Hi, I’m Debs or Debbie and forgot I was Deborah until all my hospital visits. I can’t remember the date I was diagnosed, I can’t remember Christmas or what the date and details that my grandson was born. My head space goes for overactive thinking to just numb, I keep just freezing, blindly staring at the screen, forgetting what I was doing, will this rollercoaster ever stop for me to get off ?
I went for my results to see if the cancer had spread and luckily it hasn’t, so I will be a full hysterectomy as well as pelvic lymph nodes removed. I didn’t see the normal consultant and this one I saw the other day was so rude and abrupt, my daughter and I came out more confused than when we went in. He wrote on the notes stage 4 grade 2 but isn’t that really bad ? He sent me down to the assessment unit for my pre-op but they said that they wouldn’t do it as my op is weeks away and he shouldn’t have sent me down, so did he even know what he was doing. so Confusing.
I feel I need to speak to someone but I don’t want to make a fuss, especially words being said like “yours is a good cancer” really, is there really a good cancer. It stopped me from joining Macmillan as I thought my cancer wasn’t serious enough. The appointment said “to discuss treatment plan” apart from his nonchalant attitude, he told me nothing about what will happen after my hysterectomy. He just passed me some “bedtime reading” he called it and that was it. Will I have to have check ups will there been more scans mri’s, will I be totally cancer free ?
Im really hoping coming on here will give me some answers, so any advice and support would be great.
I’m also petrified about my Operation, as is my daughter who still lives with me, she has Autistic Spectrum Disorder and severe anxiety, she is my carer and she’s so afraid of something going wrong when I get home, especially since she heard the things that could go wrong, including “death” she nearly passed out bless her. Another fear is COVID, we never got vaccinated, we literally locked ourselves away for two years, that was our protection. I had heard so many horror stories about it making my other illnesses worse after having the vaccine. What if I catch it while I’m on the ward ? I thought the surgery would be on the cancer ward, being all sterile and germ free, not a normal ward, I am so scared. When I raised it with the doctor I saw, he wasn’t interested, I really felt I was just a number to him. Anyway, that’s me in a nutshell, a complete anxious mess wanting to get off this rollercoaster. Nice to meet you
Hello DebsGJ
Welcome to the Online Community and the Womb group. I am sorry to hear of your diagnosis of endometrial cancer. I can remember what a whirlwind it was when I first got my diagnosis. If you click on my name, my profile will come up and your can see my journey.
I remember going from blind panic to calm and felt all over the place for a while. My only advice is to go with the flow and just accept that this is very normal when facing something as big as cancer. Sometimes it helped to keep busy, sometimes it was better just to rest. I found there were times like you are describing, when it was difficult to focus on anything. I did feel numb at time. I used to sometimes sit and do online jigsaws just to try and relax. I couldn't focus on reading or watching much on TV. For me it started to get better when I had my questions answered, had seen the consultant and had a definite plan in place.
It is natural to want information and I am going to pop a link here to some info that helped me. It is written that you can just dip in and out when you want to and don't have to read it all at once.
Womb cancer booklet | Macmillan Cancer Support
I am sorry to hear that you didn't have a good experience with your consultant at such a difficult time. I can understand your confusion. You are not making a fuss at all by wanting to speak to someone. You have every right to expect support from your doctors. Have you been given a CNS yet? This is a specialist nurse who will be your first port of call for any questions and they will support you through your journey. You can also turn to your own GP (I did) and they are normally sent all reports etc directly after your appointments. Sometimes my GP would receive my results immediately whereas they came to me a few days later. Your diagnosis, provisional stage and grade should be sent to your GP. They would be able to explain them to you if you are unable to get this information from your hospital.
With your stage and grade- these at the moment are provisional and after your surgery there will be post op pathology that will confirm this and provide further info. Sometimes it can change. Both your doctors are giving different information and I can understand your confusion.
With grades- cancer causes changes to cells. If the cells look only a small amount different, then that is grade 1. If these is more difference then that is grade 2. If the cells look very different - then that is grade 3.
With stages- Stage 1 is where the cancer is in the womb only. Stage 2 is if cells have been found in the cervix. Stage 3 is where the cells have spread out of the womb but are still in the pelvis. Stage 4 is normally where some cells have been found out of the pelvis. These stages can also be split.
The stages and grades help the doctors with deciding which treatments are best for you.
I do not like the phrase " It's a good cancer "- A doctor said this to me at A+E. No cancer is a good cancer and all cancer is tough!
Do not let it put you off having support from Macmillan. We will be there throughout your journey, when you need us.
What I would expect to happen now is that you will be contacted about a pre op check. This will be to make sure you are fit for the operation and anaesthetic. It will be things such as height and weight, blood pressure, ECG and covid tests. All the routine things they do for anyone having an op.
The op for me was very straightforward. I had it laparoscopically, there was very little pain and I recovered well. It was a case of taking things fairly easy at first and avoiding things like lifting. I spent 1 night in hospital and was home the next day.
After the pathology comes back post op the doctors will be able to confirm if you need any further treatment and if so what will happen next. It is hard to predict with the confusion between your 2 doctors. For some people it is surgery alone, some have some radiotherapy, some have some chemo. I had all. After treatment is finished it is normal to continue to have check ups for some time. There is variation with this but for me it is 12 weekly check ups for 2 years and then on to patient led follow up. I get discharged from oncology, back to GP care after 5 years.
I can understand your worries about your daughter and Macmillan may be able to help. If you give the Support Line a call they can have a look and see if there is any local support in your area. You can also speak with her own GP and see if there is any help available or to get advice on her behalf.
With the covid, I can understand your concerns and it is very natural to worry about these things. All I can say is that before I was allowed to have my surgery I had to do a covid test and I am pretty sure that will be the same for everyone. At the hospital I was also in a single room with adjoining bathroom. So although it is impossible to totally avoid germs, it is kept as safe as possible. I was also encouraged to wear a mask and I did.
I hope this helps a bit and remember it is very natural to feel as you do. The Support Line number is at the end of this and they are lovely on there if you feel chatting things through would help. I would also suggest speaking to your CNS (or GP) to get a better idea of what to expect next and to talk about the provisional staging. This will give you a better understanding of what is happening.
If there is anything else you need or would like to ask, then please do so.
Jane
Hi Jane, I was just reading this and wondering if it may be that the doctor’s writing might have been misunderstood? Doctor’s writing is notoriously bad, and I wondered if it might not have been “4” but rather a symbol for “and”? As it stands the sentence doesn’t make sense, but if it were “and” in there it would. Especially since with womb cancer when everything regarding grading and staging is finalised after the op. Just a random thought!
Sarah xx
Bless you- I am sorry I made you cry. Never feel you are bothering your CNS- they would never want that and it is their job to give you support. You might find an email address on your paperwork somewhere.
I hope you see the original consultant as well- it makes a big difference when they have the people skills needed.
Pop on as much as you need to. There are a lovely bunch of ladies on here who will offer support and share experiences.
Dyslexia can make things more difficult but even without it, it can feel overwhelming with all the new words and medical terms that no one comes across until put in this position.
It is only by going on this journey and also by being on here that you start to understand the medical terms they use. We also have an Ask the Expert section where you can post medical questions to the nurses, however the quickest way is to call the Support Line.
I also think it always helps to break things down into steps. Everything feels hard and overwhelming at the moment but the good thing is the cancer has been found and it is being treated. That is the most important thing. The rest is just details.
Happy to be asked anything. Another thought- if you have the NHS app then notes may have been put on there.
Take care
Jane
Yes you are right- it is only a provisional stage and grade that is given before surgery and it is not confirmed until after the post op pathology has comeback.
