Mesothelioma

[fedupandtired]

My mum has just been diagnosed with mesothelioma and I'm desperately looking for any positive experiences of people who've beaten the odds and survived for a reasonable amount of time (or effectively been "cured").

She was a fit and healthy 62 year old until 5 weeks ago when she caught what we thought was a flu type bug which knocked her for six. Two weeks ago she was admitted to hospital as she had fluid on her lungs and was admitted again last Monday and she had a chest x-ray which showed an abnormality which was followed with a CT scan.

Today she received the devestating diagnosis.

The CT scan suggests that it's not spread and her consultant has recommended surgery. She's being referred to another hospital for specialist treatment and the doctors are having a meeting either tomorrow or Thursday (step-dad wasn't sure, obviously shell-shocked so hadn't taken in all the details) and then they'll discuss in more detail her options.

We're all hoping she's going to defy the odds and get through this. Prior to this she was incredibly fit and healthy (to the point of obsession which whilst not particularly good at the time will stand her in good stead now).

I know the statistics but if anyone can give me even just a glimmer of hope I'd really appreciate it.

I'm sorry, what a shock for all of you

I think the fact that she's being recommended for surgery is good - and I know a woman who had lung cancer (can't remember which sort, sorry) and is absolutely fine 7 years later, following surgery. They removed most of one lung, and she had some rehab time learning to breathe more deeply with the other - took up yoga, as I recall. But she is fine.

Wishing your Mum all the luck in the world.

Thank you. Yes, I think Macmillan nurses should be my next port of call.

Elibean - that's very encouraging, I just hope she's fit enough for surgery. Prior to getting ill she was incredibly fit and healthy (gym several times a week, eating very healthily) but this has really knocked her for six. I think the only reason they're considering it is because she was so fit and healthy.

Horrible, horrible illness.

Yes, horrible. I really am so sorry.

I think its excellent that she was so fit prior to diagnosis - yes, it will stand her in good stead, and excercise will have maximized her lung capacity, I would think, so she will cope better with the lung capacity she has left after surgery.

Really hope the update from today's meeting is positive.

So sorry for you. My father was a super-fit 66 year old (went to gym, went running several times a week, eat well, didn't smoke). He started becoming slightly breathless when working out, went to GP, had scans and it became evident that he had mesothelioma caused by exposure to asbestos in the 1950s when he was in the Royal Navy.

It's an horrific disease - I'm sorry I can't offer you anything positive. It killed my father within six months (this was in 1999). He had surgery and radiotherapy but to no avail - the tumours spread very rapidly.

I don't know if any new treatments have come to light - at the moment I think it's still very difficult to treat in any effective way. Can you find out if there are any clinical trials/studies that your mother could potentially participate in to try and halt the disease in any way?

Also, something to think about (which may not have crossed your mind at this moment) is how your mother's been exposed to asbestos and who is liable. In my father's case, he'd been exposed in the Royal Navy, so my mother receives a war-widow's pension. Was your mother employed in a certain industry that used asbestos? Can you find a solicitor to help you and her?

Thinking of you.

Yes, have a friend who is now fine.

She had very successful surgery, I think they backed it up with a bit of chemo (which she did very well on, not too much nausea). She was back at work fulltime well within the year.

It was only a few years ago, so I can't tell you her long-term outcome. But she was certainly fine at the 2 year mark, and they were able to do something with markers and scanning, and IIUC be reasonably sure there were no active cancerous cells still in her body.

Wishing you heaps of good luck.

Thank you very much Tianc. That's very encouraging and just what I wanted to hear. Anything that will give just a glimmer of hope is very much welcomed.

As for how she got exposed - we think it was at her place of work. Somewhere that she worked for probably 20 odd years. They definitely had an issue with asbestos so the chances are it was there. I'm sure once we've all got over the initial shock she and my dad may want to take legal advice but that's not their priority at the moment.

I'm very angry about it though and I want somebody to be accountable for it. She's so poorly at the moment and really suffering. I know it's never fair when someone gets cancer but knowing that it could have been entirely preventable but for something someone else did is hard.

Hope your mum's meeting with the consultant went as well as possible.

Yes, also thinking of you, and your Mum, and hoping the consult was helpful xx

She hasn't actually seen a consultant yet, at least not at the hospital they're transferring her to. She's due to have a biopsy on Tuesday and she thinks an appt on Thursday to discuss options.

I'm really not very happy. Physically she's feeling like absolute crap and she's just been left to get on with it. I don't know what happened at the doctors meeting and all she knows is she'll have the biopsy Tuesday, results will take two days and then an appt on Thursday. Apart from the fact that with cancer time should be of the essence she wants to feel better. She can't go out anywhere 'cause she's so weak and shaky but by far the worst thing for her is horrendous night sweats. The sweats literally dripping off her and she's having to change her nightie 3 times a night. To me leaving her to just put up with it should be unacceptable. I have suggested that she phones the Macmillan nurse tomorrow although she was a bit hesitant 'cause she didn't think they could do anything. I said they're not there to fix her, they're there for her to talk to and maybe they could suggest things that will help. I sincerely hope she does phone them. I'll be seeing her tomorrow though so if she hasn't then I can always phone them (she's not very good on the phone).

She's got a couple of good friends visiting tomorrow and one of them has been through the mill big time with breast cancer. I'm hoping it will help her to talk with a friend who knows how she's feeling. Obviously the cancer is different but she'll know exactly how scared my mums feeling and how worried she is for the future.

I'll update again once I know more.

Thanks again.

I'm sorry. I wouldn't be happy either, it sounds very frustrating - inevitable, I suppose, that there will be waits for appointments, but still frustrating and so hard on all of you.

I hope the Mac nurses help - whoever phones them. Good luck tomorrow, xx

After much tooing and froing my mum has an appointment with the oncologist on Tuesday and wants me to go with her because she feels I'll be better placed to get answers.

So, what questions do I need to ask? Obviously we need to know what stage the cancer is and if they're still recommending an op we want to know what type. From what I can gather there are two different types of op and I think the more radical one will give her the best prognosis so shall be pushing for that (or at least wanting to know why it's not appropriate). Also I shall be asking about any clinical trials.

Anything else?

You're well ahead of anything I could think of there. It's quite clear why your mum wants you as her admin and advocate!

All very best of luck for Tuesday.

Thank you. I used to work for a pharmaceutical company which specialised in cancer research so probably know a little bit more than the average person (but still know only a little).

Just want to make sure we cover all the bases.

Today we received the worst news possible. Apparently it's not mesothelioma, it's another type of lung cancer (I don't know which yet) and it's terminal. The doctors reckon she's had it ages but because she was so fit she didn't have any symptoms until recently and now it's too far advanced for treatment.

I was at work when my step-dad phoned me and all he said was I had to leave right away and meet him at their home so I knew it was bad. Naturally we're all devestated. My mums in a very bad way and is being admitted into a hospice tomorrow where they're going to sort out her pain relief and try to build her up a bit and make her stronger. Currently she's far too frail to undergo chemo but if she gets stronger it may be an option. The doctors said chemo would only give her a few weeks but a few weeks is better than nothing. Prognosis currently is a few months.

I'm going over there first thing tomorrow to help her bathe and will go to the hospice with her where hopefully I'll find out more about her cancer.

So, all in all a pretty crappy day.

Don't really have any useful words but I'm so very sorry and thinking of your family.

So very sorry.

Wishing you all strength and courage.

I'm so sorry

I opened the thread as my fil had been diagnosed and been receiving treament for mesothelioma for the last 12 months and I was interested in other posters experiences.

The Macmillan nurses have been very helpful to my pils.

Sorry to mis-post in your thread like that, fedup. Thanks for lightning deletion, Tech.

Oh I am really, really sorry. What a shock for you all. I hope that the Hospice are able to help your Mum feel a bit less poorly.

Keep posting, if it helps you a bit. We are here xxx

Sorry I've not updated before now.

Sadly my mum died on 28th Jan. The intention was always to build up her strength so that chemotherapy was possible but sadly it wasn't to be. She just got weaker and weaker. She was admitted to a hospice on 20th Dec where she stayed until the end and I have to say the care she received was exemplary.

I still can't believe she's gone.

I am so so sorry for your loss fed sending you and your family hugs.

So, so sorry to hear your news. Big hug. x