Treatment completed: Well here I still... - The Roy Castle Lu...

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Treatment completed

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Well here I still am after an upper right lobectomy and four cycles of chemo final one yesterday I know I have two rubbish weeks to go through with numb feet and general aches and unexplained pains .However I am so relieved now .I know longer currently need to go to chemoland where everyone one was lovely but not a place anyone wants to be .My work colleagues are all doing the mud run in central park Plymouth on Sunday am in the name of cancer research because of my predicament .They were shocked that a non smoker should get this disease some have actively tried to give up smoking since my diagnosis which is a good thing .If I was well enough I would do it with them .But maybe next year instead but well or not just for their efforts I will be going to take pictures and support them ,which is good .

I have asked my consultant for a scan after a year as I know I will at that point be anxious that this cancer will show up somewhere else, Plymouth just wait for symptoms I would prefer to get ahead of the game an xray may show a new lung cancer recurrence but not a brain liver adrenal gland spread .I don't want too many scans as they can cause cancers but I would like one at this point.

So just got to wait and see now pick up the pieces from where I left off ,discover what lung surgery has truly left me with and get back on a fitness regime whilst it is cheaper for me, lose a bit of weight get as healthy as I can be .The big question is do I go back to work? Or do I retire I am leaving those conversations with my boss until September but I will have to make a decision when I have had some recovery time .i am 55 so it would currently be early retirement but the job I have is stressful long days and I worry now that they may bring on health issues, but I would miss all the social elements to my work place which would really disappear once you have left the work place ,Hard to even beginning to think about . I have worked since I was seventeen .

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jillygirl profile image
jillygirl

Hi Diane, glad your on the road to recovery. :)

I had my right lung removed two and half years ago (pneumonectomy).

You do right asking for follow up scan.

I have now just gone through surgery for an adrenal gland cancer. All has gone well and I feel better than I have done since before my lung surgery.

Take care and enjoy life. :)

in reply tojillygirl

Thanks for your support ,and I am glad your feeling better now after your recent surgery .x

Big Congratulations Diane, getting through your full chemo treatment is great news and although you won't feel like it just now you will get some satisfaction of staying the course.

Never mind the mud run, what you have and are going through is ten times tougher than any run. You're right and you know that you still have 2 crappy weeks to get through before some semblance of normality returns. But remember this is the new normal, things will always be a bit different, not worse just not pre-op normal.

Take your time to build up your strength and stamina and keep those lungs expanding.

I totally agree with you asking for scans every year, I presume you will get 6monthly X-rays as well. I wish I'd asked for scans yearly and X-rays 6 monthly as I feel this may have picked up my second cancer quicker.

As for going back to work, please make sure you are strong enough and can you not go back part time to start with and then only if you feel up to it move on to full time or even job share?

Once again Well Done now relax and enjoy what is supposed to be summer.

Rab

in reply to

Hi Rabbi , Thanks for the advice it was because of this sight that I actually made me ask to get a scan ,realising the frequency in which cancer returns a.They keep telling me I have a good chance of a cure but I feel a little sceptical about that as all the statistics are a little gloomy for my type of cancer there are no guarantees although I am trying to stay up beat having got this far . Work will let me do half days and weeks initially but the job will not change in the long run ,that's what I have to consider so will I be up to it ? At the moment I don't really know .However I am so relieved for now I have completed the chemo hooray and although I may stay sick for another month I don't care as I am keen to relax and recoup .

Good luck with your current treatment programme hope its going ok for you, although each pill or radiotherapy regime has its difficulties ,which I hope your managing ok, thanks again .Diane .

janeg4 profile image
janeg4

Hi Diane its the best feeling finishing your treatment you enjoy it to the limit lol . Its amazing how quickly you start to feel like your old self once chemo has finished.

In Scotland routine follow up is chest xrays , i couldnt find any hard and fast follow up guide lines in the UK , it is very vague . I did a little research and found out that in USA and Europe well most of countries in europe suggest 6 month CT scans for first two years then yearly for remaining 3 years of follow up period.

I made a case to have the scans like you I wanted to be ahead of the game should it return.My thorax and abdomen are the areas scanned not my brain , which would only be scanned depending on symptoms and this is also the case in USA .

Debbie you are correct about getting to know the new you post treatment especially the new aches n pains you will notice that you get .

I dont mean to ramble on please forgive me , as far as work i worried about returning but neednt have people were good as were my patients, I did decide after several months to reduce my hours and I now work a 3 day week which is much better and keeps your hand in.

I wish you the best with your recovery and I am following your posts .

my best wishes to everyone

Jane

in reply tojaneg4

Thanks Jane ,for words of encouragement I just don't know what the initial surgery will leave me with that's not going to be apparent until some of this chemo effect has left me ,that's why I hesitate about work ,I also work in the caring profession and it is not really light work and at this point I couldn't even think about changing direction or working in a different area .If I do leave at least I will have a big party with the people who have come on some of this journey with me ,I may go back for a while just to see how I will be .It's still a maybe .

Regarding scans I did a little research and contacted NICE who got back to me suggesting there were no specific recommendations regarding scans that there wasn't any research suggesting that scans would make any difference to outcome .They also said it was down to the health authority you were been treated by ,I have to say my consultant was ok about it and understood my concern obviously explaining that it wasn't the usual procedure but she would book me one anyway. Which I was relieved about.

Its encouraging that you have got back to work ,so you never know I might get there too .Thanks for your support .Diane

Janey_H profile image
Janey_H

Hi

I was interested in this thread as I saw my oncologist today. I had my RUL removed seven weeks ago and last had a scan at the end of March. We were talking monitoring and he would be recommending every three months for the first year, six monthly for years 2-5 and then annually from years 5-10. These would be CT scans. He was concerned however with the amount of radiation this would give over time and could induce secondaries. Suggestion was to have MRI's instead but these would probably need to be self funded (not sure of cost of this as yet).

I am getting a CT and MRI of my head done as a result of my meeting today as I wanted the quickest as thought it had been a long time since my last scan. I was wondering if others were having MRI to avoid the associated radiation risks? I hadn't considered X-ray as another monitoring tool but presume that doesn't have the detail that an MRI would have?

It is a fine line between having them regularly enough to pick up any recurrence early and not having them so regularly that you cause an issue that would otherwise not exist. I am wondering whether to switch my first check up scan to MRI and pay for it rather than have more radiation (I am 45 and have had radical radiotherapy prior to surgery). I think he said that 1 in 100 CT scans will cause an issue - it feels like Russian roulette a bit!!

Any thoughts appreciated

Janey

Xx

Hi Janey ,I just don't know I was surprised by my own health authority not to scan unless symptoms occur it seems so careless ,although I sort understand some of the reasoning behind it ,Scans cause anxiety not enough would also cause anxiety, scar tissue sometimes looks like a cancer .However,I have various aches and pains in this new body so I don't think I would know what a symptom was it is a dilemma.One thing for sure until I have 10 years free from cancer if I am that lucky I won't feel anxiety free .I wish there was more clarity over these issues .Good luck either way and take care .Diane.

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