Hello

Hi Holly,

Welcome to the group, we are all very supportive and there are lots of lovely ladies that have been/are going through the same thing, so have experience and can advise. If you would like to read any of our histories please click on our usernames to see our profile. It is a good idea to write a profile yourself as it can save you repeating yourself. If you've not been given a Macmillan booklet yet, it is available on the Macmillan site - Understanding Endometrial Cancer. This is very good and I used it a lot. As you've found out Dr Google is not always a good thing, tempting though it is.

I know you must be devastated with the thoughts of having to go through all this again. Some of the ladies on here have Serous and will probably be able to advise you better than me. The signs are there that it has been caught early but the staging can change after hysterectomy when the results come back. I know it's hard but try not to look too far ahead re treatment/chemo etc, just take it a bit at a time as it can be overwhelming. Is there someone you can talk to about your worries as putting on a brave face will be exhausting and you need support at this time. I've found that bottled up feelings eventually explode, usually to the wrong person. I was used to putting everyone first but that had to change along the way and I look after myself a bit better now. Keep in touch, there is always lots of support here. Hope you find out the next steps soon,

A x

Hi Holly1978  and welcome to our supportive group of ladies. We've all been there so you are not alone.

I was diagnosed with stage 1b, grade 3 serous after my hysterectomy in September 2020. I had further treatment of 3 Brachytherapy. (Internal radiotherapy). I ‘d had 3 quarterly follow-ups with internal examinations and thought all was well, that’s my brush with cancer over.

Sadly I started to experience abdominal pain and a CT scan revealed my cancer has recurred with metastatic deposits in pelvis, peritoneum, omentum and vaginal cuff with lesions on liver and spleen. I then had 6 cycles of chemo, not hard, just unpleasant. A scan showed barely visible deposits but I was told it would come back.

Less than 2 months later I again had abdominal pain and scans revealed it was back again. In addition my liver and lungs were affected. Too soon for more chemo. I'm now on a immunotherapy course as a compassionate case. If you read my bio (click on my id) you’ll see I had a hard time to begin with for the first 3 cycles but things are gradually improving. The immunotherapy course is past the trial stage and the price negotiated between the manufacturers and the NHS and I feel very grateful to be on it despite how rough I’ve been feeling. No pain, no gain. Feedback has been positive.

I’m sorry I can’t sugar coat this. Other ladies have been diagnosed the same and happily are pretty well back to normal lives. In hindsight I should have demanded chemotherapy at the outset but I was led by what I was told. The outcome may have proved different. I’m incurable but treatable and hopefully my scans at the end of February will show an improvement. 

I have a 30 minute infusion every 21 days which teaches my immune system to attach the cells and a daily tablet which is a cancer targeting drug. Due to side effects the dose was reduced from 20mg to 10, then 8 now were increasing to 12mg. I’ll be on it for 2 years.

Don’t consult Dr Google, if you’ve any questions ask here. I haven’t been around much as I was poorly but now I'm improving.

Hugs, Barb xx

Thankyou for the reply and the advice, I will certainly read the booklet, I used to tell myself with my previous cancers one stage at a time I will deal with everything one day at a time, this just feels so different somehow, maybe it’s the shock everything’s happening so quickly I’ve had the phone call today to discuss my operation, in a few days sooner the better I keep telling myself I’ve been reading through the post it seems a wonderful group with people supporting one another with there experiences and knowledge x

Hi Holly,

I recently completed my treatment for Serous Endometrial cancer and am just waiting for a CT scan to see if it’s all worked so I understand how you must be feeling. Please feel free to click on my username and have a look at my story.

Like sistermoon I was also given the MacMillan booklet on Endometrial cancer which I found very useful and easy to understand. Up to that point I hadn’t realised there were different types and it wasn’t easy to read serous was an aggressive type. I also suggest that you resist googling, I did exactly the same and it worried me even more!

Please don’t hesitate to ask me any questions you may have.

Look after yourself

Thankyou you so much everybody is so kind and definitely understand how I’m feeling right now, i will do that thanks x

Hi Holly, I was diagnosed with mix serous and endometroid cancer in late July 2022. It was a shock as I didn't have hardly any risk factors apart from being a bit older at 69. My pre op CT and MRI scans were clear and I was given a provisional stage 1a grade 3 diagnosis. I'm not an expert but it seems if there is an element of serous cancer then it is grade 3. I mentioned my concerns to the surgeon as I'd read that serous can be aggressive but she preferred to describe as more unpredictable. I had a total hysterectomy - uterus, ovaries, fallopian tubes and cervix removed which went ahead without any complications.At my follow up appointment my surgeon advised that the cancer had not breached the wall of the uterus and there was less than 50% invasion so the initial staging and grading remained the same. I was recommended by the oncologist to have PDR brachytherapy to reduce the chances of of the cancer returning in the vaginal vault. I completed this 3 weeks ago. The oncologist was hopeful I wouldn't need any more treatment. It's been an anxious journey with quite a few 'lows' and the uncertainty about my future remains but I do feel I've received the best care and support from the Jessops Wing at the Hallamshire hospital in Sheffield as well as the Weston Park Cancer Hospital. I have my 3 month follow up appointment with the surgeon tomorrow. It's completely natural to feel you need to vent and this is the ideal forum to do this, especially when, as you say, you don't want to burden your family. So feel free to voice your concerns  or ask for any advice. Good luck with your treatment.  

Thankyou so much for your advice, I’ve just read your story I have to admit that it got me very emotional but it was so helpful, and the one thing that shines through is your determination and your still here fighting I only hope i can be just as strong x

Thankyou, just listening to your story gives me a sense of hope and that I’m not alone, in 2007 and in 2009 when I had breast cancer I didn’t want to know anything I just wanted to get on with it, didn’t want to talk about it or afterwards and that’s what I did, it’s so different now and I cannot explain why I just know I cannot do it alone or without talking about it to other people so glad I’ve found this community already I feel I’m not alone x

Hello 

Hope your appointment goes well today x

Hi Madesp, thanks. The surgeon was happy with my progress to date. I'm still a bit sore and tired from the PDR brachytherapy which only finished 3 weeks ago but otherwise feeling OK. The CNS sat in on the appointment so always good to see her as well. I try to concentrate on any positives but it's difficult not to wonder about what may or may not happen in the future. It's a cliche but I suppose it's about taking one day at a time!