long wait for oncology chemo appointment and have ovarian stage 3 C cancer diagnosis

my mom has been diagnosed with stage 3 C ovarian cancer on 4.11.24 we were referred to the oncology dept and was told to expect contact within 2 weeks . after 2 weeks my dad chased and was told it could now be 4 weeks.  my mom became very swollen, I wasn't in the original appointment but as wasn't drained in her initial visit thought this was normal - mom got to the point where her skin was so tight I need to do something , dad left a voice message for the nurses on 2.12.24 and no response , on 3/4th December I called  and left messages for the cancer nurses and any other department contact numbers I could find to highlight the excessive swelling with no response , I contacted the PA of the oncologist we were being referred to and was told my mom had been pencilled in for 21.1.25 for first contact with the chemo department she told me the main consultant was on annual leave and with Christmas ,it had created a back log- and that I would need to contact there gyno department as I she wasn't yet under oncology ,  I called again any number I could with no luck -  on 4.12.24 finally I took my mom and dad to A & E and after waiting for 12 hours in A & E was finally taken to the gyno department . I made the doctor aware of the dates we had been given and she said she would look into it for me . on 5.12.24 am the consultants visited mom - she had severe ascites and swelling of the legs - I questioned why we had to sit in A & E for 12 hours just to be seen ( my parents are 76 and dad 80 ) and also stated the dates we had been given and the stage of cancer we had , what would the outcome be - we were told that as he was a gyno consultant he shouldn't be having the conversation with us but in his experience it wouldn't be a good outcome - we are all left desperate, frustrated, upset , angry, let down - the gyno dept have arranged a scan today ( 6.12.24) and if possible they will drain mom - I don't feel strong enough to fight this but I feel I have to for mom - can anyone please give me any advice - I am visiting pals today too make a complaint and possibly try to get a referral to a different area - the gyno team have been good with us and say they share the same frustrations but this isn't getting mom the treatment she needs now - heartbroken.

  • the original plan was to do chemo and if shrunk they would operate 

  • My wife was also referred and eventually diagnosed with stage 3C ovarian cancer back on 1st February 2024 and her treatment started 54 days later on the 26th March. The NHS has an obligation that the time between referral and start a treatment is 62 days. I remember the agonising wait that I did think that treatment had needed to start a lot sooner but the oncologists need to first identify the grade of cancer through a biopsy and where it has spread and then they can determine the type of treatment that she would need (it sounds like from my own wife's experience that it was contained within a peritoneal cavity although was a lesion on the liver which was larger than 2 centimeters). However, the oncology doctor had identified that the secondary cancers were all the same type and hence when the chemotherapy started that it would dissolve and inactivate all the identical masses and a few weeks delay would not change the end outcome. It had so turned out that my wife was given a lot more chemotherapy that she would have needed to compensate for not having debulking surgery but what she had in her treatment had significantly shrunk the Cancer before inactivating at the end of the treatment. If it is the high grade serous carcinoma which is the most common type of ovarian cancer then that does respond well to treatment. They should also monitor her CA125 levels where if they are above 35 will be able to use that to monitor her treatment and these should start to come down as soon as the treatment starts. My wife was given Paclitaxol and Carboplatin which were the two main chemotherapy drugs where the first one stops the cancer cells dividing and the second one alters the DNA to stop the cancer cells forming in the first place. She had her chemotherapy on a three-week cycle where she would have the Paclitaxol on a weekly basis but would have the Carboplatin every three weeks. She was also having an immunotherapy drug called Avastin (also known as Bevacizumab) where her oncology doctor had told her that this enhances the effect of the chemotherapy during treatment but also captures proteins release by the cancer cells to stop them forming new blood vessels that would otherwise feed the cancer. The desired effect of this was to allow the cancer cells to die off and she had continued with Avastin to effectively mop up any cancer cells that had been missed in the body from the chemotherapy. Although she had inactivated all the cancer, unfortunately despite being given years to live, she would have to undergo monitoring and possible further treatment for the rest of her life has the oncology doctor had indicated that what she had was incurable but remains treatable. Additionally in the post treatment era, she would remain on their system and they would be able to identify long before she would have any further symptoms should the Cancer come back and undergo further treatment if necessary. However, my wife has suffered significant mental health issues in recent months and this might be something that your mother may have to also address once the initial cancer treatment is complete.