82 Year Old with Stage 4 Kidney Cancer - Prognosis?

Hi and welcome to the online community

I'm sorry to hear that your mum has recently been diagnosed with kidney cancer that has spread. I don't have experience with this type of cancer but noticed that your post had gone unanswered. By replying it will push it back to the top of the page where someone with the experience you need will hopefully see it and reply.

Hopefully you've discovered how the multi-disciplinary team are planning on treating your mum and that you'll all feel more in control now that you know what the plan is.

Wishing you and your mum all the best

x

Hi ,

I'm sorry that no one has responded quicker in response to your post (thanks to Latchbrook for popping it to the top again) and sorry to hear about your mum.

Hopefully by now the MDT have got back to you regarding treatment.  They will take into account your mums other medical conditions and although surgery is usually the favoured option as the cancer has already spread they mare likely to try to avoid this.  It is likely that the UTI's are related and they may simply treat this with long term antibiotics.

Treatment options can vary according to the type of kidney cancer your mum has and true chemotherapy is only used in a small proportion of these.  The most common cancer is renal clear cell and these are often treated with biological therapies.  These tend to target the blood vessels which supply the tumours and enable the tumours to grow.  They restrict the blood flow to the tumours and can cause them to shrink by up to about a third.  They are also being used now to treat some other types of kidney cancer as well.

They can have significant side effects but these are monitored closely by the oncology dept and these side effects vary from person to person.  The doctors can often prescribe other medications to manage these side effects such as blood pressure tablets or reduce the dose to enable the patient to tolerate them but sometimes the patient has to be taken off them if the side effects are too severe.  There are a number of such treatments and the response tends to vary from one individual to another.

If the biological therapies don't work there are immunotherapy drugs which can be tried.  These work by highlighting the cancer cells and boosting the patients immune system so that they can recognise the cancer cells and attack them.  Again this cannot cure the disease but can reduce the tumours by about a third.  I have very little info about the side effects as I do not take this medication but understand that it is generally better tolerated than the biological therapies.

Doctors struggle with prognosis and I am not medically trained and do not have the advantage of knowing all about the patient so would not try to even guess what this might be.  However, I have now been on my first treatment, a biological therapy, for four and a half years and still going.  These are fairly new drugs (the immunotherapy drugs were only licenced since I was diagnosed) so it is unclear how long they might remain effective, again it varies from person to person.

I'm not sure what difference your mum's age might mean.  I did meet someone a month or two ago who had been on treatment for ten years and she was now in her 80's but he obviously started reatment in her 70's.

I hope that this has helped and that your mum is able to consider her treatment options fully but it is a big step.

Wishing you all the best,

Gragon x

Hi latchbrook and Gragon, 

Thank you both for your responses.

A week after we were told the MDT meeting was happening we still have heard nothing as to its findings/outcome. Our GP has said they will follow up on this.

From the discharge notice we see it is diagnosed as likely Uretheral Transitional Cell Cancer (TCC) and not the more common RCC.(although it has spread to Kidney, Liver and Lungs)

https://www.cancerresearchuk.org/about-cancer/kidney-cancer/stages-types-grades/types-grades/transitional-cell

After about a week at home on Paracetamol and Codeine, we have recently had to change the Codeine for stronger Oramorph as it wasn't giving here sufficient pain relief. She seems more comfortable now. The hard part is not knowing or having an indication of how long this journey will take givens mum's position of not wanting any further treatment. We are trying some natural remedies to see if they can help boost her immunity and hold back/slow down the cancer. Not checked the forum about this avenue, but wondered if anyone had any experience to share on this topic?

Thanks,

Hi 

I had an appointment with my consultant a week or so after the MDT meeting so that he could go through the findings and proposed treatment with me so it may be that your mum will get an appointment soon. Has your mum been assigned a cancer nurse specialist (CNS) yet because, if so, this would be the person to contact to find out when her appointment is due?

It is very hard for any health professional to know how long someone can live with cancer as we're all different. Again, assuming that your mum wants to know her prognosis, her CNS would be her immediate point of contact.

As for natural remedies you might find this information that Macmillan have produced about complementary and alternative therapies useful. Complementary therapies do not claim to cure cancer but are used alongside conventional medicine to boost physical and mental well being. Alternative therapies are used instead of conventional medicine but, unfortunately, none have yet been proven to slow down or cure cancer.

Wishing you and your mum all the best

x

Hi again ,

I'm afraid that I have only a little knowledge of TCC although there have been a few discussions on this site previously.  If you type it into the search in group box above you will find a few threads mentioning it although due to the rarity of the cancer they are not frequent and you might need to check the dates before responding to any of them.

I think the difficulties with complimentary remedies is that there is very little empirical research into their effectiveness.  Lots of people clam that they have benefitted but many people live long beyond any prognosis date anyway so it is difficult to say what has caused them to live longer.  Providing they are not intrusive and your mum is happy to take them then it should not be an issue.  You would need to check with her medical team that it is not going to react with any of the medicines that she is taking already.

Don't be afraid to follow up appointments with the hospital for yourselves although if your GP is happy to assist then that is good.  Sometimes if you ring them directly they can confirm your availability over the phone and arrange an appointment there and then.  If they have to write it not only takes longer but they have to give you enough advance notice to allow you time to change any other appointments you might have.  Hopefully you will soon receive an appointment and will have the opportunity to ask some of the questions directly to the oncologist.  It is a good idea to write them down to take with you as you are likely to forget some of them once you are in the meeting.

I also ask for copies of any reports so that I can then study them at my leisure to try and get a better understanding of them.

All the best,

Gragon x

Hi all,

I just wanted to post a final message on this thread.

After being diagnosed in hospital and taking the decision for no treatment, my mum returned home to continue her palliative care.

After 2 weeks at home being cared for by her family and the palliative team/care workers, on Thursday May 16th, mum passed away peacefully in her sleep surrounded by her sister and a daughter-in-law. In the 2 weeks at home she was with all her close family who tried to manage her pain as best as we could and make her as comfortable as possible.

From being diagnosed in hospital to passing away was only approx 4 weeks, which has been as you can imagine very hard to deal with. She will be greatly missed by all who knew and loved her.

To all who have read this thread and offered words of advice and support, thank you.

Thinking of you at such a sad and very difficult time x

Please accept my sincere condolences for the loss of your mum.

Although these last 4 weeks will have been very hard for you, you should take comfort from the fact that you were able to honour your mum's wishes and she was able to return to her home to be surrounded by her family.

x

So so sorry to hear you have lost your Mum. I'm sure she would have very much appreciated being at home and surrounded with love.

Thinking of you.

Dear ,

I'm so sorry to hear about your loss but pleased that you were able to respect your mum's wishes and give her the passing that she wanted.

Thinking of you and your family,

Gragon x