RCC

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Hi, I was diagnosed with a CT with a 6.5cm T3AN0M0 RCC on 18/10/22. After initially being told the surgery would be 6-8 weeks, I am now being told nothing has been booked yet and won't be looked at until late Jan/ early Feb. I have pains in my abdomen which are getting worse day by day, yet the hospital dont seem bothered by it all. In my mind something has surely got to be changing as it is progressively getting worse. I've asked if there's anyway I can extradite the surgery, I'm having an open partial nephrectomy as I'm only 36 so want to preserve as much kidney function as possible, only to be told 'yea go private' and made a joke out of it! They also found a lesion on the tail of my pancreas, was discussed in 2 MDT meetings and both were concerned about the lesion and was actually told it looks like it could be pancreatic cancer as well. So that was referred to a different specialist for an endoscopic ultrasound with fine needle aspiration, now I never had that procedure as this specialist looked at the CT images and suspects it is an accessory spleen, and has requested I have an mri scan on this in 6 months yo check. Which doesn't really fill me with confidence for 2 reasons, 1 being that 2 MDT meetings were held and were concerned in both about pancreatic cancer, 2 that 1 other specialist has decided over the other teams of specialist and oncologists, at the same time requesting I have a scan in 6 months to check which to me sounds like he's not confident in that diagnosis.

I'm worried that the cancer is progressing as I'm in more pain and pain is getting worse, going by what the consultants are saying a date won't even be considered until possibly February. Also worried about the lesion on my pancreas. The hospital have said as far as they're concerned the next step is surgery and they can't do anything else to help

Vanessa - Macmillan over 2 years ago

Hi Tooomoo

Welcome to the Online Community here at Macmillan. I hope you find it a helpful place to access support and ask questions. My name is Vanessa and I am one of the information nurses.

You give a lot of information in your question, so I am going to try and work through this point by point. Please keep in mind that I cannot see your NHS records and therefore can give general information only.

Regarding your diagnosis of kidney cancer. I see you were diagnosed in October but surgery is being planning for January or early February. I’m sure this feels a very long and worrying time. It is worth knowing that your hospital team should be aiming to work with cancer waiting time targets.

I’m not sure where you are in the UK but in England, Scotland and Northern Ireland the target is that you should wait no more than 2 months from the date the hospital received your urgent referral for suspected cancer and the start of treatment.

Wales is slightly different in that the time starts from the date at which the person first saw a GP and the GP suspected a cancer.

If you weren’t initially referred as a suspected cancer the target of no more than 31 days wait between the meeting at which you and your doctor agree the treatment plan and the start of treatment.

Applying these targets to yourself, you appear to have breached the targets. A potential reason for this may be related to the incidental finding of a lesion on your pancreas. This may have made discussions more complicated and reliant upon further scan results and specialist opinions.

However, The NHS Website, in the section about maximum waiting times for urgent cancer referrals states:

‘You have the legal right to ask to be seen or treated by a different provider if you're likely to wait longer than the maximum waiting time specified for your treatment.’

As you have already spoken to your team to try and expedite surgery it may be worth speaking to the PALS service within your hospital. This service aims to resolve patients concerns or problems.

Regarding the nodule on your pancreas, this is difficult for me to comment upon. I can understand your concerns however your initial scans may well have been reviewed in renal teams MDT’s and when seen by specialists in the spleen their opinion may have been different, hence the change of plan.

You could ask for an appointment to discuss this further, either with your consultant or allocated nurse specialist (if you have one). You could also discuss this with the PALs team.

As you wait for treatment it is natural to worry and feel very uncertain. There is support available, for example we have an active kidney cancer forum within our online community. There is also a national kidney cancer charity which offers a variety of support including a support line and ask a nurse service.

I hope this information is helpful to you.

Best wishes

Vanessa, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref/CF

Tooomoo over 2 years ago in reply to Vanessa - Macmillan

Hi Vanessa, thanks for the reply.

The first MDT meeting was with urology and the second was with a gastro team who were the ones who said there's a good chance it is pancreatic cancer.

I will give PALS a call to see if they can help.

Thanks again for the reply

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