Staging

My mum is due to go for a biospy after a scan and CT scan showed a shadow in top of right hand lung. She only went to docs after she had a cough that would go away after a cold in Feb. From what the specialist has said he suspects it to be LC, which I think we are all expecting - but mum seems to be showing no symptoms other than clearing her throat once or twice a day? In terms of staging would more things be happening if it had spread or am I looking for small rays of hope where there isnt any?

The Biopsy isnt for another 2 weeks as well - is that just typical of waiting times as surely every day is vital? So many questions and so confused and scared :(

12 Replies

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  • Hi Rob,

    I thought I'd reply as i saw you haven't had any responses yet - i guess it's quite quiet here on a weekend.

    I can't answer your questions to be honest, I don't want to mislead you.

    My mum was diagnosed with LG on wednesday... my world has fallen apart. I am scared of what the future will bring. They are quite certain it has spread, but can't tell us more as she needs to have more scans.

    What I can tell you that it seems that it is normal that there is a lot of waiting between appointments, tests, scans etc... and yes it is very frustrating.

    My mum is due to go to St Barts in london to have an op to have her lung sealed as she is getting a build up of fluid there, they haven't given us a date for her to go, but we have already waited 4 days, and it's looking likely it won't happened until next week (wk commencing 1st june.) The fluid on her lung is making her breathless, they should be sorting it quick!

    I feel like i am in a nightmare at the moment, and i am hoping i will wake up.

    I wish your mum all the best. Lots of love to you both x

  • thanks for the reply, yeah I know the feeling of fear - hard to counter balance it with projecting strength and positivity for our mums at same time.

    It really is a journey into the unknown and a journey as families we may not all make it back from. Im trying to only read the positive stories now as the bad ones drain me emotionally. It does feel like a nightmare that you think you will wake up from but ultimately dont. Ive started to approach the situation from a spiritual point of view and to help me deal with what lies ahead - thinking if the worst happens then mum as just gone on ahead of me and my brother of this journey we have been on as a family and we'll catch then up later on. After the initial shock think im also starting to develop a fighting spirit that I need mum to adopt to fight the awful disease - so I would advise listening to music that gives you hope and strength, reading quotes that empower you and basically just doing and saying all you can whilst your mum IS still here. I never been a spiritual kind of person but I think im starting to tap into the energy that people bring and positivity that can help your mum and family and friends. Despite it obvious faults the human body is a wonderful thing and am hearten by stories of people even dignosed at stage 4 that are still around and the success stories - dont read the bad ones, just the good ones and be single minded and focused on imagining the future with your mum and the day you get the all clear.

    Wish you and youre mum all the luck in the world and hopefully come out the other side stronger than ever before with a new perspective on life.

    Stay strong and fight x

  • Hi Rob This my time schedule when I was diagnosed

    31/07/2013 Chest Xray

    05/08/2013 Xray result abnormal

    06/08/2013 Referred to Specialist Hospital

    15/08/2013 Meeting with specialist no info

    27/08/2013 CT scan 29/08/2013 Bronchoscopy

    05/09/2013 Lung function test (Meeting with Specialist Diagnosis Treatment etc)

    05/09/2013 Diagnosed with non small cell lung cancer stage 2a possible treatment

    lobectomy remove and cure depending on spread or chemo

    11/09/2013 meeting with surgeon to discuss treatment

    17/09/2013 PET scan Cobalt Unit Cheltenam

    10/10/2013 Pre op Assessment at Heartlands Hospital

    24/10/2013 Lobectomy op Heartlands Hospital

    31/10/2013 released from hospital

    so you can see that there are usually a week or 2 between appointments from start to end almost 3 months it is a long drawn out process

    good luck for your Mum fingers crossed it might not be cancer

  • Thank you for responding - really helps to communicate with others who truly understand. Surely it must be LC at this point as what else could it be if they suspect it?

  • Hi Rob sorry that you and your family are going through a very stressful waiting game at the moment, I was diagnosed aged 52 with LC almost a year ago and like tjbro says its a nightmare waiting for app/scans ect but im glad your fighting spirit has now set in, your mum will need every bit of strength and support she can get from family and friends as it can be a very lonely and frightening time for those with the diagnosis, try to take one day at a time and keep us updated. Take care

    Julie x

  • Hi Rob, it's an extremely emotional time of your mums diagnosis but it can be difficult for MDT to plan out her treatment path until all the various scans and test are done. Hopefully the biopsy and I presume she has had a PET scan will give them the information to plan her treatment strategy. Even if the diagnosis is LC if it's early enough then the outlook is far better. Please tryand stay positive for your mum and try and make sure she eats and exercises well.

    Good luck Rab.

  • Hi I hust read your post and wanted to say that between appointment with my Oncologist to Scan to Biopsy and back to Oncologist it took a month all in and that was me being fast tracked. It is frustrating as you begin to think they have forgotten about you but not the case, the team are usually doing other stuff in the background. Only know this as I worked for my Oncolgist for five years. All you can do is be there for your mum and support her through her tests and if you are struggling as to speak to a Clinical Nurse Specialist at the hospital your mum is attending as they are more than happy to help family members through how they feel and answer your questions. Failing that Macmillan nurses are awesome and will help you too. These people are not just here for your mum but you too.

    Good luck and best wishes to you and your mum. Elaine xx

  • Hello Rob & Tiger

    Going through test, waiting diagnosis and treatment can be a terrible time for family and those with lung cancer. It can be really hard to focus on what you know and not get caught up in the "what ifs". I know you will both get good support from the members of the forum, who have much unwanted experience of these situations.

    For both of you, think about what you need and want to know for yourself and try and keep this as a separate from what your mum might need/ want. Being a caring, supportive child doesn't mean ignoring the impact this is having on you.

    Your mum(s) should each have a nominated Clinical Nurse Specialist/ Lung Nurse. They are there to answer your questions too and can always find out if/why tests and procedures are taking a while. If you have not been given a contact person we do have the details of the Nurses attached to each unit.

    We also produce a pack called "Lung Cancer: Answering Your Questions" which may be a good starting point for the kind of information that will help you navigate what is going on.

    Please do visit the website roycastle.org for more information or call our helpline on 0333 323 7200 options 2,

    best wishes

    Lorraine

    on behalf of the Information & support team

  • hi rob my mum coughed up some blood about 6 weeks back she had various test over following weeks xray bloods Bronchoscopy

    ct/pet scan..she went back few weeks later for results and was told she has LC lower left lung which I also seen on scan image..was then told she would have to have a lung test function 2 weeks later and to go back to consultant where he would advise what treatment to do..this she did few days back went to see dr with me after test to find out what stage and treatment...was then told that she probably doesn't have lc now and that it was a false positive reading..my mum and myself were stunned how can they get it wrong mum and family gone through hell last few weeks with worry..consultant wants her to have another Bronchoscopy

    which she hates in few weeks then go back to him 7th july..its highly possible that it was a sever chest infection..heres hoping her 3rd bronchoscopy will confirm that and hope theres no further mistakes as in yes you have lc to no you don't then back to yes you do x

  • Hi Denise,

    That's great news (fingers crossed) that all turns out to be a false alarm for your mum and you can back to living your life. I pray for my mums to be something like that but I doubt it as there was a shadow on xray and something was on ct scan. i still can't believe this is happening as she's never smoked and there's no history of cancer in our family. I'm so scared for her and a potential life without her and seems life is never going to be the same again once it's confirmed.

  • Please don't jump to conclusions until all of the tests are in. My husband didn't cough at all or had any synptoms. Your mother has alot to be thankful for that she has you, my dear. Barbara S.

  • Your mother is very lucky that she has a wonderful son such as you. Don't jump to any conclusions as there are other possibilities. When you do find out use your love for her to conquer all. My best to you, dear and to your lovely mother. Barbara S.

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