Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Newly diagnosed post biopsy Grade 1 Endometrial Cancer

Nina5252
Posted by

Hi

I have recently been diagnosed with Grade 1 Endometrial Cancer by Biopsy. I am waiting to go for a CT scan to Stage it..I am worried as I am not having the MRI scan aswell, the reason for this is I am extremely claustrophobic and having the MRI means sedation. To organise this would take longer, so CT is all that I need. My consultant did speak with the radiologist and said that as it is Grade 1 it should be fine.

I was in complete shock when I go the diagnosis and went into melt down, then was emotionally exhausted aftertelling my family and friends. I am eager to hear about other peoples experiences in relation to grading and staging, 

Thankyou

Nina

Kerby
Posted by

Hi Nina,

I’m so sorry you’re going through this- it’s understandable to be worried/ nervous after getting your initial results! 

I'm in a similar position, I’m 25 and was diagnosed with Grade 1 Endometrial Cancer 3 months ago via a biopsy. After the diagnosis, I had to have a MRI. They use this scan to make sure it hasn’t spread to other areas, but as we’re only Grade 1’s the likelihood of this is slim. I think of your consultant had any real concern then you would have to have the MRI, I would imagine the CT scan will give them the similar result they require. 

I’ve decided not to go down the hysterectomy route just yet, me and my partner were trying for children before my biopsy and we still have a little bit of hope that we may one day be able to have our own. Instead I’m trialling a hormone treatment, I have the Mirena coil fitted and I take high hormone tablets twice a day with the hope that this will cure the cancer. My 3 month biopsy and appointment with the consultant is coming up at the end of this month.

Everything moves so quickly from receiving the initial cancer shock, it’s difficult to understand what’s going on/ easy to panic! You’ll feel exhausted and frustrated, it’s not fair that we’re going through this. Safe to say, I completely freaked out after receiving my result, it’s easy to feel lost and alone in this process. I had found it difficult to talk to friends and family about anything that’s going on, but I found some incredibly women on here that have helped me understand some of the terms and advise me on what to expect in the future! It’s amazing that you’ve told your friends and family what’s going on, they will be able to give you the support you need while going through this journey! 

Ive found, the most helpful thing to do is: if you have any concerns or worries, write them down before I next see your consultant so you can remember to ask them at your appointment. If your consultant is anything like mine, they are throwing information at you at 100mph, (I’m sure this isn’t the case, but definitely feels this way) So always try to go to your appointments with either your partner, family member or friend- they will take in the information better than you will! 

If you’re mentally struggling with the diagnosis, you can speak to either your Macmillan nurse (if you have one) or your GP- I get monthly calls from my GP to check up on how I’m handling everything, if I’m coping mentally, and if there’s any extra support they can give me. It’s worth knowing that you can have extra support if you ever need it!

Kerby x

Arla
Posted by

Hi Nina,

I had a MRI scan and didn't have a ct scan, I had grade 1 stage 1a cancer. The surgeon gave me his best guess stage at my first appointment after my hysteroscopy and the MRI backed that up but he did say that the only way to confirm the stage and grade was with the post op histology after my hysterectomy, my final results were as he had told me. I think others have a ct scan and no MRI scan, it seems to differ by area and individual. 

Try to focus on your appointments and your surgery to distract yourself from wondering, it'll be a few weeks after the surgery until you get your final results, I found it easier taking one day at a time and one appointment at a time as guessing what was going to happen to me just had me in terror when the reality was so much easier and better. I was really scared about everything but nothing was as bad as I had feared, most people agree that the op is nowhere as bad as they expected.

Did they give you any indication of stage at your appointment, or tell you about what they found? 

Xx

oldady
Posted by

HI ,

It is over 4 years since I first visited this forum after my hysterectomy.  During this time I have read posts by many people, some have CT and MRI some only one or the other.  Several have been booked for an MRI and because of feelings of claustrophobia have felt unable to proceed with it and then had a CT scan instead.   I had only a MRI scan, was put in feet first so my head was outside most of the time, and found it noisy but bearable.  .   I think either scan gives the surgeons a good idea of what to expect during your surgery and how to proceed and it may .influence the decision as to what hospital or surgical team does the op.   

You may not get any information about the stage after the scan as the full staging can only be given after surgery  when the histology is available. 

My hospital had a backlog so I had quite a wait for my scan,  and in the event my surgery was only days later, not because it was considered particularly urgent but because the "target date" was imminent !  

There is a lot of waiting at each part of the process and we all find different ways of coping.  I felt unable to tell my friends and it was almost as though it was all happening to someone else, not me at all but I was all too aware of the stress that my family felt.  

Good Luck

XXXX

Anne

(Class of 2015!)

NannyAnny
Posted by

Hi Nina,

I'm guessing you are young, whereas I am in my 70's. I had both scans, and glad I did, in a way. Apart from looking at the cancer they found my thyroid was multiplying down the back of my throat!! I had to have that checked out as well as being treated for the cancer. So, its like having an MOT!!!

Before my operation my surgeon thought I was Stage 1a, grade 2, and it stayed that way after the operation. So, thankfully, no more treatment!! And the operation was way better than I expected. Far less painful than having my tonsils out 50 years ago!!! I had keyhole surgery, which is the best invention ever!!!

I was actually called for the operation earlier than they said, which put the wind up me. They then cancelled it at the last minute in favour of an emergency!! So, be prepared for anything!!! I think they just try to fill slots as best they can.

I can't say I was overly worried about the cancer thing. My husband survived throat cancer 13 years ago, and my daughter breast cancer 6 years ago, so when it came to my turn I was a bit blase about it all and knew roughly the routine!!

All the best xxxx

Nina5252
Posted by

Hi Kerby

Thankyou so much for replying. My GP only knows because I called them and said. The hospital dosent send everything to them. I have yet to speak to the Cancer Nurse, I left a message for her. Xx

Nina5252
Posted by

Hi

The Consultant said when she did the Hysteroscopy it was very thickened and looked suspicious. She took a large biopsy she said. It came back positive for Grade 2 Endometrial Cancer. CT will Stage it. 

Nina5252
Posted by

Hi

Thankyou I think It seems overall staging is after surgery. I am very anxious to get this done. I am very worried about the biopsy post bleeding. I bled for 4 days after biopsy and now I am worried there are disturbed cancer cells?

Nina5252
Posted by

Hi

Thankyou I think It seems overall staging is after surgery. I am very anxious to get this done. I am very worried about the biopsy post bleeding. I bled for 4 days after biopsy and now I am worried there are disturbed cancer cells?

Rahman
Posted by

Hi Nina

i am very sorry to hear about your news. 

I was diagnosed in August 2018. I had scan and 

MRI scan. I understand from my doctor friend that MRI gives doctors detailed pictures of the disease. It is better to take advice from your consultant. 

I wen into hospital for something else and accidentally found the cancer. I had a stage 4 and high grade cancer. I had a radical surgery and feel much better. My last scan showed no disease. It is important to be positive and focus. Once you will have the treatment plan. You will feel lot better. 

Try to stay positive and we are all here to listen to you and share our experiences. 

Loads of love and best wishes

Rahman xxx

Arla
Posted by

Hi Nina,

I had pretty non stop bleeding with some giant clots before and after my biopsies (I had one without a camera and one with a camera) and I know now that my tumour in my womb was a fair size, it didn't change anything for me, I still only had the operation. 

After the surgery they done what they call washings in my abdominal area and they removed the fluid and tested it for cancer cells, I think that's routine but you could ask at your next appointment about it. Some women have lymph node sampling too, in my case, due to my age and grade, they said it was better not to sample my nodes, you might want to ask about that too. They took my ovaries and my cervix and tubes but some people keep their cervix and ovaries, so that's something else you might want to ask about. As a plus, no cervix means no more smear tests.

keep sharing any worries, we have probably worried about the same things.

xxx

Nina5252
Posted by

Rahman

That is amazing what you have achieved...your words givr me hope.. Thank you. Xx

Nina5252
Posted by

Hi

I have heard about the Sentinel Node Sampling which I am going to speak to them about. The washing I didn't know about and I eill definately ask them about it. My worry is after the biopsy I had 4 days of bleeding...I feel may be some cancer cells may be in my cervix...I don't know..but I was going to ask if that should be removed also...thankyou for your reply it is very helpful

oldady
Posted by

HI 

 I am sure that most surgeons will remove the cervix when they do the hysterectomy.  

There is more variation as far as lymph nodes is concerned.  Sentinel node biopsy, where dye is injected to identify the nearest node to the tumour and only that node is tested at first, seems to be uncommon for womb cancer although it is used a lot for breast cancer.  

There is some controversy about the value of removing lymph nodes unless there is a good reason to think they may be affected as there can be a risk of side effects like lymphoedema.  So you may want to ask whether they feel node removal is necessary in your case. It is probably not really needed for a Grade 1, early stage cancer.  I was grade 2 and had no nodes removed but the histology after surgery showed there was some  LVSI (Lymph Vascular Space Invasion) which means that some cancer cells had been found in  the lymph channels so I had pelvic  radiotherapy to deal with any stray cells.

XXXX

Anne

(Class of 2015!)

Nina5252
Posted by

Sorry that should read Grade 1 not 2