Clinic update

[Mindini1964]

Very frustrated today, been to clinic hoping to find out about my cancer etc. No have to have biopsy re done as they ran out of tissue to test for my previous cancer. Has such a traumatic time on last biopsy that I can't face it again. I have opted for a scope but told it is 50/50 whether it will get the sample. I'm going to try it first.

Whatever the result I'm told my cancer has been there 4 a while and if acc my lung she just housing it and is inoperable. I will be able to have other treatments but only to keep it at bay.

[Rosegarden100]

My biopsy was terribly uncomfortable, and in some way is worse than the actual operation I had to remove the tumour, but I really would go for the biopsy.

Also, I’m not fully understanding why yours is in operable is it the position that it’s in in the lung mine was in the very lower left lobe and I believe it was said it was in a very tricky position

I had mine removed 14 weeks ago in Southampton

Xxx

[Mindini1964 in reply to Rosegarden100]

Thank you for your reply. My biopsy was sobad and was coughing up blood for about 45 minutes, virtually passed out as my blood pressure dropped so low. I was terrified.I'm not sure why it's inoperable. But think it's in very awkward places and there are 6 nodules between both lungs. The largest being 3cm.

Im just preying that the same can be obtained with the scope, but if not will have to have the ct guided scan.

If( which I'm almost sure it is) adenoid cystic carcinoma metastases then it behaves very differently so I'm still in limbo over everything at the moment.

Hope you're recovering well from your op x

[Rosegarden100 in reply to Mindini1964]

If I where you I would speak to one of the nurses at Roy Castle foundation xxx

[Mindini1964 in reply to Rosegarden100]

How will they be able to help when I'm still awaiting diagnosis of cancer type? Xx

[Rosegarden100]

It’s just having someone to talk to x

[Mindini1964 in reply to Rosegarden100]

Thank you, yes I will give it a try xx

[JanetteR57]

sounds very frustrating - they may get some tissue or bronchial washings which may have CTC (circulating tissue cells) if they can't reach it via bronchoscopy. don't give up - the majority of UK patients are detected when surgery isn't possible (which is why targeted lung health checks were introduced to detect patients earlier when it is possible) - sometimes it can be due to their positioning /near other structures or that it has spread beyond the lung. if yours is already metastases spread from your adenoid, then that may be different. There are now a myriad of treatments for lung cancer with several types of treatment within each mode whether surgery, radiotherapy, targeted agents (if the biopsy shows up a druggable target, immunotherapy, chemotherapy and often a combination of several of these. For now I'd be keeping myself distracted and busy - which is easier to do at this time of year than some others to keep my mind off it - mine showed up on a chest x-ray on 15/10 but didn't know until end of November that it was a large mass and had to be removed surgically with half my left lung which happened 16/12 but it was 13/1 when I had my diagnosis of adenocarcinoma (a type of non small cell lung cancer). That was in 2011 and the current treatment landscape bears no resemblance to back then and more treatments being introduced all the time. good luck with the wait for the various investigations that are as much to rule things out as in but can also assist in personalising the treatments if specific mutations are found.

[Mindini1964 in reply to JanetteR57]

Thank u 4 ur reply, hope u are doing well qfter your treatment? Yes hoping 2 have some choices when all the tests are done. Praying 4 success of the tube biopsy

[JanetteR57]

Yes, I initially recovered well and more than recovered fitness by increasing my swimming which I didn't do from the October - April but went onto swim far greater distances/frequency than since I took it up in 1990 which helped no end. I was back at work by the end of March 2011 and have worked, swum and travelled ever since. I was 52 and a never smoker at diagnosis so told that recovery was up to me - the more active I could be, the better the lungs would redevelop but sitting/lying around would do me no good - that was good enough motivation for me to feel an element of 'control' in what felt at times like there was no control at all with the various tests/investigations etc.

Since 2013 I've been involved in cancer research and advocacy and find helping others, learning much more about it and helping medics/scientists/researchers understand and appreciate some of the issues that patients face helps me no end. Having lost 2 sisters and a niece prematurely - none from cancer - I appreciate every day and grateful for my treatment.

I've just had a nasty chest infection that hospitalised me for just under 3 weeks so had a lot of treatments and somewhat floored by the experience but improving all the time.

hope you get some answers and treatment pathway before too long.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Mindini64

After your previous experience there will be no doubt that you will be feeling very anxious and apprehensive about future biopsy. This time of waiting for investigations and results is understandably extremely stressful, as JeanetteR has said over the last few years treatment options for lung cancer have improved, with newer therapies still being developed, this gives lung cancer patients different options of treatments which might be suitable for them.

If you have any questions call ask the nurse on 0800 358 7200 Monday to Thursday 0900-1600 and Friday 0900-1700, alternatively you can email us at [e-mail]

Kind regards

The Roy Castle Support Team