New Diagnosis

Still in shock really, I suppose. I went to the doctors because I was a bit breathless when I went dancing. I had a x-ray and then a referral for a CT scan and 2 days later an appointment with the consultant. It was a very long 3 weeks. I had by then already worked out that it was probably lung cancer. He said it was advanced and I had thickening of the lining at the top of the lung, and also fluid on the lung which the x ray had already picked up. Not really sure what that means but it didn't sound too good. I had a bronchoscopy yesterday which didn't actually show anything and he couldn't get anything for a biopsy. I have a PET CT scan on Friday, I'm not really sure why the 2 CT scans.

The doctor rang me at home tonight as they want me to have an operation to drain some of the fluid and hopefully get some samples to test. This could take a couple of weeks to organise. Is this the normal time scale. I have done some reading but really trying not to scare myself too much at the moment. My husband got worried as he had symptoms similar to mine. Actually the only symptom I had was breathlessness. He went to the doctors and they were very good and send him for an x ray but he hasn't had the results yet. I tell him that if there was a problem they would have phoned him. I got my call the day after my x ray.

Its the emotional roller coaster, how does a person deal with it. Sleep seems to have disappeared although I am grateful to wake up in the morning.

Sorry for rambling but other people are just too close to talk to and we all end up in floods of tears at the minute.

14 Replies

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  • Hi Jeanne, Sorry your going through such a rollercoaster ride. I too went through similar procedures before I got a proper diagnosis. I know It feels like your in a whirlwind. Please have faith in your doctors and oncologists. Once they have all the scans and tests done they will be able to tell you what course of action they will take.

    I know I had numerous and different types of scans and tests. I eventually was told I had to have surgery. I was waiting 2 weeks before I got it. It seemed like 2 years.

    Anyway good news is that was 2 years ago when I had a pneumonectomy and I am still going strong.

    Stay positive I know its not easy, Lots of good vibes being sent to you. >>>>>>>>>>>>>> xx

  • Hi Jeanne, so sorry that you're going through all this too. I am having a lobe of my lung removed on Monday and just joined this forum yesterday for some support and advice. I agree that the waiting for tests and the results is very difficult, time just seems to drag. It really is scary and an emotional roller coaster. I have good support from my lung cancer nurse specialist as although family and friends are very supportive I found myself trying to be brave for them when I felt anything but brave inside! I get through each day by trying my best to be positive. Can your GP maybe help with something to help you sleep at night? It is a difficult time for you and your family and I am sending you lots of positive thoughts. Hilary. X

  • Thanks for the support, some days are better than others. I slept really well last night for a change but don't seem to have any motivation for anything today. I have lots to do before I start having health problems. At the moment apart from the breathlessness and the perpetual ache in the shoulder and breast I am fine.

  • Hi Jeanne (and Hilary). I was in your shoes almost two years ago. Following surgery and chemo I am now well on the road to recovery. The hardest thing to do is accept that your future has of course changed, (I call it a different kind of normality). Try to focus on the positives when you can and lean on your family and friends. I, like you, tried to be strong but my family have since told me that this made them feel even more helpless/useless. Good Luck to you both, sending love and positive vibes your way. Carol xxxx

  • Hi Carolannmarie, lovely to hear from you and thank you so much for your positive vibes and advice. It's really good to hear positive outcomes from this dreaded disease. A different kind of normality is a great way to describe it. Will try to focus on your words this week after my surgery. Thanks so much. Hilary. X

  • Very best of luck Jeanne, and remember - you're never alone! If you don't want to worry your family there's always me or any of the others on here to talk (or scream and shout) to. Take good care of yourself xxx

  • Hello Jeanne

    You have a lot to take in just now and sleep can be really difficult when your mind is whirring. As Hilary said being in limbo can make the days/weeks stretch. Unfortunately it can take some weeks to get all the tests and identify exactly what type of lung cancer you have and this is important as it helps decide what course of treatment is best for you.

    Depending on the location and type of your tumour it can be linked to swelling or inflammation of the lung. It can also cause a build up of fluid around the lung, which is called a pleural effusion. The doctors can drain this fluid and do a procedure to reduce the chances of it building up again.

    They may be doing the PET -CT to get more information on exactly where your cancer is and how it is behaving. A PET-CT is two tests at one and will give your medical team more information than they got from the CT scan on its own.

    We do have a pack called "Lung Cancer - Answering your Questions" which we can send to you if it might help. Just email us at info@roycastle.or or use our Freephone helpline 0333 323 7200, option 2.

    I am not sure if you have met your lung cancer nurse specialist yet? He or she should be able to talk to you about what is going on just now and make some suggestions on how best to cope. I am sure you will also get a lot of benefit from the experience of the members of this forum, who can be a great support. This is a good place to let off steam, feel upset or angry.

    take care and do share any questions, frustrations or concerns,

    best wishes

    Lorraine

    on behalf of the Information & Support team

  • A seriously bad day yesterday. I should have gone for a Pet CT Scan but got a phone call just after I set off to tell me the machine was broken. I went home fortunately as it never got fixed. Lots of phone calls to me and I also called the booking office. It was eventually cancelled at 3:00pm I hadn't eaten or drank anything but water from tea time the night before. I felt really ill. I was left with a choice of waiting another 2 weeks or travelling 70 miles to get one next Thursday. I booked the one for Thursday but I will ring my consultant on Monday and see what they say. I did try to ring on Friday but the secretary was out for the day. Felt really ill but probably a lot of it was stress.

    I still don't have a proper diagnosis as they got nothing from the bronchoscopy and just feel time is going on. Its now 6 weeks since I went for that fateful X ray and I am still no farther forward.

    What do I need to do to push this forward.

  • Hi JeanneLe, how absolutely awful for you! Waiting for a definitive diagnosis is sole destroying. I waited 8weeks for mine but I have to say it was a relief in an odd sort of way to get the diagnosis. You go through every emotion possible. Hopefully you will have your PET CT and results soon and move on to the next stage quickly. The day I got my diagnosis I was also given a plan for treatment which begins tomorrow. I go into hospital in the morning (Monday) for my lung lobectomy on Tuesday. I hope things move on for you now quickly and you get answers really soon. Do you have a nurse specialist who you could contact to maybe help to keep things moving? I live in Northern Ireland and we only have one PET CT scanner for the whole Provence and its also in a hospital 70 miles from where I live. I had to wait 10 days for an appointment and another 8 days after that for the results. It does seem unbelievable that all these tests and results take so long but waiting rooms at these places seem so full of people obviously in the same situation as ourselves. I have had 3 CT scans, a biopsy and an EBUS, a PET CT scan and a CT with needle biopsy plus numerous breathing and exercise tests. I hope everything moves on quickly for you now and you get some answers soon. We all need to know exactly what we are dealing with, thinking of you and sending you lots of positive thoughts too. Hilary. X

  • I feel a lot better today. Its weird how as soon as you have a problem you notice so much more about what is going on . Good luck to you for all you treatments this week and let us know how it goes. You should at least be over the worst for Christmas.

    I spent a lot of yesterday just messing about not really doing anything and I think it left me too much time to think, my heart rate was up high all day. Then in the evening I was knitting and the wool got all tangled and it took me about an hour to unravel it. For some strange reason I was much calmer after that perhaps because I was concentrating on something else. So today's plan is to do things and not think of myself as a invalid. I just have to remember to stop more often. At least if it all goes wrong ultimately I will have had time to tidy up my life. :) I was also drinking alcohol on Friday, only 3 but gallons to my normal amount which is almost nine and I wonder if that also had an effect.

    I suppose the result will come soon enough and I might not like it so enjoy what I have for the moment. Thank you for you kind words just talking to someone else always seems to help.

  • Lol! I know exactly what you mean about having time to tidy up your life! I have the house sorted from top to botom, I started in the attic and just seemed to continue through the whole house! I then did all my Christmas shopping put up the Christmas tree and decorations and then knit some decorations for the tree!! Barely had time for hospital appointments never mind being sick! But it did make the time pass more quickly and I didn't feel an invalid either...helped keep me positive and I achieved a great deal! Whatever this week brings I have a tidy life/ house, every cloud and all that!! Good luck with all and I'll let you know hw I get on with my treatment when I get home from hospital. Keep up the good work lol! Hilary. X

  • Thinking of you today Hilary, sending all the positive vibes I can. I had a good day yesterday. Freecycled some doors that were stored in the garage. He is never going to get them done, now if he does decide to do it he can buy new ones. Loads of room in the garage. I also went on the local selling sites and put on things for selling and sold a couple of items. Two less pieces of rubbish in my life.

    This morning I went for the bathroom clean, not a pleasant option in a house of 3 men. I think its time to talk to them about the fact if I'm gone in a couple of months who the hell is going to sort it out. They are grown up and its time they got on with it. They are all devastated with my illness but obviously not enough that they think about the effort needed. Time for some straight talking I think. Plus the fact I don't want to be cooking and cleaning now any more than I want to work. I want to sort out and have a tidy home, not one that four kleptomaniacs live in.

    Not really about my illness but feeling really positive at the minute. I'm going to ring the consultant and tell him or his secretary that the scan has not happened. They probably already know but I don't know enough to say how important any of this is.

    Thinking about you all and especially Hilary with her op today.

    Jeanne

  • Well life has moved on now. I have been to see the doctor again and had discussions about the bronchoscopy results. I now have to go to Leicester on Thursday for a pet ct scan and then on Friday, hopefully a bed is available, I will go into hospital for a procedure which will get samples for biopsy from the lung which weren't available with the bronchoscopy.. They will also hopefully drain some of the fluid off the lung. The doctor was really please as he expected that to take 3-4 weeks to happen. We won't have an answer as to what I have until the biopsy results comes in and that will be a couple of weeks. But now likely to be a lot quicker than they anticipated.

    It was a bit easier today when talking to the doctor as we both knew a bit more about what is going on and had time to think about what we wanted to ask. I also got introduced to one of the Lung nurses so I now have someone I can talk to if I need to.

    So overall it was quite a positive day.

  • Jeanne

    Glad Tuesday was better, hopefully things are progressing. We are thinking of you and hope tomorrow goes smoothly,

    hope you get good care and the fluid draining makes you more comfortable,

    best wishes

    Lorraine

    on behalf of the Information & Support team

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