My mother aged 73, has been suffering with extreme fatigue, weakness in legs together with extreme breathlessness and loss of appetite for a short number of months. Despite several tests arranged by the GP, including chest CT and ultrasound…… she has been struggling to carry out basic tasks herself, things that she’d usually manage to do herself without any support only a few months ago.
We became concerned when the breathlessness became worse and called for emergency help, at which point she was admitted to hospital. Further tests and scans were carried out including Pelvic CT scan and a PET, and further ultrasounds. We’ve reached a point where we’re overwhelmed by different experts telling us different things, sometimes contradictory especially in terms of the outcomes we can expect.
The tests and scans so far are pointing to malignant ovarian cancer, possibly spread to peritoneum, possible ascites. Mum has a biopsy with assisted CT arranged 21/12/23, after which we fear potential delays as a result of ongoing NHS strikes and bank holidays with Christmas and New Years.
We’re reaching out and pleading for any advice in terms of options to obtain clear diagnosis and options for rapid treatment. Who can we turn to, in order to expedite at speed, her deteriorating condition won't allow us to wait another few weeks before there's any form of decision for treatment, that's if they're even willing to. Please help with advice and guidance.
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JanetKaur
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Hi Janet, it’s really hard to get continuity of care at this time of year and the strikes are adding complexity.
Diagnosis does typically take several weeks (I think mine took about 5 weeks).
So there are two things to consider:
Diagnosis and treatment plan
Support for your Mum while the diagnosis is taking place such as oxygen, draining of ascities or pleural effusion to make her more comfortable.
It is important for her not to lose too much strength, so anything that helps her breathe and gets her eating again would be good.
They can put in semi permanent drains that just make you feel better very quickly.
Ask for her named consultant and request that these measures are put in place if they haven’t done so already. Be prepared to advocate on her behalf.
If you aren’t getting anywhere PALs is your next step. This is the patient liaison and support service at every hospital. Ring them with your concerns, they can intervene on your behalf.
I hope you get a speedy resolution for your Mum xx
Now the biopsy is done you’ll have to wait for lab reports stating which Ovarian Cancer your mums got. Ie high grade, low grade, clear cell also grade and stage of cancer. This report will be discussed at a weekly Multidisciplinary meeting where treatment will be decided.
Then Oncology consultant will meet with you for consent for Chemotherapy first then surgery finishing with Chemotherapy. It might be surgery first then Chemotherapy. Chemotherapy is usually 6 cycles arranged over 3 weekly intervals or weekly if mum is very weak.
To see where you are in the process you need to know and contact the Specialist nurse who is part of the MD team. Do chase because until meeting the Consultant treatment will not be arranged and Oncology day ward will be extra busy catching up with Christmas.
I had ascites (sounds like mum has) while waiting for the above my GP got me admitted to hospital (A&E) it did speed up my CT scan and Biopsy and then fluid drained which was a great relief. One Chemotherapy session and the ascites fluid hasn’t returned .
Where do you live? Is your mum being seen at a specialist cancer centre? If not, you can ask for a second opinion from your nearest one (e.g. Royal Marsden in London, Christie in Manchester, QEH in Birmingham, Velindre in South Wales etc.) You've hit a bit of a perfect storm, in terms of time of year, strikes, Covid etc. so please don't hesitate to push on your mum's behalf. The squeaky wheel gets the grease! Sending hugs to you both.
The breathlessness may be due to a pleural effusion and as Lindy says a drain will help. My diagnosis was slow and frustrating. I was told by two difference hospital personnel that sometimes a presentation to A &E with a ‘collapse’ is needed to speed things up!
As the others have said keep pushing and don’t be patient. It is a fight for survival.
Good luck and your Mum will benefit from your being her advocate. It is not how we imagine the NHS to work but it is in a desperate state in some departments.
Desr Janet, please do not give up. Try the best. Keep try second, third opinion which are available, also worth to try a suitable homeopathy near where she lives which might support her while she is waiting for the hospital treatment.
Hope your Mum gets the right treatment as soon as possible. All the best.
hello. My diagnosis was early December, nothing happened for what felt like an age except I had 3 abdominal drains before the eventual chemotherapy. I had apparently fallen through the net due to the Christmas holidays, my referral didnt go through to the treatment hospital. Which was odd as I had pushed and phoned several times. However once the chemo was given, 22 January, the ascites never returned. Please make sure your mam is on the ‘list’ for the MDT with a date for chemo treatment. Chase up, dont hold back. Good luck to her. X
Now the biopsy is done you’ll have to wait for lab reports stating which Ovarian Cancer your mums got. Ie high grade, low grade, clear cell also stage of cancer. This report will be discussed at a weekly Multidisciplinary meeting where treatment will be decided.
Then Oncology consultant will meet with you for consent for Chemotherapy first then surgery finishing with Chemotherapy. It might be surgery first then Chemotherapy. Chemotherapy is usually 6 cycles arranged over 3 weekly intervals or weekly if mum is very weak.
To see where you are in the process you need to know and contact the Specialist nurse who is part of the MD team. Do chase because until meeting the Consultant treatment will not be arranged and Oncology day ward will be extra busy catching up with Christmas. I
had ascites (sounds like mum has) while waiting for the above my GP got me admitted to hospital (A&E) it did speed up my CT scan and Biopsy and then fluid drained which was a great relief. One Chemotherapy session and the ascites fluid hasn’t returned .
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