VATS procedure for diagnosis

Hi Vicki 

I had the VATs procedure at the Liverpool heart and chest hospital about five weeks ago and a talc procedure to stop my lung filling up with fluid. I am happy to report that it was fine for me. My procedure was carried out under general anaesthetic I  was in discomfort for a while maybe a week  My operation was on a Friday and I was discharged on the Sunday. Sadly the analysis did confirm pleural mesothelioma and I am about to start on immunotherapy. 

I hope your procedure goes well 

Best wishes 

Mike 

Hi Mike,

I really appreciate you taking the time tp reply....i feel more reassured.

I am however sad for you that you have a positive diagnosis.

Can i ask how old you are?

I am 50.

X 

Hi Vicki 

Thank you for your kind words. The diagnosis was not really a surprise to me as they had already conducted fluid analysis from my pleural effusion which pointed to mesothelioma. I am 61 years old and love running and keeping fit. My exposure to asbestos was very limited and so initially it was a shock. 

Your age seems very young to possibly have this disease. Do you mind me asking why they suspect mesothelioma. I think only a VATs procedure/biopsy can confirm their finding. 

Good luck and I sincerely hope things work out well for you. 

Regards 

Mike

Hi Mike,

I was diagnosed with BAP1 Tumour Predisposition Syndrome a couple of years ago.  I had had kidney cancer in 2016 ( just after my Mum developed Peritoneal Mesothelioma . A professor felt there maybe a link between us.

Sure enough we both tested positive for BAP1 TPDS , .

Sadly I lost my Mum last year to peritoneal mesothelioma and me going through this so soon after watching her decline is overwhelming to say the least.

I can see more sites mention it now and there is even a mention on this one ( the more prevalent it is becoming).

I would encourage you to have a read as Mesothelioma is one of the cancers that is much higher risk. Particularly as you cant place where an asbestos link would come from.

I would also recommend Mesothelioma Uk ( Mavis Nye) as a support group for you.

Take care

Vicki

Hi Vicki 

Firstly may I say how difficult it must be for you and I am so,sorry for the loss of your mum. You have already been so much and I can't imagine what it has been like for you. 

I have never heard of BAP1 TPDS and I will certainly look into this and to the recommended web site. Thank you so much for sharing that information and I hope your treatment goes really well.

Thanks

Mike

Hi Mike,

Just wondering how you are and if you have started your immunotherapy yet? If so could you give me the name of it please?  I have been told I wont have any treatment until my symptoms get worse..... I find this a bit odd to be honest....how much fluid / tumours did / do you have?

Thanks

Vicki

Hello Vicki

The immunotherapy medicine I am on are nivolumab and ipilumumab. I  started treatment on the 7th November. My treatment is given every three weeks for up to two years depending whether it is effective or not. So far I have had no side effects but early days yet. On my notes it said "large pleural effusion" but I had not noticed anything really. The tumours are very small at the moment referred to as nodules.But will grow and clump together to form larger tumours if not controlled. I think my treatment is fairly standard in England. My oncologist said we will see whether the treatment is working if we dont see tumours in scans in a couple of months. I feel at this point I have very few symptoms other than the pleural effusion which I hope the VATs procedure sorted. The Oncologist did not have any hesitation about starting treatment. i think the cancer is at stage 1 or perhaps 2 I was not offered any kind of surgery but I think that is standard in the UK.   Most of the literature I have read suggests the earlier treatment is given the better the outcomes but I am definitely no expert so perhaps have a chat with your doctor. I am so grateful to have the NHS, this treatment in the USA costs a fortune and I doubt I could afford it even with medical insurance. 

Best wishes 

Mike 

Hello Mike and Vicki. My husband had the VATS procedure at Guys hospital on 3rd November. It has helped in that he no longer has fluid building up, but he has had nasty stomach ache and nausea since, affecting his ability to eat properly. On investigation at local hospital, no explanation could be found; however blood tests showed that his liver function had been adversely affected. Has this happened to you at all?

Also, bearing in mind the prognosis, we are keen to do more travelling whilst we can. Have you been given any advice about this?

Goid luck with your treatment 

Many thanks

Julia

Hi Julia After I left hospital I did have quite severe stomach cramps and ended up in A&E but was given some pain killers and the pain disappeared the next day. I dont think my liver function has been affected and I am able to eat quite normally. I have had some discomfort in my right lung since the operation but have put this down to the surgery but not really painful  enough so I would need pain killers.

As for holidays we have gone on short breaks to Edinburgh and the Lake  District which were great.I am due to have immunotherapy next week and intend to ask the consultant about foreign travel and particular cruises and we love them. However the cost of insurance cover is extremely high. I was quoted £1,400 for an annual travel insurance European cover that included cruises but strangely £1,350 for just two weeks cover. Also our normal travel insurance company rejected me out of hand as I could not answer whether it is a terminal illness or not. In fact the young gentleman was very abrupt and verging on downright rude,  just so you know if you contact some of the companies so expect difficult questions.

The problem I have is that the disease has such a poor prognosis so I pray that immunotherapy might have some impact. I hope very much your husband feels better soon and you are able to travel soon. 

Best wishes 

Mike

Hi Mike, thanks for your very helpful reply. It sounds like we’re a little behind you on our journey. Steve also had the talc treatment and still has a chest drain, although when the district nurse has been to empty it there has been very little fluid, which we hope is a good sign. We’re encouraged to hear you’ve been able to do a bit of travelling- we’re away for a few days atm, just for a change of scene. Steve finds it uncomfortable being in the car for too long, and needs to rest if we’re out and about too long. We’d love to do another cruise - have been looking at the Saga ones from Portsmouth to the Canaries as we thought that might be less of a problem than flying…we have been warned that the travel insurance cost would be very high. We’re still waiting for Steve’s biopsy results to tell us exact what we’re dealing with, and hopefully then immunotherapy like you. 
Did you have a chest drain when you came out of hospital and if so do you still have it?

Do you know where you in contact with asbestos? We have been given details of a local support group which sounds great.

This has all come as such a shock to us. Steve has always led a really healthy life style - never smoked and still playing sport regularly until recently. 
I really hope the immunotherapy works for you and will be thinking of you

Julia