Uterine leiomyosarcoma

Ah thanks Hazel. I really hope not too but have a sinking feeling. Sorry to hear you need another operation and thinking of you x

Hi Hazel, I was looking through this Blog and was interested in your story and updates. My partner has diagnosed in 2021 with Leiomyosarcoma of the Uterus stage 1b. She had all the relevant biopsy prior to having a total laparoscopic hysterectomy  and sadly last December 2023 was told on the findings of a routine follow up scan , a liver lesion was discovered, which they did at her local hospital a biopsy and confirmed it was Leiomyosarcoma originating from her previous womb cancer of 2021 . She then went on to have a PET scan which revealed 2 further pelvic mets. She is currently under UCLH and has been on a punishing regime of chemotherapy, Doxorubicin and Decarbazine to which she has had 5 sessions out of 6 planned at 3 week intervals and 2 sessions per week which is 1 dose of Doxorubicin and 2 doses of Decarbazine on consecutive days . The liver lesion had been growing rapidly in the interim period of scans and diagnosis and referrals, and the MDT team had decided they could not tackle the liver tumor in March as it was 55mm diameter, so they wanted to try shrinking it and then possibly ablation ! They were not as concerned with the pelvic bone mets as there were small, but my partner had a interim CT liver scan after session 3 to see what was happening, at the half way stage, and although the lesion had not grown, neither has it shrunk ! so its just stable at present. Hopefully we are praying that once the last session is completed and further PET/CT scans are done early July, the MDT team will have some further options. I have researched so much on LMS and just how aggressive it has proven to be and resistant to traditional  treatments like chemo. My partner is suffering sever fatigue and has also had a recent blood transfusion as her hemoglobin was low prior to session 5 chemo starting so they gave her some additional red blood cells which has slightly improved her breathlessness , which was debilitating along with the fatigue.

Kindest regards Stu. C   

hi i have been diagnosed this week 

In April 21 i attended a&e on two consecutive days with pain radiating from my back into my abdomen. I had been told by my gp that i had a chest infection several weeks earlier and was given antibiotics but it didnt improve. I had a telephone consultation when he said it was probably pluerisy. At a&e the first visit they said it was a kidney stone. The next day was worse and they thought it was appendicitis so did a CT which showed a mass on my womb. They transferred me straight to the womens centre and i saw a gynae surgeon who said i had endometreal cancer. They had a MDT with the Christie in manchester who said i needed surgury asap. They said it was a cancerous fibroid. Apparently cancer in a fibroid is always leiomyosarcoma. My mets came 18 months after the hysterectomy. A 5cm one on my psaos muscle and a 10cm one on my iliac vein, both in my pelvis and both inoperable. I am on my 4th chemo regimen. First was doxorubicin, 2nd gem/tax, 3rd Dacarbazine and now on trabectadin. Unfortunately all of them have caused problems with my neutrophils and platelets which means I’ve missed several treatments until they have improved. 

I am so sorry to hear of this and wish you every success in the treatment plan your hospital puts forward for you. My partner who has Leiomyosarcoma is currently hospitalized with a infection as she has become neutropenic and has virtually no immune system due to the chemo effects. She is being given penicillin infusions to fight the infection ,so I am hoping she is released from our local emergency department soon. Its so debilitating for her and the fatigue she is suffering is severe. She had a hemoglobin blood transfusion at her last chemo session at UCLH last week as her red blood cells were dangerously low, and I am pleased to say her shortness of breath she was getting due to lack of oxygen has improved as her bloods were checked last night and her red blood cell count has improved but still not where it should be . We have to keep positive all of us !  

Hi to you and I am saddened to learn of your diagnosis as well. Its a terribly tough time for you like others including my partner. She is coming to the end of her initial 6 rounds of Doxorubicin & Decarbazine, in 2 weeks time then has more CT/PET scans booked and a face to face with UCLH Oncologist. She is now neutropenic as well and is on a anti biotic drip at our local A and E for a infection as her white blood cells are extremely low. I am hoping she will be discharged later today but she had a temperature of  38.2 degrees yesterday so I took her to hospital and they rushed her onto a drip immediately and are doing blood tests and cultures trying to establish the cause. She had a hemoglobin blood transfusion last week at UCLH on her second day of chemo as red cells also very low but this has improved her being breathless.

I feel for you and everyone who is suffering these awful side effects and the terrible cancer and its harsh treatments which are very debilitating. Good luck to you and I wish your treatment plan every success

Stu C    

thank you fort our reply i wish your wife better soon i am sending her love and strength, i am still none the wiser with a treatment plan, if i am honest i am buring me head in the sand if i don’t think about it then it’s not happening o am not sure i can face it 

Hi, its terribly tough to even get your head around the complexity of what lies ahead. My partner is having her number 6 cycle reviewed and postponed next week as she is still in our local  hospital running a high temperature, been there almost a week now and they cannot seem to sort it. She is having constant antibiotics and paracetamol infusions. Her bloods are slowly recovering but her neutrophil level was as low as 0.2 on Sunday and her platelets are only 31 today so slowly creeping up. She was given another unit of red blood cells on Saturday as well as her HG levels were 78, the lowest they have sank too to date, but are back up to 93 today, and she is wiped out with fatigue. All I can say is be strong in mind that thoughts that the medical world is on your side and got your back, as worrying as it will be, your never alone .

Take care 

Stu C