Serous endometrial cancer plus arthritis

I know that pain in the groin is a classic symptom for arthritis of the hip. Before I was diagnosed with leiomyosarcoma I had been in pain in my lower back and ribs. I saw the practice nurse who said she thought it was a deep chest infection. She prescribed antibiotics but it didn't go away. I had a telephone consultation and the doctor thought it was pleurisy, again it lingered on for several weeks. I was having really bad back and stomach pain and rang the GP who said it could be pancreatitis as I'd had it before and told me to go to A and E. They thought it was a kidney stone and sent me home. I went back the next day as the pain was unbearable. This time they thought it was appendicitis and sent me for a CT scan at 2 am. It showed a mass on my uterus. It turned out to be leiomyosarcoma which is very rare and very aggressive. I now wonder if the original back pain was caused by the cancer. I will have 3 monthly scans and consultations probably for the rest of my life. Unfortunately I think that every little pain I have in the future I will think cancer. I honestly think your pain is due to the arthritis but if you are worried I'd make an appointment with your GP. Deb

Hello Deborino thank you so much for replying. I must admit I didn’t have the groin pain until the arthritis was bad so I think your right. It’s just nice to have someone say it xxx

Hi . I've also read you can get pain the the groin after Brachytherapy. (I didn't suffer with it - I just suffered a few bouts of diarrhoea)

Bring it up when you have your phone call next month but if it persists and your worried you could always give your CNS a ring.

Big hugs, Barb x

Hi, sorry to hear what your going through. I had a total hysterectomy in June 2020 then was diagnosed with stage one grade 1a endometrial cancer. However they said I needed no further treatment. I also have hip displaysia which caused arthritis in both hips and I get awful pain in my groin constantly. I know it's coming from my hips. Before my operation I had the worst lower back/pelvic pain but I always put it down to my arthritis, but that pain has gone now and just hand the groin pain.  Hope this gives you peace of mind a it. It's awful as you over think everything now. I still worry about it coming back. 

Hi, I'm just curious after reading a lot of posts,  you all seem to have follow up appointments after your operation? I know that I was fortunate to have my cancer caught in early stage, but I only had one appointment after that then was told that it's self directed after care and I had to watch out for any symptoms myself. So I feel like I cant really talk about it. Most people don't want to listen, then I feel really stupid for wanting to talk about it. I've always been an open book and probably tell people too much bit It's just me. 

Hi Rosetta,

I had 2 follow ups and nothing since. I am on the patient led referral thingy!!! I thought I was supposed to get a phone call every year, but that hasn't happened. Maybe Covid stopped it! I was IA , and am 4 years post op. I worried at first, but never think about it now!! Just get on with life!!! xxxxx

Hi Rosetta20 From the time since I've been on this forum it seems if you're stage 1A / grade 1 that means the cancer is totally contained within the womb therefore the removal of the womb has effectively removed the cancer. If you're Stage 1B that means the tumour has penetrated the muscle by more than 50%. so could have spread.

If nothing is found in lymph nodes and the Lymphovascular Space Invasion (LVSI) is zero the cancer is not thought to be likely to spread anywhere hence the patient is put on patient led referral so if you notice anything unusual you let them know. To my mind once anyone's had a cancer diagnosis it's in their mindset it can't just go away - but it does thankfully for so many.

TBH the best place to talk about it is here as we know what's going on in your mind. Sometime family and friends just can't face the reality of cancer and can't talk about it. My sister's husband had a very rare cancer and still has some problems but she only whispers about it to me when he's not there. The pressure she's under is huge as she's nowhere to let out her own fears - I've advised her join the Online Community but she doesn't want her hubby to know.

My own hubby says I shouldn't talk about it but I too am an open book. I'm not proud to say I've had cancer but I'm willing to talk about it and dispel the myth it is a death sentence. I also want women to get themselves checked out at the first sign.

Golly I'm waffling today.

Big hugs, Barb xx

Hi, I know your right. I do try not to think about it but it takes over your thoughts at times. I do feel very fortunate and grateful though as things could have been a lot worse. Thank you x

Hi Barb, Thank you for your reply. I don't mind you waffling at all ha ha I think I just worry as I didn't get a diagnosis until after my operation so I don't know if they would have checked my lymph nodes and things they wouldn't have known I'd had cancer. Or do they automatically check these things during the operation? I should have asked my Dr, but I never think of things to ask until I'm home. It is great being able to all questions here and not feel stupid. Thanks again. Noreen x

Hi Rosetta, I was told that I had a mass on my uterus at the end of may. I had an MRI, CT, attemped biopsy and they decided it was a cancerous fibroid. I had a total, open hysterectomy in July and the surgeon came to see me after and said that there was no cancer. For 10 days I was happy that I didn't have cancer. Then the CNS rang me to tell me that I had leiomyosarcoma which is a very rare, very aggressive cancer. I was stage 1A grade 2 with lymphovascular space invasion. I am under the Christie hospital in Manchester, my sarcoma consultant said that I am in remission but not cured. I will have 3 monthly scans and consultations probably for the rest of my life. He told me that it usuall metastasises to the lungs and usually within the first two years.i feel like I'm on a roundabout and can't get off. The consultant said that it doesn't usually return to the pelvis so there is no point in having chemo or radiotherapy. I couldn't take in the LVSI and didn't ask the right questions. My younger daughter is a scientist with a biomedical sciences degree and is coming with me for my next consultation. I wish you well, Deb