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Confused and anxious and stressed

alan3
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I had my kidney surgically remove I'm may.. The ct scan showed an 11 mm in my left lung , the second in August showed no increase in size. My kidney surgeon sent both scans to the lung specialist doctor who I saw in late August.. After that consultation I was to have a pet scan and it was suggested that I would need a lobectomy to remove the left hand lobe of my lung.. The doctor told me that the surgery would be carried out in another city or London as it was not a surgery that could be performed in the hospital I was visiting. I am not mentioning which hospitals as I don't think it is relevant. We agreed that the best option i should take would be to return to where I live as i emigrated 9 years ago. Have the pet scan in the country I live in at a specialist cancer hospital near where I live. Obviously I have private medical insurance.  

I arranged the pet scan and mentally I was prepared for the result and the suggested lobectomy..the doctor in the uk said that in his view a lobectomy would be the best way forward and would be the best way forward  for possibly an extended chance of surviving longer or even curative.., so I was now ready to undergo the lobectomy... 

I had the pet scan and got the results on the 29th September.. Results at 5 pm .. Arriving 10 minutes before 5 with a friend for support and he is also fluent in the language in the country I live in.. 5.30 still waiting 6 pm still waiting my friend asked and was told the specialist Doctor was running late as he was going on holiday the next day.. 6.30 pm called .. I walked in shaking from head to toe.. He immediatly looked at me and said sit down I have good news for you... The results showed the nodule at 1.4. He said nothing to do and come back in 6 moths for another pet scan... I was in a complete daze.. I must have asked him 3 or 4 times if the results were correct .. He assured me I didn't need treatment and nothing to do .. Just come back in 6 months for another pet scan.. I said if I do need surgery are your surgeons any good.. I'm not normally that blunt but I just in a daze.. He assured me that if I ever needed surgery then it would be carried out by one of the top surgeons in this country.. The doctor I saw has nearly 40 years experience .. I came out with the scan and report and just burst into tears.. I was stunned.

i sent the report to the doctor in the uk who replied saying the result of 1.4 is very low but he had not seen the scan.. My friend was returning to the uk and I said that he would send the cd pet scan by registered post to him ... I asked him by email several questions are biopsies safe or can they spread the cancer .. He came back and said biopsies are safe and will not spread the cancer if there is cancer... Risk being puncturing the lung.. Also I noticed a change in his response in that it was now if and when surgery was necessary it would be specialists surgeons that would decide.  The doctor has yet not seen the scan as he is currently on holiday and is back next week.  I am due to have a blood test and ct scan in the uk in 2 weeks time requested by my kidney surgeon as the usual follow up .

now I have been seeing a a doctor here to help me cope with anxiety and stress.. He knows the consultant I have seen here and has assured me that he is one of the top oncologists here .  But I was so mentally committed to having a lobetomy that I still.  Can't get my head around the pet scan result and the specialist here. Result ... Being told clear at the moment is  incredible ... But it's really made it so hard for me to handle ...  I go to bed thinking is it right wake up thinking thinking is it right...   

I know that maybe on the next pet scan in march next year the result could be different ..

i have spent hours on google searching pet scan results are they reliable can there be mistakes etc etc all just adding to my stress level.

my doctor that is going to teach me how to cope the the anxiety and stress has told me that I need to get it under immediate control as it can knock my immune system down and that is not good now for me.

I know I should be over the moon .. Just need to be able to accept what I was told .. Hopefully the doctor in the uk will soon look at the pet scan and agree with the specialists analysis here . In the meantime i will try to control my anxiety

 

 

 

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    Gosh Alan what a roller coaster of a ride you are on. It is difficult not to worry and when one doctor says one thing and another something else it must be a nightmare.

    My husband had a nephrectomy in July 2015 and was told he was clear. Unfortunately the CT scan in August 2016 showed it had spread to his stomach and returned to the lining behind where his kidney was. He is now on immuno-therapy drug pazopanib- a tablet he takes daily.

    Try to be positive and relax as stress isn't good for cancer. I know you must have all kinds of things going around in your head but the doctor must know what he is talking about if he has 40 years experience. As long as they are monitoring you and you feel well hopefully you will be ok. Try to eat healthily and exercise to keep you in tip top condition. Hope the CT scan goes well in a couple of weeks.

    Best wishes Chrissie

  • Offline in reply to Chrissie05

    hi Chrissie , I am so sorry to hear about your husband , thats the problem with our condition, it can spread, thats another thing that plays on my mind. I hope your husband responds well the the pazopanib

    I have two friends on infusions , and they have stopped their tumour groths and they have shrunk a little

    so thats good news..

    I know that stress and anxiety is no good at all, ive had hypnotherapy, aquapuncture, I was put on valium for a few months, but I just shook like mad in the mornings, so I stopped them and that took a good week for me to try and calm down again. Plus they are no good for your kidney ..

    Im managing stress at the moment, but still get the shakes sometimes especially first thing in the morning, next week im having the blood test and the CT scan, just want to get the results andhope that they are all ok, then take each day at a time in the future, 

    Thank you so much for your reply and I do hope your husband responds well

    Best wishes

     

    Alan

  • Offline in reply to Chrissie05

    Hi Chrissie

    Ive just got home from walking my dogs and all the time I was thinking about you and your husband,

    my thoughts are with you both.

    I am exercising eating a healthy diet, stooped smoking although I have had times where I have had one or two in a day a few times since May, but that was in my weakest stressfull moments and they just made me feel terrible.. 

    thank you for your reply and support 

    Best wihses Alan

     

  • Offline in reply to alan3

    Hi Chrissie

    How is your husband today... how is he responding to the treatment, I have read about pazopanib

    on the internet, is he having any side effects , which I hope he isnt. 

    Give him my best wishes

     

    Alan

     

  • Offline in reply to alan3

    Hi Alan

    Brian has also had MS for 38 years so he has a low immune system. The oncologist put him on 400mg a day but he has had every side effect going. The worst time being between week 2 and 3. However he is now on week 7 and as long as he takes anti-sickness in the morning he is ok. However this morning because we have had 4 really good days,eating reasonably well and not feeling as tired he didn't take a pill. Wrong move! I was just about to go to yoga when he started being sick so today has been a bad day. Anti-sickness tomorrow morning definitely! He is ok again now but eaten small meals throughout the day- just had a M and S Eve's pudding. He hasn't got a sweet tooth normally but he is craving milk chocolate, strawberry cheesecake and things he doesn't usually eat

    Also this weekend when I shaved his hair, doesn't have much anyway, the new growth is white whereas before he was black with silver, he is 64.

    We think that a lot of his symptoms are due to his MS which is also flaring up a bit. His hand is shaking and he is more tired than usual. It is funny but we have struggled but coped with MS since he was 26 and been on fantastic holidays, but cancer treatment is a whole new ball game. We are on a continual roller coaster. I have read on- line that many people cope really well with pazopanib but Brian isn't typical.

    Hope you are getting sorted.

    Best wishes Chrissie

     

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