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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

My husband been diagnosed today.

Buttercup19
Posted by

Hello, My husband has been diagnosed with kidney cancer today and we can’t stop crying, he had a blood tests and a CT scan on Friday and the doctor informed us in a telephone call and we are awaiting a letter for him to go in for a biopsy, I’m so scared how long this will take due to COVID 19. 

Buttercup19 
buttercup01
Posted by

Hi  @buttercup19, welcome to the kidney cancer group tho I'm sure you'd rather not be here. Might I suggest you join the Family and  friends group as well : to get support for yourself.

Firs off, kidney cancer is a slow grower compared to other cancers. Also the hospital will deal with your husband as quickly as possible , even given the  current situation.

There'll b a meeting of  the MDT once he's had the biopsy. (   ie  of everyone involved in his care  to decide on his treatment plan. The MDTs often happen once a week,so that'll may well delay things a bit. But things will move fairly swiftly Have you got.a specialist nurse  u can contact?. Or if not the oncologist's secretary? These   r both useful contacts.

Altho its a major op, it's doable and may well b all the treatment your husband needs. If not., there are lots of drug treatments available n more being developed all the time.

Do let us know when you have a treatment plan. 

Things seem so much better once you know what's  coming up.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

I'm sorry to hear about your husbands situation but welcome to the group.#

As I'm sitting typing this there is a discussion on BBC Breakfast about the impact of Covid-19 on cancer services.  Initially there were lots of delays to cancer investigations and treatments as resources were made available for coronavirus patients.  It now appears that the social isolating is having a significant impact on reducing hospital admissions and lots of these resources are being returned to their original purpose so the response to a cancer diagnosis should be getting back to what it was previously.  The main difference is that some hospitals re splitting services and facilities in two, one part for covid 19 and one for non covid treatments.  In some areas they are retaining some hospitals as covid free zones and all local cancer patients are seen there.

Having said that, the ability of an area to respond to cancer and to do so within the guideline times has varied from area to area prior to this crisis.

Any cancer diagnosis is devastating and is bound to have a massive impact upon you and as has said it will get easier once you know what the planned treatment is for your husband.  The consultant will be in a much better position to make a decision once they have the biopsy as there are several types of kidney cancer and treatment can vary depending upon which one he has.  Kidney cancers can get very large before they are diagnosed (up to the size of a football) and can still be successfully treated.  Surgery is usually the preferred treatment but if the growth is small they sometimes like to watch and wait for a while to see what it is doing.  Surgery can be curative.

You may wish to call the Macmillan helpline on 0808 808 00 00 as they are very understanding and supportive.  They can offer you emotional support but can also advise you of your husband's rights as a cancer patient including his employment rights and things like claiming on insurance policies if required.

You can also consult with your GP as often people benefit from a short period on anti anxiety medication or sleeping tablets especially when initially diagnosed.

I appreciate that it is difficult to do but keeping busy, especially in tasks which occupy your mind, are one of the best ways of dealing with this as there are too many variables at this time to even look at any possible treatments.  I would try to avoid Google as information there is often without context or out of date due to medical developments in recent years.  There is some information on this site including from this community and the Kidney Cancer UK site is also very good.

I find that if I have questions running around my mind it helps if I write them down so that I can ask the appropriate person when I get the opportunity.

Wishing all the best to you and your husband.

Gragon x

Gragon
Posted by

Hello again ,

Please see below a link for a BBC article published today about cancer treatment centres.

Click Here

I hope that this is useful.

Gragon x

Buttercup19
Posted by

Thank you for replying buttercup01 and outlining what will happen, we are expecting a letter from the hospital today and then will ring the GP to discuss as everything was a blur yesterday. I will update as we know more

Buttercup19 
Buttercup19
Posted by

Hello Gragon, It was very comforting to read your profile and your journey, it’s the not knowing what is going to happen that is hard as we are usually very informed people and I feel so helpless.

The article about the COVID free hubs is very interesting and I will be asking if there is one in our area of South Yorkshire. I will do as you advise about writing things down.

i have been up most of the night and I’m afraid I’ve done the googling but tried to keep to NHS advice and it has given me a little more insight into what we may be offered, the blood tests and CT scan with contrast on his abdomen/chest/ pelvic areas happened in a few days of our first telephone appt with the hospital consultant so I’m hoping the biopsy is as quick.

Many thanks for taking the time to reply and best wishes to you too.

Buttercup19 
buttercup01
Posted by

Hi ,

Thanks for a much fuller and informative response than my middle of the night one to @ buttercup19

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
irishrambling
Posted by

I'm under Weston Park in South Yorkshire. I last spoke to my consultant last week who assured me that as much as possible things were carrying on as normal. The only difference I have noticed so far is that all my scans have been put on the same day, hurrah! This means only one hospital trip. I suspect your husband and I have the same oncologist. And his operation will probably be done by the same surgeon as did mine. So do get in touch with me privately if you have questions about any of that side of things. 

My bloods are being done by the GP who gets in touch if there is anything out of the ordinary. 

Louise

Buttercup19
Posted by

Hi Louise, We've spoken to our GP today and he says we will go to Rotherham hospital which is our closest one, and also confirmed what you’ve said above about things being normal which is good, we are awaiting the letter following the MDT discussion and hoping that arrives by the end of the week so we can discuss options.

Thank you for replying and your kind offer of answering  a private message.

Kind Regards

Buttercup19 

Buttercup19 
irishrambling
Posted by

I've heard very positive things about Rotherham. Gather the food is much better than the Northern General, which would not be difficult. Will your husband then be passed on to the team at Weston Park? 

Louise

Buttercup19
Posted by

At the moment in not sure if he’ll be passed to Western Park, we will  have no complains if he is as it’s a great hospital. Is any hospital food good!!!  

Buttercup19 
irishrambling
Posted by

Weston Park's food is. They have fresh things like salad and fruit. It seemed strange to me that when I was in the Northern General they medicalised the fact that my bowels weren't working with laxatives etc.. when some fruit and prune yoghurt would have been a healthier and probably much cheaper option. 

Jo300
Posted by

Hi Buttercup19

Bit late to this and I can see that you've had some lovely replies already. I can't add much - but please keep in mind that kidney cancer is very treatable - and we're all here because of that - and also actually curable sometimes with just the nephrectomy - and with any luck you might find yourselves in that camp.

I'm 6 years into this and it doesn't feel like a life sentence at all. Many people here are much longer in their own journeys (I hate that word but not sure what to replace it with) I'm actually living some of my best life now. Covid, bizarrely, has made me slow down more than the cancer!

I hope you get answers soon. Things have slowed a little, but the chances of any delay making any significant difference to outcome unlikely as our cancer tends to be a slow grower (average is 8mm a year just to put it in context). Even on a normal day it's 62 days target from initial referral to initial treatment, so you can see it's not a super fast process. It feels like  forever while you're waiting, but it's not actually a problem from a cancer perspective normally.

Take care & keep safe!

Jo
x
Buttercup19
Posted by

Hi Jo300

Thank you for your kind reply, I’ve not been on here much recently, my husband was due to see(telephone appt) with a Urology consultant on Monday 4th May at 3:50 and at 4:45 no one had rung so I rung them as my hubby was in a terrible state, I was informed that the consultant wanted to have a conversation with someone at another local hospital and would see us at the hospital on Monday 11th May, today we have been informed this is now a telephone appt, the only information I have found out since his diagnosis on the 28/4 is that he has a 9 x 11cm lump in his right kidney.

Its the not knowing what is going to happen that is making my husband stressed out. I’m concerned he is still losing weight he lost  3lb last week and I’m struggling to get him to eat, I’ve rung the GP and asked for Forsip drinks and he’s referred us too a dietician who is ringing us on Tuesday, I just feel no one is telling us anything and it sounds like I am being unrealistic from your comments but we just need to know something as I’m so scared I’m going to lose him. 

Buttercup19 
buttercup01
Posted by

Hi , you're not being unrealistic, It's just hard to wait...n wait...n wait,isn't it?

But reassured, once your husband has a treatment plan in place, things will get easier.

It was poor of the consultant not to ring n tell u the phone appt had been postponed till next Mon, due to his wanting to speak to someone else. Sometimes they simply don't put themselves in their patient's shoes, do they?

Kidney cancer is a slow grower compared to other cancers, as no doubt said earlier. I believe she may even have  given you measurements?

I know it's easy for us to say, having lived with kidney cancer for some years - in my case 15 years - but things will get easier.

Try n take each day as it comes n support your husband as best u can.

Don't forget we're here for you n that the helpline is too - 0808 808 0000. Check opening times as they may be different with covid - 19.

Sue xx

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.