My Dad

Hi  and a very warm welcome to the online community at what sounds like a very worrying time for you and your family.

I can't answer your question as I didn't have this type of cancer but I noticed that your post had gone unanswered. By replying to you it will push your post back to the top of the page where someone with the experience you need may see it and reply.

You could also post your question in the secondary bone cancer group and see if anyone in that group can help. If you want to join just click on the link I've created and then choose 'Join This Group' on the page that opens.

I hope you get good news from your dad's next scan.

x

Hi ,

So sorry to hear about your dad and his medical situation.  It is not uncommon for kidney cancer to be discovered by accident as it is often without symptoms.  Given the size of your dad's tumour is 4.5 cm it is classed as a small tumour for kidney cancer where they can grow to the size of a football.   Most cancers are initially dealt with surgically to try to prevent the spread.  Once it has spread then surgery is not always pursued as the cancer has already spread out of the originating organ.  You would need to check with your oncologist but my understanding is that once it has spread to another organ or part of the body distinct from the site of origin it is classed as incurable.  This does not mean that it cannot be treated.

They will be trying to determine not just how aggressive it is but what type of kidney cancer.  I have renal clear cell cancer (RCC) which is the most common one but there are a number of others.  Treatments are different for each one.  RCC does not respond to chemotherapy or radiotherapy but are treated using Biological therapies or Immunotherapy.  I have been on a biological therapy now for just over 4 years and this was my first treatment.  When this eventually stops working there are now many other medications for me to try.  The medications can be difficult to take especially initially but the patient is closely monitored and can be given other medicines to counter any side effects.  I am also diabetic and am on medication for my blood pressure and after an initial bounce or two my medication has been adjusted and is now stable.

I understand that any pain from bone cancer can be treated with radiotherapy but you might get more information about this from the secondary bone cancer group.

I think that everyone is terrified when they first get a cancer diagnosis, especially when they get an incurable one.  However, it is getting increasingly possible to treat this and for many of us now it is more like a chronic condition which needs to be treated and accommodated but does not prevent you from doing things.

I continued to work for the first couple of years after my diagnosis before taking early retirement on medical grounds, I'm now 57.  We have been abroad on holiday every year since my diagnosis and are going for a 4 day break to Spain in February and are planning on going to South West France for two weeks in the summer (when I will be driving).  Where possible you should encourage you son to focus on what he has rather than what he might be losing, plan small things like days out, cinema or theatre trips, family meals or meals out, whatever he enjoys.  He might want to join the Macmillan community himself as it can be very supportive and encouraging.  I am a member of the Patients Only - Living with Incurable Cancer group as well and find it very helpful.  There is an amazing amount of positivity in the group and support is available if required.  However, like the carers groups it is asked that only people who meet the criteria join and post in these groups.

You and your dad might both like to call the Macmillan helpline on 0808 808 00 00, available every day from 8am to 8pm.  They are very understanding and supportive and can offer advice in lots of areas.  They are very good at emotional support but can also help with things like financial advice.  I rang them about my pension and they helped me with areas that I had not even thought about so I highly recommend them.

I appreciate the complexity of your dad's medical situation but they will make the decisions at a Multi Disciplinary Team meeting (MDT) once they have all the information they require.

I'm aware that it is a few days now since you initially posted.  Has your dad had his next scan now or do you know when it is scheduled and when you are likely to get the results?

Wishing you and your family all the best,

Gragon xx

Dear Gregan, what a brilliant response, thank you. You have offered many words of encouragement. Thank you. I’m so pleased you are and have been managing so well on treatment. Will look into other groups and will be on this forum again after Dad’s scan.

Hello all

Dad has just had his scan and has meeting next week to discuss results. Based  on what you know, if the kidney cancer has spread even more (has already spread to bone,) and is aggressive, is there a possibility they may recommend not treating? He is actually doing well in terms of eating, going for short walks and  helping around the house - amazing for someone who has just had a stroke.He doesn't seem poorly, so am so hoping they'll give him some sort of treatment option to offer even a glimmer of hope for prolonged life.

Mum is so strong and is propping them both up so well. She is my best friend and Dad is the only man in my life so I'm in a very lonely place at the moment. Thankfully I do have my friends close by, my work colleagues are amazing and Macmillan including people on this forum are amazing too.

Hi ,

It is extremely difficult to say what the plan will be until your father has his full diagnosis.  It is exactly why the Dr's are continuing to investigate as they will need to know what type of cancer he has in order to know what treatment might be effective. They will also take into account of your father's other conditions.

Waiting for results is really difficult and you can tie yourself in knots with all the "what if's" in trying to second guess given all the unknowns at this time.  Waiting for scan results even has it's own name in the cancer world "scanxiety".  I know it is difficult to do, and you will obviously worry, but at the moment you say your dad is doing well so enjoy being with him and try and distract both of you and your mum from this wait by spending some good time with each other.  You don't have to spend a fortune, like you say, short walks are good, a good movie, meeting a few friends, a gentle day trip.  When you are on your own anything that engrosses you, reading, television, crosswords, exercise or even tidying and organising your wardrobes (it is surprising how many people avoid thinking about things by reorganising their kitchen, garage, bedroom etc. as a distraction).

Wishing you and your family all the best,

love and hugs,

Gragon xx

Thank you Gragon

That is a hugely helpful email and I’m not surprised there is the word ‘scanaxiety’. It means so much to know you are not alone at times like these. 

I am pretty much in the same situation as you. My dad was diagnosed incidentally from investigations for another issue. He had a nephrectomy in October 2019. We were told that all the cancer had been removed however now find ourselves in a situation where it has spread to the bone and lymph nodes/spleen. My dad starts radiotherapy tomorrow for the bone mets and will be followed up with immunotherapy for everything else. I love felt every emotion going but have found great comfortable in these forums knowing that there are people to ask questions who have been there and got the T-shirt. 

Hi

So sorry to hear about your Dad, this initial stage of the unknown and waiting is so difficult.

Many of us here have more than one met - in more than one place, with the mets being found at the same time, but it didn't preclude treatment. My main met is bone - in my clavicle, I have a small one on my skull and a small one on my lung. I've had them all over three years and like Gragon I'm still on my first treatment Pazopanib which is working really well to keep everything totally stable.

Immunotherapy wasn't available as a first line when I was initially treated, it's my third at the moment. Assuming that your Dad is treated then know that if the first option doesn't suit him, there are others available.

I've mentioned to Tabby85 that I get zometa infusions alongside my treatment every 4 weeks. They help with bone strength and I've found them to be really useful. If it's not offered it might be worth asking about the possibility. My combined treatment and Zometa were so successful I evaded radiology (Booked for 24th December so I was quite relieved about that!!)

Will keep fingers crossed for your Dad's next oncology appointment.