Hello Macmillan team,
Thanks for this forum.
My husband has been diagnosed with renal cell carcinoma stage 4 cancer and metastatic spread to liver, lungs and lymph nodes.
He is only 45 years and was always fit and healthy. He never ever visited GP and he had absolutely no symptoms until 2 months before diagnosis. He started to have bulge just below right rib cages and it took few weeks for NHS to do the scan and conclude.
Early July we got the news based on the report and struggled to get NHS urology consultant and moved to private with Geneis care due to panic and anxiety. Private consultants was able to arrange biopsy quickly. They were not able to classify the type of cancer and declared as unclassified RCC, biopsy was able to determine the range of spread and decide to start with immunotherapy and chemotherapy.
2 weeks after the first treatment on 4th Aug, he started to have SVT and DVT in 2 weeks one after the other and his cancer treatment had to be paused. SVT was caused because the chemo was affecting his liver and increased his CRP levels and needed antibiotics, 4 days later he had DVT with huge clot in his left leg affecting his mobility. Since surgery was deemed too risky, it was decided to dissolve with blood thinners, after 5 days of treatment he was again diagnosed with HIT as the thinner had severe reaction. Finally medication was changed and he is getting better but his cancer treatment was stopped until he is recovered.
He is recovering slowly. although the blood markers are normal to restart the treatment, private consultant is not planning to treat him until he gets discharged!
Strangely private and NHS dont work together. The private consultant is also NHS consultant, but he was refusing to talk to NHS team regarding my husband's condition. No one has holistic view of what is happening with my husband. All this time, while he got treated privately for cancer and attended NHS for emergencies, my husband was forced to liaise between NHS & private with reports, requesting blood tests, tracking the private consultants and NHS doctors which was a nightmare.
I am glad he was able to do this despite his pain, but what if he was not in a state to do so? I am not allowed to be with him 24x7, I am only allowed during visiting time (though I have work, kids and cancer patient to manage). Who could have done this if he was not in conscious state.
I am worried about this medical system. NHS had no clue about my husband's condition when we went into emergencies, private says they transferred the details to NHS.
On the other hand, private was not following up with the patient to check when treatment can be restarted.
Oncologist is on holiday this week and next appointment was given 10 days later, i.e. 2 weeks he is denied treatment though his blood markers are good enough to restart the treatment! We managed to challenge with private Genesis care, why his treatment need to be stopped and finally oncologist agreed to restart the treatment after we raised valid questions. Every day matters with cancer and just because the oncologist is going on holiday and don't have time to see him, his treatment was put on hold, How is this fair?
I am worried about his condition as it is not clear how long he got.
My question is why do we have to go through such mental stress managing private and nhs in addition to terminal illness? Is this normal for everyone? or we overreacting? How is this fair on the patients? Is this what everyone else do who are with private?? Please shed some light with this process as we are new to cancer world.
Many said NHS will be brilliant with cancer treatments, As we started with private, we do not want to change now as switching could add more delays. We need cancer growth to be arrested first. We are in dilemma as what to do, stay with private or switch to NHS.
Regards,
Hema
