Waiting Times For Surgery

[SAH1]

Hi,

I'd like to start by saying how pleased I am to have found this site, it's given me great hope and encouragement reading the posts on here.

I coughed up blood on 28th November, had an x-ray that day, rapidly followed by a CT scan and on 8th December the Chest Physician told me it was likely to be lung cancer. I had a PET scan on 15th December,(which showed no metastases) followed by a tracheoscopy and biopsy on 22nd December. I saw the physician again on 5th January, he said they hadn't been able to reach the mass but there was no cancer in the lymph nodes they'd biopsied. He'd spoken to the cardiothoracic surgeon about me that morning with a view to removing my right upper lobe, and he used the magic word 'cure'. I'm not sure about this, but it was very positive news. He said I might have to have chemo afterwards, depending on the size of the tumour (4 cm on the CT scan). He said the surgery would happen very quickly, probably within 2 weeks. Again, I took this with a pinch of salt but I thought I'd have heard something by the beginnning of this week.

I spoke to the surgeon's secretary last week, she hadn't received the referral (I'd received a copy of the letter by this time). Spoke to her again yesterday, still nothing so I called the physician's secretary, who faxed a copy of the referral to her. The surgeon's secretary called today and offered me an out-patient appointment on 30th January, getting on for four weeks since I'd been referred. That was the closest I'd come to collapsing in a floods of tears. I've had lung function tests and a (negative) brain scan in the meantime.

I suppose I'd got used to things moving along fairly quickly, but everything seems to have screeched to a halt. I've known I have cancer since 8th December and was reconciled to a worse case scenario then. I thought I'd have started some sort of treatment before the New Year. It's very difficult to be told I've got something potentially curable but I've got to hang around for over 3 weeks just for an out-patient appointment. I realise that I'm a lot luckier than most though.

I'd be interested to hear of others' waiting times for surgery, and how they are now.

Thanks for letting me vent.

[jillygirl]

Hello sah, Reading your post , It was very similar to what I was like when I found out about my lung cancer. To cut a long story short , I would chase this up again. You should have a lung cancer nurse assigned to you, if so get on at him/her. The Lung cancer nurse specialists are worth their weight in gold. Any problem or worry they will try and sort it out.

By the way I had a pneumonectomy 4 and half years ago. No problem. So stay positive.

They do have government guidelines to make sure cancer patients are treated within a certain timescale. Please keep us posted. Hope all goes well for you. xx

[hedgehoggy]

Hi SAH1

My story was similar to you when I had lung cancer in 2012. I coughed up blood Christmas day night 2011and got shocked to bits but thought it was a nose bleed or something as it kind of woke me up. If i hadnt have gone to the bathroom and for whatever reason coughed into a tissue and thought i havent got a cold why was i coughing something up. Of course that was when i saw the blood. Anyway it didn't occur again but I started a funny cough. Eventually went to the GP, sent me for a chest x-ray and first showed the shadow on my left lung. That happened in January 2012. Then I had a very bad cold probably to do with the bad news so cancelled my hosp. appt. And then found out if i cancelled the second appt. I go back to the bottom. After keeping the second appt. I had a Pet scan etc. Everything then went into top speed.

All in all my operation was on March 8th i think. So that was the time since I first coughed up the blood on Christmas day 2011. I look back and think it was quite a time before treatment but also due to my delay not wanting to infect everyone else. Chemo followed my op with a gap of 4 weeks as i wasnt healed or ready for it.

Now I'm swimming 12 lengths In the pool and after a brain tumour doing really well.

Keep In touch and keep strong and positive.

Best wishes

Hoggy

[MissyD1]

I don't really have any advice but I can completely relate to your frustration! My mum had a chest X-ray on the 11th November after having an infection. She was called into her GP the next working day and told she has a mass in her upper right lobe. She was fast tracked for a ct scan and told 2 weeks later that it was likely to be cancer but she would need a pet scan and biopsy. That was November 28. She had the pet scan on 15/12 and didn't hear anything else until she phoned her consultant on 15/01/17 and he told her that the pet scan had shown a second very small area in her left lung which they weren't expecting. He also said she would have surgery but will need a biopsy first and that things would happen much quicker now.., fast forward 2 weeks later and still no biopsy appointment so she phoned his secretary again and was given an appointment for 31/01/17! That will be 4 weeks since speaking to her consultant and 6 weeks since her pet scan! We can't understand the complete lack of urgency either and of course my mum is now thinking all sorts... it has been such a stressful time for us all, as I am sure it has been for you! I hope that things speed up for you and wish you a fast recovery xx

[SAH1]

Thanks to all of you for your replies.

Jillygirl, thank you for the heads up about the lung cancer nurses. I've managed to track down a number for one at the local hospital (via this site) and have left a message. I've also spoken to the patient liaison team at the hospital; they're going to refer it down to the cardiothoracic department. I don't hold out much hope for anything helpful there.

I'm so glad you and Hoggy are doing well some years after your surgery - both for your sakes and because it holds out hope for me.

From what I can gather, the target is 31 days between treatment being decided and actually being given, if I take the 'decided' date as 5 January then my OP appointment on 30 January takes it to 25 of those days. Of course, they may take the 'decided' date from the day I first see the surgeon - figures are made to be massaged!

Missdwatts, that sounds awful. Do keep on at the hospital, don't leave it more than a few days after the biopsy to chase it up. I sincerely hope that your Mum's experience is the reverse of mine - I had a quick diagnosis and now a long wait for treatment, hopefully they will move quickly for your Mum once a diagnosis is given.

Thanks once again, I will keep you updated.

[jillygirl]

Yes I seem to remember my surgery was exactly on the last date. Like you say they can twiddle things around if they need.

Just a shame the N.H.S . is under so much pressure these days.

Keep us all posted. xx

[stutheit]

I was diagnosed May 5th and I had my surgery June 16th I wish you the very best good luck

[SAH1]

Thanks stu.

I spoke to the lung cancer nurse, haven't heard back from her. The patient liaison person referred it down to the cardiothoracic centre. Someone from there called and made soothing noises, but the subtext was basically 'tough, you're going to have to wait, we're very busy'. She said they hadn't received the referral until 18th January, after the surgeon's secretary had chased it up. I felt obliged to point out that I'd chased it up myself! They've probably got 'gigantic pain in the backside' written in some sort of code on my notes!

[Hopeforthebest in reply to SAH1]

Well. I Think this is awful actually - you don't need the stress of chasing xI know what you mean about chasing though - you can get unlucky and hit a few roadblocks for silly reasons like a secretarial vacancy in the "appointment chain".this happened to me on another matter. There is another very effective solution here. Just contact PALS either for your area or very often there's an office at the actual hospital. Nobody on your "team" will be offended by this route at all and PALS will cut through this red-tape /uncertainty immediately. I've found them hugely effective on another serious hospital matter when chasing slow responses to appointment times etc x good luck

[SAH1 in reply to Hopeforthebest]

Hi, thanks for the reply. I've spoken to PALS (I think I named them as patient liaison in an earlier post) and they weren't helpful, just referred it down to the cardiothoracic centre.

I know I'm not going to get an earlier appointment now, I've calmed down a bit as it's less than a week away now. Hopefully they will give me an early date for an operation. If not I'll consider going privately, better a slightly poorer old age than no old age at all!

[SAH1]

Well, it all happened very quickly after my OPD appt on 30th Jan - had the operation on 7th Feb and came home 11th Feb. All went well, I've a follow-up appointment with the surgeon in a couple of weeks, then I'll be seen by the physician to discuss chemo - I suspect this will be necessary as the tumour was quite large. Taking it one day at a time at the moment, I'll worry about chemo at the appropriate time.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello SAH1, I am pleased to hear that your surgery is over and you are making a good recovery. If you have any concerns or wish to speak with someone we have a nurse led helpine freephone 0800358 7200. We also provide a patient information booklet on chemotherapy which is available on line or can be ordered.

Kind regards

Roy Castle Helpline

[Sarah-Helen]

Hi, I have just read your posts and it all sounds very frustrating, but glad you had the surgery. Do you know about your adjuvant chemo yet, I had a ULL in January 2015 followed by 4 cycles of vinorelbine and cisplatin. It was quite unpleasant at the time, but totally worth it. I was stage IV with a met to the brain. All good so far. Wishing you all the best xx

[SAH1 in reply to Sarah-Helen]

Hi, I thought I'd delay my reply as I had an Oncology appointment yesterday. I've been offered Gemcitabine/Carboplatin chemo. They gave me all the information and a a fact sheet to take home, further appointment in 2 weeks to let them know my decision but I've already decided I will have the chemo. I understand that it doesn't make a huge difference (the oncologist quoted about 7% better 5 year survival in people who have it), not a huge difference unless you're in that 7%!

I'm glad you are keeping well. All the best.