Recently diagnosed and very scared

Hi Delliea and welcome to our group.

I’m so sorry to read you’ve had this diagnosis, but I hope you’ll get a lot of support and encouragement from the group and be able to see that there can be light at the end of the tunnel!

I had stage 2b and did chemoradiation as my first treatment. At the time, the combined chemo you’ll be having was still on a trial basis rather than the standard treatment and I chose not to go on the trial, but this was in 2018.

Lots of the other ladies in the group treated more recently for stage 3 did have the combined chemo prior to chemoradiation,and have done very well, so I hope they’ll be along to post soon about their experiences.

Because I didn’t have the chemo combo, I only had Cisplatin chemo along with radiotherapy and I was unable to have the brachytherapy although it was part of the plan for me. I had extra radiotherapy sessions instead. 

My cancer did recur, unfortunately, but I was able to have surgery more than 6 years ago and I have been fine ever since. My consultant considers me to be cured so I wanted to reassure you that things can go well, despite difficult circumstances. I was unlucky that I only managed 4 out of 5 sessions of Cisplatin and missed the brachytherapy altogether, but remember that your situation is different and you will have more extensive treatment than I had.

It’s a very scary time when you’re first diagnosed but things are often not as bad as you might imagine-fear of the unknown makes things worse in our heads. I had zero bad effects from Cisplatin, and didn’t lose my hair, no sickness or even nausea and actually enjoyed my chemo days though they were long. Nice and relaxing in the recliner, lovely staff and tea/coffee/lunch provided. 

I found radiotherapy harder as time went on-the sessions are short and painless but I had some side effects kick in 3 weeks into treatment. The main thing was fatigue, and I had some bladder and bowel side effects which can be common with pelvic radiotherapy. I had radiation cystitis and terrible diarrhoea but these were dealt with by my team and I got various things to help. My side effects didn’t last when treatment finished-I was fine a couple of weeks later although the tiredness persisted for a while. My bladder and bowel went completely back to normal.

The treatment is quite intense over a relatively short period of time, but hold onto the fact that it can be very successful and keep those positive thoughts at the forefront of your mind if you can. 

It’s ok to be anxious and scared-we can all identify with that, and you don’t have to be strong all the time. You’ve had a cancer diagnosis and that takes time to process.

Keep posting whenever you’d like to and ask questions and we’ll do our best to help you through this.

Sarah xx

Hi, it is a lot to get your head around.

I’ve recently finished treatment for stage 3c and it honestly wasn’t as bad as I expected. I had the combo Chemo, Chemo/radio & Brachy with barely any side effects until the last 2 weeks of treatment. I did the cold cap so didn’t lose my hair, probably shed about 15%, but it was hard to tell. In The first Chemo I felt a bit woozy for 5 mins after the antihistamine, but all sessions after that were fine. Radiotherapy you are in and out in 10 mins, and the way they do Brachytherapy in my hospital means you don’t remember any of it.

Side effects wise, which only really came from the radiotherapy, I had fatigue & aches and radiation cystitis. You do have tired days towards then end of the week with chemo, but the steroids get you through a lot of it.

It’s a lot to take in but there’s plenty of help on here x

Thank you for replying , it is a comfort hearing from others who have been through it. 

Thank you for your reply . 
 I did wonder about a cold cap but have heard mixed reviews and mostly not good and heard they are really hard to tolerate . Which one did you use ?

did you have the Paclitaxel & carboplatin ?

I think it is definitely fear of the unknown and losing my hair is terrifying so anything I can do to minimise it I’ll try . 

Yes I had 6 weeks of Paclitaxel & Carboplatin.

I used the Paxman cold cap machine, the first 10-15 mins are tough and you feel a bit sick and panicky the first time you use it, but after that you forget you’ve got it on. I didn’t tell my parents that I was ill, due to them being unwell themselves and in their 80’s, so I tried anything I could not to look unwell. There were a few people using it the same time as me there that had good results. It’s worth a go, you only have to do it 6 times, if you hate it then at least you’ve tried.

I used Faith in Nature shampoo & conditioner while cold capping .

Hello there. I'm so sorry to hear your news. I was diagnosed with exactly the same thing almost 2 years ago today. Since then I’ve had radiotherapy, brachi, and last year I had a complete pelvic exenteration, To prevent any recurrence of the cancer, so I now have a stoma. I can’t say I’m particularly happy about that, but I’ve just had my first all clear Scan after a year, which is great. i’m just living life each day, I’m well, and I went from having a terminal diagnosis, to living a life again. please hang in there, keep hope your heart…….. I know how very very scary this is for you, because I’ve been there, I’ve been where you are, and whilst I know that nothing can make this better for you, we’re all here to give you comfort and help you with this..xxxxxxxx

Hi GOLDENGIRL39 (Vee)

It’s nice to hear from you again, and very good news that you had a clear scan-what a relief for you. Every year that passes with good scan results feels so important, doesn’t it? 

Hope you’re getting on ok with your stoma these days-I tend not to give my stomas much thought nowadays unless I have an issue. It’s amazing what we can get used to!

Sarah xx