First 6 month scan result phonecall

Hi,

I had a rad Nephrectomy in August last year after a large tumour was removed.  A clear 3 month scan in November.  No spread identified and no further treatment,  with 6 month scans. My nurse specialist called me approx 2 weeks After the first 3 month scan to give the news that all was good  

i have just had my first 6 month scan on Friday which was slightly delayed due to coronavirus. I left the hospital at 11.30am and received a call at 1pm from the appointments admin to arrange a telephone consultation with my urology consultant on Tuesday morning. I can only assume that he has seen something on my scan. I believe it normally goes to MDT after he sees it which is why it normally takes up to 2 weeks for them to contact you. However the fact that he wants a telephone consultation so quickly makes me assume the worst.  Also I have noticed a distinct change in my voice recently. There is a hoarseness which of course, I googled... never a good idea but sometimes I need to know if I should be getting things Checked out. Through the pandemic, I was watching for coughs etc and waited to see if it turned into anything and was relieved when it didn’t. 

I had really hoped to get further than this before needing more treatment. I am devastated. Some of my family are saying not to worry, it may be nothing but  after the shock of my diagnosis last year I feel I need to be prepared for the conversation and never be that shocked again  I don’t think I could do that again. I’m sure you understand how difficult it is when others dismiss your thinking, saying it will be fine, when you know the stats, the chances etc.  I am normally a fairly positive person but I also am pragmatic. 

It’s  been a while since I posted in here although I dip in and out to read how everyone is. It can be so comforting. You were all so brilliant when I was in the middle of the shock and turmoil of diagnosis.   So I know there are treatments and drugs. But up  until now I was able to continue to live normally with only the occasional thought of the future. I had planned to get married this year, to refurbish house and build an extension,  and had booked three amazing trips, knowing that future travel insurance may not allow me to do so.  I have had to cancel everything due to coronavirus. I could have lived with that as long as I could push it all into next year. 

if I was to start on treatment such as pazopanib,  are you  able to work or travel? Does it restrict your life a lot?  I love my job and would hate to not be able to work.

I haven’t had dark thoughts, and the nausea when I waken up, for some time.  I can deal with it all and have learned how to control the thoughts and coping strategies   I am just so devastated to be back here again  

could anyone give me some idea about How much you are restricted by the treatment? Does it suppress immune system and will I need to shield in the pandemic? 

thank you all so much in advance  

H

  • Hi ,

    firstly just to say that some consultants will prefer to see you face to face regardless of the scan results so hopefully this is nothing sinister.

    However, I can understand your concerns so would like to reassure you that life continues.

    I have been on Pazopanib for 5 and 1/2 years now.  It is two tablets daily before breakfast and the side effects for most people are manageable.  I am at one end of the scale and get very few (and the ones I do get are reducing over time) but some people have to stop the treatment as they cannot cope with the symptoms and move to a different treatment.

    I am now retired on medical grounds but for me this had no financial impact and was as much about other medical conditions as the cancer or treatment.  Many others have continued to work full time.

    I initially struggled to find reasonable insurance for travel but there is a whole forum on here about insurance to help.  More recently I have managed to get annual cover for europe for me  my wife and son for about £95 in total.  Until the lock down I have been abroad two or three times each year since diagnosis, mainly to make good memories for me and my family.

    This is part of the way that works for me.  I find it easier to cope if I have something to look forward to.  Initially I didn't book anything as I didn't want to book it and not be able to go.  Then I would get to the date and I was well enough to have gone and was disappointed.   I realised that i would rather book something and have the chance of going than know that I was not going anyway.  So far the only things I have missed out on are because of the coronaviris.

    And yes, unfortunately pazopanib does require you to screen but most of us are being pragmatic.  I live with my family, I go out for walks at times I think it will be quiet and avoid other people and deal with it as best as I can.  I am hoping that the situation changes soon as like everyone else I am getting a bit fed up.

    I think that in some ways my life has improved since my diagnosis as i am more open to trying new things, less likely to put something off, more likely to speak my mind and am discussing things more with family and friends.

    I too liked my job but to be honest i have more than enough things that i want to do that even now i am retired i don't have the time. 

    I was shocked when my cancer had spread as no one expected it and even my urologist was surprised and it did take some time to understand what was going on so please be kind to yourself.  Give yourself time to understand what is going on and what the implications are.  If you are told it has spread then I would recommend you talk to the Macmillan helpline as they will help emotionally and practically.  Please come back if it raises further questions and please let us know how you get on.

    Wishing you all the best, love and hugs,

    Gragon x

  • Hi , I'm also on Pazopanib n have been since 2013, tho I had a treatment break from 2016 to 201 9. I also am retired on ill health grounds, tho nothing to do with the cancer.

    I take 600mg/ day of Pazopanib  with an  anti-sickness med,which is more of a preventative than anything. On the whole, I don't get too many side effects, the main ones are food tasting of cardboard ( which I deal with by having a week's break every few months) and diarrhoea ( I have a stock of loperamide for that)

    What  says about contacting the helpline is a very good idea, should you find your cancer's spread. Don't forget kidney cancer is a slow grower compared with other cancers n there are new drugs being developed all the time, if it has spread.

    Take care,

    Sue

  • Thank you so much Gragon and Sue.  It’s good to know that if this had progressed that further treatments are manageable and that some travel is possible. 

    I am taking a big deep breath and preparing myself. 

    H

  • I had my consultation this morning.  They have picked up some tiny spots on my lungs.

    i am surprisingly calm. Perhaps it will hit me later. Spending the day with family.

    the info that you share with me really helps to keep me grounded. 
    thank you.

  • Hi

    Your story is a bit similar to mine, I have just started immunotherapy, no side effects so far, I am less stressed now and the nurses here do inspire confidence and so much is being developed all the time.  I got married two years ago and we are developing a house. Initially  was going to put all on hold but am pressing ahead, I just think this is a new way of living and hope is the most important thing....lots of positive stories here...

    S  

  • Hi Stephen,

    thanks so much for your reply. It’s good to hear from someone in the same boat! Very encouraging to hear you aren’t suffering side effects. It would be great to be able to have some normality when I do go on to them.

    i had meeting with oncologist yesterday afternoon.  They have devised that the spots on my lungs are too small to treat. So the plAn is to scam again after 3 Months and see what change there is. It’s difficult for my family to be told they aren’t treating what is there and my partner challenged the consultant to explain, but I am happy it’s too small to treat just yet. 

    My daughters are struggling also. I feel remarkably calm. I think I had processed and prepared for this since surgery. 

    Like you I’m going to continue with some work to house and we are going to rearrange the wedding. Things to look forward to. 

    thank you for sending such a positive message. Can I ask what drug you are on? 
    H

  • Hi ,

    I also have numerous lung mets across both lungs and they have been there for several years.  At the moment once the cancer spreads it is not possible to get rid of it and the lungs is a common place for it to spread to.  My treatment has regular breaks and during those breaks the lung mets grow again until the largest are about a centimetre after about 6 months.  They describe them using terms like numerous or multiple as they are too many to count easily.

    When I go back on my medication to date they have consistently shrunk to the extent that only a couple remain visible on the scans.  However, although not visible the cancerous cells have not gone and once I have another treatment break they grow again.  If I was not advised in the scan report I would not be aware that I had these growths in my lungs as they cause me no problems.  I have heard of people having surgery but that was when one of the tumours was blocking one of the major airways and restriction the persons ability to breath properly.  Providing the mets are not causing significant problems they are unlikely to subject you to any treatment at this time.  Although we all hope for minimal side effects and in most cases the side effects are manageable, the doctors will not risk you having these until they believe the potential benefits outweigh the disadvantages.

    It is difficult to get your head around the idea that we have this disease inside us and that we are not doing everything we can to tackle this.  Were it curable then it would make sense to treat it and get rid of it whilst it was small but when it has spread to multiple sites and can only be managed and hopefully contained then waiting makes more sense.

    If you do get tired of trying to explain things to your family then you could direct them to the Macmillan help line.  They are very happy to talk to anyone impacted by cancer and I have found them excellent.  I did talk to them personally both in the early days to increase my understanding of what was going on but later in order to try to sort out my finances so that I had one less thing to worry about.

    Wishing you and your family all the best,

    Gragon.

  • Hi

    I am glad to hear that you are pressing on with your life plans, I find that it helps emotionally. I am having therapy which is helping get over the shock and I suppose get used to a new way of living.

    My wife is trying to be strong and sometimes has a meltdown which is not a bad thing as it's a release. I think our families need to get used to this too 

    It's got to be a good sign that it is a wait and see for you and at least you know and are being treated.

    I am on Ipilimumab and Nivolumab. I think they are quite new. I have stopped researching stuff as it freaks me out and am relying for now on my Docs.

    I think we have to expect good days and bad days and there seem to lot of people on here who have success in managing all this. I have so much I plan on doing over the years and hope I am assured is the best medicine, as well as the medicine of course. 

    S

  • Hi , I think i is on that drug combo too

  • How are you getting on

    S