Daddy just diagnosed

[MissyLC]

After several test and a bronchial surgery with needle biopsy of several lymph nodes that lit up on his chest CT and PET scan, his thoracic surgeon has confirmed this is lung cancer ( lower right lobe, initially 3.5 cm, 6 weeks ago) and now after 6 weeks of testing, it has spread to several nodes in the chest as well as the stomach. He also has several nodules in his left lung that are small and haven't been mentioned as cancerous as of yet. We have an appointment with her team this coming Wednesday to discuss type, prognosis, treatment options, and staging. I am so scared!

To add to the stress, his wife is in heart failure, drugs have been a huge part of their lives ( and I'm sure they are still using) , they are living in a hotel because I would only allow him to live in my home, and I am the only child out of 5 that can, is able, and willing to care for him. He has worked with the same company for 40 years, but unfortunately, has no insurance at all. He is 57 and is otherwise in good health. Of course he doesn't have a regular PCP to do well checks. ( this was initially found due to some dizziness that landed him in the ER)

He is also considering "other options" instead of chemo and radiation, which the dr has already said would be recommended starting Wednesday. He watched his mother suffer when he was a child and I know that traumatized him. I don't have much support with this because of the life my daddy has led, but the way I see it is he is STILL my daddy and I'll be here to fight along side him, and fight for him when he is unable.

Any and all advice is welcome and appreciated! I definitely need to get all the support I can! I really don't know where to start to be honest..

Thank you all so much! Keep fighting the good fight!

Missy

[JanetteR57]

Firstly so sorry to read about your daddy. secondly welcome to the group. This all sounds so hard for you so well done for stepping up to care for him, recognising he is still family whatever his past. I can understand his fear having watched his mum suffer when he was a child but treatments have developed considerably in recent years especially for lung cancer as this group will prove when people start to respond. Some people have been coping for years with treatments. There are some good information materials on the Roy Castle website explaining the different treatments and different types of lung cancer that you may want to read before his appointment as that will give you some background. There is space in them to write down questions and suggests questions to ask the clinicians treating your dad.

What treatment he is offered and takes will be up to him ultimately but can't imagine the drugs if he's still using will help and they may well undermine whatever is suggested/offered by the clinicians. You say, he is otherwise in good health, so that's good. Try and focus on the positives if you can although understand you are very worried about him.

Regarding the small nodules, try not to worry about them for now - many people have them (who don't have lung cancer) and the team will be focusing on the whole picture, with emphasis on the 3.5cm tumour and spread to the stomach and treatment suggested will be to tackle the whole system I imagine. Once they have decided any options then I'm sure your dad will need you to be there for him. You will need to find support for yourself so this group can help. Also ask your dad's clinician if he is allocated a cancer nurse so you can contact somebody with the questions that are likely to arise. good luck and drop in on the forum whenever you need or want. take care.

[MissyLC]

Thank you very much for your kind words. We go in the morning to find out what type, stage, and recommendations for treatment. I should have already been in bed, but you know how that goes.. anyway... I will post an update sometime tomorrow if I can! Thanks again,

Missy

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi MisyLC,

I am sorry to hear about your daddy's diagnosis. As JanetteR57 said we have some booklets on the Roy Castle website which may be informative.If after your daddy has had his hospital appointment and you would like to speak to someone please don't hesitate to call the Nurse led Helpline Freephone 0800 358 7200.He will have been advised what the best treatment will be and will have a lung cancer nurse specialist who he can phone in between scheduled hospital visits for support.

Kind regards,

All the team at the RoyCastle Helpline

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi MissyLC,

I am sorry to hear about your daddy's diagnosis.This must be very stressful for you and all the family.As JanetteR57 said we have some information booklets which may be informative available:

roycastle.org/how-we-help/l...

After the hospital appointment today if you would like to talk to someone please don't hesitate to call our nurse led Helpline Freephone 0333 323 7200.

Kind regards,

All the team at Roy castle Helpline.

[MissyLC in reply to RoyCastleHelpline]

I will most definitely be checking out the link/ booklets today. I have done so much research and I do believe my brain is pretty numb and can't process much more right now. I have found websites with numbers I can call for resources, such as help for counseling/ therapy for caregivers and also financial support. I have a sinking feeling he won't do the treatment, or will start it, and then stop when the side effects start ( I know my dad well) . I was going over to talk with him last night, but didn't make it because of my own family duties.. I told him we would talk after his appointment today. My aunt, his sister, is going and is helping me through this. Sometimes she can be a little more forceful than me. Anyway. Off to get dressed and head to this dreaded appointment. Thank you all!

[MissyLC]

Well , we are at stage 3b squamous cell carcinoma with major possibility of it going to stage 4 next week after they needle biopsy the tumor in his stomach. The dr's are saying chemo will be palliative, so he did decide to go ahead and get the port placed next Tuesday for the chemo. We are looking at max 18 months with chemo and immunotherapy,( if his markers are over 50) with stage 3b, 6-8 moths with chemo and immunotherapy at stage 4. The dr was blunt and said chemo does not cite this type of cancer alone, but it may slow it or prolong his life by a few months. Is the side effects to chemo worth living with?? Oh I'm so scared

[MissyLC]

The port has been placed and the biopsy has been done.. Now, we wait! Next appointment with the oncology team is Wednesday. He's in a lot of pain from 2 surgeries 2 days in a row.

I am so exhausted mentally and physically, and this is only the beginning. I just don't know what else to do. My aunt is trying to help me help him, and has also told me to start preparing for his death. This cuts deep