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Hi Lesley

This group is there for you whether you have been through, are going through now or have tests or treatment to come.  The emotional side cannot be underestimated-it it like being on a roller coaster especially if like me you seem to have been feeling fit and well.  I haven’t had an MRI scan or x-ray either so try not to worry about that-easier said than done I know.  Take care 

Thank you for your reply. I shall ask the oncologist when I see her on Wednesday and let you know what she says. Maybe not all have them.

Hi Lesley Ann from another Lesley!  I had my surgery 4 years ago, and was Stage 1a Grade 2 as I had LVSI and therefore was advised to have 25 rounds of external radiotherapy and 2 of brachytherapy.  My GP didn't put me on the 2 week Pathway that she should have done when I went to see her with pink spotting and a small bleed (I was 61 at the time) so I waited 3 weeks for the first scans but then things moved along as they should have sort of.  I did have an MRI after the second hysteroscopy under GA as not enough sample was taken at the first one I had awake.  That was apparently to get an idea of Staging.  I was under the impression that as it was less than half way through the uturus wall surgery was all I would need, I had never heard of LVSI and so was completely shocked when told a few weeks after surgery that some cells were in my system and I would need further treatment.  I was then sent for a CT scan of chest, abdomen and pelvis and then the treatment began some weeks later.  I won't lie and say it was easy for me because it wasn't, but I have M.E. and Fibromyalgia and also Irritable Bowel Syndrome so I did struggle with tiredness (it was a  4 or 5 hour round trip by car every day) and bowel problems, which have now become long term side effects/damage plus some bladder issues too.  Others manage better than me and any initial side effects clear up, we are all different!

I hope all goes well for you when you start your treatment.  

Hugs, Lesley xx

Hi Lesley Ann, bless you and welcome to the group. I had an MRI and chest X ray after my biopsy from my GA hysteroscopy indicated grade 1 stage 1a cancer - they were done merely to check to see if it had spread. Have you tried calling the Macmillan help line? They’re very good. You may also have a team of specialist nurses that you can call when you’re feeling anxious (the team I call works Mon-Fri only but the Macmillan phone line is open at weekends too)

Hi Lesley, welcome to this forum. My story is very similar to yours. July 2020, slight smears of pink in a small discharge, phoned surgery, nurse put me straight onto the two week pathway. Had a transvaginal scan, doc thought she could see something (which we all thought was a polyp) and took a biopsy. Oh no, it was a cancer diagnosis which left me so shocked I couldn’t speak, the thought of it had never crossed my mind. I had  a chest  x Ray but didn’t have any further scans, just straight to the hysterectomy, keyhole surgery.

I was very disappointed when my surgeon told me it was Grade 1 Stage 1b and he advised radiotherapy as “ belt and braces” treatment to reduce the chances of recurrence. This was internal therapy, known as brachytherapy presumably because I didn’t have vascular invasion.  I had three sessions, the first one included a ct scan.  There were  no real problems and here I am  18 months later on feeling well. I am on three/four monthly checks for the next five years and so far most of them have been telephone consults.

I know how you feel about talking to other people, they all react in different ways. I found it very difficult to even tell anyone at first cos it made it all seem more real, whilst I was still in a stage of utter disbelief.  I think most of us here have worries that IT has really gone. We just have to take care of our bodies and listen to what they tell us. As you get further from the op you start to worry a bit less, but early days for you, your brain is still dealing with all the trauma of these last few weeks.

I hope your treatment goes well, good luck, 

Viv x

Thank you Lesley. My staging has been worked out by the dissection of my uterus post surgery. I had LVSI too, but have been told that my chances of the cancer recurring is "good" without radiotherapy, but not "fantastic", so treatment is "recommended". I'm sorry you have long term issues. It's something I'm scared of, but I don't feel I have a choice.

Thanks MarmiteFan59. I didn't really have time to have scans or x-rays, because I had my op done 10 days after my hysteroscopy, which I'm grateful for, as it didn't give me time to freak out. My cancer nurses at the NHS hospital are available 24/7. I think, as I have my initial appointment for radiotherapy in 4 days time, I'll ask them all the questions. I'm collecting quite a few!

Thank you Viv. To be honest it didn't hit me like a bus. I was almost ready for the diagnosis as there is so much, yet all different types of cancer in my father's line - stomach (grandfather), lung (father), bowel, breast, tongue (his siblings), brain tumour (his nephew) and now a male cousin who has not divulged the nature of his cancer, but he's been in hospital for two months. Plus me. My tumour has been tested for genetic markers, but they found none. I'm so pleased you are feeling well after 18 months, and hope it continues.

Hi Lesley Ann and a warm welcome to this lovely group of supportive ladies. It's good to get it off your chest somehow you can't really tell friends and family as often all they say is I'm sorry whereas here, we pretty well know how you feel and what you you want to hear!

My symptoms were the same as yours, pinky mucous discharge, menopause long over and when I was told after tests it was cancer I couldn't believe it, no-one in my biological family has ever had it.

I had the same treatments as Viv Jigsaw33 at the same time last year. I was stage 1b/ grade 3. No lymph nodes and no LVSI. I had 3 x brachytherapy sessions. I now wish I'd been offered chemotherapy as I was grade 3 (Aggressive) as just over a year later it's recurred, I knew something was up in late August but my quarterly check-ups, the last done on 1st November showed me to be clear in the gynae area. Trouble is the little b****rs had pitched camp in the next room as it where. at CT scan ordered by my GP confirmed it. I've just started chemo on 6th December. Sadly I'm now classed as incurable but I'll still keep battling on. 

I can understand you feeling pretty hacked off but, to be honest I'd rather err on the side of caution. 5 weeks will be over in no time and you'll be able to put up with a little more disruption to routine, it'll be worth it. 

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username. (Just copy and paste your first post)

Sending hugs, Barb x

Hi Lesley

It does help to write it down - I found the same - I don’t think we realise how much we have been through over the last few weeks, physically and emotionally.  I just wanted it out of me too and had my laparoscopic hysterectomy just over 4 weeks ago - like you I recovered really well, though I did have the dreaded constipation

I first had bleeding at the end of July, so it took longer to get into gear for me and I do worry that the delay has caused extra spread.  At first my gp could see a polyp on my cervix, so I was sent for scans etc to eliminate anything else - then of course they found something wrong at the top of my uterus and it was a complete shock.  After the hysterectomy I was told I am stage 1a, but grade 3, so I will need chemo and brachytherapy and I go next week to find out exactly what is in store for me.

I understand exactly how you feel about further treatment.....and feeling that we might never feel this well again!  I feel just the same and it upsets me too to think about it.  I feel fine, can do everything- although I still feel a twinge if I overdo it.  The thought of going through these next treatments and being left with lasting side effects is hard to get my head around - yet I know that I must take the advice given.

Take care x