Hello everyone
Just had my cervical cancer diagnosis confirmed this morning - Adenocarcinoma cervical Stage 1B3. Face currently leaking lots and just wanted to find somewhere to chat as although the few friends I have told are all wonderful none of them have gone through this. I'm relieved it hasn't yet spread further, but it is apparently big.
I'd resigned myself to having a hysterectomy as the consultant had initially indicated that was a likely option, and so it was a bit of a shock to hear that isn't now the option and instead its chemo and radio. I'm generally feeling scared and overwhelmed.
While all the diagnosis process and MRI, CT, biopsy etc have been going on I feel like I've been doing a lot of masking as not wanting to tell people or work etc, and the stress from that has taken it's toll. Really stupid things to worry about in the grand scheme of things but even things like invites to Xmas do's and not being able to confirm if I can go or not and not being able to explain!
I am also stressing about and don't know how on earth I'm going to explain this to my son (he's 13) or my Mum - who is the world's biggest worrier and I feel a bit like I'm going to be the one telling her to try and calm down!
Next step I think is to meet the new consultant who will be dealing with treatment and to find out timelines and treatment plan, and I think they are sending me for a PET-CT scan. Anyone know generally how long things take from this point in terms of getting started with radio/chemo etc? I'm expecting not a very enjoyable Christmas this year!
Nice to e-meet you and thanks for listening. x
Hi Aitchie and welcome to our group.
It’s horrible to get a diagnosis like this, but I hope you’ll find it helpful to be part of the group going forward. All questions are fine here, and all emotions and feelings are perfectly normal!
I was also diagnosed with adenocarcinoma, but at stage 2b, so it had spread a little into the surrounding tissues. I too had been told before my scans that I would likely be having a radical hysterectomy but after the scan results was told this wasn’t possible, so I had chemoradiation as my treatment.
There are national and international guidelines for recommended treatment at each stage of cervical cancer, and so in your situation chemoradiation would be the way to go. The 1b3 stage would indicate a tumour size of 4cms or more, and it’s not usual to have a hysterectomy with a tumour of this size as there can be a risk of spreading the tumour cells. However, chemoradiation can be a very successful treatment plan for our cancer, with the radiotherapy being the main part, and chemotherapy helping by making the radiotherapy more effective.
My timescale was diagnosis and scans mid to late September and treatment started the first week of November. I had 4 sessions of weekly chemotherapy, and 32 sessions of daily radiotherapy (more than the usual amount of sessions as I wasn’t able to have brachytherapy which is internal radiation). I finished on Christmas Eve, and felt exhausted so spent Christmas Day in bed sleeping. I didn’t have to have a pet scan at the time of my original diagnosis, so I just had an mri and a ct scan at that point. If you need to have a pet scan there will be a wait for the results from that before the treatment schedule is finalised. Things are never as quick as you hope they might be in my experience!
Everyone is different, and reacts differently to treatment, so my experience may not be the same as yours. It just gives you an idea of my particular timeline. You won’t know how you feel until treatment starts so I know it’s hard to plan things at this time of year. I really told very few people-just my partner, adult daughters and a couple of close friends.
It’s an individual and personal decision who to tell and how to tell them-I didn’t say anything outside my very close circle until all of my treatment was finished and I had rung the bell in the radiotherapy department. But when I told my daughters I waited until I knew all of my results and had been given my plan so I was able to tell them that the treatment was being done with curative intent, and answer their questions.
The main thing for me at this point was the words “curative intent”, so I was able to be very calm telling my daughters, and reassuring them. You might want to know a bit more about your treatment before telling your mum if she is a worrier, so that she can be reassured that at stage 1b3 the intention will be to cure.
I’ll put a link here to Macmillan’s guide on talking to children and teenagers, which might help give you some ideas for talking to your son.
Talking to Children and Adults
You can also give the Macmillan support line (the number is in my signature) a call and have a chat to get some extra support in how to have a chat with your boy. There might be other ladies in the group come along and share their experiences as I know many of them have children. I found it very difficult to tell my adult children, so I appreciate it will feel challenging to have this talk with a teenager.
Please keep with us and keep posting if you need anything. It can be quite overwhelming when you’re first diagnosed and start treatment, but I hope we might be able to both support you through and give you reassurance that this is manageable no matter how scary it seems at first.
Sarah xx
Thanks Sarah that is really useful to hear and a useful link.
I do appreciate everyone has different experiences so it won't be my journey but it is just useful to hear actual real life examples from others as it stops my mind going worst case scenario!
I kind of thought I would have to tell more people as would think once treatment started it would be obvious - don't people loose their hair with chemo?
It's so silly - I don't want to google stuff but I have questions which is why it's useful to find people to talk to 
One of the things most people think is that chemo will cause hairloss, but it’s not always the case.
The typical chemo used with radiotherapy at your stage would be Cisplatin-that’s the one I had. It doesn’t cause you to lose your hair, and in my case it didn’t even thin it out. I did lose hair on my body-legs and underarms didn’t need shaving while I was on treatment, but didn’t lose eyebrows, eyelashes or the hair on my head. Other types of chemo used in cervical cancer do cause hairloss, but at your stage you may not be on any of them.
Chemo didn’t make me feel ill, or even nauseous, so I don’t think I looked ill at all. The worst thing for me was the tiredness, but that’s a common cumulative effect of radiotherapy for a lot of people, so I blamed my tiredness on that!
You’re wise not to google as it can make you more anxious if you go down rabbit holes of information which may not apply to you. Once you find out the chemo you’ll be having, I’m sure we’ll be able to share our experiences. I’ve only ever had Cisplatin, and had no issues with it. In fact although the days of the chemo treatment were long, I found it very relaxing and had no side effects at all going through it. Other types of chemo can be different.
I had my chemoradiation exactly at this time of year in 2018, and had very good results, so I hope you might find that reassuring, all questions are very valid so ask away..this is all very new to you and it’s a scary time, but we are here to help keep you steady.
Sarah xx
Sarah xx
Try to keep hold of that positivity as much as you can as it can really help you cope! I told myself every single day after my diagnosis, when I woke up in the morning, “I will be well.”
It helped me to start off the day on a good footing even if it wasn’t a particularly good day. Sometimes our thoughts can slide and things feel negative, but it’s helpful to try and pull ourselves back from that and try not to dwell on them. Not always possible, but worth trying.
I found a mindfulness app on my phone to listen to, and calming sounds like the ocean if I had trouble sleeping. It’s good to try your best to ground yourself in the here and now rather than racing ahead with thoughts of “what if”. Keep to the present, focus on what you know now at this moment.
I found things felt much better once my treatment plan was in place and I could focus on crossing off every day and getting through it.
Sarah xx
