Hi, just joined this group, I was diagnosed in October had full radical nephrectomy 4 weeks ago to remove right kidney post surgery feeling ok. Saw oncologist yesterday have mets on lungs which I knew about at original scan told they were very small. CT scan in Jan to see if they have grown, if so start immunotherapy nivo/ipil scared about what’s to come. Anyone gong through something similar would value any comments you have thank you so much. Telling family and friends been tough trying to be positive but and I have now stopped doing it, googling things made me feel worse as so negative about advanced kidney cancer and secondaries. Just trying to process everything.
I started immunotherapy two weeks ago. I'm tired but, so far, none of the possible side effects. My new oncologist said that they expect the treatment to work for me for two years. When he told me this I burst into tears. My previous oncologist was a dreadful communicator. I live alone and had been going to bed every night not expecting to wake up in the morning. I learned from this forum that kidney cancer is usually slow growing.
My surgeon and gynaecologist were brilliant communicators and finding myself with an oncologist who wasn't, even his secretary says this, lead me to several months of unnecessary worry. I'm finding it much easier now I have someone with whom I can communicate.
Hi piper952. I am in exactly the same position as yourself.
I was diagnosed in September, had my right kidney out 6 weeks ago, and I also have mets in my lungs. I have two that they found so far each of which are larger than 1 cm. I also have suspected malignant polyps in my gallbladder which at some point they want to remove.
I am now waiting for my scan to check whether my Mets in the lungs have grown. I’m expecting that scan sometime within the next week or two. I had my kidney taken out at the Royal free in London but I’m hoping that my ongoing care will be done more locally as I live the other side of London, in Essex. When I saw the oncologist he explained that, depending on the size of the Mets will determine what treatment I have. So he did indicate it is likely to be a combination of chemo therapy and immuno therapy. Initially when I was seen in the Royal free they explained I might be a suitable candidate for one of the many trials there seem to be at the moment however with the secondaries being greater than 1 cm in size I was not suitable candidate for such a trial.
So it seems our paths are running almost parallel to each other. I have also like yourself decided to stop googling or internetting because all you seem to read are negative experiences. I use this Macmillan forum as a resource of information almost exclusively.
Keep us posted and fill in your profile so we can follow and help support you wherever we can.
I will be posting my scan results on the forum too.
Until then,take care.
Thank you so much for your reply, sounds awful but nice to hear from someone that knows exactly what you are going through. I will keep you posted and you too.
Hi me again, one thing that has knocked me for six is my oncologist basically told me my prognosis was worst case12 months best 3-5 years, are they always this matter of fact. I know I have advanced kidney cancer as Mets on lungs but told they were very small in original CT scan back in October so will wait for my next scan second week of January. She also said as I had symptoms of weight loss anaemia and sickness prior to having kidney removed that it seemed it was a ‘nasty, tumour which wasn’t helpful really. As I said in my earlier post she said if grown on lungs in Jan would start immunotherapy just wondered if anyone had any comments on all of this. Still quite raw for me and struggling a bit this morning to remain positive. Thank you again.
There are several folk in this group on immunotherapy for secondary kidney cancer, not necessarily in the same place as you, eg @irishrambling is currently on it for brain mets, a combo of 2 drugs.
I should definitely wait till you've had your scan mid - Jan before u panic too much.Your oncologist certainly believes in telling it how it is, doesn't she?! She obviously wasn't taught "bedside manner" at med school... I'm surprised by the prognosis she gave you, mind you I believe everyone',s an individual, rather than a statistic.
I was first diagnosed in 2005 n am still around, various mets later. I was put on Pazopanib in 2013, having had a brain tumour treated by Cyberknife.
I've only just gone back on it, after a treatment break of 3.5 years.
Other folk here have also been on Pazopanib for years. It's not immunotherapy, but a targeted oral therapy.
Good luck for your scan next month. Let us know how u get on
Today is two weeks since I started immunotherapy. So far I've been a bit tired but nothing else nasty off the side effect list.
My first oncologist had no bedside manner at all, no eye contant and mostly gloom and doom. New oncologist is completely different and it has made a huge difference to me mentally. And because he has faith in me and my body, I find it much easier to be positive. He 'gets' me as a human being. So if you don't get on with your doctor, ask if there is someone else you could see. I also asked to change nurses and again that's made a huge difference. I'm fascinated by the science but also the witch doctor element of medcine
As a result of all this I'm writing a piece for an organisation I work with about poor communication in medicine and am working with my gynecologist on this.
So sorry to hear that, it seems quite harsh with the prognosis comments though. ‘When I saw my oncologist even though he did say it probably will be life limiting, there was no talk of time, other than telling me it would be “several years”. (I didn’t ask for a number though. )We are in a similar place on our journey it seems, and yet there seems to be a huge difference in how our future treatment plans etc are communicated to us. I wonder if the bedside manner of some of these doctors needs to be examined. I know it is sometimes difficult to be positive, but please try to keep as positive as you can. It is so much better for you than feeling down. It is for me anyway. I, and I’m sure many others on here, will be thinking of you, so keep us updated. ‘Take care of you.
Thank you to all who have replied you have made me feel better, I did think my oncologist was pretty harsh but will see how she is at next appt. I am feeling more positive about things and will see what the scan shows in Jan.
So glad you are feeling more positive. Keep in touch with all of us. As I've discovered there is a real strength in sharing.
I’m 3 years into my stage 4 cancer, and now much more comfortable in believing that I have many many more years to go. Like several others here I’m on Pazopanib and it’s working very nicely to keep everything at bay. Even in the time I’ve been stage 4 the progress that has been made in our treatments has been astonishing. I really don’t think that talking about average life expectancy is particularly useful because it’s based on historical data and our treatments have advanced so massively that I’m just not sure those figures are representative of where we are now.
Lots of luck to you. It’s very definitely not all doom and gloom xx
Thank you so much Jo300 really appreciate your message was having a little blip today and was feeling low, CT scan in a couple of weeks and see oncologist on 17 Jan to get results and see if Mets on lungs have grown or not. As I’ve said previously my oncologist was pretty harsh and matter of fact about best and worse case scenario and it really affected me and my husband who of course concentrated in the worst case!
So pleased you are doing well, thank you again for posting.
Wishing u good luck again for your scan this month piper952
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