Stage 2b adenocarcinoma looking for support and advice!

[Jackie46]

Hello. First time on here. I'm a 46 year old woman with 2 children 9 and 12 and never smoked and have been found to have adenocarcinoma lung 2b n0m0 on 29/4/16 (scan that showed it done 16/3/16 so serious delay at getting result). I'm seeing surgeon on 7/6 in Leeds. Interested in clinical trial but only really found one suitable one called ABLE trial. I had adenocarcinoma cervix 2007 and so may not be eligible. Waiting to hear back. If anyone knows of any trials or is in a similar position to me would love to hear from them. I feel like I'm on a dating website!!

We've called the cancer "frank" for the children and explained he's like a lodger who's living in my house but not paying rent and we're concerned that he's both uninvited and may move into other rooms so he has to go! It makes it less scary to use frank rather than cancer(apologies to any franks out there)

Not sure what treatment I'm heading for yet (other than surgery) but my god this is a slow process. I'm a gp so know about 2 week cancer referrals for 3% chance of it being cancer but when we definitely know it is I feel like I'm waiting forever.

I'll stop wibbling now

[Jules-55]

Hi Jackie sorry you've had to join this site but welcome ! It's very frustrating waiting for appointments scans and results ect, it seems to take an age waiting but it's the same roller coaster we all have to go on with this horrible disease. I was 53 when diagnosed April 2014 with stage 1 and had 2 lobes removed from right lung, I was very lucky as no follow up treatment was needed, I also had named my tumour 'clifford' as found it difficult saying cancer to everyone ! It will be useful to write a list of questions to take to your app with the surgeon, as it can be overwhelming and you won't remember everything they tell you. I can't advise you about trials but please feel free to ask any further questions and please keep us informed of how you get at your appointment.

Take care

Julie x

[Jackie46 in reply to Jules-55]

Thankyou for replying. Live that you called it Clifford! I've heard back from one trial consultant now and was really helpful so feeling a lot more optimistic.

Thanks

Jackie

[Rachelhols in reply to Jackie46]

Hi Jackie

Sorry to hear your news, welcome to this site. It's very informative on here and also a great comfort at times.

I think the waiting is the hardest and scariest part, both on diagnosis and follow up scans, it's very exhausting and traumatic.

My Husband has stage 4 adenocarcinoma plus two brain metastases. He is 51, never smoked and was as fit as a fiddle until November last year when he developed a cough. It took 4 visits to his GP and 10 weeks before they agreed to an X-Ray.

What I want to say is don't lose hope. My Daryl has had 6 sessions of full chemo- pemetrexed and cisplatin, 5 sessions of whole brain radiotherapy, and is now on pemetrexed maintenance. He has seen good shrinkage but we are aware it is only palliative, however he continues to work pretty much full time and stays positive and we try for this awful disease not to be all consuming. We live life everyday, as much as possible. As a wife I hate to see him less able to do what he did, and feel angry that this has happened to him, but we made a choice to not let it consume us. Not easy some days.

Lean on your friends, family, colleagues and hospital. It is overwhelming how much support people will give. Persevere and push for information regarding treatment. Have they checked for any mutations in your cancer - EGFR or ALK as this opens up an avenue of other drugs. Daryl is ALK positive so will go onto Crizotinib if maintenance stops working.

When you feel well enough do nice things. Eat well and exercise if you are able. Daryl Likes to walk in the fresh air as much as he can and is addicted to fruit smoothies for breakfast 😊.

I wish you the very very best of luck and don't be a stranger on here.

Rachel

[Janey_H]

Hi

Just wanted to say 'welcome' although you don't want to be here! I was diagnosed 3b in 2014 and had chemo, radiotherapy and surgery. My tumour was called Bernard (and we don't have kids...we just called it that!!)

Wishing you all the best for your treatment - do keep us updated. The group is really helpful for support and information so never be afraid to ask.

Janey

Xxx

[excavator]

Hello Jackie, I'm very sorry to hear of your diagnosis.

I was diagnosed adenocarcinoma in May 2014 and had right pneumonectomy in June 2014 followed by adjuvant chemotherapy (cisplatin and vinoralbine) that was completed October 2014. Staged after surgery as M2aN1M0. I had all treatment at St James' in Leeds who were without exception fantastic, I'm sue they will treat you just as well.

I've been discharged by the respiratory consultant in the last couple of weeks so hopefully that's it for now.

I guess surgery must be a real option for you if you're seeing the surgeon tomorrow. It wasn't easy but wasn't as bad as I thought it would be, especially as I had never been in hospital before. So, in my experience it's definitely do-able. I was 57 when diagnosed and continue to work trvelling extensively in the UK for my job.

I didn't get round to giving my cancer a name other than a few obscene words occasionally but fortunately didn't have the problem of having to tell children.

I hope you get on as well as I did.

D.

[Jackie46 in reply to excavator]

That's really reassuring as I will be under St James as well. I have gone on a clinical trial starting afatinib next week and surgery booked for 7/7. I felt real confidence in everyone I have seen in Leeds so far which eases the stress. Thanks for replying to me and glad you are doing well

[Bow-19]

Just to say make sure that they have checked you for mutations, as this may effect the treatment that you need. I was 48 when my symptoms started and a non smoker too. I am ALK positive so treatment tailored to this.

Wishing you all the best x

[Jackie46 in reply to Bow-19]

Thanks. Ive gone on a clinical trial taking afatinib presurgery to see if it shrinks the tumour (ABLE) trial. Starting the drug next week and surgery 7/7. As part of the trial they get the whole of the tumour and will test for all the different mutations. I feel better now things are moving and we have a plan. Makes such a difference and I have to be thankful that it's at operable stage. I've been v fortunate. Thanks for replying to my post. Really appreciated. Feel like I'm not alone x

[Hidden]

Hi you have my sympathy ,I am sure when the ball gets rolling things will start to move more quickly .If your having surgery your next wait will be waiting for a slot .You maybe a GP but it is still a scary time .I am a nurse and I was terrified also a non smoker ,so annoying I am now a year past surgery and nearly a year since my last lot of chemo ,last year was hard but I am now ok cancer free . Having your young family will help during any difficult days post chemo and you are young and probably fit so that will help .I swam pre and post op this helped me feel that I was as fit as I could be given my circumstances .Things will start to happen soon I am sure ,sending you a hug ,we all need one a cancer diagnosis is horrid .

[Jackie46 in reply to Hidden]

Being in the nhs means we understand how the system works but it definitely doesn't make dealing with the news any easier! I feel like I'm on a roller coaster at the moment with my mood. I go from enthusiastic optimism to anxious pessimism in the same day! I must be a nightmare to live with (my husband will definitely agree :). At least we now have a plan. I am starting on a clinical trial next week taking afatinib and surgery booked for 7/7. All made better by meeting some wonderful people at St James with research nurses and thoracic surgical nurses and lovely oncologist who is leading the trial. The surgeon instilled me with confidence as well and everyone talks to you and gives you time which is wonderful. Not looking forward to the surgery but I'm young and fit so need to remember that in a much better position than many others with lung cancer.

Thankyou for your post and a hug is sent to you too! Glad you are doing well and thankyou for taking the time to support me

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Jackie46,

I have attached the link for the Cancer UK website which may be of interest.Would you like me to send you an information booklet about lung cancer? Please feel free to contact the Helpline number Freephone 0333 323 7200(option 2).

Kind regards,

[Jackie46 in reply to RoyCastleHelpline]

I think I have most of the info now. I seem to have booklets galore from different specialists! Many thanks

[Bow-19]

Hi Jackie46,

Thanks for your reply. I have also been a NHS, I worked as an OT for NHS and social services. Just reading about your emotional roller coaster, I have been fortunate in my life until diagnosis to not need to take anything to support my mental health. However when I was diagnosed my GP gave me some diazepam just to take as and when. I probably only took about 15 in total, but did find that they helped a lot. I remember on one occasion taking it before meeting up with family and being really stressed. I am also on 10mg of citalopram which I have found has taken the edge off things too. When I was first diagnosed a GP said to me that she had taken diazepam for support. I have also spoken to a hospital doctor and several nurses who have told me how they have benefitted from citalopram plus many others.

Very best wishes X