Feeling numb

I found out yesterday. Stage 1b1. Feeling ........ Numb.

Hi Tes, sorry you got bad news you must be reeling. I've read some of your other posts - are they hoping that the lletz might remove it all? That's the impression I got when you said that they were doing an mri first, to see if that was possible. It's often quiet here at weekends but I hope someone who can be more helpful will be along soon.

Tes, gutted to hear you news sending you the biggest virtual hug possible xxxx

Hi girls,

 
Thanks for replying. Unfortunately the lletz won't remove it. I will have to have either a trachalectomy (think I've spelt that wrong) or a hysterectomy.  The whole experience was awful. I couldn't bring anyone to the appointment with me as they didn't have a 'waiting area'. So the consultant told me I had cancer, I then had to get ready for theatre, then wait another hour because they were running late. I felt so alone. And there was loads of bloody room in the waiting area when I got there!  The lletz was just so they can take the biopsy to confirm which type of cancer it is. The MRI showed it was there and they said to be honest they thought so after the colposcopy.  The consultant said that the trach surgery is only done in certain hospitals so they can't guarantee I can have that or if I can it won't be at my local hospital.  I want that op to preserve my fertility as I do not have any children. They also said they dont do keyhole for a hysterectomy!?  Maybe I got that bit wrong, surely that cant be right?  I  have private medical insurance but they are really reluctant for me to switch?! I'm not sure if this is because It will affect their targets? I have a meeting again in 2 weeks to discuss treatment and I'm going to insist they move me to private. I have the insurance through work so may as well use it. I'm thinking this may also help someone take my place on the NHS when I don't need it. I just didn't have a good experience from the beginning of the appointment to the end. The first nurse who filled in the forms and weighed and measured me converted my height and weight to 4ft 11 and 13 stone. I'm actually 5ft 4 and 9.5 stone. I laughed first, but really they should be able to get this right. I hope they were not using this to calculate how much anaesthetic to give me! The nurse who has been allocated as my contact nurse came to see me on the recovery ward said 'sorry we haven't had a chance to talk about your feelings yet. I'm off home now, here's my card, I'll speak with you on Monday'. Right, ok.........  That combined with having to be alone at the appointment just made the whole thing rubbish. 
 
I have had a few days for it to sink in now. I know I just have to get on with it and beat this thing. This site has been great. There is so much information. I think the best thing is to be informed so you can ask the right questions which will enable you to to be in control of what might happen next as regards to treatment etc.
 
Tess xxx 

Hi Tess,

I just wanted to say firstly I’m so sorry you’ve had this diagnosis, It’s such a huge thing to take on and to have to wait alone afterwards…I really feel for you.

Numbness is a totally normal reaction to the shcok, as are a whole range of emotions on the rollercoaster from diagnosis to treatment. If you want to PM me please do but for the meantime I’m sending you a massive hug.

I was a 1B1 too and had the hyst done via open incision as they don’t do keyhole surgery at my NHS Trust (Sheffield). I asked why and they said its just a preference here and surgeons have tried keyhole but found they had better results (in terms of no post op complications) that way. I think with NHS Choices you can choose to have surgery anywhere though so if you really want it done via keyhole you could get transferred.

You seem very proactive in asking questions which is fantastic :slight_smile: I hope your nurse specialist is able to spend some more time with you soon. I found mine invaluable in the run up to the op and even now.

I have private too, but then realised it would be the same consultant performing the operation but just in a much smaller hospital. I think the only difference turned out to be a carpeted room!

I hope you’re managing to enjoy the sunshine this weekend, please do ask if you need any info. The moment you know your treatment plan you’ll be able to focus on it and get through it and you’ll be on the other side before you know it.

Take care xx

Hi Tess

Sorry that you've had such a rubbish experience at what is already a very difficult time, I completely understand why this makes you want to go elsewhere. I decided not to use my PMI because I was happy where I was, but also you might want to check whether your policy covers the follow up appointments you will have to have for years after treatment - I think this often isn't covered and it is not always easy to get back in to the NHS system if you don't want to pay for check ups. It might also be worth checking whether you would get an equivalent to your specialist nurse, as although it may not seem like it now they are a useful resource.

I am not sure about this but I think that if you want to explore the option of having a trachelectomy, you have the right to be referred to a specialist. It doesn't seem right to me that they might discount it without giving you the opportunity to talk to someone who specialises in the surgery. Perhaps your nurse could find out for you where the nearest hospital is that performs the surgery? 

I hope your nurse is able to give you some helpful assistance and reassurance on Monday, and you have some good support around you.

Best wishes

Lou xxx

   

Hi, 

First of all, I want to echo what the other ladies have said and say how sorry I am that you are in the position you're in - I completely understand the feeling of numbness you describe and that's entirely normal; it takes a while for news this big to sink in. 

Secondly, I want to say sorry that you've been treated in the way that you have. Several things about your story worry me and it seems that National Protocol for cancer diagnosis hasn't been/isn't being properly followed there. They are not supposed to tell you that you've got cancer without you having someone there with you. When they telephoned you to ask you to go in to see them, they should have asked you to take your partner or someone else close to you with you.

Also, whether or not you receive a trachelectomy isn't really to do with which hospital you're at - it is true that it is a relatively recent operation and not every gynaecological surgeon is trained in it, but in the case of a cancer diagnosis, it's easy for them to arrange for an oncologist who can do it to come in - these days, surgeons tend to work areas rather than individual hospitals. More importantly, it depends on your clinical situation, such as which kind of tumour you have, where exactly it is located, the stage you're at etc etc.. They should be doing everything they possibly can to preserve your fertility and being unable to should be a last resort/too much of a risk situation, not just because they don't feel like it or because it's too much effort.

Further, when they said to you that they do not do keyhole surgery for a hysterectomy, did they say it as if this was just in your case or as if it was a hospital policy? I just ask because this still happens far more than it should. The fact of the matter is that they should always try to do a radical hysterectomy with a laparoscopy (which is what keyhole surgery is) and only in exceptional circumstances should they be doing an open procedure. I don't have the figures to hand at the moment, but there is still a big difference between how many hysterectomies should be done via an open procedure and how many are - it should be a tiny percentage as there is no reason in the vast majority of cases why it can't be done laparoscopically, but it is actually up into double figures (I will find the exact figures when I get a mo!). So, if they say they want to do your hysterectomy via an open procedure, you need to get a damn good clinical reason from them why this is. If they can't give it, then you should insist that you have a laparoscopy. 

As has been mentioned above, if you go private it is possible that you'll end up with the same surgeon, but it's also possible that you won't and you will have more choice about who operates on you. It's definitely good advice to check out if the insurance covers you for later check-ups, unforeseen problems etc etc.. In my case, I didn't have private health care, and I know that if I had done, I definitely would have ended up with the same surgeon. However, I was very lucky that on the NHS I happened to get one of the best gynae-oncology surgeons in Europe doing my operation, so in that sense, I would not have got better surgery if I'd gone private. However, the general care afterwards would have been better and I know it would have taken a lot of the additional stress out of an already stressful situation, so I would have used my insurance if I'd had it. Definitely find out very concretely though exactly what's covered first, before you make the decision. 

In the first instance I would ring your cancer nurse and ask her who your oncologist is. This is different from your consultant. Your consultant is most likely to be a gynaecologist who specialises in gynae-oncology - this does not make him an oncologist though; he's still a gynaecologist - your oncologist will be a different person and has to be present while the operation is taking place (in most circumstances, it is the oncologist who will perform the op). Can I ask you as well, I assume they have said radical hysterectomy, rather than just hysterectomy? If you're not sure, I would just check that with your cancer nurse as well, as you should be having a radical hysterectomy. It's possible they will give this (the fact that it's 'radical') as the reason they want to do an open procedure - don't be fooled though, it's nonsense. Also, have they said anything about removing lymph nodes?

Here are some things that might help you:

* National Protocol says that you need to receive treatment within 49 days of diagnosis. Find in your diary the date you were told you've got cancer, count 49 days (including weekends) on from that. This date is the last date by which you should have had your operation, and it would usually be well within that. 

* As explained above, find out who your oncologist is. Then research them. You need to know the credentials of the person who is going to be doing this kind of surgery on you. National Protocol says your oncologist HAS to be present when the operation is taking place and, as I've said, it would normally be them carrying out the operation. Make sure they tell you with certainty that this is what will happen.

* Find out which kind of tumour you have and, if they say you can't have a trachelectomy because they just don't do that in that hospital, insist on seeing someone who is qualified to carry out the operation, so that they can assess whether or not your qualify for it on a clinical basis, rather than a postcode basis. 

* Go to your GP and explain your concerns about how you're being treated. It's also worth getting in touch with the patient liason service connected to your hospital and have a look at where the Cancer Advice Centre is in your area. They are often situated in the Oncology department of your hospital and are run by Macmillan, so are independent from the hospital and offer great advice and will know exactly what you're entitled to and who to shout at! 

* You can ask to change your cancer nurse if you don't like the one you've been allocated. I have to say, the way she dealt with you sounds pretty awful. Some of them are really knowledgeable and helpful people, but there's no question that some of them are complete idiots. I had two: one of them was an intelligent woman who was helpful and I felt she'd fight my corner for me. However, I often wondered how the other one managed to put her uniform on the right way round every morning - really more trouble than she was worth. 

I don't want to overwhelm you at an already difficult time, and I'm aware that all of the above might seem like I'm bombarding you with things, but I really want you to get the right treatment and to be treated in the way you're entitled to be. If you know what you're entitled to and you deal with the hospital in a firm yet polite way that sends them the message you're armed with information and are not afraid to kick up a fuss, they are more likely to do what they should be doing. It's absolutely awful that you should have to do that at all, let alone at a time like this - they should treat you properly in the first place and make you feel secure and looked after by them at such a difficult time - but unfortunately these days sometimes it's those who shout the loudest who get what they're entitled to. 

Sending you lots of love. Keep us updated. 

Annabel. x

Hope you havegot things sorted now xxx

Keep strong xx

 

Hi Ladies,

 

Thanks so much for all the advice it has been really helpful. I have my meeting at the NHS hospital on Thursday where they will have all of my results and will discuss my treatment plan. I have already looked into my Insurance details and am very lucky that the cancer care covers everything. My NHS consultant has said that she doesn't work in private. With my insurance I can pick my doctor and as long as they are on the approved insurance list I can choose who I like. So, I have done lots of research and found a doctor who specialises in gynaecological cancer care and is an expert in laparoscopic surgery. I have a meeting with him on the 18th. By then I should have all my results etc from my local hospital so they can be passed on to him. I'm hoping that he can do the trach surgery but also know from reading up that this isn't always possible, so realise that I might have to have a radical hyst. I am a little nervous about the meeting this week as the NHS consultant was very opposed to me switching to private. But I will be firm because I've made my mind up.

 

Annabel, you are a wealth of information and thanks so much for replying. With regards to the open surgery, the consultant said that 'she' does not do the operation via keyhole, not that the hospital does not offer this specifically. So, this has also been one of the deciding factors to using my insurance.

 

I will look into the oncologist and the consultant as I'm not sure at the moment who is who and as I'm switching anyway this will all change. Though the consultant did my lletz under GA.

 

Another point about the Llletz someone might be able to help me with. I'm a bit confused as to what actually happened at the LLetz. I'm not sure if they just took a biopsy or removed the area usually taken by a lletz (and is there a difference). If they can’t take anything away as I'm having surgery anyway I'm guessing they just took a biopsy. Also, on my hospital letter that they gave me when I got discharged it said they did a 'knife biopsy as the diathermy machine was not working'?! Nobody explained this to me. So I think they have just taken a biopsy with a knife, not removed anything else and the machine they were going to use was not working and the 'knife' is just another instrument they used? I think all this should be explained at the time as I like to know the facts but maybe they are waiting until I go back this week.

 

Thanks again to everyone that has replied. I really appreciate it as I know you are all going through your own journeys. I'm sure I will have lots more questions!!

 

Tess xxxx

 

 

Hi Tess

Sorry you have to go through all this but welcome to a fab site where all us ladies feel sane!

Just thought i would add to all the sound advice you have already received with my experience which may help you.

I was to be treated nhs but because of a misdiagnosis at my local hospital ended up with long delay of 7 weeks in correct treatment and late referral to correct oncology centre. This delay was awful and very stressful. My consultant did private laproscopic ops and i chose this option  as the waiting list on nhs was delaying my treatment by  another 5 weeks. Nursing  staff did try to tell me not to because i was entitled to op on nhs but the stress and delay  was just too bad:((

My concern was how i would transfer back to nhs for follow ups etc after op. I have to say everything has been really easy and i transferred back to same consultants nhs clinic without any problems. Staff in both hospitals have been great and i do not believe my care could have been any better :)

Good luck whichever way you end up having your op and wishing you a speedy recovery. XX

Kath xx

 

 

Hi Tes, 

There are several different type of biopsies; it sounds like even though the LLETZ/loop machine wasn't working, they essentially still did the same kind of biopsy, just with a knife.

When they do a LLETZ, they remove the transformation zone, which is an area of the cervix where two different types of cells (skin and glandular) meet. We have two transformation zones in our bodies - in the cervix and in the throat. These are relative areas of weakness for cell abnormalities (although overwhelmingly more likely in the cervix than the throat) and so is where any abnormality is most likely to develop - and so in something like cervical cancer, will be the place of origin, regardless of where it spreads to if it gets the opportunity, because it is the place where the abnormality happened first. So, for people who have an abnormal smear but not cervical cancer, a LLETZ is a great (and pretty innovative) solution because it removes the area that is the source of 'weakness', making it unlikely that any abnormalities will recur. In any case of a LLETZ, whether cancer is suspected or not, this area is sent off for analysis - that's simply what they have to do for best practice - and so, this becomes a biopsy. In most cases of cervical cancer, the biopsy will simply be what was removed by the LLETZ (the transformation zone). In your case, it sounds like the LLETZ machine wasn't working and so the consultant used a knife instead. In this case he/she has probably removed exactly the same thing, just with a different instrument - I'd be surprised if they haven't done that. 

If it helps as well, we tend to think of these areas as big chunks of flesh, but bear in mind that your cervix is a small area in its entirity, so even though it doesn't feel like a small area is being removed at the time, actually what is removed in a LLETZ or in the knife procedure that you've had is very small, but it needs to have been in that specific area for them to be able to create an adequate biopsy that would tell them whether or not you have clear margins. 

I hope this helps. 

Annabel. x

Hi ladies,

 
Thanks again for your replies. So , I have stage 1b1 grade 2 adenocarcinoma type tumour. As this tumour is the rarer one do you know if I'm more likely to have to need radio and chemo after surgery? I am meeting my new consultant tomorrow so will ask him then. But just wondered if the type f tumour makes any difference to the treatment you are likely to need? Tess xx 

 

Hi Tess

I’m sorry I can’t answer your latest question - my cancer hasn’t even been staged so I have no idea about any of that.

I just wanted to wish you luck at your appointment today… And hope you finally get some answers… I met my consultant yesterday and finally got a treatment plan after a month of waiting!

All the best xxxx

Hi Em,

Yay, I'm glad you are getting to have a trach especially as you are so young. I think it is also good to get a date for your treatment, you will be on the countdown for getting better!   I'm hoping for a trach too but as my tumour is  adenocarcinoma it might be better to have a rad hyst to make sure everything has been removed so there is less chance of it coming back.  So the tpe of surgery is to be confirmed.  Also, I'm 41 so need to weigh up the pros and cons.  The doctor was really nice.  He still needs to look at my slides and MRI scan.  I'm also having a CT scan and blood tests tomorrow, then next Wednesday we can confirm the surgery I'm having and I'm booked in for that on the 29th June.  It's all moving so fast now. 

It's all a bit scary but I'm hoping 2 months from now I will be fine.  Well, that's the plan.  Just hope the lymph nodes are ok.  How are you feeling now you have your surgery date? xx

 

 

I’m ok. Abit nervous as I’ve never had any kind of surgery or been in hospital! My surgery date is 3 weeks today… It’s the waiting that’s killing me! But hopefully in a couple of months I’ll be sorted!! … It’s going to be a long couple of months after!
I just find it so weird as I don’t feel ill but I’m having to have all this done!
Good luck with it all today! You’re one step ahead of me so keep me informed so I know what’s coming!

Fingers crossed for our lymph nodes too!! xxx