Hi I’m new here just trying to process diagnosis

Hi Kitty12916c6c8 and welcome to our group.

Lots of us will be able to identify with the scary nature of getting a diagnosis, so I hope you’ll find it helpful to be here. You have mentioned “small incursion” so hopefully that will mean that things have been caught at a very early stage. 

I’ve not had the same kind of diagnosis myself, but I know it has been mentioned before in the group so I hope that your post will be read by someone who has gone through similar who will be able to share their experience with you. I’m going to tag a couple of the ladies who had components of SMILE in their pathology results after a hysterectomy Lorzy321 and May2 

These types of lesions are a rare finding, having this dual morphology, so it can be more difficult to find someone else who’s had the same. The language of cancer can be a bit difficult to get to grips with at first so if you don’t know what any of the acronyms are, please shout out and I can try and explain them to you. 

You are also welcome to call the support line (the number is in my signature) where you can speak to one of the nurses for help in explaining things, or you can ask a question here-

Ask A Nurse

I hope it’s not to long before the MDT meeting and you’ll find out your treatment plan soon. 

Sarah xx

Hi I hope you are doing well under the unfortunate circumstances, smile was found in my cells after I had my radical hysterectomy when everything they removed was sent for testing I originally was told it was just regular , due to it being rare and agressive I actually fall into an A Typical category so they were originally sending me for chemo /radio but now instead of that they are monitoring me very closely incase of reoccurrence, I have scans every 6months , see my suregon every 3/4 months and recently had a vagina vault colposcopy which thankfully I am still in the clear. I hope this helps u and questions please just msg me 

Hi thanks for replying, as you can probably tell from the stupid time of posting I couldn’t sleep last night. The consultant that I’ve been under in Colposcopy for the last few years who’s been monitoring my cell changes said it has been caught very early which is the good part of the news (if you can have good news with a cancer diagnosis!) I have currently got one very small information leaflet for a gynaecology oncology specialist nursing team and it says it’s for patients placed on a surgical pathway. The first MDT meeting was scheduled for this Monday just gone so hopeful I won’t have to wait long for more news but I think the uncertainty of the waiting is what I’m struggling with most. Kate xx

Do you have a CNS nurse? If so give them a call and they may be able to have more information given meeting was Monday just gone they may be able to help you with any concerns I know my nurse was brilliant 

Waiting is really a very difficult part of this process and can be quite hard to deal with. Knowing what’s going to happen, and being told the plan of action, should make things easier for you I hope.

I would imagine with very early cell changes, that you may just need to have a LLETZ treatment, where the cells are removed, which is more minor procedure, rather than a hysterectomy. But the MDT will be comprised of different medical professionals who will come to a collective decision on what’s best for you.

You should hear soon with another appointment to go through everything with you, so try not to let your thoughts run ahead just yet although I know that’s difficult and it’s natural to be anxious about it. Not everyone in your situation will need to have a hysterectomy, so yes, I believe that there can be good news with a cancer diagnosis, strange as that might sound! 

The earlier that cell changes are found, the less invasive procedures might be to get rid of them. 

Sarah xx

I’m not sure who will be my point of contact yet still waiting to be assigned a nurse. Would definitely be interested in your views on hysterectomy as it has been mentioned as a potential for my case. My first LLETZ was when they found the SMILE and also was unsuccessful in clearing all the abnormal cells. Due to the fact that I’ve had one unsuccessful treatment and my diagnosis was an unexpected birthday present (one that didn’t make me smile!) at 42 years with 2 children already I’m of the thinking that I’m a lot less attached emotionally to my and cervix than I am my 12 and 7 year old! Do you have any idea if they take into account age and if you already have children x

I am wondering if in my situation hysterectomy may be best though if I have that option x

So with my situation u had my hysterectomy on 2/1 this year, I was 35 at the time at two children aged 6 and 2 . There was a lot of questions whether we wanted more children or not but our priority end if the day was to remove the cancer regardless. It is emotional as a woman as the choice is taken away. MDT meeting will discuss what they feel is best for u and tell u from there.  I hope u hear soon the waiting is very difficult and I do agree once a plan is in place it’s easier to deal with it instead of what if 

While they never want to over treat, it might well be an option for you given your age and the fact you’ve already had children and yes, they will take all factors into account, especially when future fertility is not an issue. With a younger patient who hasn’t yet had children, they might focus on preserving fertility. But if a previous LLETZ was unsuccessful in clearing abnormal cells then I think that bolsters the argument for a hysterectomy. There’s a limit to the number of LLETZ procedures you can have and some ladies end up with a hysterectomy anyway.

I’ve had in effect a radical hysterectomy as a part of my much larger surgery, and I wasn’t in any way attached emotionally to my reproductive system-I just wanted the cancer gone and that’s what happened.

Sarah xx

I feel I want whatever is the safest option to give me the best possible chance to get rid of the cancer as quickly as possible for my children so yes for me fertility is not really a factor in my case. The fact that I’m still of a possible child bearing age is not important to me what’s most important is being there for the children I have. I know it would be major surgery in the short term but I’m trying to look at the bigger picture especially for my daughter who’s my eldest as she doesn’t have 2 parents. We lost her dad to a sudden heart attack when she was 19 months old. I also haven’t yet told her as I want to have a comprehensive treatment plan before we have that conversation. Also both my children are on the autistic spectrum so they may find it harder to deal with. I am just as worried for them as I am myself. Even the idea of the disruption any treatment will cause to routines could be problematic for them, which in turn increases my anxiety! Thank you both for talking to me it’s definitely helpful to have this forum to connect xx