Can anyone give their opinion please?

Hi everyone,

 

 

 

I’m new here, although I have been reading some of the posts over the last couple of days.

 

 

 

So my story is a bit long… When I was a teenager I experienced extremely heavy periods, most of the time they lasted for 5-7 days and I bled heavily. This was accompanied by severe cramps, pain and bowel problems. The doctors suspected endometriosis and I was prescribed the nuvaring (contraceptive vaginal ring) and suggested to skip my period to control symptoms. I never had a laparoscopy because according to many doctors this was not the procedure unless someone wants to become pregnant or has extreme symptoms (which in my case also means that I never received the diagnosis 100%, but they highly suspected it ever since). So I have been using the ring for many years now and have been skipping my periods (I think the last one must have been at least 3 years ago), which helped me to have a normal life and achieve many things that I otherwise couldn’t. Over the years I have had abdominal pain and bowel problems, and the doctors also suspect I have irritable bowel syndrome. I have had pains, cramps, and over the last 2-3 years I have felt something ‘hard’ in my left abdomen, and saw my GP for this but it was always assumed this were my bowels. I also experienced vaginal discharge over the last couple of years, which was mostly white or yellow/green, quite much, sticky and a bit smelly but not overly so. I went to see the GP for these symptoms a couple of times, but after having a look into my vagina he said that it was ‘just a bit red’ and it might be an infection, so he gave me some pills for this and it became a bit less for a while (or at least I think so, I can’t remember exactly), but then it came back again. Although I came back a couple of times for these symptoms, it was never thought that I needed to see a gynaecologist. Apart from these symptoms, I have been having a lot of back pains (but I had problems with my back for a long time, even as a child) and with my lungs (coughing a lot), but I received medications for asthma and it seems as if this helps (although my lungs still hurt a bit sometimes when I breathe). This was all abroad, and when I came to the UK for my studies last year I received an invitation for a cervical smear. The smear itself was quite painful, and I started bleeding quite a bit during and after it. The nurse said it didn’t look good, as my cervix looked ‘a bit bumpy’. I received a letter soon after (I think within a week or so) stating that I had abnormal cells and I needed an urgent hospital referral. When I spoke to my GP they said I had severe dyskaryosis. I was sent for a colposcopy the next week and when the consultant discussed things with me before the colposcopy he explained that the smear test indicated severe dyskaryosis or cancerous cells. He then did the colposcopy, and I saw everything on the screen. Upon insertion of the speculum I started bleeding a bit, and my cervix looked very red and a bit bumpy. When he put the acetic acid in there everything became white and there was one patch that was bright red and white, which he removed with LOOP. He said he was concerned about this part and this was sent for a biopsy. It was approximately 15 mm wide. After the colposcopy we discussed this further and he said that it could be CIN III or cancer. When I asked him whether he could say anything more, he said he couldn’t until the results of the biopsy are in, and that he couldn’t be as reassuring as he normally is. When I asked him about the possibility of cancer and the ‘highest’ possible stage, he said he could not say anything about this. He said that he will fast track my biopsy results so I will now next week (which is this week), after a meeting where they will discuss my results. This should be tomorrow.

 

 

 

Now, after reading some of the posts and information, I am concerned about a couple of things. Does the fact that my results are being discussed in a meeting, that they are being fast tracked and that he was concerned about this specific part mean that it is cancerous? If so, how big is the chance that the cancer has spread? He mentioned something about a possibility of MRI scans depending on the biopsy, and also that laser treatment might be possible. I have to say that I was in shock when he was saying all these things so I did not ask any specific questions or remember everything he mentioned.

 

 

 

I am so scared at this moment, especially since I am reading here that almost everyone’s biopsy results come back after at least 2 weeks, and no one mentioned anything about doctors that were concerned when they saw things etc. Also, the meeting he was talking about – I am not sure whether this is bad news?

 

 

 

Tomorrow they will send me an e-mail (that’s what he said) after the meeting and I am totally paralyzed. I had my colposcopy last Thursday and since then I am unable to focus on anything really…

 

 

 

Has anyone been in such a situation? Could anyone perhaps say anything about the way this is handled? Or possible outcomes? Could it be severe/advanced CC?

 

 

 

Lots of love,

 

Marie-Louise

 

 

 

 

 

PS. Perhaps important to mention – I went to the GP last October/November because I was feeling very tired lately. They did a blood test, and everything came out fine (liver function, kidney function, iron levels, vitamin levels, calcium levels, glucose levels, etc.) except of my white blood cell count, which was a bit elevated and the GP asked whether I recently had a cold or so (I hadn’t) – I have another appointment booked for this Wednesday to test blood and repeat the white blood cell count…

 

Hi Marie-Louise :-)

Welcome to the forum. Are you French? But living in Britain now? It's always a bit scarier I think when you are being treated in a country away from all your family and friends.

So, to answer your questions, the reason that your results are being fast-tracked and that you are being discussed in an MDT meeting is because your cells could be cancer, they might not be, they might be severe dyskariosis, but either way they need to be treated and so therefore your treatment needs to be discussed.

I cannot say for certain that a visible area 15mm across will not have spread further, You will have to await the results to know more about that. All I can do is try to put it in some kind of perspective for you by comparing it to my own situation.

When the doctor first looked inside me with her speculum her face dropped immediately and she got on the phone to call other doctors. I was admitted to hospital on the spot. As far as I can work out my cancer was 75mm across. And even that hadn't spread any further! Because it was so big I had to have a hysterectomy but they may be able to deal with yours with just a LLETZ. I'm not sure, but please try not to worry too much. You will have your results very soon and then you will know what exactly you are dealing with.

Your doctor sounds lovely!

Be lucky

Tivoli

Good Luck, Marie-Louise.

Tivoli, you are inspiring.

Thank you both for your kind words!

 

Unfortunately, the biopsy showed it is cancer - and it didn't stop at the edges so they don't know how far it extends - they will need to take out more in order to know for sure.

They said that I will receive a letter for a follow up appointment, and we will also need to make MRI scans.

 

I am extremely scared now - as I do have some chest pains (it feels like my lungs are hurting a little) but I thought that may be because of my asthma/cold weather)... I also sometimes have a dull pain in my left abdomen, just under my lowest rib, as if some 'organ' is pushing towards it. I told this to the doctor a couple of months ago (it is not constant, only sometimes) and he thought it is probably my bowels as they think I have IBS...

I know that they can't know for sure whether it has spread and where until they do further tests, but how likely is it that this could have hapened? They performed the LLETZ on a part that was 15mm and the doctor mentioned that he was concerned about this part. Wouldn't this area be bigger in a more advanced stage? Would I have other symptoms? My recent blood tests were all normal, except of a slightly elevated white cell blood count... is this good news or would it still be possible that it has spread?

I won't know for a couple of weeks probably, but until then it would be wonderful if there would be at least things that would suggest that it's not advanced yet... the doctor said that it's 'at least stage 1' and that for someone of my age an advanced stage is unlikely, but they can't exclude the possibility until further testing has been done...

 

Anyone had similar experiences?

Marie-Lousie

 

Hi Marie-Louise

So sorry to hear of your diagnosis. Hopefully you will get your appointment dates really soon so that you can know what you are dealing with and have a treatment plan.

Do you have family in the UK? I hope you have people around to support you over the next few weeks whilst you are waiting to find out. There are loads of really inspiring ladies on here who have been through and conquered cancer and you can too.

Big Hugs

Suzy

x

Hi Suzy,

 

I don't have family in the UK but live with my partner here and have lots of support from friends which is really nice. It's just the waiting and the possible signs of it being worse than 'early stage' that makes me feel really anxious, stressed and sad all the time... Also, what if it has spread? What are the chances of overcoming it? When reading through this forum it seems as if most people have more early stages, what are the chances for more advanced stages?

Thank you all, you are all lovely!
ML