Worried and feeling sad: Hello, My... - The Roy Castle Lu...

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Worried and feeling sad

alice111
alice111

Hello,

My husband was diagnosed with Adenocarcinoma in early 2012 and had a lobectomy in the April of that year. The disease was detected early and despite our requests, he did not have adjuvant chemotherapy. Our annual appointment with his surgeon were always really positive and they actually stated that he was cured. However, 6 weeks ago at what should have been his last appointment, we were told there were small leisons in his lungs, on his kidney and in his liver. Since then he has has a liver biopsy and we have been told that the Adenocarcinoma has returned. Devastated is not the word...and the total lack of urgency and support from the Clinic has not helped. we are now in limbo...we were told that the original tumour will be examined for mutations and the result will inform the treatment he has. We can't talk about it ...we are both paralysed by fear and anxiety. To makes matters worse, last year he had chemotherapy for CLL ( a chronic form of leukemia) ...he tolerated that very well but we know his immune system is compromised by this. I am worried about the time all this is taking....7 weeks from CT scan to the oncologists appointment seems too long to me ...we were told that the disease is very slow growing and that the time delays are not relevant. I'm sorry to ramble on ..i suppose what I want to know is if this is disease is treatable...will the fact that he has never had any other treatment but surgery go in his favour in that he will have more options..? I know I could google a lot of information but i just can't bare looking at all those negative statistics to be honest. I'm grateful for any input and wish all of you well who are dealing with this disease.x

13 Replies

Hi Alice111

What a lovely pic of you all.

I was very annoyed to hear all the problems you've had with your hubbys problems and long waits etc.

I had a lobectomy in 2012 but had the adjuvant chemo a month or so later. I wont reiterate now but you can look up my story. I'm Hoggy. What I will say is the time since the CT to the Onc. Appt does seem an age. Get in touch with his sec. And try and get an earlier appointment explaining how you feel. I had to keep on being a nuisance to try and stay on top of it. I know they are busy and we are going into holiday season, but I would ring them incase there is a cancellation. I'm sure you will get a reply to your answers on here we are all friendly and know what you and your hubby are going through. You are not alone!

I will say I got through my lung cancer although not very well and have had subsequent other problems but I'm doing pretty well now as I near 60. You carry on regardless. Keep staying strong for you and your hubby.

Sending you lots of love and keep in touch.

Best wishes

Hoggy

alice111
alice111 in reply to hedgehoggy

Dear Hoggy,

Thank you for your kind reply ...I will do as you suggest and try to get an earlier appointment but I think you are right in that holiday's have delayed things. I am trying to stay strong but I think the shock of the disease coming back after such a long time has really knocked me for six. I need to calm down I know , although I don't let my husband see how worried I am ..

Take care and I hope you continue to do well,

Alice

Hello Alice111,

I am so sorry for the worrying situation that you find yourself in. I think Hoggy has given some good advice and I agree that 7 weeks seems a long time to wait to start treatment. It doesn't seem fair or humane to make you wait this long. I have read that there has been massive improvements in giving targeted treatments where certain mutations are found. Maybe this is causing the delay. If it is, it would be nice if the clinic informed you of this. There seems to be big discrepancies in quality of treatment from different locations. The only thing I could find was in the NICE guidelines where there is a paragraph which states "In cases where cancer has been confirmed, you shouldn't have to wait more than 31 days from the decision to treat to the start of treatment.", the link is here nhs.uk/conditions/cancer/Pa... . I found other material which seems to talk about 8 week waits, but this was in relation to suspected cancer. Perhaps the clinic are being artistic in their interpretation of the guidelines? I think the statement that time is irrelevant is wrong, misleading and not helpful. Adenocarcinoma is recognised as slow growing, but this is only when looking at averages . The actual range of growth rates is pretty large.

I don't know if it is feasible, but could you look at alternative hospitals? Sadly, I see evidence of people fast tracking through the pathway due to their ability to choose private treatment, either through insurance or having the ability to pay. In most cases the consultants dealing with the case are the same ones that you would get treated by in the NHS where the waiting lists are long and they seem to have no capacity, but for a fee, they have availability at short notice. When I struggled to get timely appointments in the NHS, I managed to arrange a doctors appointment, referral to CT, resultants appointment all arranged within 48 hours and the appointments took place within a morning. My GP was not impressed with me, but as Hoggy says, sometimes you need to be a nuisance to be heard.

I sincerely hope that your husband can start treatment soon and that he has a very good response to it.

Glynn

Hello Glynn,

Thank you so much for the information about the NICE guidelines around the waiting time for treatment to commence. I will draw their attention to this but, like you I wonder if they are being somewhat "creative" with their interpretation . In fact , were it possible, I would be happier if my husband was treated elsewhere really but the logistics of this make things difficult. I think the complex way the NHS operates now has made the organisation even more of a "post code lottery" ...it's become unwieldly and disjointed. For example , my husband see's a surgeon from another Trust at our local Chest Clinic ( who carried out his lobectomy) ...she orders CT scans and biopsy's to be carried out locally, but, when they don't happen ( as in my husbands case) she had no ability to move things on for him. She was supposed to see him with the results of his biopsy within 2 weeks of his CT scan results but we just couldn't get the biopsy performed... not enough radiologists apparently...so we ended up waiting 4 weeks for the biopsy and now another 3 weeks for the oncologist. All the delay just adds to the anxiety and also makes you start to lose confidence in the clinicians.

I think you are right about being heard ...I always feel that we are a bit vulnerable and at their mercy but there is no doubt that making a stand pays off in the end ...

Alice x

Hi Alice so sorry to hear your distress but remember he beat it once he can beat it again ...I understand it is very frightening when you feel time is ticking by ..I attended my G.P. on 6th June last with a painful back when I lay down at night .no other problems ...she send me for x ray and ĺater that morning I was told I had lung cancer ..after a week or so I had biopsy of my right lung and suspicious fluid in the same effected lung ...one week later I was told my glands on top of my chest same right side were also cancerous ..plus the fluid was also cancerous .... I was told over the phone that I would not see Christmas as it was terminal ....I have private health insurance but it made no difference ... so I have been walking around like a criminal on death row ..waiting for the dreaded day when everything would change ..I have a bit of pain but I take paracetamol and it goes away ..no other symptoms apart from a little less energy ..I rang the hospice nurse on Tues last and told her how I felt just been left with no hope or treatment ..and asked were there any trials I could try ...now my biopsy .'s are gone to the c ollege of surgeons and I have appointment to discuss the trials in detail And seen the specialist who said if I am suitable and he thinks I am then with odds of 50 per 100 ..I could have 1 year or possibly more as advances in lung cancer are being made every few months ...so my advice is Ask about trials ..you have a beautiful family don't give up it will be over 2 mts before I get any treatment at all .as it is tailored for each individual ..but worth the wait ...keep your heart up and keep asking for the help you need ...and trust in your husbands ability to beat this again ..I hear so many positive stories and I trust both he and I will join those happy outcomes ..God bless

Hi Alice,

Sorry to hear your news and can totally understand your anxiety. I also had a lobectomy in Dec 2010 (but didn't have diagnosis of adenocarcinoma 'til Jan 2011). My pathway is also fragmented like yours - where my chest clinic has a visiting surgeon (every 2 weeks) from another Trust, PET scans done elsewhere. I also did not have chemotherapy as the specific type I had didn't show any evidence of benefit.

Although the NICE guidelines say one thing, I sit on several LC committees where many of the attendees are in specialist cancer centres that operate quite differently from the more average experience of the split site/specialist your family and I and many others experience. Times quoted are monitored by commissioners and Trusts and 'breaches' have to be explained.

To answer your question, will it make a difference about him not having had chemotherapy for his LC previously - it might. In the intervening years since his original diagnosis, many advances have been made in treating LC, including identifying more biomarkers and also understanding more about genetic mutations and how certain treatments impact on the immune system as well as certain immunotherapy treatments are helping some types of LC. Chemotherapy and radiotherapy can sometimes alter the mutations in a tumour which is why they'll be returning to the original resection tissue sample (although now there is recognition that sometimes there are different mutations in different parts of a tumour so if a sample didn't capture all this, another biopsy may be required). That would have been called 'chemo naive' but as your husband had chemo for CLL, his system is no longer 'chemo naive' as it was a systemic treatment. I know it's hard to wait but one thing they do now is to assess all the options as for some mutations, some treatments can actually be harmful (so n to only doing no good but having a detrimental effect on the tumour) and pathology (like CT scan readings) are not an instant result but quite a detailed process to get it right.

My original diagnosis took over 3 months from presenting at A&E and the lesion on my lung being visible by chest x-ray but months of delays followed with misdiagnosis as asthma, broken down scanner, various other investigations and then surgery being undertaken but the frozen section to pathology delayed by Xmas/new year holidays so this latter can be a factor. In this world of expecting everything to be instant, unfortunately this can be unrealistic. I'm not always sure that clinicians/medics understand the anxiety that people go through during these waits but that has to be balanced with them getting it right and you being directed to the most appropriate treatment. If you do decide to get a second opinion and go to another centre (as I did with another problem whilst I was in the cancer pathway at my trust), bear in mind that if in the UK, the computer systems don't talk to one another and it is likely you would have to start all over again with the diagnostic tests being undertaken again from another centre which would only add to the delays and anxiety you're currently facing. I'd agree with your decision not to search the internet - there is a lot of misinformation out there and you can also add to your anxiety. I'd suggest you call the Roy Castle helpline or Macmillan helpline and if your husband has one, talk to the cancer nurse specialist to explain how anxious you are feeling. Hopefully they can a) reassure you, and b) ensure your clinician understands fully your emotional state to hopefully ensure you get resolution as quickly as possible for the right treatment for his specific situation. Since his original diagnosis, more is known now and unfortunately what this has proven, is that there is far greater variety in both types, situations, biomarkers and individuals circumstances than previously appreciated. good luck. keep us posted.

alice111
alice111 in reply to JanetteR57

Dear Janette,

Thank you very much for your reply. It sounds like you have been in a very similar situation to my husband . I think you are right about a 2nd opinion ...that will cause even more delays . I really do feel ill with worry atm , can't eat or sleep. He doesn't have a cancer nurse specialist ...so I will ring Roy Castle .

Thank you again and best wishes ,

Alice x

JanetteR57
JanetteR57 in reply to alice111

Sorry to hear how it's affecting you - often the stress can be worse for the relatives than the patient themselves. I know I was worried so much all last year for my dad when he had to undergo yet more surgery for bowel cancer and he is my mum's carer (she has alzheimer's). As others have suggested, you need to find space/outlets to help you…. and protect your own health - you can't support him if you're in such anxious state. Sorry to read you're not eating or sleeping - you'll need your strength whatever happens - whether to visit him in hospital, look after him at home or just be there for him. hope you can try to get some nourishment and if food is too much, have some supplements/drinks to keep your strength up. Macmillan care line is also for relatives not just patients so if you're up to talking, do try Roy Castle or them. I didn't have a cancer nurse specialist either but you should ask your Trust if there is one - sometimes they don't realise with patients who were treated some years ago that they haven't been allocated one. That's also in the guidelines that all patients should have access to one but it wasn't when I was diagnosed.

Take care. If you are able to read (anxiety/sleeplessness can affect this ability), I'd suggest reading 'what can I do to help?' book by Deborah Hutton. Best wishes x

Hi Alice,

My thoughts go to you and your husband. I totally understand the fear and anxiety you are going through as I was diagnosed with the same cancer & mets to brain and bones in Sept 2016. I trust the sickness and leave my physical & emotional turmoil with our Lord Jesus Christ and am now enjoying the peace and joy He has promised. Lift up the matter to Him - this burden is far too heavy for you both to carry. God's sovereign hand will work out His best purpose for you guys like He has blessed you with such beautiful family! Trust Him and your family is in my prayers.

God bless!

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Alice

So sorry to hear of your Husbands illness and the emotional turmoil you are all going through. There have been some wonderful and encouraging responses from the replies you have had. There seems to be no set time for the process of this and each person has different stories from their symptoms to diagnosis and treatment.

It is hard to understand the wait through it all and everything must seem so overwhelming. There may be an advantage in this wait if it allows for thorough analysis for mutations and the best treatment options for your husband, as JanetteR57 has written. Also this waiting time may allow your Husbands immune system to be that bit stronger in preparation for the next treatment.

You have both been through a lot and your Husbands body has tolerated both the cancer and the treatments. Do not suffer alone in your anxiety, look after yourself and chat to the people that will listen and encourage you both, surround yourself with as much emotional support as you can.

There are pratical things you could consider: (which have already been suggested from the replies)

Call the secretary to ask for a sooner appointment or if they have a cancellation appointment.

Discuss your concerns with your husbands lung cancer nurse specialist

Depending on treatment options, your husband may wish to consider a clinical trial, I have placed two links below for current trials in the UK.

cancerresearchuk.org/about-...

and

ukctg.nihr.ac.uk/trials?que...

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

thank you so much for your reply ...I will ring the nurse led helpline as you suggest ...x

I had a lobectomy 12 months ago and I had to push for adjuvant chemotherapy. Being offered it usually depends on size of original tumour. I actually sourced a trial prior to having my lobectomy and had targeted therapy for a month which shrank my tumour prior to the lobectomy which is why I was originally not offered the chemo (tumour was over 4cm prior to triial and under at operation). What gave me hope though regarding recurrence was the impact of the targeted therapy (afatanib). Look at the CRUK website trials and see if any are suitable for your husband. I work in the NHS as a GP and am really concerned at delays. The pressure the NHS is under presently is unprecedented in my 20 years as a GP. I really felt it myself when I was diagnosed and had to be really pushy. You really have to advocate for yourself and make sure follow up appointments happen and you don't get lost in the system. Sad but true I'm afraid.

Being on a trial for me made a massive difference as things had to be done in certain ways and it was very organised. Do start looking now and if there are any that look feasible take the info with you when you see the oncologist.

I wish you all the best and stay positive.

Hi Jackie,

Thank you so much for your reply which I have only just seen . Our 7 weeks wait is over tomorrow when we have the 1st appointment with the oncologist. I tried so hard to get adjuvant chemotherapy for my husband post lobectomy ...and in reality, it was due to delays that they refused to give it to him as they said that more than 12 weeks post surgery made it ineffective. ( they had failed to give him a timely appointment) ..I was wondering how they can be sure that this 14mm leison on my husbands liver is definitely the original adenocarcinoma after all these years ... I don't really understand why they don't test the recent liver biopsy to see if that has the mutations that would allow him targeted therapy...I'm so worried about the prospect of fighting for him..you are right , you really do need to be a strong advocate ...the problem I'm having is that we were so shocked by the "news" and it has made me so incredibly anxious that I'm having problems thinking rationally. I know from experience with my husbands CLL that you really do have to fight your corner.. almost like they put a value on your head and decide if you are worth the best treatments. In the two five minute appointments we had I was so shocked that I was literally dumbstruck. I have found it very hard this time to read all the information on new therapies because so much of the information is so negative. What amazes me too, is that my husband has no symptoms ..no enlarged lymph nodes , nothing ! In fact , his lung function has improved. I almost feel like asking for another biopsy ( happy to pay for it) ...the radiologist was supposed to perform a CT targeted biopsy but couldn't do it so we ended up with a ultra scan biopsy and he had great problems extracting it due to size and location.

I'm sorry to have gone on at such length ...I think I'm just trying to write down my thoughts about the situation .

Very best wishes to you , hope all continues well

Alice

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