Hi all you good people. I received my diagnosis on Friday. Waiting for guided CT biopsy to determine treatment plan
From my research I think this might mean grading and staging? They said it would be drug treatment - no mention of an operation. Nurse also mentioned books about pallitive care to help my children understand so I'm now putting two and two together and wondering if there is any hope.
Haven't told anyone yet and I am dreading telling my husband. I wanted to know as much as possible before I told him but he will need to drive me to appointments so I can't put it off much longer. I thought it might be easier to know everything than tell him as and when as waiting is so difficult but now I think I've been really selfish and waiting for results might have given him time to prepare mentally. Oddly, keeping it to myself felt like I was in control which I know will shortly be taken away from me.
I'm not sire if I'll be having the scan this Weds or next. Currently on Augmentin - coughing up the worst phlegm I've ever seen/tasted/smelt so maybe I have the type where an excess of sputum is produced.
I realise I am very uninformed, after reading a lot of other posts, but I couldn't think of any questions to ask at my appointment, except perhaps "How long have I got".
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Aamar
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Hi Aamar. Like you I was diagnosed with Adenocarcinoma of the upper right lobe in April this year. I understand completely what you are going through with the waiting and various scans before treatment starts, this is the worst part! The guided CT scan and biopsy is to confirm and stage the diagnosis and this is essential to receive the correct treatment. I had a large tumour and was treated with Chemotherapy and Radiotherapy at the same time, luckily this shrunk the tumour and I was then able to have an upper right lobectomy in September to remove that part of the lung. My latest scan was cancer free! Please tell your husband, you need his support and it will be easier for both of you to go on the cancer treatment journey together. My husband was wonderful and I couldn't have got through the months of treatment without him. It is difficult to know what questions to ask but I really think you need to talk to someone and there is a helpline on this site and on the Macmillan site. We've all been through what you are going through and had the same thoughts but at the moment you don't know anything for sure. Please don't think the worst. I now have my life back and I am very lucky. I really hope you will know your treatment plan as soon as possible.
Your reply has given me so much encouragement, thank you and congratulations on being cancer free. I have it on both lungs. It's at the base of the right lung, not sure about the left. What stage were you?
The specialist nurse is phoning me tomorrow so I'll prepare any questions I have in advance.
Thanks again, and I will try not to think the worst.
Hi, I am so pleased you are speaking to your specialist nurse tomorrow. I would ask if you can have the CT biopsy and other scans ASAP. I had to chase up appointments. I don't know where you live but luckily all my treatment was carried out at the new Cancer Centre in Guys which was brilliant. I am T3 stage. Good luck, let us know how you get on.
We went through the same as you, starting in mid-March. A complete bombshell.
I think you should tell your husband - I understand completely why you didn't you will need the support, and he will need your support. My wife has been a rock. We told our two children (aged 16 and 18), sitting round a table, as soon as we had confirmation from the first CT scan that it was stage IV.
I didn't think I'd still be around now, three months on, what with all the talk of mets (I have four in my brain, several in my other lung) and palliative care, and the frustratingly slow pace of tests and treatments. But here I am, enjoying the lovely weather, and waiting to see if my three cycles of chemotherapy have done any good. I have some radiotherapy on my neck, which was very successful and an operation on my vocal chords - also successful.
There has been talk of other lines of treatment, including surgery, so even if the chemo hasn't worked there seem to be other possibilities.
I asked the `How long have I got?' question quite a few times, but the answers were never helpful. We prepared for the worst (updating my will, transferring things such as car ownership to my wife, discussing funeral, clearing out the loft, etc). It was good to be busy to help deal with the worst of the shock. Like you, I did a lot of 'putting two and two together' but I don't think I came to the right answers (if there are any). I have not been lucky - my cancer won't respond to the new targeted treatments and there aren't any suitable trials - but I am still here and now that i am no longer in shock I expect to be here for a good while.
Thanks so much for taking the time to tell your story - how strong you sound. I know what you mean about there always seeming to be other options - I can see from people's stories that there is always room for hope.
I don't know if the cancer has spread or anything like that yet - I guess it's all to come - I've added a few more questions to my list for the nurse tomorrow based on what you said.
Please let me know how the chemo has gone and I will keep trying to be positive.
So sorry to hear this Aamar but as you will see in this site quite alot of people were given time spans they would survive to but have lived way past predicted time. Alot dont have operation but have other treatments . Hope all goes well for you.god bless
Thank you. Yes, thete are some fab stories and a lot of positive outcomes which are truly inspirational and reading them is really helping. Where would we be without forums and support from others goung through similar experiences?
sorry to read your news. like you I was shocked when I was told I had to lose half my left lung in Dec 2010 and diagnosed with mucinous BAC lung cancer in Jan 2011 and a 7cm tumour removed. Like others, I finally got round to writing a will and certainly never thought I'd still be here after what I read on the internet at the time. Things have progressed hugely in lung cancer knowledge, research and treatments in the last few years and a lot of information on the internet is woefully out of date. If you must use the internet, I'd suggest trusted sites like Roy Castle, European lung foundation (lung cancer project), CRUK, patient power. Only around 15% of patients are suitable for surgery (depends on the stage, position and health of the patient) so the majority are treated without surgery using a range of treatment combinations -traditionally chemotherapy and radiotherapy but in more recent years, these have been added to with targeted therapies dependent on the actual biology of the tumour/person's genome and now immunotherapy as well as SABR/cyberknife which for some have the same effect as surgery. There is some really good information on Roy castle website about the types, stages and treatments as well as living with lung cancer issues. Although I am now informed as I am on a number of lung cancer research committees and attend conferences, I didn't start this until 2014 - several years after my diagnosis and treatment. It is usual not to be informed and often the information we are given is in very clinical or scientific terms - do ask your team and nurse if you are assigned a specialist nurse to explain in ways that you understand. I totally get your position about your husband - we all deal with things in our own way. I only told my partner and a few close friends and to this day, my own family are oblivious to cancer experience - for all sorts of reasons but mainly to protect them and me especially as I had surgery before diagnosis following an emergency presentation (where I stayed a week despite finding the lesion, it took over a month before CT). That emergency stay coincided with my late sister's birthday( she died aged 40, 9 years earlier) and one of my appointments coincided with the anniversary of her death when my mum makes herself ill every year (she has alzheimer's and can no longer remember why that day is significant) and my dad looks after her at home but has had his own cancer journey (3 lots of bowel cancer including more surgery 3 years ago) and felt it would have just been too much for them to bear. I often attend outpatient appointments now and my partner is not interested in hearing the detail - in his mind, what will be, will be and like you, it feels like an element of control to filter what I choose to tell people at any given time. I have to say I was surprised that some I didn't expect to be supportive were hugely but others fell away. Not everyone can cope and many have their own negative experiences impacting on their feelings. I have met patients in the last few years who have way exceeded their 'suggested survival date' - some from more than 20 years ago when the more modern effective treatments were not around. Do not give up - and you will find the strength and courage to tell who you need when you want or need to. good luck.
OMG, what a journey you have been on and doing so much good for having been on it.
My inclination is to tell as few people as possible - I don't want to be treated differently and have to keep telling people what's going on treatment wise but I guess how I cope physically etc will determine that to an extent. We live in a very rural area where everyone knows what everyone else is up to!
The medical jargon has already been a bit overwhelming - some consultants seem to be better at explaining stuff to us mortals better than others. Knowing that surgery is only an option for a limited number is helpful. I don't know much about targeted treatments yet - I guess I am going to be gaining a lot of knowledge in the next few weeks.
Hi Aamer, It's a bombshell isn't it getting that diagnosis, and then waiting for all the tests etc to determine treatment ?? However, I was given a Stage 4 diagnosis 5 and a half years ago!! SO please don't despair.I have had treatment by oral targetted therapy along with a short time of radiotherapy. Lung cancer treatments have moved on very fast and what was a killer within a year has now changed so much. I, along with others, would urge you to try and share the news with your husband asap. What do they say about a problem shared ?? is a problem halved. All the very best especially whilst waiting for test results. Love Diz xx
Hi - stay strong, I am stage IV NSCLC with brain and adrenal gland mets. I was totally devastated last October when diagnosed, surgery not an option. However I am still here still strong and immunotherapy is working well on my lung tumour which is shrinking. Radiosurgery tackling the brain mets so all good!! Wishing you the best of luck
- there are new treatments coming on all the time - positive thoughts!! x
As you can see there are several others in the forum who have been in similar circumstances to you and they are indeed inspirational.
We have several publications which are designed for those affected by lung cancer.They can be accessed online at roycastle.org/how-we-help/l...
There is a pack( a hard copy) I can send you if you wish which contains two booklets "Managing your lung cancer diagnosis" and also "Managing lung cancer symptoms"
There are some questions you might want to ask the specialists at your nest hospital appointment. You might find it useful to take the Managing your lung cancer diagnosis booklet with you(or print off pages 48&49 from the website). In page 48 there are sample questions you may want to ask the specialists. You or your husband can then write down the answers.
Please don't hesitate to contact the nurse led Helpline Freephone 0800 358 7200 if you or your husband would like to speak to one of our team in confidence. Please email lungcancerhelp@roycastle.org if you would like a hard copy of the publications sent to your home address.
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