I have just just had my phone appointment with my Oncologist with the results from last month's CT scan. A lot of questions about my breathing, walking distances, if I had a cough and weight loss led me to the news that there was an increase of shadowing around the tumour. I was then asked if I was happy to have a PET scan or leave it for another CT scan later. Of course, I said that I was happy to have another PET scan, I am well versed with having both CT and PET scans, his words "a veteran". He thinks that it is probably just more scarring from the Radiotherapy (I did receive 5 days worth of high exposure), but not 100% sure hence a PET scan to see if the tumour has become hot (active) again.
I would be lying if I said that I had zero concern, but I am pretty relaxed and not stressed out about it, he sounded very happy with my answers to his questions. It is not the first time I have been in this position and it is Sharon who is the worrier.
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2greys
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It has been 3 1/2 years since being first diagnosed, with a few bumps and disappointments in the road along the way. I have learnt to live with Damocles' sword hanging over my head during that time, most of us here have learnt to live with their conditions as well. The fact is none of us have any choice in the matter and 'crying in our soup' is not going to help.
Not the best news but you do seem to be quite positive about it, I would be quite stressed. I hope that the results give some good news. Sending you lots of best wishes and virtual hugs🤗🤗🤗🤗xx
I'm sorry about the appointment. You are so full of wisdom, positivity and kindness a true inspiration. I think a lot us could do with taking a leaf out of your book re stressing! Wishing you well with PET scan x🙂
I hope you'll get the PET scan soon so you'll know what's going on. Do you have an appointment yet? Thinking of you and sending lots of good wishes. Hoping the results will be as you suspect, more scarring.
No appointment as of yet. That is down to the Radiology dept. and the private contractor, on site, who perform the scans, I know from past experience it will be very quick.
I have my, face to face, follow up appointment with my Oncologist on 09/07/2021 at 9:00 am. that is according to my personal electronic hospital record. I said it would be very quick .
Still waiting for the PET scan appointment which will probably sometime next week.
I hope that the PET scan shows only scarring 2greys. I do admire your ability not to play 'the stress game'. Best wishes and let us know how you get on xx
Hi there @2greys and i must say how well you seem to be about either of the scans and the possibility that the shadowing on the lungs is down to scaring. Sharon is acting as any partner//wife would do. She is a strong lady and thank goodness because you've all had your scares before. Hoping all goes well when you have your scan. 🐿🌈😷 .
I would certainly be worried if it was me, but we are all very different. I hope all goes well with the pet scan and please let us know how you get on. Hope you both have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
We had a saying in the military " hurry up and wait" where after a frantic period of preparation the actual briefing for the mission was actually short of the detail you needed. After years of this my attitude was I will worry about it once I actually know something not speculate on the possibilities and plan for each. Hopefully your wait for answers will be a short one.
Worrying for you both though, hope it’s nothing. All the best xx
Well you have been making the right choices for so long now I don't see you messing up this time. 👍💪
I hope that you get your PET scan quickly and of course, that it is good news. Your no nonsense, positive approach is such a good example to all of us who have a wobble now and again.
Its good that you have control over how much you stress, as you say this leads to problems. I hope you get seen to quickly and its down to the amount of radiation you had. Sharon is bound to be worried. Will be thinking of you x
You are so positive and proactive with your health that I'm sure you'll make the correct decisions for yourself. I bet Sharon is worried- I think that sometimes our partners and families are more worried about our health than we are as we have to take it in our stride and often cover up our emotions. Take care. Hope you get your appointments soon x
Best of luck with it all. Many of us on here are probably in the Sharon camp but can admire your coping style. Sending love and light to both of you ( although I have a sense that your pragmatism may find that expression slightly annoying - sorry)
Reserving energy for those challenges that come along with this condition is a very difficult action but when we can do it by avoiding worry it does help. I hope that your PET results are as you hope and that the face to face appointment with your consultant is informative. Take care of yourself and Sharon.
Good luck, I used to do all the worrying for my hubby and he used to say que se rar what will be will be and I amount of worrying is going to change it x
I realise that no two patients are the same even with identical diagnosis. As you may recall my husband diagnosis was about 6 months later than your own. We have moved along with the usual X rays, CT scans etc. During the pandemic we have been fortunate to still get these followed by a telephone consultation to discuss the results. The last one was in march when we were contacted by a member of Professor Hattons team I answered the call and the conversation started by " Its on the move " My husband and I was devastated, emotions that you are familiar with. After an initial sinking in period, I contacted the Lung nurses, did not mince my words about the insensitive manner we felt the news had been passed on to us. two days later we were off for a PET scan. The guys who performed the scan said the results would be with the MDT to be discussed at their weekly meeting. There was the few days of stress, that never gets easier. Then the call to tell us that the problem was with radiation scarring . Big sigh of relief again. As this was happening it felt like Chinese water torture so I can relate to how you must be feeling at the moment. There is nothing I can think of saying to you only be strong . The radiation that was administered was of such a high dose that scarring must be the biggest side effect of the treatment. Please let us all know how you are.
Yes I do remember. Perhaps strange to be following along such similar paths, but maybe not, My last PET scan, 6 months ago, showed extensive scarring throughout my lungs. In all probability this is heavier scarring around the tumour caused by the same high dose. It sure takes it's time to develop. The other scarring maybe from the Covid infection last April. I can only wait and see. I am used to that infernal waiting game now, so worry is pushed well and truly to the back of my mind, but like yourself it is Sharon that is worried.
I also forgot to mention the fact that since the radiation my husband was curious as to why his chest bone on radiation side had shrunk very noticeably . We persistently whenever we had a chance, mentioned this to any medic that was available, They all looked astonished followed by was it like that before treatment. The answer was of course it wasn't . I am really cynical now I think more time should be spent dealing with after effects of such a harsh and newish treatment, Same dangerous Radiation different application. I don't want you to think that these gripes are anything to do with appearances, much to old for any of that, but it would be nice to know that after effects are monitored for future development of treatments. Sorry to have rambled on but it is a dreadful disease and I believe that anyone who has been on the receiving end of treatment can never be the same person again. You are correct in saying that Sharron and myself are prone to the worry and anguish and wish that we could do more to help. I will keep everything crossed that your results are no pick up. In our area we are served by Alliance Medical who don't seem to be busy for some reason lets hope you get a quick appointment, taking pressure of yourself and Sharron.
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1st timer and terrified 
Hospital appointment 
