Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Mesothelioma Diagnosis

hurtandconfused981
Posted by

Hello,

My dad was just diagnosed with Mesothelioma yesterday. It was actually a total shock to us. He started with a UTI but had been coughing for some time. We told him that he needed to see a doctor, but as men do, he didn't. He collapsed on the stairs and was rushed into A&E. They did CT, X-rays, ultrasounds and in their words other than the fluid that they had to drain they didn't "find anything suspicious or sinister" on follow up appointments. However, because my dad mentioned that he has been coughing for a while they wanted to do thoracoscopy to have a good look inside the pleural space and to do pleurodesis.

When they went inside they found a nodule (or maybe a few nodules?) in the bottom corner of his pleura. This is where the mesothelioma is contained at the moment. Right now they haven't given us any staging information or if it has spread from there but it sounded like perhaps it hasn't considering. The talc has taken quite well, he has a small effusion and he's still coughing but far less than he was.

I've asked them why this was missed on CT 6 weeks ago and they don't have an answer for me. It seems like "it just didn't show" but I'm not even sure if that's possible?

I'm obviously very nervous. What does this sound like to you? I'm trying to be positive but I'm worried for him and I'm hoping that it's still early stages so they can do something, even though I'm aware that it's an incurable disease.

Any help would be appreciated. I would like to make sure I go into the Oncology meeting armed with the right questions and other bits and bobs.

latchbrook
Posted by

Hi  and welcome to the online community

I can understand what a shock it must have been for you to hear about your dad's recent diagnosis. Although I didn't have this type of cancer I noticed that your post had gone unanswered.

You might find this information from Macmillan useful on helping you to know what questions to ask when you go to meet the oncologist. There is also some information here about pleural mesothelioma which you might not have found yet.

Another option is to give the Macmillan Support Line a call on 0808 808 0000 and speak to one of the specialist cancer nurses. It's free to call and available daily between 8am and 8pm.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

hurtandconfused981
Posted by

Thank you very much latchbrook.

I'm feeling a lot more calm than I have been. I went to see my own GP yesterday as I suffer with depression and anxiety. We had a long chat and it really helped to settle my mind. This is the worst part as we are in that limbo where we haven't seen the oncologist yet so we have no info, no direction and no pathways. We just want to get a move on because as incurable as it may be we want him to at least get a few years (or more!) without any great pain or suffering.

My fingers are crossed that they can do some surgery for him initially...

latchbrook
Posted by

I don't think it matters what type of cancer you have nearly everyone would agree that waiting for tests or a scan or a diagnosis is the worst part. I think it's the fear of the unknown. Once you know what the plan is you'll hopefully feel more in control.

There are many people on this online community who have far outlived their original prognosis. Doctors can only give their best guess based on previous people and, of course, we're all different and we all respond differently to treatments. Also, cancer treatments are coming on in leaps and bounds, so where there may have be no treatment for a particular cancer a few years ago there is now.

Wishing you and your dad all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

hurtandconfused981
Posted by

Thank you so much for your words and support.

I wrote on CRUK that I've felt quite isolated recently but it seems that after a chat with my GP and a few days to let the initial diagnosis settle I'm starting to find and build the support network that I need.

A lot of the survival statistics for this disease paint a very grim story. I also noticed that they are based on studies that were done almost twenty years ago now.

It's very scary and unreal how "well" my Dad seems now. We've been informed that the cancer is usually picked up very late when people are already not eating, losing weight, vomiting blood and so forth. You wouldn't know he's sick. In some ways we feel lucky, in other ways, obviously not!

I'm just hoping and praying that they will be able to give him a relatively good prognosis for a few years.

latchbrook
Posted by

I'm glad to hear that you feel that you've started to build the support network that you need as it's very important. Everyone naturally thinks that the person who has cancer needs support, which of course they do, but they can forget that those who are doing the caring or supporting also need support.

Another group on here that would probably be good for you to join is the family and friends group. It has largely the same objectives as the supporting someone with incurable cancer group but is much busier.

I'm glad to hear that your dad feels well, and long may that continue!

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

hurtandconfused981
Posted by

Thank you I've joined this group and if I have any emotional concerns I will make sure to post in it.

Also to anyone else reading this thread I would like to hear your stories and experiences with Mesothelioma.

pottermouse
Posted by

Hi hurtandconfused981

My husband was diagnosed with plural mesothelioma Feb 2018 and the prognosis was very poor and only palliative care, we have had to search to find other treatments for this condition and found a surgeon who would do the operation which he had last May we have had to travel some two hundred miles to get this but felt it was his only chance he was very early stage and he came through the op OK but just before Christmas we found that the cancer was starting to grow again, so he started chemotherapy in February but only after two sessions it was found that it was not working and the cancer is growing again our local health authority can still only offer palliative care so once again we are travelling to get o on a trial for immunotherapy so fingers crossed we will find a way to beat this horrible disease, don't give up trying to find a way forward for your dad and hopefully you will be able to get better treatments at your local hospital than we did take care and keep positive

Barb x 

Barb x
hurtandconfused981
Posted by

Hi Barb,

Thank you for sharing your story.

It's insane to me that Dad seems absolutely fine but actually isn't fine. He has no pain, nothing and he barely coughs at all. We are all very surprised and shocked.

I found out today that he has been referred to Lung MDT and that they are discussing his case next Thursday. They will call us after then. We hoped it was today but alas it was not to be - it doesn't move that quickly! He is frustrated about this because he just wants a plan whether it be palliative or not. I told him they won't give up on him that easily and would at least give him a fighting chance (one hopes). On Friday he has to go in for a full lung function and work up.

We are in the Liverpool area.

May I ask where you had the surgery done? I've seen some people mention a Professor in Leicester.

I'm really sorry to hear that the Chemo isn't working. It seems that it's a very personal, individual thing in every cancer whether it does or not. Don't give up.

pottermouse
Posted by

Hi again yes it hard to understand how they can be so ill yet seem fine, hubby was mountain biking and wind surfing with nothing more than a little breathless when pushing himself,so that's why we needed to try and get more help, we found a thoracic surgeon in Leicester who is a great guy and is really helpful to us both and very supportive and we are in Cumbria. Just don't let people stop you getting the best treatment you can. Good luck 

Barb x 

Barb x
hurtandconfused981
Posted by

Hi Barb,

Had a really productive conversation with the specialist Meso nurse in Aintree hospitals. What angels!

He may go in next Thursday for his first Oncology meeting and she has already suggested that they may decide to look at the MARS II trial for him specifically after their next specialist meeting. Either way he is going to have chemotherapy first but they told us he may have an operation in Sheffield if a) he is a good candidate and b) he fits into "that group" which isn't the "just chemo" group.

She was telling me it's not so much doom and gloom as the statistics make it sound. That there's still people on her case book that have been alive for 8 or 9 years but key is to really catch it as early as they possibly can.

It's nice to have some hope. Fingers crossed my Dad is one of those people that outlive the dreadful statistics for this disease. I hope that your hubby is feeling well today.

Sarah x.