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 all, I've been experiencing bleeding after sex for the past few weeks since my last period. I was on holiday during my last period and went swimming so I used a tampon for the first time in my life. I thought the bleeding could be related to that at first but over the past week I've been getting a dull ache down there and headaches and since yesterday my legs have been aching non stop. No pelvic pain though. I made the stupid mistake of googling my symptoms and now I'm convinced it's cancer. 
I had my smear test last week, haven't had results back yet. I did tell the nurse about the bleeding and she told me i needed to get it looked at. I've booked in to see the gynaecologist tomorrow. Im so scared. Don't know what to expect at my appointment.

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 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. .