Newly diagnosed with endometrial cancer and waiting for operation etc...

Thank you so much for this totally reassuring message!! I am single too and have had an offer of help and somewhere to stay to recuperate.

 You have made the OP sound so positive, it really is just what I needed to hear. It is always when you feel so fit and well and know you then have to go through something that will make you unwell for a while, rather daunting.

I am also having everything removed. I hope I will have an MRI soon so I can get a full diagnosis as to staging and if it has spread.

I do appreciate you taking the time to give me this encouragement not only for me but others that will read it too. 

Roxanna x

Linda 

dud your stage and grade stay the same after as that's another worry too 

and do you just have to have checks now 

I was told no chemo needed but maybe radiation 

Molly suec ,I am waiting for staging after histology results ,got  an appointment with surgeon 18th Jan, She said options of chemo were up to me but its more a ' mopping up" to get rid of any stray cells so I'm taking everythingvI can to get rid of anything jeft xx

Hi Roxanna

Welcome to the Womb group. I am sorry to hear of your diagnosis and all the other things you have had going on. 

Please do not feel alone as we are here to support you the best we can.

I will pop a link with some general information that you may find helpful. It should answer some of your questions.

Womb cancer booklet | Macmillan Cancer Support

It is very natural to feel scared about having the hysterectomy and I felt the same but it was very straightforward in the end, I had little pain and I recovered quickly from it. I did need some follow up treatment but am now doing ok and having 3 monthly check ups. 

The Support Line number is below and they are really nice on there if you feel like chatting things through.

If there is anything that you want to ask then please do so. If you click on my name my profile will come up and you can see my journey.

Jane

Hi Roxanana

Grades and stages can seem complicated and something that we never really think about until we are in this position.

After the biopsy and scans the doctors normally give you a provisional stage and grade. After the surgery there is some post op pathology that is looked at in more detail and will give them confirmation and more information. It is the post op pathology that is used to determine whether they recommend further treatment. 

Stage 1 is where the cancer is just within the womb. Stage 1a is when there is less than 50% invasion into the wall of the womb. Stage 1b is where the invasion is more that 50% but it is still contained.

Stage 2 is where some cancer cells have been found in the cervix.

Stage 3 is where there has been some spread outside the womb but the cancer is still in the pelvis. This is also divided into different parts depending exactly where is is.

Stage 4 is where there is some spread out of the pelvis. 

Grade 1 means the cancer cells do not look much different to normal cells and there is only slight changes.

Grade 2 means that the cells look a little more different

Grade 3 means the cells have changed a lot more. 

There are other factors they look at also such as whether there is lymphatic/vascular invasion and also the specific type of cancer it is. 

Hope this is clearer, it is how my CNS explained it to me. She also said- which was very good advice at the time- don't worry too much at this stage as worrying won't stop the grades and stages change and that it is there to help the doctors decide on the best appropriate treatments. Wait until you know for sure and then we will make a plan- is what she said to me..........I did still worry but she put it into perspective.

Jane

Hi mollysue

i was predicted a stage 1b but didn’t know the grade as the initial biopsy did not show cancerous cells. I was a bit worried because the mri showed it could be stage 3 as it was very close to my bowel. I got my results 3 weeks after the op and it was a stage 1b , it would have been a grade 1 but there was a lot of LVSI which meant it was grade 2. I was going to have external radiotherapy and brachytherapy and went through all the planning but a mutated gene showed up called the POLE mutation. My understanding is that this gene has not been recognised for very long but gives an improved prognosis so my oncologist advised that further treatment was not necessary. I am being followed up closely at the moment with 3 monthly scans and examinations. My oncologist also advised that if anything does show up they would probably use immunotherapy to treat it. As I said all the research into this is very new so I feel a bit like a guinea pig! 

Linda

Thank you so much Jane for this amazing and sensible advice. I had gathered the unusual low staging seemed to be the same for everyone and rather alarmingly higher staging is introduced much later. I have to confess that I am very worried that I haven't had a scan, be it CT or a MRI. I also see that the abdominal scars seem to be quite huge? I had fibroids removed 25 years ago and was given an incision, horizontally just below my knickers line and was hoping that would be exactly the same this time, but some of the ladies seem to have op scars from the navel or breast bone down to their public bone. That seems somewhat excessive for an organ the size of a large pear, when healthy and well? 

I am in Portugal at the moment, where I spent Christmas and have a flight booked on the 7th of January to make a pre op assessment appointment on the 9th.

 Can anyone kindly explain what I am to expect at this? My surgery is booked for January 20th, a Saturday. I am dreading the event, but it is the aftermath of it that I am loathing more as I know I shall be uncomfortable for a while and my wings clipped.

 Thank you so much for your replies to this, you are all so amazing in your support and help.

Roxanna x

I am sure they will have to do a ct or mri  scan to see what stage you are and go from there also they show up other things too which they can then assess 

Hi Roxanna   

Firstly I am sorry to hear what a rough year you are having. I am glad you have reached out to this community

 jane2511 has explained everything I'll tell you a bit about me and hope it helps you.

I had blood in my urine three times over a year before my endometrial cancer diagnosis this Summer. I was referred to urologist and had a cystoscopy in my bladder. It was all clear. But an episode of bleeding again in the Summer felt slightly different plus I was getting a slight nagging pain low down on my right side.

I had pelvic ultrasounds, biopsy of the womb and MRI/CT scans at three different appointments - in quick succession. I was originally told I had stage 1b and grade 2 cancer.

The MRI/CT scan gave an indication that the cancer was contained in my womb.

Having already had two caesareans I was told on I was having robotic laparoscopic surgery. But it was explained that it could go to abdominal surgery if needed (due to my previous surgery).

Recovery was great. In three weeks I heard my final results. Stage 1b still but down to Grade 1.

Because there was some LVSI found (some slight cancer cells found in vessels leaving my womb), I am now having 28 days of external pelvic radiotherapy. I am day 5 today! 

I wish you well for your appt.  The good old NHS will look after you the best it can. 

You'll be back out there travelling soon. In the meantime your good friend can support you during your recovery.

Take care.

Thank you Katie for this, that is brilliant that you are doing so well having been through such a great deal!! I do so hope your radiotherapy continues and that the cancer can be cast out, once and for all.

I am so grateful that you have taken the time to write a reply with all that you have got going on.  

rRoxanna x