My FAQ - Cervical Cancer from before diagnosis to after treatment

Hello, and welcome to my personal frequently asked questions about my life with cancer.  Disclaimer - I am not a medical professional, and you should in no way treat the below as a substitute for professional advice.  If you're unsure about anything that effects you, please see a medical professional.

The below is FAQ's about my cervical cancer experience so far.  For those that haven't read my blog, or have recently discovered it, most of what I write below, has been mentioned in my blog posts.  I've documented this as a FAQ for those that may have missed some posts, or just want a refresher of how I've managed my cancer treatment.  Everybody is different, and treatment may vary from person to person, however, some people may find my experience useful for their own journey, or supporting others with a cancer diagnosis.

Pre-diagnosis

When did you know something was wrong?

It wasn't more of something was wrong, but something didn't feel right.  I started getting constipated at the beginning of 2020, at the end of January or start of February.  This likely started due to bad eating habits, and work related stress (more like I was getting a little stressed, being put into two new situations, however the stress dropped very quickly.  So I'm not blaming work).  I checked out the NHS website, and stated constipation could take up for 3 weeks to clear.  On top of that, I was having back pain.  Something which isn't unusual for me, as I have scoliosis (curvature of the spine, which I've had since being a teenager).  So I was taking over the counter medication to try and manage that, however the pain was still there, and I would get home from work, and be completely exhausted, which was unlike me.  However, one evening I had the most horrific pain (and I can manage a lot of pain normally), which kept me awake most of the night, as well as my temper being through the roof.  I was angry at the pain, and I couldn't take much more of it.  I originally thought it could be appendicitis, from where the pain was coming from.  I booked an emergency appointment with the doctors.  

When did the word "cancer" first get used?

The doctor did an examination, which concluded I had a mass.  This happens to be around where I was getting the pain, but wasn't appendicitis.  The doctor had said she wasn't sure what it could be, but told me it could be a fibroid, and there's a chance it's cancer.  However, further tests would be able to see what it is.

How did you get diagnosed?  What tests did they do?

Firstly, I was sent to get an ultrasound scan, and also booked to see the gynecologist.  The ultrasound confirmed I have a large fibroid (9cm), but said the gynecologist would be in touch after they've seen the scan images that were taken.

At this point Covid had got serious in the UK, and the appointment I was booked in for, ended up being over the phone.  I didn't mind the calls being over the phone, saves on the travel and parking!  The consultant was concerned that the pain I was having may be due to something else, and wanted me to have further scans.  She also spoke to me about the possibility of having a hysterectomy, which I jumped at the chance.  We had no plans to have children, and my monthly cycles were awful every month.  She proceeded with getting me set up for that, although with Covid, the surgery may get delayed, unless she could demonstrate that every other avenue had been investigated first (which I was happy to have).

So with that, she booked me in to have a CT scan and MRI scan.

What's a CT and MRI scan like?

A CT scan is like going through a ring doughnut, and isn't that noisy.  The MRI is more like a sausage roll (yeah, I'm going for a food theme!), and you're the sausage meat.  It's very close to you and is noisier (depending on how old the machine is, can be quiet noisy).  However, you do get to wear headphones and listen to music.

When did you find out the results?

It was usually a few days to a week after the scan.  The CT was requested first, then after that she requested the MRI.  I had an appointment with the gynecologist a week after the MRI.

What happened at the meeting with the gynecologist?

All previous meetings I had over the phone, due to Covid (under normal circumstances I imagine the appointments are all at the hospital).  The appointment after the MRI, she wanted to see me, and this was to break the news that I had cervical cancer, and then to do a biopsy.  I had a feeling before going there that I was going to be diagnosed, as it was the only face to face meeting.  I also caught a glimpse while in the waiting room, of her and a nurse covered in PPE.

With Covid, I didn't have anyone with me.  In the room there was the consultant and two nurses.  This part is a bit of a blur, as when you're faced with any diagnosis, it can get a bit overwhelming.  However, at the start of all these tests, I had prepared myself just in case I had a cancer diagnosis.  I didn't tell many people because 1/ they may worry and it turns out to be nothing and 2/ I wanted control of a situation I had very little of.  I didn't want sympathetic phone calls or visitors, that doesn't help me get through a cancer diagnosis or treatment.  I wanted to be ready to fight this and I needed to be strong physically as well as mentally.

She genuinely looked sad having to give me the diagnosis.  I'll never forget the look on her face.  She gave me time before she asked how I was doing.  I was honest with her and said "It's a shock, but I had already prepared myself in my head, in case this was the diagnosis, as it would be easier to process.  Also if it wasn't cancer, that would be even better.  I'll be fine, I may have a little cry at home."  I honestly wanted to know what was next, what I could do to better my chances, and at some point get more information.  I needed a plan to give me focus, and they gave me that.

What was the plan?

At this point, we don't know how far advanced it was, so a PET CT scan was requested.  This is a CT scan (doughnut), but you're also injected with a radioactive cocktail which shows up cancerous cells, basically show up what they can't normally see with a CT or MRI.  This then helps the planning stage for treatment.  One of the nurses who works with the gynecologist kept in regular contact with me, and gave me a number to call if I had any questions or concerns.  She made sure everything was arranged, so I wouldn't need to chase anything.  Once the PET CT scan was through, I would either see the consultant or get a phone call.  Luckily in this instant it was a phone to basically say I have Stage 3 cancer and the oncology team in the cancer center, which is also on the same hospital site, will take over from there.

Later that day, I had a call from the cancer center to start booking my treatment in. They wanted to go through the pre-treatment work that needed to be done, and they had an appointment the following day.

The pre-treatment was basically a CT scan and a measure up.  The scan helps with the planning of treatment, and they also give you tiny tattoo markers, so you are in the right position for each treatment of radiotherapy.  Treatment tends to start in 3-4 weeks, so getting this planning appointment in earlier would get treatment started sooner.

What treatment did you have?

I had 5 weeks of radiotherapy and 4 treatments of chemotherapy.  Following that I had 4 treatments of brachytherapy.

What was radiotherapy treatment like?

Radiotherapy was 5 days a week and each session tended to last around 20 minutes.  For the first 10 sessions I needed to take a micro enema to make sure I was empty and it doesn't move anything around so treatment goes in the place it has been planned.  I also had to make sure my bladder was empty before each treatment (also avoiding anything that could build up gas, so for example no fizzy drinks).

The treatment itself doesn't hurt.  You lay on the bed/table, they make sure you're in the right position and also there to answer any questions or concerns about side effects, and are just have a little chat.  They firstly scan the body, then treatment starts (think like a giant xray machine that circles around the body, it doesn't touch you).  Each treatment, I have to go in with no bottoms on (pants stay on), but you can take a wrap to wear as you walk from the changing room to the bed.

What was chemotherapy like?

Each person is different, as well as what the treatment is for, so I won't go into much detail.  For me, chemo didn't start great, as they couldn't find a vein suitable.  They ended up having to get someone with an ultrasound to find a vein in my arm and put the cannula in, and the following week I had a PICC line put into my arm, so I wouldn't have the drama of the nurses finding a vein each week.  Following that, I had to take steroid and anti sickness tablets, and then the cycle of treatment takes place.  You do have your bloods taken either a couple of days before or on the day, as well as weight check.

What was brachytherapy like?

I had to go to a different hospital for this treatment, and it was on Tuesday and Friday for two weeks, so I had four sessions.  I would be given a spinal anesthetic (spinal block), so they could put the applicators (tubes) in so I could have the treatment.  This treatment involves sending a radioactive source through these, with the tubes hooked up to the brachytherapy machine, and took around 15 minutes.  Once complete, the source goes back into the machine and then the tubes all removed.  It did involve not eating before treatment, and I was in for most of the day (usually I was there from around 0830-1700).  The spinal block wasn't always fully successful, but they had sedation ready in case that was the case.  I had the sedation twice, and the block worked twice.  My twisted spine made things a little more interesting for the anesthetist. While awake I didn't notice anything that was going on, as I could feel nothing from my hips down.  I would just lay there, listening to my music on my phone.  When the proceedure of putting the applicators in was done, I would then be sent to have a CT and MRI scan to make sure everything was in place, and plan the treatment.  Then I would wait in recovery, and he nurses occasionally check to make sure everything was fine down below, and let me sip water through a straw you can't sit up).  After treatment had been given, it was time for tea and a sandwich.  Then before you can leave, you have to go to the toilet.

Have you lost your hair and wear a wig?

I've not lost my hair on my head, but I have lost hair that's localised to the area I had radiotherapy, but over time that will come back.

What side effects did you have?

I started off pretty well with no side effects at all.  However as radiotherapy reached the second week, I experienced severe diarrhea, and lost a fair amount of weight.  This also effects the treatment plan, as things inside your body move.  The radiotherapy team let the planning team know and adjusted it accordingly.  I also had a loss of appetite, but I was prepared for that, and made sure I ate something even when I wasn't overly hungry.  I tried eating smaller meals, and snack in between.  Some days that was slightly easier than others, but it was a struggle.
I did have a few bouts of sickness, most of it was I was starting to feel sick, but the anti sickness tablets I was given helped.  Only one occasion was I physically sick, and that was probably because I didn't listen to my body early enough to take my tablet.  That was probably my lowest point.  I had lost weight, struggling to eat, tired and then sick.  This was also the only time I cried, I didn't even cry after my diagnosis.  I wanted to remain strong for myself, and I didn't want my mental state to hinder my progress.

What happens after treatment?

After treatment was over, I was hit with exhaustion. You don't feel instantly better when treatment ends, as your body is going to take some time to recover.  I won't know for some time if treatment has been fully successful (my treatment has been done in order to cure me).  I have an appointment with the oncologist 4 weeks after my final treatment, and then scans will be booked in. 

I hope you've found this helpful, and I may update this more, as time goes on.

As always, take care and stay safe x x