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

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.

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

Hi there, that sounds good news. Is the hospital near to where you live? My husband was in London and they had accommodation which was free for the first night and then payable nightly. I stayed in the accommodation so was at his bedside from 8.30am till 9 pm. I would have been spending 4 hours a day traveling if I hadn't done this. Once he came home he gradually got stronger and the walking helped build him up.  However it was in the summer. I wish you all the best and glad that you don't have to wait too long before the operation. Stay positive, and take care.

Thanks homebird. Its about 1 hour away so was planning on maybe staying there with my mum a couple of nights. Just need to juggle the kids and school runs. If mum gets offered somewhere to stay that would be fab but no idea if that will be the case.

Did he have a lot of pain post op? Do you think recovery took the 6-8 weeks?