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Adenocarcinoma - Dealing with the bad news

Readingfan
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Hi

Let me begin with my background. I had retinoblastoma, a type of eye cancer, when I was a baby. I had my right eye removed and successful radiotherapy to treat my left eye. I had relatively useful visoin in my left eye for 30 years and have had a pretty decent live.

Now in my early 30s, I noticed a lump and swelling above my left eye early last autumn. Even with my previous history, it took months to get anywhere with scans etc.

I was diagnosed in February with lacrimal gland adenocarcinoma after a biopsy. Initially they suggested they might be able to save my vision but I never really thought that was realisitc. I was eventually advised to have surgery in March to remove my left eyeball and wider area, which has left me completely blind but it was hoped would get rid of the cancer, at least for the time being.

A positive margin was found and I was advised in April that I would need to have 6 weeks of radiotherapy. I was meant to have it done in London but was eventually transferred nearer to my home to reduce travelling.

They decided to do a MRI scan first and found that there were still visible signs of cncer there, even though the surgeon was confident he'd got rid of everything visible 8 weeks ago, which suggests it might have grown back quickly. A CT scan didn't show any sign of spread to other parts of my body.

I was advised that radiotherapy was not normally effective on this type of cancer and the chances of it curing it or even giving it long-term control were slim. The limited reading I have done elsewhere suggests this i quite a rare and normally aggressive cancer and even with removal of eye and radiotherapy survival is ofte three years or lessn.

I know there have been medical advances in techniques to control cancer but I'm not sure if any will be suitable for this type.

There's the small possibility of a second surgery but they think it might be too extensive. 

I'm due to find out today whether they will advise consideration of furhter surgeyr or we jump straight to radiotherapy.

I find the nights the hardest bit - I've woken up by 2 for the last week or two and not got back to sleep, hence why I thought I might as well type this!

Does anyone have advice for questions to ask or how to try and process it all? I largely figure that there's no way of knowing exactly what will happen when and whilst I'm here I might as well try and get on wih life and carry on as best I can - but it's not always so easy!

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    Oh no, how horrible for you - this disease really sucks.

    My only advice is to try to stay positive, never accept that there is a definite outcome to your condition, even if you are kicking the can down the road at the moment, we llive in a wonderful age of science and discovery with new treatments and approaches coming online all the time, just try to keep yourself in the game and take one day at a time - a cliche but so true, you never know what tomorrow may bring.

    Keep Smiling

    Si 

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    Im sorry to read that your having such an bad time with your cancer i to was diagnosed with the same ,

    but its in my upper left lung ive had two weeks of radiotherapys and cemmo and i have two more weeks to go. Hopefully thats all the treatment i will need but surgery is an option if required i to am up into wee small hours pondering this and that so you are never alone we are all out there supporting each other good luck to you.

  • Offline in reply to mickyw

    Thanks for the replies. The decision has been made to go down radiotherapy route. I have had the planning session and a mask fitted and so on, and am due to start early June. It definitely feels better to know something is soon going to be acively done and there is a plan in place to take me up until mid July. 

    Good luck for your treatment with lung adenocarcinoma. Do you think there will be any other medication/drugs you could take as well as your radiotherapy? I believe it is relatively rare what we have so sometimes I wonder how much is known about it in terms of treatment options.

  • Offline in reply to Readingfan

    well im into my last week of radiotherapy but ive had two chemo sessions as well touch wood it will be all good.

    basically if they are sure its gone i will get 12 months imunotherapy once a month injection and if not surgery keep your spirts up im going to turn my mask into a peice of art work.

  • Offline in reply to mickyw

    Have you finished your radiotherapy yet? I have not been offered chemotherapy or immunotherapy, at least not yet, which I'm a bit surprised by. I had my first radiotherapy appointment today. However, they only hit some of the planned fields. From what they said, my body was in the way of the machine or something so the planned anglesweren't feasible? I'm not sure exactly what this means or if it's common. It certainly has shaken my confidence in it a bit!

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    Hi Readingfan,

    I have apocrine adenocarcinoma which is a type of skin cancer that started as a lump on my scalp and found to have already spread on diagnosis.  

    Rare cancers are really hard to deal with as you quickly realise that the doctors don't know that much more than you and everything is pretty much educated guesswork when there is no standard treatment pathway to follow or data to reference - especially the absence of data, which seems to be more of a challenge for doctors than defnitive "this doesn't work" data.

    After diagnosis, I had counselling which helped me realise that this wasn't something I could control but it was in danger of controlling me if i let it and so have learnt to compartmentalise all the cancer stuff so it doesn't occupy my every thought and I can get on with life.  I continue to work full time and have a busy family life and my ongoing cancer treatment fits in with that, not the other way round.

    It also helps to have a forward thinking consultant.  Mine referred me almost straight away for clinical trials and I ended up on one for 2.5 years before things started to progress again.  Perhaps this is something to suggest to your team?  They can look at the genetic makeup of your cancer which might open up targeted treatment options - this is what happened in my case.

    One final thing is to acknowledge that there will be good days and bad ones and you just got to roll with it.  I'll have bad days when it all completely overwhelms me.  I'll have a good cry, a long bath or some other little treat and then feel better about it all the following day.  Funny how the mind works really.

  • Offline in reply to Hippochick

    Hi everyone. I just wondered how everyone was getting on with their treatment and where everything was now at? Hope you are doing o.k 
    I have not been doing too bad relatively speaking. I had a baseline MRI scan in October which revealed minor enhancement. Apparently this could mean cancer is present or might just be swelling and changes from all the radiotherapy - I'm not sure exactly what this means? 
    I had a follow-up MRI scan today and should get results around Mon 17th Jan so will have an idea of what's going on then. 
    I've asked a bit about clinical trials but it's not gone any further yet. My doctor seems quite caution and more focussed on standard treatments and seeing how I fare with them first.

  • Offline in reply to mickyw

    Hi Micky, just wondered how you were getting on and where everything was now at for you? All the very best.

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