Hello,
On the 8th May I was diagnosed with High Grade Endometrial Carcinoma after a womb biopsy. It was full steam ahead from that point to get me in for surgery to have a radical hysterectomy and removal of my ovaries. There wasn’t enough time for me to be able to preserve my eggs and they were concerned about the aggressive nature of the cells. So I had to make the heartbreaking decision to go ahead with surgery without being able to preserve my eggs, I am only 27 and don’t have any children.
So on the 5th June, I underwent the hysterectomy laparoscopically and spent 3 days in hospital as I developed a UTI. I am 3 weeks post op now!
I had an appointment with my surgeon and nurse specialist on 23rd June with the results of my surgery and pathology results. There was absolutely nothing else detected in anything that was removed, including my lymph nodes. They found that the cancer had been growing in a polyp on my womb.
They have staged me at Stage 1A High Grade Endometrial Carcinoma and a P53 abnormality.
It’s been recommended by my surgeon and oncologist that I now need to have 4 rounds of Chemotherapy over 12 weeks to ensure there is no cells that have been missed to help prevent recurrence. I will also have to have brachytherapy after chemotherapy.
This is such a huge amount I have been through the past 7 weeks and has been life changing for me. I am not unwell at the moment, I am healing amazingly from surgery too. I’ve just got such a strong fear of Chemotherapy and I’m so worried about the side effects, the hair loss and being unwell for the next few months. I just don’t know what to expect or how I’m going to feel.
My absolute main worry is hair loss. I’m only 27 and my hair is my identity. I feel like if I lose my hair I’m going to lose who I am. I know that sounds crazy considering what I’ve been through but I just can’t get past the thought of losing it. And I’ve seen so many mixed comments about the Cold Cap. I really would like to try it with the chemo to see if I can keep as much hair as possible. Has any one cold capped for 3 weekly chemotherapy and had success?
I’m looking for a bit of guidance and reassurance from anyone who has been or is in a similar situation to me and can relate. Any advice, help or support would be amazing. Thank you in advance, Lauri.
Hi Lauri
Welcome to the Womb group.
I am sorry to hear of your diagnosis of a higher grade endometrial cancer. I understand that it can be difficult to come to terms with at a younger age when you had not had children.
It can feel a shock to be told that you need further treatment when the cancer has been caught at an early stage. I also had an early stage and high grade cancer.
With any higher grade cancer the adjuvant treatment does tend to be offered at an earlier stage. This is because the cancer can behave more aggressively which can mean there is a higher chance of recurrence without it. The p53 part is also important.
My own adjuvant treatment was chemotherapy and then 25 sessions of external beam radiotherapy.
With cancer, whilst they believe that they have removed the cancer and it was contained, sometimes there can be tiny cells left behind that are not yet visible on scans. In time, in some people these could travel through the blood/lymph systems and potentially set up elsewhere. Whilst in many cases it is possible to treat a recurrence, I was told it was far easier for them to try to prevent it happening in the first place.
I am still clear of cancer at almost 4 years post treatment.
I remember feeling pretty well after my surgery and did not like the thought that the chemo could make me feel unwell. Chemo to me, was a scary thing to contemplate as I did not know anything much about it other than how it was portrayed in films, books etc.
My own experience of chemo was nothing like I had feared- yes it was tough at times but it was doable. I did have some side effects but on the whole these could be managed with medication. Chemo can affect people in different ways and to different extents. I think that possibly your age and general fitness will help you cope better. I personally found chemo easier than radiotherapy.
Most ladies seem to be offered 4-6 cycles of paclitaxel and carboplatin on a 21 day cycle. Day 1 is spent at the hospital, home the same day to recover. The first week of each cycle was when I felt most rough, by week 2 I felt I turned the corner and by week 3 I was ok to do more.
Hair loss can be a big deal for many people. I was horrified at the thought of losing mine and hair is indeed part of our identity. For many it is not just hair. I also felt I did not want to look ill.
I did scalp cooling and I feel it worked for me. I still had back up options of scarves, a wig etc but in the end did not really need them.
I wrote this blog detailing my experiences. I will pop a link in case it would help.
If there is anything you want to ask about, please do so.
Jane
