Next steps

Hi Beekeeper527494c 

I had stage 2b cervical cancer and my treatment was daily radiotherapy with weekly chemo sessions, which was the standard protocol for my stage at the time of my diagnosis in 2018. Brachytherapy was planned to happen at the end of my chemoradiotherapy. 

I found that when I had my appointment with the consultant, everything was explained to me so I didn’t really have any additional questions that I could think of to ask at the time.

In your position, I’d be asking what type of cervical cancer it is (there are several different types), why you won’t be having chemo, and how many sessions of radiotherapy you will be having. Each treatment plan is tailored to us as individuals, so there can be differences even to our own plans as things go along. For example I was scheduled to have 25 sessions of radiotherapy but ended up having 32, since it turned out that I couldn’t have the planned brachytherapy. 

It’s good to go with a list of things you’d like to ask, as it’s very easy to forget things when you’re actually sitting in the appointment. I’d also recommend having someone with you, as another pair of ears is very useful! There can be a lot of information to take in and remember and if you have someone with you they will pick up on things you might miss. 

Do you have any questions you’d like to ask in the group that we might be able to help with? The medical staff are good at giving the technical details about treatment, but being able to speak with others who have actually been through it can be very helpful, and reassuring. 

Sarah xx

Thanks for that Sarah, the nurse is spoke to on the phone  sure when I mentioned chemo she said no. That is something i will ask. Its been so helpful coming on the forum. I will have a think and I will ask on here. Thanks again. Xxxx

A low dose of Cisplatin chemo is usually given once a week while you’re having radiotherapy. It doesn’t make you lose your hair, and is designed to increase the effectiveness of radiotherapy.

Just a thought too about chemo-there has been a long running trial called the Interlace trial which has produced good results. This involves induction chemo which is a short course of Carboplatin and Paclitaxel chemo prior to starting the chemoradiation. A number of ladies in the group have done this, so I’d ask about this too. I’m surprised the nurse has said there’s no chemo at all planned for you, so I’d hope your consultant can explain the reasons why. 

Sarah xx

Thanks Sarah , I will certainly ask these questions. If you can think of anything else I should be asking? I dont want to come away from the appointment wishing I'd asked more. Thanks xxxx

For me, my initial appointment was led by my consultant-I chose not to google anything in advance-and he explained what the treatment would involve. He told me more about my cancer-the type it was, exactly where it was situated and the stage. 

My CNS (cancer nurse specialist) was there and gave me her card and telephone number, explaining that I could call her up with any questions afterwards if I needed to. She also called me weekly during treatment to see how I was feeling and check if I had any questions. 

I found it difficult when my diagnosis was new to think of any questions I should ask as I really didn’t know what I needed to be asking! I was given explanatory leaflets about chemo, radiotherapy and brachytherapy which I went through when I got home. I would expect you to get this kind of written information too, which might throw up some questions for you. 

You will need to sign a consent form to be able to have treatment, and this will explain about risks and potential side effects. Everything should be fully explained so that you can give what’s called “informed consent”, so if there’s anything you’re not sure of, ask for clarification. In fact anything you are being told which you don’t fully understand, ask for it to be explained again-sometimes the doctors use medical jargon we might not be familiar with and forget this is all new to us!  

You need to know when your treatment will start, so ask about that.  Prior to radiotherapy you will need a planning scan so that the radiographers can plan the exact location of your tumour and calculate where the radiotherapy will be targeted. When I went for mine, it couldn’t be done as  my bowel wasn’t completely empty so you should make sure when you go for this that your bowel is empty or you might get sent away and need to come back. I wish someone had warned me about this!

It’s very difficult to predict how treatment will affect you-we are all different and some ladies sail through while others may struggle a bit more. I did find radiotherapy quite challenging and very tiring. Pelvic radiotherapy can affect bladder and bowels for some people, so speak up if you feel any side effects starting like diarrhoea and radiation cystitis. I had a weekly review with my consultant in the radiotherapy department when I went for treatment so it was a good opportunity to get help at those appointments.

Is there anything you can think of that’s on your mind just now? You haven’t really had much information so far, but the face to face meeting should give you much more.

Sarah xx

Thanks Sarah, I feel in limbo. Only bits of info here and there. I feel once I go on Wednesday I will be clearer. I have been eating a bit more so feel the anxiety levels have lowered. Sleep isn't great, but probably a bit better than last week. A very low dose sleeping tablets every other night seems to help. I know they're addictive so not going to rely on them. Since the biopsy, a few weeks ago I have only been showering. Sounds silly but not sure if i can go back to having relaxing soaks. Keep forgetting to ask. I miss going swimming. Havnt asked about that too. My notepad of questions is filling up x.  

Yes, you can have a bath, yes you can go swimming if you want to for now as it’s a few weeks since you had the biopsy.

You can have baths during treatment.

Swimming during treatment will depend on the treatment-I know you’ve said you’re not having any chemotherapy at all, but if it turns out you are, your immune system would normally be compromised and swimming in a public pool might put you at risk of infection so would be best avoided. I would not have been thinking of going swimming during radiotherapy because I was too exhausted! 

I’m not personally a fan of getting information, especially a cancer diagnosis, by phone as it might not allow the same level of questions you can ask in a face to face appointment or give you enough information. My hospital had a policy of everything being face to face which was much better for all the way through my own process. Every appointment, delivering good or bad news (and I had both good and bad at times) was given in person.

Sarah xx

• I was a bit shocked getting the original biopsy results over the phone. The positive was I didn't have to wait as long. I wasn't expecting to be told it was cancer over the phone though. I will waito here from the consultant at the face to face appointment on Wednesday. Im sure everything will be clearer then. Thanks again Sarah. A relaxing bath has my name on it