Long wait for treatment plan

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Hello,  My husband has recently been diagnosed with cancer in his right kidney. He also has some nodules in his chest which may be related. He had a CT needle biopsy of his lungs on Friday and has to wait until after the MDT this coming Thursday for the result. 

I'm posting because it has taken months to get to this point. He's had bad back pain for over 7 months since finishing treatment for prostate cancer and was prescribed physio as they thought it was muscular.

Then in November he developed a bad cough and was breathless. We went to A&E and he had a CT scan which flagged up possible cancer ( given his past history with recent prostate cancer and before that, throat cancer 10 years ago) or a chest infection. He was prescribed anti biotics and told to come back in 6 weeks for another CT scan. During those 6 weeks he was prescribed more anti biotics, had an echocardiogram and angiogram but his heart looked fine. When he finally went for his CT scan at 6 weeks there were still unexplained shadows and nodules on both lungs. He had another scan a few days later, this time of his pelvis/abdomen and this showed Kidney cancer.

On Friday just gone, he had a CT needle biopsy of his lungs and now has to wait another week for results.

He has a worrying, worsening cough and is now saying there's not enough air flow in the house and wants me to open windows. I'm so worried about the treatment plan taking so incredibly long. His cough now has a wheeze sound. Has anyone else experienced this incredibly long wait and does anyone have any advice on what to do re speeding things up especially now he's saying there's not enough air, I'm so worried. Would appreciate any advice. 

  • Your poor husband... what a horrible time he is having. And you too. I am so sorry. The NHS is in chaos really... lovely people but a quite broken system. There is this 62 day window which in theory is the maximum time allowed between referral and treatment in cancer cases. It appears a lot of people are starting to fall outside this now...it was in the news yesterday. What I learned through my recent kidney cancer "journey" is how much one has to manage it oneself and persist and insist. Always with firm politeness, never anger or rudeness, but not letting things go. Also throwing oneself on the mercy of all the professionals in the mix... being honest about the stress levels and huge worries. Sadly... it makes a difference when you speak up louder than others and express your emotions.. It shouldn't but it seems it does. I called another consultant in the Urology team .. not my surgeon .. in his private practice one time just to get some information sooner via a phone consultation and his secretary sent me an email with the info I had waited weeks for from the hospital! I had to pay but it was worth it. We sadly have to be the one who doesn't just wait to be told... we have to be our own advocate these days in an overstretched and underfunded NHS. I found communication between departments was poor and I often had to make calls to ask what was happening and why I had not heard. Best of luck... I hope things move faster from now. Tilly

  • Thank you so much for taking the time to read my post and reply Tilly. I found your words incredibly reasurring and will definatley take your advice. I hope your 'journey' is going ok. 

    Sending love and very best wishes 

  • Thank you. Slowly getting there. At 73 it takes rather longer to recover from surgery. I really hope that things speed up for your husband. He should be referred to see the cancer nurse team attached to the relevant department and consultant once a treatment plan is decided. Make good use of them.. I found mine to be a helpful and sympathetic ear and a reassuring point of contact between myself and the consultant since my operation. Xx 

  • Thank you so much Tilly. I hope you're doing ok. I really appreciate you taking the time to reply especially as you're going through so much too. My husband is a similar age and I really appreciate how tough all this treatment is to go through. 

    I just wondered if you might be able to suggest a food supplement at all while we wait for the MDT results. When my husband had throat cancer 10 years ago there was something called fortisip? Wonder if I can get something like it in boots perhaps. It's taking so long to speak to anyone about his diagnosis. Somehow he managed to walk to the GP yesterday who prescribed a 3rd lot of anti biotics for his cough and a linctus together with yest another chest Xray. He called back quickly after the chest Xray sounding very concerned and wanting to know what he'd been told so far. As we've hardly been told anything we need to continue waiting until after the MDT on Thurs. Meanwhile, I'm just trying to be as proactive as possible and find ways of encouraging him to eat. 

    So sorry for what has turned into a long message Tilly. It was only meant to be a few lines!

    Wishing you well and thank you so much for the support you're giving on this site. You have no idea how reasurring it is. x

  • It is goid we have each other to make us feel less alone with it all xx I may be wrong but I think a gp can prescribe a food supplement like Fortisip. They could certainly advise/recommend. Might be worth a separate post to ask the forum here, as others must have needed such things and can maybe recommend and even give you a direct llink for ordering online. 

  • Thanks Tilly. Appreciate your advice x