Hi LD

They are just gathering all the info they need to decide on best course of action. My partner had all of the tests you mention including bronchoscopy with biopsy. Personally, I would't read anything into it. Obviously the oncologist will explain it all but I believe its fairly standard practice.

I still have bad days when the fear, stress and panic take over so I do relate to your feelings, but trust me, it does get better when he gets started on treatment. Your Dad needs you to be calm and strong if you can possibly manage it.

Try not to worry.

xxx

Thanks so much. He’s had the letter today and it’s needle biopsy to take lung tissue. It does say it’s to help determine treatment. It’s still with the respiratory team and not oncology yet. I guess that would happen after official diagnosis would it?

the letter said 7-10 days for biopsy so it’s going to be even more waiting. At least weds the consultant will tell him what the pet scan found.

thanks for your suppprt x

Fantastic news! You have brightened my day-you're right, it sounds like  a very good outcome. They have obviously found it early.

We are ok-just plodding on through treatment and trying to stay positive.

Much love x

Ahh bless you :) he’s also just told me that the radiographer said he’s been doing this 20 years and is baffled. It’s not changed in weeks and where it’s located makes him not sure. He also had a bad chest in Spain and he said it would of shown on the X-ray then (in June) 

i guess the biopsy will give answers but how amazing if it was benign (although I hear lung masses usually aren’t)

how long is treatment due to go on for? Do they scan during to see how it’s going 

much love xx

It sounds as if your Dad is a lucky man-not just because of his promising results but because he has such a lovely, caring daughter. I am so pleased for you.

If Dave can have his chemo tomorrow [ie if his immune system is sufficiently recovered ] he will be almost half way through chemo. He's due to finish at the end of January if all goes smoothly but will then start radiotherapy. Its not that the chemo is particularly unpleasant-its mainly just a bit of discomfort-its just that th fear and anxiety never quite go away.

His scan is the 17th December  followed by oncologist's review on 20th, when they tell us if it's done any good. 

Keep everything crossed for us xxx

Sorry to chip in on this chat but I just want to say my husbands diagnosis was not good,  stage 4 lung, but after chemo and radiotherapy it's shrunk more than half,  so look to the future and take it one day at a time.   Good luck to you both.  Caz 

Caz-thank you so much for posting. I would have got back to you before but we were all day at the Freeman yesterday waiting for bloods to be re-done so he could have the chemo, and then waiting for it to be made up. You dont have to spend much time in a chemo day ward to realise that there are so many people in much worse states than we are at the moment, but its still hard to stay cheerful. 

I may have already said to LD when they were waiting to have the diagnosis confirmed-but waiting is the bane of our lives!

Anyway, I was thrilled to read that your husband is doing so well-long may it continue. I notice you have done quite a lot of posts so I am going to spend sometime this afternoon going back through them to hear more about your story.

Love and best wishes xxx

Ahh thank you Monica what a lovely thing to say. I think I drive them mad with my incessant worrying. They told the consultant I had already googled him and his wife ha ha! 

How is Dave? Did he manage to have chemo? 

Thats amazing caz. It’s lovely to hear such positive stories. Praying I will have one of my own soon xx

LD-you are very similar to me. I am a terrible worrier, whilst Dave is more laid back. My view is that knowledge is power, so I try to find out as much as I can and I dont think its a bad thing.

In fact, I think its great that you are so on the ball that you've googled the consultant's wife! You go, girl!

Dave did get his chemo, although we were there from 10.30 am and he didnt get it until 4pm so was not in the best humour. Still, no more treatment until after Xmas now; just the scary prospect of a scan to see if its working. [Gulp!]

Ah well. Let me know when your Dad gets a date for his biopsy results and/ or a date for his op.

Love xxx

Hi Monica,

I was just wondering how things are with you and Dave? How is his treatment? Did you manage to have a nice Xmas?

We are still awaiting lung biopsy results but Dad is so well in himself. Still praying for good news.

Hope your well x

Hi LD

Happy New Year!

Dave is doing fine thanks. He has one more cycle of chemo to start a week on Friday but the really good news is that the scan showed that the tumour has shrunk from 61mm to 6mm! We are both feeling a lot more positive, as you can imagine.

He is having Zarzia injections to improve his immune system which means I have to stab in the stomach every morning [!] but apparently it doesnt hurt and although he's a little more tired the chemo side effects have been generally manageable. After this, its radiotherapy but we take one day at a time.

Hope your Dad gets really good news and that you both have a fantastic 2019

Much love xx

Ahh wow thats amazing news! Am so pleased for you both, and what an amazing result, How long will he have to have radiotherapy for?

They have chased the secretary today so here's hoping we will find out soon xx

Ahh wow thats amazing news! Am so pleased for you both, and what an amazing result, How long will he have to have radiotherapy for?

They have chased the secretary today so here's hoping we will find out soon xx

We won't know exactly until we see the oncologist on 28th. 

Do let me know how your Dad gets on. I'm keeping everything crossed for you xx

Good luck on the 28th. Do keep me up to date. I'll be keeping everything crossed for positive news.

My dad spoke to the secretary today and he has another consultant appointment next Wednesday. Seems a very long time to wait since his biopsy! xx

Hi Monica,

How are you and how is Dave getting on?

My dad just had his follow up and its definitely cancer :( It still seems very vague as he has another CT scan next week which is to show if it has grown, he will then meet with the surgeon who will discuss the surgery and next steps. It seems to of changed again as they said the biopsy would tell if it was in his nodes and if not he would just have surgery and today they have said they wont know until after the surgery and its removed (although they are telling me that nothing has changed) I think they dont remember everything from the appointments. He now has been passed from that team and will have the scan and see the surgeon. I cant believe he wasnt given a stage as I thought the PET and biopsy did that but he was told it hasnt spread. 

xx

Sorry for delay in replying-I usually get a notification but didnt this time.

I know the confirmed cancer diagnosis is upsetting as you've maybe been clinging to the hope that it was something else, but at least they know more now and the oncology team will be able to focus and start putting the plan into operation. Dave and I felt much better after speaking to oncology. Hopefully, they'll be able to give you a 24 hour helpline at the hospital and access to practical and emotional support for yourself and I would recommend that you take advantage of that. And remeneber there's a lot of love and understanding  for you here on this forum.

If there's still even the possibility it hasnt spread that's very good news and I think [but I'm not a doctor!] that having surgery also means they think that its limited to the local area. Is he feeling ok physically?

We are towards the end of chemo but had a problem yesterday at chemo as his blood test showed low red blood cells and he has to have a blood transfusion on sunday morning. He is a bit low about this-just because its someting new, I think. He gets into a panic and I have to act calm, but as you know, inside I'm a worrier like you!

But we both have to stay strong and get them through it. 

I'll be thinking of you. x

Thanks Monica - I think you do cling on to some glimmer of hope. I assumed the pet and biopsy would show spread and stage it. When was faves staged?

they haven’t even mentioned seeing oncology - he has his ct scan and then meets the surgeon (or will she be part of the oncology team? 

He said he feels as fit as flea - he doe get bad chests due to his ct but he’s feeling otherwise great. 

Im still praying it’s operable and easy to remove and that he needs no further treatment (although surgery is tough too) 

Oh I’m sorry to hear that - what causes the low cells? Hopefully once hes had the transfusion he will be better.m and everything will be better for him. It’s hard not to worry but it sounds like he’s done the hard bit. Will he have to stay in?

hope everything goes well xx

Morning. Today is Blue Monday which is supposed to be the most depressing day of the year but Dave is less breathless since the transfusion so I'm hoping things can only get better! He was in from 9 till 2 so not too bad! I think that low blood counts of either red or white are mainly caused by chemo in his case so you may not need to worry about it.

We got the staging news after the PET scan but we did have to ask for it. As well as that, on our first trip to hospital they asked if we would like them to send us copies of any letters that goes to the GP and it has further info on the top. eg T4N3M0 Stage 3C. This means [I believe] tumour, nodes and I think the M m refers to whether it has spread any further. And all of this equates to stage 3c, which they summarised as advanced but localised. When Dad got the diagnosis, was there not a specialist cancer nurse in with him? Ours gave us her number and told us to ring if there were any questions as you don't necessarily take everything in at first.

I would guess that the surgeon would be part of the oncology team, but don't really know. We went to respiratory after a [clear] chest xray to have a CT scan and it was after that that we had te PET scan and biopsy, and then we saw the oncologist, and that was the point at which we asked for the staging.

I think you have to have faith that they will consider all the info and make the choice which they believe will give your Dad the best chance of success. You are very fortunate that it does seem as if the stage will be an early one, and they must think there's a good chance of being able to operate, but if he does have to have chemo, it may not be too bad. Dave's experience with Gem Carbo was generally fine.

Its fantastic that Dad is feeling well-he will have reserves  which will be helpful in whatever route he goes for treatment.

Hope this helps, I'll be thinking about you. x

Hi there, sorry to join in on this post but my husband (having been through the operation ) this might help. He had the ct scan and then the pet scan and had half of the right lobe removed with keyhole robotic surgery. Whilst doing the surgery they took away 10 lymph nodes for biopsy.  Unfortunately cancer was found in one of those nodes. He was then referred to the oncology team for chemo (after he'd got over the operation) this consisted of 4 lots of chemo 3 weeks apart.  He didn't have to have the chemo as it was 'as a precaution ' but he wanted to give it a try. Unfortunately he was very ill after 2 sessions and they decided to stop it.  He is doing very well and we are just enjoying life.

i wish you well on your journeys, and if you have any questions I will be happy to help.

Thanks both for your lovely replies.

Monica - I am so pleased Dave is feeling well - it seems like things are on the up. When will they test his cells again? 

Ahh ok - we have never had any staging and only had cancer confirmed last week by the respiratory team. At no point as there been any cancer nurse or anyone from oncology contact him or be at any appointments. He has seen 2 x respiratory appointments and the next one will be with the surgeron (which could be a couple of weeks as I believe she is based at a hospital in Oxford)

Homebird thanks so much for the info. Can I ask how your husband found the surgery and recovery? Dad is 81 so I do worry how it would be for him. Did the PET show any sign of spread or can they only tell about the nodes in surgery? Was his tumour very large (sorry for all the questions). Dad is having another CT scan to show if any change since the last one but I thought they said the biopsy and PET would show spread (which hasnt so far) but now I think that they are saying surgery will confirm. Sorry your husband was so ill with the chemo, I hope he is well now. 

Thanks both for the support x

Hi there. In answer to your questions.

my husband is 72 and his cancer was caught early. He had an MRI scan for his heart and they found a small shadow on his lung. The PET scan showed no sign of cancer anywhere else.

The surgery was okay and he should have been home in 4 days but ended up 6 days. Once he got home he did short walks to begin and then gradually increased. He was uncomfortable after the operation but once all the tubes and drains were removed he was okay. The operation was on 8th June and the follow up appointment with the surgeon was 3rd July. It was then we were told it was in 1 lymph node out of the 10 taken during surgery. We were then given an appointment with the Oncology team and the appointment was 19th July.  If cancer had not been found in the lymph node then I don't think that we would have seen Oncology at all.

My husbands cancer was in the lower right lobe but to get a good margin they took  one and a half lobes.

Different hospitals work differently but I would think that you have quite a while before you see anyone from Oncology.

Stay strong and always think positive. Anything I can help with please ask, and make sure you look after yourself as well.

Thanks so much for the message.

Dad has seen the surgeon today and due to having COPD there is a little more risk to his breathing etc. It doesnt look to of spread and is still small but there is some funny sausage shape of inflammation which has puzzled everyone. He could have chemo but that may not even work or be appropriate so surgery really is the best chance for him. She would attempt keyhole and said he would be in for 5/6 days but looking at a 6-8 week recovery period (and no further treatment needed after)

As scary as surgery is I do really think its the best option for him - I know I will be so worried though. I guess as things stand the fact it hasnt spread, can be cut out and wont need further treatment is about as positive as things can get.

Looks like it could be scheduled for around the 12th Feb.

As a side note can you believe me dad (81) alongside my mum (71) look after my 2 kids (5 and 2) full time for us so we can work. Absolutely amazing and I am sure something that helps to keep them going.

xx