Dealing With A Cancer Recurrence
I wasn’t going to write about this. I didn’t want this latest development to define me. I didn’t want this blog, my sanctuary, to be all things cancer again. I was also worried about boring all of you. Saying all of this, I’ve received a flurry of messages from people and that has changed my mind. Plus, I have to admit that as little as I may want this cancer to be part of my life, it is.
Raising Awareness
I’ve had messages from people who have gone to the doctors because of me sharing my situation. Talking openly about bowel cancer has made me realise the importance of ordinary people like me documenting their experiences. It’s a little bit of positivity that can come out of this less-than-ideal situation. I’ve had people tell me that they went to their doctors and thankfully everything was okay. I’ve heard from people who went and were diagnosed with Crohn’s and now they are managing their symptoms, and I’ve also heard from people who went to the doctors and were diagnosed with bowel cancer. These people all felt empowered enough to go to the doctors and argue their case for a colonoscopy. They were confident enough to put forward their symptoms. That’s incredible. That’s why I share my story.
The First Signs That Something Wasn’t Right Again
That’s why I am here sharing the latest in the hope that I will continue to educate and raise a little awareness. Christmas 2020 I was diagnosed with bilateral PE (Pulmonary Embolism) after dealing with what I naively thought was a chest infection. At the same time the doctor realised my cancer markers had risen. I was very quickly referred for multiple scans that came back clear. Yet the cancer markers continued to go up and it looked like the cancer was hiding somewhere. I was referred for a PET scan and they mentioned a slight hot spot in my left ovary, but the report stated that this could be to do with my age. I had another blood test and the cancer markers had gone up again. This was a little stressful and we were desperate for answers. Was it cancer or not? Could it be the blood clots confusing my body? I continued to try and build my fitness back up, but I was feeling more and more fatigued and didn’t know if that was simply me recovering from the blood clots, or the cancer sneaking in.
Dodgy Ovary
I was referred to a gynaecologist who did an internal scan and confirmed that the left ovary was looking enlarged. But she couldn’t be sure that it was cancer as she had gone through my scans and had noted that the ovary had been sitting there looking enlarged since 2019. However, it was decided that the safest course of action would be to open me up and if it looked dodgy, whip it out. Covid meant that I had to go into hospital for that initial operation on my own. That sucked (to put it mildly), but on the other hand it meant I was strangely calm as I was just able to focus on the next step.
On opening me up the ovary was whipped out as it wasn’t looking its best. However, the gynaecologist couldn’t tell me there and then if it was cancerous. I was desperately hoping it would be a benign tumour as I had read that they can push up your cancer markers. I knew that the other option could be a Krukenberg tumour as that matched the little I knew about my enlarged tumour. I was desperately hoping it would not be a Krukenberg tumour as Dr Google had not told me good things.
Not The News We Had Hoped For
What followed was 10 days of waiting before I was called in to see my gynaecologist at hospital. I knew when I arrived to find another nurse in the room that it wasn’t going to be the best news. Luckily, it was a nurse I knew from my previous bowel cancer diagnosis, and she was lovely. It was confirmed that it was a Krukenberg tumour and that I would need another operation to remove the other ovary. It was later confirmed that the other ovary also had cancerous cells. What can I say? I cried briefly and then pulled myself together. I was asked if I would like to ring my husband and get him to come in, but he was on the school run picking up our youngest daughter. I left that appointment in a weird place. Numb, I guess.
How I felt
In the days that followed I went from anger to relief that it had been found, through to sheer fear. The more I googled, the more fearful I became. Look at the survival stats for Krukenberg Tumour and It’s shocking. But then cases of bowel cancer moving to the ovaries are rare, stats are quickly going out of date as cancer treatment is progressing all the time. We are told not to look at Dr Google, but I don’t agree. I like to go in prepared, I like to ask questions. It’s always best to be armed with information. I firmly believe that knowledge is power. The more I read, the more I realised no scan and no blood test is 100%. Krukenberg tumours are particularly hard to detect on scans. I don’t say this to scare you. I say this because it’s important that we know these things, that we push for answers. That we advocate for ourselves. This feels like a good time to remind you of the bowel cancer symptoms.
Bowel Cancer Symptoms Can Include:
Bleeding from your bottom and/or blood in your poo
A persistent and unexplained change in bowel habit
Unexplained weight loss.
Extreme tiredness for no obvious reason
A pain or lump in your tummy
Also check out Bowel Cancer UK website for more information.
The symptoms for a Krukenberg tumour can be subtle like bowel cancer and there isn’t much information out there on Krukenberg tumours.
The symptoms can include:
Pelvic Pain
Bloating
Ascites
Pain during sexual intercourse
Change in menstrual habits
Where I am at now
I am only the second person my oncologist has treated with a Krukenberg tumour in 14 years. The rarity of it means coming up with a treatment plan is tricky. It was decided that a new combination therapy was the answer. We are throwing everything we have at it. I’m now on cycle 3 and we are thinking no more that 12 cycles. 10 cycles have been mentioned but we won’t know for sure until we are further down the line. I must be honest and say that I am finding the 2-week cycles fairly brutal. I’m just starting to feel better when the cycle starts again. This treatment means I go in for an infusion of my drugs and then I’m attached to a pump with more drugs, for 48 hours. The side effects so far have included painful face rash, sickness, fatigue, constipation, diarrhoea and a painful leg rash. Yes, it’s not nice, but I’m lucky that chemo is an option and hopefully this chemo will work its magic. Due to the nature of the tumour, I’ve also been offered a second opinion and that is something I may consider for the future.
So that’s my update. Not the best, but it could always be worst. It’s been a challenging three years, but have any of us had the best 2020/21? I’m lucky that I am in Jersey and that my treatment is going ahead. I’ve read many horror stories about people having their cancer operations and treatment delayed in the UK. What I would say is that if you have any symptoms or concerns don’t delay going to your GP because of this pandemic. The sooner you can get in the system, the better your chances of being seen.
Thanks for reading my waffle and your continued support.
Emma xxx