Looking for advice, diagnosed today.

Oh windy ive just replied to your other comment then saw this after! so sorry you got that phone call today, I’m gutted for you, I can imagine you are beside yourself with alot of worry and questions. I’m sorry I can’t help with anything on that front, as you know my journey. Just know I’m here for you, as I’m sure alot of others will be. It’s good to get it all out to strangers sometimes. kind of a release or therapy. 
my children are of similar ages (6,13 & 15) and I would be open and honest with them once the time is right and  you have more answers, understanding and have processed it yourself. Your older ones will likely take it on board more so than your youngest I’d imagine, you know them best tho. They will likely ask questions so be prepared for that. I personally think as they grow and understand more, they will appreciate and remember your honesty with them. This is just my personal opinion and you of course will do what’s best for you.

your in my thoughts and I pray you make a full recovery from this, take care xx

Thank you so much! You’re completely right, I suppose it is like a therapy.

I was thinking to myself earlier, that things like this need to be spoken about more. I’d never really even thought of cervical cancer before, I don’t want to feel scared talking about it like it’s a taboo subject and I don’t want the kids to grow up thinking it should be whispered about or to suffer in silence. 

But I think they would appreciate it. Like you said when the times right and I know more and able to answer the questions. 

Thank you so much again Joann. If you ever need to chat I’ll always be checking in here xx

Hi WindyThistle 

I’m so glad to see you make your post here with us, though I’m sad you have had a cancer diagnosis confirmed. Glad because you’ll have support and friendship here. 

An extra welcome to you as a fellow Scot-I was born and brought up in the highlands, though I live in England now. I was used to the distances involved in getting from where I lived to “town” although it sounds as if it wasn’t as far away as you are. 

Thank you so much for completing your profile information-it’s so helpful for us all. Please try not to beat yourself up for not having a smear test-you have enough going on without adding a guilt trip into mix. Even ladies who are up to date with regular screening tests can develop cervical cancer-remember the smear is a test for the hpv virus and not a diagnostic test for cervical cancer. Try not to focus on what you can’t change-you have a diagnosis, so try to make your focus about concentrating on getting through this. 

I see you’re having your mri today-if you haven’t had one before, they are very noisy and I wasn’t prepared for that! I used an eye mask which I found helpful, and tried to distract myself my by thinking nice thoughts! I’ve had a lot of mri scans over the years and there’s always been a wait for the results for me, so you may not hear back quickly.

Once all the results are known, your case is normally discussed at an MDT meeting (multi disciplinary team) and usually these happen once a week in most hospitals. This is where the medics involved in your care meet to discuss the next steps in your treatment plan-pathologist, radiologist, oncologist, specialist nurse etc. Each person’s plan is unique to them and their situation, although there will be broad similarities depending on the stage of the cancer. 

I appreciate that you’re currently experiencing a lot of pain, and so you’re worried about advanced or late cancer, but that may not necessarily be the case for you. My original diagnosis was stage 2b adenocarcinoma, which meant it was classed as “locally advanced” meaning it had spread slightly beyond the tissues of the cervix. But it hadn’t spread anywhere else and was still treated with curative intent. Treatment for me was concurrent radiotherapy and chemotherapy, with the radiotherapy being daily on week days and the chemo (a low dose to enhance the radiotherapy treatment) being weekly. I had to do 32 radiotherapy treatments, but only managed 4 out of 5 chemo treatments.

My children were adults when I was diagnosed, but it was still hard to tell them. I waited until I knew what my treatment plan would be so that I could answer any of their questions, but I had to tell them over the phone which was very difficult. I didn’t cry, but they both did-I focused on being positive about what was going to happen and reassuring them. It’s very different of course with younger children, but you may find some of these resources helpful. You will hopefully also find your nurse a good support with this. 

Talking to Children and Teenagers

Talking to children podcast

Talking to Children About Cancer Booklet

It’s so difficult getting a cancer diagnosis and it’s a lot for you to process. It occupied my mind constantly at first, but I found things became easier once I knew what I was facing and had a plan I could focus on. I did my best to keep as positive as I could (hard when you’re in a lot of pain, I know) and started every day by telling myself I would get better. Your team will devise the best plan possible for you and although there may be tough times ahead, try to focus on the light at the end of the tunnel.

We are here for you, to give support and share our experiences, but remember too that you can phone the support line (number in my signature)-they will listen, and there are trained nurses who can give medical advice. You can cry, release your feelings and know there is a sympathetic person listening to you. It can give you an extra outlet to say how you’re feeling, and it can really help. 

Keep us posted and let us know how you’re getting on when you can. Take care, and look after yourself.

Sarah xx

Hi Joann21 

I know you’re still waiting for an update yourself, but you may find some of my reply to Windy helpful IF you get a cancer diagnosis.

We’re here for you in any case if you need us, and the support line is available for you to use even without a diagnosis, so please feel free to call if you need to. 

Sarah xx

Thank you Sarah, I will have a read through the links you sent on my way to the MRI later. 

The advice you have given is invaluable! I’ll let you know later how I got on with the MRI. Hope you have a good day x

The mri takes quite a long time in my experience-for me it was usually about 50 minutes. I also had a chest/thorax/abdomen scan immediately following my pelvic mri which I wasn’t expecting and which made things longer, but it was all routine. I just wish I had been made aware in advance, as I was stressed enough at the time!

Hope it goes smoothly for you today. 

Sarah xx

Hi Windy

Im sorry to hear of your diagnosis and fear and uncertainty you are experiencing, Sarah has given such a lovely initial response but i thought i could help in sharing a little with you about some reflections on how i dealt with the parenting aspect of a cancer diagnosis.

My daughter was 14 when i was diagnosed, i waited until i was armed with all the facts (stage, treatment plan etc) before telling her, as i wanted to try and be equipped to answer any questions she may have had. One thing i was anticipating was she would turn to dr google (which she did), and of course immediately associate cancer with dying so it helped that i was able to provide some reassurance, the reassurance i had been given by my consultant as to next steps and the plan for treat to cure

I was also able to reassure her that she had been given the jab to protect her from this type of cancer in the future, and the anticipated eradication of cervical cancer for future generations which felt really powerful

As a single mum my daughter was very much in the trenches with me during treatment and some of the more difficult aspects of that were hard to protect her from. I was immuno-compromised for a while and she would get on public transport and spend all day at school (covid was also doing the rounds back then) and that had an impact on our relationship as i needed to avoid the hugs and cuddles we used to enjoy and i was also much more anxious, stressed and upset than i would usually be - i think we both found it helpful to name what we were feeling

Not sure of the lasting impact on her, cancer despite my no evidence of disease status is still part of our experience due to the intensity of surveillance scans/checks etc (every 3 months at the moment) and i am aware that she has had the worry (has the worry) of her sole care giver having a serious illness.

I think you will know your children better than anyone, and id trust your instincts around how when and how much to share with them 

I know its been said before but from my experience you are in the worst period now with the waiting for staging and a plan, you've got this and once treatment starts things will go relatively quickly  xx big hugs

Hello mochimoo 

Thank you for taking the time to give me some advice on how you dealt with explaining. 

It’s a really position to be in isn’t it. It sounds like you and your daughter both rode that fight together. Strong. ️ 

I’ve had talks with dad today and I’m going to read over some links I’ve been sent by Sarah and Maggie’s and wait until I know all I can know - stage, plan, like has been suggested, when their questions come I can at least give some answers and reassurance. 

I just need to not break down whilst I do it. I haven’t cried properly since being told, but cried every day whilst I waited to find out.

Thank you again Mochimoo, I hope you are feeling much better now being NED though I can imagine it’s always at the back of your mind. Xx

Hiya Sarah just an update, yes it’s probably my least favourite thing I’ve ever done! I’m dreading if I have to do it again at some point. It didn’t help that I felt panicked and claustrophobic and then the anxiety song came on in the headphones

Yes they changed it to a full, well I say full but neck to thigh scan. I couldn’t have the buscopan injection because I have a racing heart. X

Oh Windy-I feel you! They are my least favourite type of scans-I find CT scans are much easier and so is the pet scan. 

For me, I didn’t have another mri until 3 months after my treatment finished but hospitals can differ in their scanning protocol so it may be different where you are.

However, the mri will give a good picture of where the cancer is, and its size and hopefully that will be enough with the biopsy result to stage the cancer and decide on the right treatment plan for you. I did have the buscopan which helps to settle things in there, but not everyone does. 

The wait for results and a decision is tough…we all find that hard, so I hope you don’t have too long to wait to find out more.

Sarah xx