treatable. I didn't ask re' the MRI as she said it after the procedure and it was a pretty upsetting experience to say the least due to the severe pain already present in my pelvis. I had gas & air in the end which helped. She got as many cells as she could but not all, so said I will need to go back for more treatment. I'm assuming the MRI will be checking for other areas that will possibly be affected? Can they grade/stage it from the MRI? Any advice is much appreciated, I'm currently trying to make the best changes possible to my lifestyle so that I am as healthy as can be, including stopping smoking which I did yesterday.

I was a mess yesterday when I found out, but today I'm weirdly positive, not sure if im supposed to be?! I think im just waiting the MRI and accepting I cannot understand what is going on properly until then, so trying to carry on as normal.

Thanks for reading.

Sophie x

Hi Sophie

I’m sorry to hear you didn’t get better news. Can I just check-you have a cancer diagnosis? I’m just a little confused when you are talking about taking cells and maybe needing more treatment but are also having an MRI. The pelvic mri in my experience and that of everyone else I have ever talked to is to check the size and location of a cancer tumour identified by biopsy. A ct scan then checks for any spread of the cancer. The stage is then established on the factors identified from the scans. Stage relates to a cancer diagnosis, and grade relates to the level of abnormality in the tumour cells. Stage is 5he important number as it will determine what treatment can be carried out. xx

Hi Minska,

It was during my treatment (colposcopy) that I asked whether it was cancerous. At first she said it could be and that's why im there for treatment. A bit later on when she was investigating further, I pleaded with her to please be honest with me as I just needed to know one way or the other what I am dealing with and at this point she said - I am sorry but unfortunately, I am very concerned that it is cancer. Now I know this is not the result of a biopsy etc - but I am almost certain she would not have said that unless she was sure? My sister said she has broken code of conduct but that was likely the pressure I was applying on her to tell me what she had found.

The GPs have been a nightmare. They reported my ultrasound scan results as a Nabothian Cyst, the lady said. She said to her assistant during the procedure she couldn't believe it had been reported as a nabothian cyst. She was unable to stop the bleeding for a long time afterwards and explained cancerous cells increase the blood supply in the area where they are present & explained why she was having difficulty stopping the bleeding - again, if it was a possibility it wasnt cancer, would she say that to me? Regarding the MRI, I am awaiting a phone call for an appt which will be within 2 weeks. The biopsy I was told would take 2-3 weeks due to the other dreaded C word, as labs are analysing PCR tests too apparently.
 

Not sure if anything I've described sounds familiar or why it's MRI not CT being performed. I'm just confused & clueless at the moment. Will keep you updated once I've got scans results etc.

Reading posts on here is helpful. Thank you for your support x

HI Sophie

A nurse should absolutely not have said this to you. It is the role of the gynaecologist to tell you what is what, based on the results of a biopsy. So I am assuming from what you’re saying that you were in for a lletz treatment to remove abnormal cells? Ultrasound scans are not used as a diagnostic check for cervical cancer either. I assumed when you said the specialist had been honest with you that you were seeing a gynaecologist, not a nurse. She shouldn’t have said what she said about the bleeding either in my opinion. Cervical ectropion which is not cancer can cause lots of bleeding, for example. I’m shocked to be honest about you have been dealt with. 

A biopsy is the only thing that confirms cancer, not the opinion of a nurse. Even my gynaecologist didn’t mention cancer till my biopsy results came back, even though he could actually see the tumour! It is standard to have an mri and ct scan AFTER a cancer diagnosis, not before as they do not pick up anything which is too small..normally a tumour which measures millimetres rather than centimetres. The mri is done when the gynaecologist has confirmed there is a cancerous tumour and the ct is done to check for spread. 

The nurse has talked about you going back for more treatment? What did she mean by that do you know? Another lletz or a cone biopsy? They are only done for very early stage cancer which is microscopic in size. This would not be picked up on an mri, which is why it is not usual to have a scan for very early stage cancer. Anything else would be treated by a hysterectomy or, if a higher stage, chemo and radiotherapy. 

To be honest, I think this nurse has gone way beyond what she should have and said far more than she is qualified to say, no matter how much pressure you were applying. It is not her job to make any diagnosis on what she thinks something might be. Only the biopsy will be able to confirm things.

sorry for my delays in rep,ting-I’m currently away on holiday, but I do still check in when I can, so please keep me posted. xx 

Hi Minska,

Sorry, I don't mean to interrupt your precious away time! Please don't feel the need to respond whilst away. Just to update you, I had a Lletz yes. I got a phone call today and my MRI is tomorrow at 8:15am. Around an hour later I got another phone call for a colposcopy again next Thursday?! I'm assuming for another Lletz, though the secretary had no idea and said she was just following instruction to see if I can attend. She wasn't from that department apparently, staffing issues.

I am very reassured by your post, thank you Minska. I am also very confused why I have an MRI tomorrow when I've been told the biopsy will take 2-3 weeks for results. I also got a referral today off my GP asking me to make an appointment with Gynaecology, very confusing and little explanation or support.

I guess time will tell. I will keep you updated for sure. I am sorry to race ahead without an official diagnosis, but I am sure you can totally understand why - due to advice given, which i'm quite unhappy about now to put it mildly!

Have a lovely holiday.

X

Update from my last reply - 

I have had a diagnosis from biopsy and also MRI results. Invasive Carcinoma with Lymph node spread. Advised will likely be radical hysterectomy and radiotherapy (gynae consultant) awaiting MDT meeting on Thursday for more info re' stage and treatment plan.

in lots of pain, alongside worry. Not good news but wanted to update you as you were kind enough to support me when I was scared. The reason the colposcopy ordered the MRI results before the biopsy was done was because she was confident it was definitely cancer.

Now it's the waiting game. My 8 year old daughter is keeping me going (she knows very little at this stage) but her smile keeps me positive.

Sophie xxx

Hi Sophie

I’m so sorry to hear your diagnosis. I’m surprised they are saying radical hysterectomy when there is lymph node spread as that usually means surgery is not an option and it’s straight to chemo radiation as the lymph node spread means a higher staging unfortunately. But the MDT will decide what’s best. Surgery was not an option for me, and I didn’t have lymph node spread at my first diagnosis. The staging is based on internationally followed guidelines, so should be standard. 

Make sure they are managing your pain, I know how horrible that is. I was put on prescription co codamol and then tramadol. Don’t let them fob you off with paracetamol as it’s not enough in my experience. 

You are in that horrible waiting time of limbo waiting for your plan, but once the plan is decided you will feel more settled about the fact that things are moving forward. I know you will be scared and worried, we all are, but hopefully your treatment will be very effective and you can put this behind you. 

It must be very hard for you having a young daughter-my daughters were both adults when I was diagnosed but it was still difficult. I love the fact that your daughter’s smile keeps you positive. Having a positive mindset is really helpful, and I tried to keep as positive as I could all the way through. I’m sure it made a difference to how I coped. 

I hope you hear quickly from the MDT and can get going. Please keep us posted as you go if you can. I’m home from holiday tomorrow so life will go back to its usual routine and I will be around more, but I really appreciate you updating me and I’ll help you with anything I can. xxx

Hi again Dawn, 

Sorry for the delay...... not only has all this been going on, but i've relocated too so its all a bit crazy here! 

The not knowing is making me crazy. 

I had the MRI and chest x-ray (a week late as it had broken down!) and told yesterday that its clear!? soooo still no grade.

So now i'm confused. The biopsy says I have cancer. But nothing can be seen. |I| think then they are hoping it's super small. I'm being booked in for a loop under general, and they are going to try to just cut it out. 

Ive been told if I get clear margins, i'll likely still be offered a hysterectomy as it may come back. 

Once they test what they have taken out, apparently then they will decide if its going to also include lymph node removal....but again, when I asked...they said the nodes were clear. (however I have read that you cant see nodes properly in a scan anyway!?)

I'd now like to think that I can avoid radio/chemo. But....I have no idea. Everything is up in the air again, when I was expecting a definate answer. I hate this. 

If anyone can shed any light on this, I'd be very grateful!

How are you all getting on?

Hi Rachel

If your cancer cannot be seen on a scan it will be very small, and it may be possible to completely remove it via a lletz. If you get clear margins, why would they do a hysterectomy? It is major surgery which cannot remove the HPV virus which causes the abnormal cells and eventually the cancer. Abnormal cells can return, and having a hysterectomy is no guarantee that they won’t. Also the surgery can make it more difficult to detect any abnormalities in the future. I would consider very carefully whether a hysterectomy is the best way to go if you get clear margins from a lletz. 

Your cancer may be microscopic, hence not being picked up on scans, so would be highly likely to be something like stage 1a. That would not require chemo and radiotherapy-the lletz could take care of it. . 

Hi Sophie,

I am thinking of you at this difficult time and I'm sorry you are going through this. I found that taking 1 appointment, 1 treatment, 1 result at time, and not focusing on end results, what "might" be, helped me get through the days. Expect setbacks, they will likely happen (I had to postpone treatment because I got a cold and my blood counts were too low). I would become devasted when this happened, let myself cry and have fits, and then was able to move on the next day. Another great coping mechanism is this website and these wonderful people, like [@Minska]‍! You are ahead of the game in that respect, I didn't find this site until after my treatment was done. 

We are here for you! I'll keep you in my prayers.

Laura xx

Hi Sophie,

I am thinking of you at this difficult time and I'm sorry you are going through this. I found that taking 1 appointment, 1 treatment, 1 result at time, and not focusing on end results, what "might" be, helped me get through the days. Expect setbacks, they will likely happen (I had to postpone treatment because I got a cold and my blood counts were too low). I would become devasted when this happened, let myself cry and have fits, and then was able to move on the next day. Another great coping mechanism is this website and these wonderful people, like [@Minska]‍! You are ahead of the game in that respect, I didn't find this site until after my treatment was done. 

We are here for you! I'll keep you in my prayers.

Laura xx

Good morning everyone I've just had a phone call to go and see my consultant at 10 for biopsy results, I asked if I should take someone with me they said you can if you want there are some complex things to talk about, I'm terrified x

Hello Dawn

I just read your post and wanted to reply to say that I'm sending my best wishes for your appointment this morning. Take a pen and paper with you and then you, or whoever is with you, can write down any information that you're given as it's easy to forget things. 

You'll be in my thoughts this morning and I'll keep an eye out for your update. 

Jenn
Cancer Chat moderator 

Thank you so much x

Hi Dawnann

At least you will finally get your results after such a long wait for them, so you will at least know what will happen next. All the best for your appointment. It’s natural to be scared but you need to have answers, and you’ll have them today. xx

Thank you she said I can take someone with me if I want to so I'm hoping the news is not to bad, at my last appointment they said to definitely bring someone with me at the next appointment because it would be a staging and treatment plan, I am frightened minska xx

I didn’t take anyone in with me for my biopsy results because I never thought I was going to be told I had cancer-ever the optimist! The benefit of someone being with you is that there is a lot to take in at these appointments and the other person is a useful set of ears! You still don’t know what they’re going to say, or what the diagnosis will be, so try not to be too frightened, although I know that must be hard with your anxiety. Whatever the diagnosis, there will be a treatment plan to deal with it, and worrying today will not change the outcome of the biopsy, which is already decided. Deep breaths...and at least it’s a morning appointment so you don’t have all day to wait-always a silver lining! xx

Hi it's definitely cancer got ct scan this afternoon and mri on Thursday then it's going to a panel on the 12th, the only symptoms I have is a few spots of blood and a slight pelvic pain I'm eating and drinking and feel well, not of it makes sense I'm absolutely devastated xx

Hi Dawnann

I’m so sorry it’s cancer-it is just devastating when you hear those words. The ct scan and mri will give the team the rest of the information needed to plan your treatment, and hopefully that will start soon if you need more than only having surgery. It’s good you are not in much pain, and only having spotting. It sounds like they have probably caught it early since you don’t have lots of pain and bleeding. xx

Hello Dawn,

I am so sorry to hear of your devastating news regarding the biopsy results. I completely understand every single emotion and the fear you are experiencing right now. I was verbally 'diagnosed' on 22nd September when I had my colposcopy and an MRI was ordered on that day which I had 2 days later. I was still hopeful during this time that it was contained to the cervix, however, the biopsy results came in and it was not to be. I was advised by my GP who I had called regarding an entirely different matter - so no advance warning he just said the biopsy confirms it is cancer and it also looks to have spread (terrible way of breaking news!) I came off that call even more devastated and convinced that I'd already lost the battle against cancer. (I still hadn't even accepted the fact I had it!)

I shortly after received a call from the gynaecology who wanted to have a more in depth consult from what the doctor had told me and also do it face to face and offered me to bring someone along too. I took my sister who works in the medical field and would understand lots of terminology that wasn't familiar to me. I was convinced because they wanted to see me face to face and said I can bring support, that they were going to stage me as incurable and that would be it. I was beyond scared, I am a single parent to an 8 year old. I was being sick through fear and not sleeping. I went to the appointment and they explained to me that I do have a large tumour and there is some spread to my pelvic lymph nodes. They need to arrange a PETscan to map my lymphatic system and check for further spread. They are going to look at Chemoradiotherapy, not surgery as first suggested and they are looking at a curative treatment plan! Although this has been the most terrifying experience of my life, I felt after that appointment I had some control back. We know what it is, what we're dealing with and how we are treating it. I only had this appointment yesterday so I'm still extremely afraid but really trying to take the positives out of a horrendous situation. The gynae consultant said I am stage 2c as the lymph node involvement is not confirmed yet until PETscan but they are confident it has spread to one of pelvic ones due to size. There are nodes on the left and right which are inflamed but they are hoping those are reactive lymph nodes and not cancerous.

I'm sending you my story over the last 2 weeks from diagnosis to discussing treatment to try and help you accept that, yes, it is cancer but no, it does not mean you cannot be cancer free in the future. I have learned more about the advanced treatments they have in this last 2 weeks than I've ever known in my life. There are soooo many ways in which they can kill cancer and everyone is different depending on your type. I know it is so difficult but please put your faith in your oncologist. They are the best of the best for what you are going through and how to treat you. Take each hurdle as it comes and don't think further than that. Ask the doctor for pain relief should you need for pelvic, I'm now on morphine as mine is so severe. Also ask for sleeping pills if eligible as I found getting no sleep made my worry so much worse.

Please reach out if I can help in any way. I may not have the answers as I'm still so early on and have so many questions of my own too - but I can listen and support you and relate to you due to me being at the same stage of your journey.

Sophie xx

Hello Sophie

What an awful way to receive news from your GP! I have never heard of a Stage 2c, as this is not a stage in the standard FIGO guidelines which stage cervical cancer where there is only stage 2a and 2b. Lymphatic involvement is staged at 3c but I cannot even begin to tell you how many women I have seen with this stage who have been very successfully treated with chemorads and are now cancer free! Too many to mention! And I also know many ladies, including a good friend, who had large tumours at diagnosis who are cancer free still, years later, after successful treatment. 

The Pet scan will give the definitive answer for you, but treatment can honestly be very successful. My treatment for 2b was the same and very successful first time round. I was unlucky in that my cancer did recur, but I am not in the majority, and I had further very successful treatment last year. 

I’m so sorry you have such bad pain-I was never given morphine so had to cope with prescription tramadol eventually, but only after my recurrence. The chemoradiation can be tough-well, the radiation in particular- but the good thing is that it is intensive and over in a matter of weeks, usually with very good results. And the pain should go as the treatment progresses. 

If you have any questions about anything, please just ask. Having been through this cancer twice now, I have learned so much and can offer lots of practical tips for treatment side effects etc. 

The very best advice I could give is what you have said yourself- take things one step at a time and don’t look too far ahead. Don’t anticipate problems before they happen, because they might not! Some ladies sail through treatment with no nasty side effects and even manage to keep working. I am older so maybe it hit me harder, but the main thing is that it worked! And I would do it all again if I had to, although that won’t be something that happens for me as I have had all the radiation I can have now.

Please keep in touch and I will help with support for you and Dawn if I can in any way. I know how scary it all is, but am proof you can come through and it can all be ok, even with advanced cancer. xxx