Kidney cancer metastasis

Hi welcome to the community n the kidney cancer group.I'm  one of the volunteer community champions.

Cancer can indeed spread to the lymph nodes,tho I  personally don't know of anyone with kidney cancer whom this has happened to. I am of course not a doctor.

There are certain places it usually spreads to, if anywhere - lungs, bone, brain being the main ones - not necessarily in that order. I have mets near my windpipe n had a brain met which was successfully dealt with 6 years ago. Others in this group have bone mets at least.

Most of us are on some meds or other that keep these at bay, n new drugs are being developed all the time. I'm currently back on my Pazopanib for instance after a 3.5 year treatment break and there are about 3 other options after that.

Do ask the consultant re the scan and possible places secondaries may occur if you are concerned you're not getting the full picture. Has your family member got a cancer nurse specialist you can ask? They are usually incredibly helpful in their own right  n also as a go between u n the consultant.

Can u go to the appointments with your family member? If so, make a note of questions to ask n what answers u get. This can help later on when u need to review things n the person who's the patient doesn't remember exactly what was said.

You may wish to join the Family and friends group, to get support for yourself.

You can also contact the helpline on 0808 808 0000, 8am to 8pm , 7 days a week.

Hope that helps,.Sue

Many thanks for the info  So, do you know how they normally rule out secondary cancer?  Seems premature to provide a prognosis of no secondary cancer after an initial CT scan of the area.  

I'm excluded from the consultant appointment which makes me think I'm not being given the full picture.  I also have a lot of questions that either the consultant hasnt been asked or I'm not being provided the answers to.

Good question!

Often secondary kidney cancer doesn't occur for some years, it being a slow grower, compared with other cancers.

The medics can really only say what the current situation is, eg the surgeon told me at the time of my op removing the kidney would probably be the end of things - it wasn't. But for others in this group they've not needed anything other than having their kidney out - coz we're all individuals.

Is it your family member themselves who is excluding you from the appointments? Can you ask to be included because you're concerned? Or is that a no-no? It sounds like they're the one saying the scan shows there are no secondaries.

Seems like a very awkward situation - you want to be more involved than you're being "allowed" to be, which is making you more anxious.

Maybe try n explain how u feel to them.

Hi Petomez

                I am sorry to hear of your family members Cancer....With regards to the Lymph Nodes you may want to look at my original post under Hopeso.

I Really, Really wanted my Kidney out from the start.Different areas in the country appear to handle TCC cancer differently. By what you say you are in a good area.

It was a year or more from my first visit to the GP to getting treatment[ it was around 5 months from getting the sca and being identified ass an aggressive cancer.By this time it had spread into my Lymph nodes and they then said too late to take it out. However I see many people on this forum that have had the kidney removed after the cancer had spread to more new site than mine.

I think age will come into their decision making from a analytical point of view [ computer says no ]

I am 74 and feel act and do physical like somebody halve my age. I am wondering is how old you are and also is this TCC cancer as opposed to the more common Kidney Cancer.I will keep an eye open to see how your situation progressives.

Keep Smiling

Hopeso

Hi @petgomez

My kidney cancer's renal cell carcinoma or RCC . Most ppl in the group have RCC which is why I've not heard of it going to lymph nodes. U learn something something new every day.

Hi buttercup01

My husband has RCC with mets to a lymph node in his chest so it is possible for this kidney cancer at least to spread to lymph nodes.  He also has mets in his lungs (multiple nodules) and his right adrenal gland and now also his pancreas.

just wanted to let you know about our met spread. 

Hi Co5513

Thanks for that info Guess I'm just lucky then -  tho I have had lung node  mets for about 10 years, I've never really thought about  them being lymph nodes, dunno why...

Hi ,

Nice to meet you.  I don't know about checking lymph nodes with a CT scan aut I do know that after my operation to remove my initial tumour this was how they checked if it had returned.  Unfortunately I my case it had but this was seen on the CT scan.  I now have a CT scan every three months, thorax abdomen and pelvis to see if any new metastases have formed.  This seems to be the standard way of monitoring so I suspect that it would also pick up any growth in the lymph nodes.

Regarding what information I share with my immediate family I try to make sure I fully understand what has been said and that I understand the implications before I tell my family.  I do tell my wife immediately but she knows me well enough that she does not press for further information if I say that I do not know.  This gives me the chance to check out anything I don't understand and read the report and blood test results before I share this with anyone.

I am quite relaxed and laid back but not all of my family are and I know that I would be bombarded by questions and their worries which would wind me up.  I sat down with them individually when I was first diagnosed and explained that I would keep them informed if anything changed but I didn't want them ringing me all the time or suggesting that I read about this or that treatment, especially ones not coming about as a result of approved medical trials.  I also didn't want inspirational stories about how some one had survived against the odds when their cancer was totally unrelated to mine.

I know it sounds harsh but this is my health and affects me most and this is my way of managing.  I appreciate the concern and know that they will be there if I need them and love them for respecting my wishes.

There is also the fact that when you are first diagnosed this is a world that most of us know nothing about.  I didn't know the difference between a CT scan and an MRI, I was prescribed a targeted therapy or Tyrosine kinase inhibitor neither of which term I knew, I could not understand why it was not chemo, I didn't know why radiotherapy would not be effective.  I was given a list of side effects a page and a half long but advised that no one knew which side effects I would get.  I saw different oncologists after my first few meetings and did not really understand why.  I did not know who was now looking after my health, the oncologist or my GP.  Everything I felt became either a symptom of my cancer or a side effect of my treatment.  I requested a copy of my scan and it took me half an hour to work out which was my chest and which was my back, I got copies of the CT scan reports and my blood test results and it took me ages googling to work out what they were saying.  I was confused and anxious and the last thing I needed were other people throwing more questions at me or even trying to tell me that they knew what was going on as this would have made me feel stupid as well as being ill.

I was probably more worried about the practicalities, would I still be able to work, what would I tell my colleagues, if I couldn't work how would I manage financially, how would I care for my family, if I was going to deteriorate how soon would this be, would I be increasingly vulnerable to infections if I continued working, if I died how would my family cope and what would be the practical situation I would leave them in.

I think if you asked everyone on this site you would get a different response from everyone about how they dealt with it, how much information they shared and who with.  There will equally be a different number of reasons why they responded as they did.

If it is your relatives choice that you cannot go to the appointments you might want to ask them very gently why this is but you might have to accept that they can't really explain why but they are just more comfortable with this.  Alternatively you may like to ask them what you could do for them, emotionally and practically that might help.  If there is nothing at this time then remind them that this an open ended offer and they can get back to you at any time.

I know it is difficult for you but it is just as difficult for your relative as this is all new to them as well.  Hopefully as they understand more about what is happening to them they will be able to explain it to you better and how they feel about it.

Wishing you and your family all the best.

Gragon xx

Well said Gragon

Sue

Thank you so much for taking the time to write this - it is very helpful to read through the process you've taken to understand your condition.  I am trying to process things whilst respecting the decisions of the sufferer.  My biggest fear is that the pertinent questions aren't asked because of a fear of the answer and that will then negatively impact the support we're able to give and the care that they receive.