Metastatic endometrial cancer

i’d be interested to hear from family and friends of those who have received a similar diagnosis to my wife’s on what their experiences were and what  treatment they were offered.

here’s her story.

Following diagnosis of endometrial cancer and treatment in 2018, full hysterectomy, radiotherapy, my wife has been having some perfunctory follow-ups, 50% over the phone and 50% face-to-face appointments for basic checks feeling of lymph nodes etc. Came down with a bad cough in Jan 2022 which calmed down but would not go away. Spoke to GP as cough lasted more than a month and prescribed cough medicine. At her last check by Gyneco oncologists at the end of June  stated no ontological concerns. Cough persisted and a month ago went back to GP. Luckily she saw an intern who was a keen student and checked through her history and noted that she had had endometrial cancer. Sent her for a chest x-ray and the very same day they did an MRI. This was followed by biopsy and PET scans. Received confirmation mid-August from lung specialist that it was metastatic endometrial cancer. Won’t go into the minutiae of it but if I personally had not picked up the phone to call up the various trusts\Gp; otherwise, we would’ve received no communication whatsoever from The NHS trust responsible for her gynaecology oncology. Told by GP we are where we are et cetera. I’m left to consult Dr.Google as is my wife. Dr Google states 75% of people with this cancer will die in the first 12 months most will not make it past five years. Spoke to her gyneco consultant who said further tests must take place on the biopsy to determine the MMR type (thank God I had consultant Dr Google so I knew what he was talking about otherwise I would never of had a clue)  they would discuss at the next MDT next week and then they will be in touch. No timeline provided about a treatment plan.

I am left with great regret about what could’ve been. A CT scan two years ago would’ve spotted it? If the GP she saw in January had bothered to look at my wife’s history would action have taken place earlier? If my wife and I had taken this more seriously when she was first treated could something have been done? I know I personally though hysterectomy = problem gone. My key takeaways:

1. any diagnosis of cancer and any treatment of cancer is a lifelong issue. It’s not like a broken leg once it’s fixed it’s gone. 
2. Communication by people with primary responsibility for following up on her cancer at this stage has been terrible. A quick phone call to say we met to discuss your case we will get back to you by X would’ve helped. Instead waiting by the phone. If I had not personally insisted on picking up the phone I’m sure we would’ve had no communication weeks after the initial diagnosis. Take back control is more than a slogan in this case. 
3.Dr Google is a very scary place. However, it also provides hope as there are emerging immunotherapy treatments which look promising. It also provides you with the jargon which will be thrown at you by specialists.

Based on my experience, we can’t trust the NHS. Not because they are bad people but they are part of a culture which view cancer patients as part of a system, a process; while we as members of this forum know them as individuals who we love dearly.

Thank you very much to those who have set up this forum to give me the opportunity to get this off my chest.