Hi everyone,
following a scan in May I requested a copy of the results after being sent an appointment to discuss them with a consultant in November. Dr Google made me think my thickened lining of 26mm was concerning and I couldn’t understand why it wasn’t being investigated. I spoke to my GP, hoping he would say I was worried for no reason but he agreed with me and gave me details of how to contact PALS. He also emailed gynae to question it. Within a week I had an appointment for a hysteroscopy.
Last week I was sent a letter, first contact since the biopsy. An appointment at the hospital with Dr Gynaecology Oncology. Department Gynaecology Oncology. What a way to find out. Not even the department I needed to find in the hospital, it was just the outpatient department. That made me angry. What a way to be told.
Full hysterectomy booked for 19th September.
I felt bad for pushing. I felt like I was abusing the word cancer to get looked at sooner, it felt wrong to jump the queue. If I hadn’t I would still be waiting for that November appointment. They should have done all this back in June/July though. Had they looked into it properly then, I’d be healed and hopefully cancer free!
Hello LollyB
Welcome to the Online Community. I am sorry to hear that you have had a diagnosis of endometrial cancer and can remember how scary that is. It is good though that you have got the testing part done and that already have a date for your hysterectomy.
If you click on my name you will see my profile come up, but I had my hysterectomy in April 2022. My womb cancer was early stage but was followed up with chemotherapy and external beam radiotherapy. I finished my treatments 11 months ago and currently get seen every 12 weeks. You may want to consider adding to your profile at some point as it helps people know a bit more about the stage you are at when you post, and it saves repeating yourself. It is up to you though but I did find it helped.
It is good that you were able to get your appointment bought forward and you should not feel guilty about prioritising your health. I can remember when I first got a letter saying GynaeOncology from my hospital. But with mine they refer everyone with any potential symptoms (mine was bleeding) to the same clinic - and it is for people who need cancer ruling out as well. I can understand you felt angry though and maybe it is something you could mention at some point to prevent others having the same shock.
I had a total hysterectomy with BSO ( with ovaries/fallopian tubes/cervix removed) and recovered well from it. I went home the next day and had little pain from the op. After the operation you normally have to wait for some post op histology to come back and then that will confirm your grade and stage of cancer. This is what is used to determine whether you need to have any follow up treatment. Mine came through about 3 1/2 weeks after surgery and it was a shock to be told I would need more treatment as I was early stage. However for some people the surgery alone will be enough. You may have been given a provisional stage/grade already after your biopsy/scans.
Here is some info that you might find helpful about the hysterectomy and expected recovery.
Hysterectomy for womb cancer | Macmillan Cancer Support
Recovering from womb cancer surgery | Macmillan Cancer Support
I will pop a link below to some information that helped me when I first got diagnosed.
Womb cancer booklet | Macmillan Cancer Support
I found it best to focus on one step at a time as otherwise it can feel overwhelming. So to begin with I focussed just on the surgery and what I would need to do to recover from it. After the post op histology came back and I found out I would need the other treatments, I then had a look at the next step.
I hope this helps a bit. If you have any questions please do ask. There are lots of lovely ladies on here who have been where you are now and will want to offer support.
Jane
Hello LollyB , wow not sure what to say what a way to find out. It’s is hard enough to be diagnosed but it’s how it’s done that is important. I remember how shocked and very scared i was but also angry too. It maybe different to your experience but i had a situation where my Gp suspected cancer but the hospital doctors didnt want to investigate as i was young and only had two small fibroids nothing to worry about, how they were very wrong a reason it took near a year to get diagnosed but i have to say the hospital i was referred to to have my surgery were absolutely amazing, such fantastic doctors and care I cannot fault them but my local hospital i ended up and still i am to a certain extent i am scared of. Many will say why well, it has to be i have no confidence in them at all. I really hope that everything goes well for you in September i have my fingers crossed for you and i am so very sorry for how you have been treated and i hope that your future care is much better and restore some faith in the system, a system which may not be perfect but its down to the individuals to bridge the gap.
sending gentle bear hugs 
_GBear Xxxx
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