Jane is recovering from Endometrial Carcinoma Sarcoma and is one of our Community Champions. She shares her experiences to help others who are on a similar journey. Jane has kindly put together this blog to share her recent check-up experience in the hope that it will reassure those who are about to undergo one.
"My cancer was endometrial carcinoma sarcoma 1b Grade 3 with LVSI. When active treatment ends for Endometrial Cancer, it is normal for regular check-ups to be scheduled. There can be some variation between hospitals and what may happen due to different diagnoses, stages, grades, and treatments, but this is my experience.
I had a total laparoscopic hysterectomy with bilateral salpingo-oophorectomy. This was followed up with carboplatin and paclitaxel chemotherapy and external beam radiotherapy. My check-up appointments happen every 12 weeks for the first 2 years post-treatment.
My check-up appointments with my health care team are to check for signs of recurrence and to monitor recovery. The fear of recurrence is very real, but I feel it is important to face it as any recurrence could have a better outcome if found and treated early.
I’m normally contacted via letter or phone call around a month before the appointment and in between check-ups, I can contact my Cancer Nurse Specialist directly.
I am normally seen by the Cancer Nurse Specialist team that I have come to know well. My appointments normally last between around 20 minutes to around an hour but this can vary according to how I am feeling and if there is anything I need to talk about. I never feel I am rushed and have the time I need.
After arriving I am always given a warm welcome and it’s a friendly chat about how everything is going. This is followed by more specific questions that would indicate red flags that would suggest further investigation is needed.
These are some of the questions I was asked this time and they may help you prepare for your next appointment:
This can be difficult to answer as I do have pain left over from the treatment, but they monitor this and are looking for new, different, and persistent pain.
Any rectum and vaginal bleeding or blood in my urine must be reported. Sometimes these can be caused by treatments, but any return of the cancer needs to be ruled out.
I was advised pelvic radiotherapy can cause this. What they need to know is if there are any changes that are persistent. This could be diarrhea, constipation, looseness, or urgency. Anything that is not normal for you. I am also asked if I have noticed any bloating or late effects of treatment.
I am asked if I have any bleeding, pain, frequency, or urgency. Again they are looking for changes, not caused by the radiotherapy.
I have lost weight both during treatment and after treatment as I have been trying to get healthier to reduce the risks of recurrence. This is fine but any unexplained and persistent weight loss is a sign that something is not right.
Vaginal dilators are an important part of the follow-up after pelvic radiotherapy. They need to know if there is any pain/difficulty inserting them (this could indicate some stenosis) or if there is any bleeding. They may ask about sex/relationships.
I am asked about tummy effects from the radiotherapy and any day-to-day effects. I am also asked about fatigue and neuropathy and pain.
I am always asked how I am coping as they understand that going through such a journey is really hard at times and that to need support is very normal. Do not be afraid to ask for counseling if you feel you would benefit from it.
I always feel nervous about physical examinations but in my experience, the actual examination is done quickly, and respectfully. I am told straight away of any findings. You will be asked to undress from the waist down and given the option of a gown. I tend to just wear a longer top. I find it helps to tell them if you feel nervous.
In my abdominal examinations, they feel around the whole of my abdomen, checking for any pain or lumps. They can press quite hard, but it does not hurt. The lymph nodes within the groin area are checked too. I am told straight away with a smile, that all feels healthy.
The vaginal examinations I have had are naturally a very intimate examination but the thing to remember is that they are doing these all the time. The second nurse acts as a chaperone and support and will hold your hand if needed. My CNS always explains throughout what she is doing and this helps.
After a quick check externally, there is a speculum examination. This is done using a small plastic speculum and uses a light. Lubrication is used and it is inserted and withdrawn slowly so that the inside of the vagina can be checked for any changes. It can feel uncomfortable but there should be no pain. Sometimes it can help to take a few deep breaths as it is more comfortable if you can relax.
I am told that I have healed well and that all looks good.
The last part of the examination is a manual internal and she inserts 2 fingers and gently feels inside. Again, they are feeling for any lumps or tethering. The examination is over very quickly, and she immediately says it all is good.
Once I’m dressed there is a quick chat that confirms that all is ok and what to do if there are any worrying symptoms before the next appointment. She confirmed that she will write to my GP and I will be sent a copy. I am reassured that I can contact her at any point, and she will arrange for me to come in. Any concerning symptoms would likely mean a CT scan and an appointment with my Oncologist.
How I feel after the appointment
Before the appointment, I feel really anxious. Although being regularly checked can be reassuring it can also bring about worries about the possibility of the cancer returning. For me, it triggers the memories of the diagnosis, testing, and treatments. It’s about the what-ifs:
What if it comes back? What if I need more treatment? What if it can’t be treated?
It can feel like a scary time. After the appointment, I feel the momentary relief that it is not back but that can be replaced by a few days of feeling a bit flat, tired, and emotional. For me, I think this is just processing it all and I find talking it through with people I trust and taking it easy for a few days is the best way. For me also the relief of the cancer not recurring has to be coupled with the acceptance of the impact it has had on my life and the ongoing side effects. Normally after a couple of weeks, things can feel more settled again, although I believe that once you have experienced cancer, it is always going to be in the back of your mind.
My advice would be if you are facing an appointment like this, please do not let the fear stop you from attending. Talk to your Cancer Nurse Specialist or the Macmillan Support Line and they will support you."
Thank you Jane for sharing your personal experiences with your check-up appointments and that you seem to be healing well.
If like Jane you are due to have a check-up appointment soon and need support, hopefully reading Jane's experience will provide some reassurance. There is also some additional support resources listed below which may be helpful for you to read:
There is some helpful information for treatment options, and symptoms of endometrial cancer, and related blogs you can access:
