metastatic kidney cancer

FormerMember
FormerMember
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At stage 4 I had a radical nephrectomy of the right kidney and metastatic breast lump removed in May 2017. No follow up treatment was given apart from 3-6 monthly CT scans. I have only found 2 recorded instances of kidney cancer metastasising in the breast so comparing statistics is impossible which is why the surgeons got very excited and were going for a cure.

The last CT scan showed that 2 nodules in my right lung had grown so I was transferred to the Cancer hospital. The doctor I saw said there were 4 drug therapies to consider. When asked if a lung resection was viable he said no because multiple nodules were visible in both lungs which was a complete contradiction of facts given to me by the original surgeon. He disappeared to check with his boss and returned saying I was right and had better have another CT scan which has been booked for 10th February.

Most places I have looked indicate that surgery is the best option as drugs don't work on kidney cancers. This is a very controversial state of affairs. Recent media coverage of a patient operated on had subxiphoid nonintubated pneumonectomy and he was 74. The method involves encasing the lung in a net bag and removing it through a cut in the tummy area. I had my kidney removed in the same way so although it hit the headlines and the television this morning the method is not entirely new but needs a specially trained surgeon.

I feel that this would be a suitable method to use to remove the lung or resection the part where the two nodules are positioned as they are close together ( I saw the original scan and there were two small blobs which the doctors could not identify saying they could be scar tissue or inflammation).

I have been very happy not having treatment which causes very unpleasant side effects for the last two and a half years and would rather have the lung metastases cut out than spend the next two years or more in discomfort.

The drugs being put forward are Sunitinib and pazopanib.

Any comments or advice about these drugs would be gratefully received.

  • FormerMember
    FormerMember in reply to Ormebeau

    Thank you for sharing your experience. Just recently more people have made me aware that life does go on and wonder how the survival statistics are gathered and by exactly what criteria are used and by whom. Another 18 years would indeed mean I follow familial longevity. 
    Added to my motto “You are never to old to learn” is “Keep going”. Hugging

  • FormerMember
    FormerMember in reply to FormerMember

    Like Gragon & Mark I've long since decided that the traditional stats for kidney cancer are pretty pointless now. I remember the day I found out that I had mets my oncologist being hugely excited about announcements that were about to be made around immunology and instilling in me an absolute confidence that I would live.

    I'm 3 years into Pazopanib treatment. I'm finally finding a balance between side effects and a really good life. My mets haven't grown at all in the three years - clavicle, skull & lung and I've had no new ones.

    From a personal perspective surgery was never an option for my mets, but I'd have never dreamed of not being medicated if it was offered.I know kidney cancer is slow growing, but for me, the fact that I have mets - means it's travelling - and I have no idea where it will turn up next. They cut the first tumour out - and my kidney - and a whole load of fat round it - and thought that would be it, but nope - it was already on the move. I offset any negatives around the treatment by the positive that I've been stable on this, longer than I was "cancer free" following surgery.

    Also - my best friend has always said "you never know what's round the corner, you just have to stay alive" and low and behold she's right. I'm as well as I was three years ago when my mets were confirmed - and a brand new T cell has literally just been discovered.

    I have utmost faith in my oncology team, so following their advice has always been an easy decision for me. Whatever you decide, I wish you luck.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jo

    Thank you for your email. Many people who have replied have been on Pazopanib treatment.The first  treatment I was offered was Sunitinib and the second was Pazopanib.

    No treatment has been given yet as I have to have another CT scan on 10th February to check my current condition.

    We have doctors in the family who say there are new drugs being developed all the time so being positive is necessary for survival.

    I read about the dentist who is now producing his own T cells which may be used to help others. The article did not include renal cancer though.

    Pain I can stand but it is the thought of putting up with the nausea which is unpleasant.

    The doctor told me a side effect was that unfortunately hair turns white which was amusing as my hair is already white but dyed monthly and he didn't realize it. Now I have to find out which chemicals react with the treatment before I next go to the hairdresser. My dilemma now is whether to buy a coloured wig or shave off my hair and let it grow white naturally.

    I sincerely hope Pazopanib treatment continues to be successful for you until the right T cell is found.

  • Hi @zac1monty2, like I had bright white straight hair while on Pazopanib. During my 3.5 year treatment break it reverted to its naturally curly state. I've been back on Pazopanib 3 months now n it's changing again. I shan't dye it - too much faff to keep it up n I quite liked the white tbh.

    Discounting the 3.5 year break, I've been on Pazopanib since 2013 having gone on it after I'd cyberknife treatment for a brain met.

    Good luck on 10 Feb re your CT scan.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to FormerMember

    Hi Zac1monty2

    No need to shave your head - a decent hairdresser will just strip the colour for you. Go to a colourist specialist and you'll be fine..

    I know the article in the Daily Mail didn't mention kidney cancer (as usual short on facts and long on hysterics) - but most others do, including Cardiff Universitiy's own account here https://www.cardiff.ac.uk/news/view/1749599-discovery-of-new-t-cell-raises-prospect-of-universal-cancer-therapy

    Nausea isn't great - but I just figure it's better than the cancer growing. Small price to pay. I think many people have it much better controlled than I do - it's probably unfortunately just been my "thing".

    Good luck with the scan.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jo

    I want to say a big thank you to all the kind hearted people who have sent replies to me over the last couple of days.

    Their thoughts and information have given me a great deal to think about.

    Once again thank you all.

  • FormerMember
    FormerMember in reply to Gragon

    My dad was diagnosed with kidney cancer in September 2019. He had a radical nephrectomy at the beginning of October. We were told that it was a relatively small renal cancer and it was encapsulated so they’d managed to remove all cancer via surgery. He recovered relatively quickly from surgery and was hopeful to go back to work after the Christmas period. However, just before christmas, dad started to become unwell. After various scans and blood tests, we were given the devastating news Last Wednesday that dad has a secondary renal cancer and it had metastasised to the lymph nodes in his neck. We’ve had appointments to get the pain under control etc but tomorrow we are going to the cancer hospital for our appointment with the oncologist (I presume to sort a plan of action). I am terrified but know it’s got to be done. Obviously, I’ve done what I shouldn’t do and googled. I work for the nhs and have a good understanding/knowledge regarding cancer treatment etc. It does give me hope to read about other people’s first hand experience regarding metastatic renal cancer. 

  • Hi welcome to the kidney cancer group, tho I'm sure you'd rather not be here. 

    I'm  one of the volunteer community champions and also have been living with kidney cancer 15 years. Many of us here have metastatic kidney cancer but live with it due to various drug treatments, mostly Pazopanib, n some are on immunotherapy - often as a combo.

    Google is way out of date, given the recent developments in drugs for our type of cancer. Also, kidney cancer is slow growing, compared with other cancers.

    If you can go with your dad, then make a note of what questions you want to ask and note down the answers too, so you can have them to hand for later.

    Good luck to you n your dad for tomorrow.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thank you for your reply

    I am going with my parents tomorrow. For support but also because mum feels I’ll understand more what is being said due to my job (biochemistry/haematology). I have a list of questions as long as my arm! I’ve made a promise to myself to stop googling and frantically researching. It has helped reading the comments on this message board. I heard the words cancer and metastatic and read about poor survival rates and I was filled with such dread!

  • The "survival rates"are so out  of date

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.