Struggling with diagnosis after nephrectomy

Hi Wendy

I don't think that we have talked before but a belated welcome to the group.  I was wondering if you had managed to start your clinical trial yet?  I have been on a trial as well and found the contact and the regular check ups really useful for me.  I learnt a lot from the research nurses about my kidney cancer and the available treatments.  I hope that you find it as useful as I did.

I'm sure lots of people will be interested in a few more details of the trial and how you get on with it.

Wishing you all the best,

Gragon x

Gragon, thanks so much for welcome, be blessed and encouraged yourself. I have started s wee YouTube blog of my cancer journey if you would like the link let me know and I will send it to you. 

Blessings

Wendy let me know if you would like the YouTube link to my wee blog on my cancer journey. 

Blessings 

Thank goodness for the group. I’m new on here. I had a cancerous kidney removed, then I got a new tumor had that removed now Iv got another tumor in my groin area, waiting to see when and if they will operate. It’s enjoying each day as it comes.

Karl89, would love to hear more. What sort of time scale did this all happen in? I am 44 it's kind of crazy the whole thing. I have started a wee YouTube blog of my cancer journey, if you would like the link let me know and I will send it to you. 

Hi ,

Welcome to the group.  It is all very difficult to start with and I also felt very isolated before I found this group.  Hopefully you will soon hear what treatments they are able to offer for the tumour in your groin.  I was a bit uncertain from your profile but presume that the tumour in your lung has metastasised from your kidney? I had half my kidney removed about 8 years ago and was advised it had recurred and spread to my abdominal cavity about 2 years later.  I now have numerous small mets in both lungs as well but they do not cause me any problems either.  I am currently taking pazopanib, are you on any treatment for your mets at the moment or is it watch and wait?

Wishing you all the best,

Gragon 

Hi I’m not on any meds I think the cancer in my lung is just lung cancer, I smoked in younger day. I had a tumor removed from tummy wall last year in February I think now I have a new one as mentioned in my groin are, don’t know how long they will go before cutting bits. They said they will send a letter or phone call so I’m waiting.I feel if I hear nothing I can forget about for a while,

im so sorry you have so many tumors I expect your strong . Support is so doo thank you Karl

Hi Gragon, thank you for your message. I found out at the beginning of January that I am on the observation arm of the trial which I was disappointed with originally. However, the hospital said they are keeping a close eye on me and I will be having a CT scan every 4 months. Also due to Covid, in a small way I am glad not to be constantly going to hospital. How is your trial going? 

Best wishes, 

Wendy

Hi @karl89,

Tumours grow by the cells doubling in size and then splitting.  If some of these cells break off and travel to a different part of the body they continue to grow and split.  As a result the tissue that grows is of the same sort as the original tumour.  These are metastases or secondary cancers, the site they have spread from is the primary tumour.  If they have spread from a kidney cancer then these secondary cancers are still kidney cancer no matter where they show up.

It is entirely possible to have more than one type of primary tumour such as both kidney and lung cancer and indeed I have met people on the site with three different primary cancers.  However, different cancers often respond differently to different treatments.  Even within each type of cancer there are usually several different variations.  My kidney cancer is called Renal Clear Cell but there are about a dozen different types of kidney cancer.

If you are unsure about what your cancer is your GP should be able to clarify this for you.  Once you know this then you will be in a better position to discuss treatment options with your oncologist.  You could also ask your GP to refer you to Macmillan to have a Macmillan nurse allocated.  They would assist you in understanding your choices and if appropriate could contact the oncologist to clarify your wishes.  They can also assist you in various practical matters by signposting you to the appropriate agencies and again helping you to communicate your wishes with them.

I think that we are all strong in our own way as what choice do we have but to deal with the issues we have been given.  I was lucky that I had an oncology team that explained things to me in quite a lot of detail when I was first diagnosed and a Macmillan renal nurse specialist based at the hospital where I attended who I could talk to.  I regard myself as a capable, intelligent person but I had no previous personal experience in cancer and have got through it by contacting the specialists whenever I need to.  My cancer has been symptomless since the start and gives me very few problems, it has been much more the emotional side.  I found that accessing practical support including dealing with my finances helped to reduce the stress and I could focus on looking after myself and my family.  Often distracting yourself so that you can forget about it all for a while is the best thing to do.  I also like to have something to look forward to, in the past i have planned my holidays, day trips, meals out, theatre trips etc but that has been a bit more difficult during the lock down.  I still plan treats but they are more likely to be a home cooked steak dinner or going out for a walk nowadays.

Al the best,

Gragon x

Hello ,

I think that even if you are on the observation arm of a trial you still benefit from closer monitoring and access to the research team.  In my case the option was between taking the medication as it was usually taken, or trying to take treatment breaks in line with the protocol.

The trial I was on was extended as I think that a significant number of us tolerated the medication much longer than expected.  The trial has only recently ended and hopefully the results will be published soon.  I haven't seen the oncologist yet since the end of the trial so have not updated my profile yet or advised anyone of what happens now as to be honest I am not fully aware.  I am due to see the oncologist and meet my new cancer care nurses later this month and I will post a bit more about it then.

Personally I am now at the stage where a trip to the hospital classes as a day trip and i quite look forward to it.  I haven't been outside of my garden since last Wednesday and quite enjoy the drive to the hospital as I get to see a bit of the countryside as I go.  I think that I have only filled up my car about twice since last March although I am due to do so again this week as I have not just one but two days out.  One to take my son to the dentist and one for a CT scan.  Isn't it strange how our priorities have changed since we all went into lock down.

All the best,

Gragon x