Newly diagnosed and so far disapponted in consultants

Hi all! My journey so far has been a rather long one, so I apologize in advance for a long post.

In april I went to have a smear test privately as I had experienced a tiny bit of spotting in between my periods a couple of times and as I was told I'd have to wait 4 weeks for the results on NHS decided to pay for it. 4 days later got a call telling me that they found high grade dyskariosis suggesting CIN2 and to book a colposcopy. Colposcopy was done privately too as I was very anxious to do it soon. As I arrived for colposcopy the consultant I was seeing looked in my smear result paper and said not to worry and that I don't have cancer. As I had work commitments the following week he suggested putting it off for later but I insisted on colposcopy to be done that same day. Anyway, he did the colposcopy and took 3 punch biopsies which a week later showed CIN2. I was extremely relieved, and had LLetz booked for June 22nd with the same consultant but on NHS this time.

I found Lletz a breeze, it literally took just 2 minutes and was so fast that I had to ask the consultant if he took everything away..Didn't particularly bleed after and forgot all about it until 3 weeks later when I received the phone call to come in for an appointment. I knew they would tell me it was cancer right then.. So off I go for an appointment and I'm met by a different consultant who tells me indeed they found cancer tissue in LLetz sample and they think it's at least a stage 1b1 as it's 15 mm wide and 2.7 mm deep, which is good news because it's not so deep but the strange thing and the doctors can't understand that part is that it's adenocarcinoma which is on the surface of my cervix. Adenocarcinoma is normally always inside the glands and cervix so this is very strange. Anyway, tried to ask more questions and it turned out that the ectocervical (width) margin on one side was not clear, but endocervical (depth) is. The consultant didn't seem to be familiar with my case and had to read through the paper to give me somewhat clear answers.. Told that I'm to have pelvic MRI next Monday and I would be discussed at MDT meeting on Tuesday so they will be able to access MRI data. Was assigned a Macmillan nurse too. 

After the MRI I was very nervous as to if they find any spread it would be a completely different picture and so was anxiously waiting for the MDT meeting results as I was told I could call my old consultant after and he would let me know what's going on as he was back from holiday. So finally I gather the courage to call and the consultant is extremely rude on the phone, the only thing he said was that I have to have internal MRI. He told me nothing else! I tried to ask how the MDT meeting went and he lied that I was not discussed when I later found ouy that I indeed was and that they don't have the MRI results, also untrue as they did have them.. I couldn't believe how he could speak to me this way. Next morning I rang my GP and he had gone through the MRI results with me that didn't show any spread.. I can't believe my consultant wouldn't share this with me.

Anyway I had the internal MRI today, it's a new procedure done in only one hospital in London, it's designed to have a closer look at the cervix for early stage patients who wish to preserve their fertility. Not particularly pleasant but doable and the procedure is led by a proffessor, not a regular radiologist. Before we started I asked her if she could tell me what she saw, and she said she would give me an indication. After she kept asking if I had any surgery long time ago or coil fitted, which I didn't as she saw something that she didn't understand.. I asked if it could be another tumour and she said no, but when I asked if it was any tumour left after Lletz she said: "it's not a huge tumour".. She didn't want to talk more so that's all the info I got, which of course makes me think that it was something quite big that she saw and that terrifies me.. My appointment with oncology surgeon is on the 27th of August only and it feels like a long time to wait until then especially as this has been going on since April.. The good thing is that he's one of a few doctors performing robotic trachelectomy and this is the surgery I'm hoping for.. After today worried that I won't qualify for it though..

Tried calling macmillan nurse, but she is on holiday too, and I absolutely don't want to talk to my original consultant as I lost all trust in him..

So feeling lost and very worried, I really was positive before today, but now that's changed..

Thanks to this website and forum I got lots of positive information, and good luck to all the ladies out there!!

 

Hi I know the doctors can be very frustrating with how they choose to communicate these things. I went for pet scan results or what I thought was pet scan results for him to make no mention of it but over the past year what ive realised is that actually when they told tell you its because theres nothing to tell or because it doesnt change the plan. My professor is a man of few words but in a way ive grown to love that about him, I was diagnosed with stage 2b adenocarcinoma of the cervix and really all i needed to know was that he was planning on getting shot of it, the rest I can deal with :)

 

hope you get the treatment you are hoping for.

Charlene xx

dont tell you that should be xx

Thank you for your reply Charlene, you have reassured me somewhat, I guess I read too much into doctors comments/lack of them, but it would be nice if they saw that they are dealing with very anxious patients for whom this is a life changing situation. Of course I understand that they meet patients like us on a daily basis but still. 

Hope you are doing well and wishing you all the best!!

x

Hi Anna,

You're beginning to make me feel as though the fact that me and my doctors don't have a common language is a bonus! Wishing you all the very best through this difficult time.

(((((HUGS)))))

Be lucky :-)
Tivoli