Hi

Good on you for going private and getting things moving for your checkup.  My husband was diagnosed in april 2019 with stage 4 terminal cancer of the oesophagus with mets to his liver, at the time he had only been slightly unwell and very fit and healthy so it was a complete shock (age 43).  I, on the other hand, was often unwell and in pain had a lot of  odd 'symptoms'. A few months before his diagnosis I was diagnosed with polymyositis (a muscle wasting disease) and told there was a 50% chance it was being caused by cancer!  My rheumatologist wanted me to have a colonoscopy and gastrophy to check for cancer but it was turned down thru public system, however, after my husbands diagnosis we decided to go private and have the tests done.  Luckily all that was found was a small polyp that was removed.  It cost a small fortune but we have two girls, 8 and 12, and the worry that both of us may have cancer and not be around for them as they grow up was awful.  to me it was well worth the money for peace of mind, when people close to you have serious cancer it is natural for you to worry too (my sister also has stage four cancer which is terminal, melanoma, and I lost another sister to melanoma when she was 21).  You are doing the right thing in making sure you are OK, hopefully your tests will be fine and I really hope they are, it's a huge weight off your mind when it comes back OK, and most people who don't have much experience of cancer in the family have no idea how stressful it can be to live with the fear of it, they think we are hypochondriacs!  Incidently, no one is my husbands family has ever had cancer before! Definitely never thought he would get it. Good luck with your results and hang in there, lot's of deep breaths if you feel that panic coming on!

Hello Plebbs

It's nice to e-meet you here, and thank you so much for your reply, which is much appreciated. Instantly, I feel 'normal' again, having been feeling very alone and isolated dealing with this situation in secret, basically. I've talked to my two children, who are both adults, about the tests, but have played it down as much as is possible whilst also not lying. They are still grieving for their uncle at the moment so I don't wish to make that a complex grief process by adding my own health anxiety to it. 
 

I am so sorry to hear of your husbands terminal diagnosis alongside your own health issues. What an incredibly challenging and frightening situation for you all. And no wonder you felt so determined to make sure you had answers to your own health concerns. Which turned out to be well founded. I'm constantly amazed at how poor the NHS is in some areas whilst also being incredible in other areas. I've been very fortunate on the whole, however, I found my own GPs attitude the most difficult. Hence, going private. 
 

I do hope you are managing as well as can be expected and that you have a strong support network in place to help. Losing so many members of your family has such a knock-on effect, doesn't it?! 
 

Thanks again for your reply!

Lily

Hi

Yes it's amazing how a cancer diagnosis can have such far-reaching effects on so many people - with your partner also having had a recent 'bad' experience with it and your children losing their uncle, it sounds as though you are putting everyone elses feelings first (as we do!) when you are so worried about yourself but trying not to let on!  You won't be able to get on with your life properly until you know one way or the other, even then, when you have had experience with a close family member being misdiagnosed it will be hard to feel completely worry free.  My GP wasn't that helpful either, just said I was 'overworrying' because of my husbands diagnosis, and that it was so unlikely it didn't really need checking out, certainly wouldn't have got it thru public.  Even the private referal she was reluctant to do but did it because my rheumatologist wanted it checked out. I've seen him privately for over 20 years and trust his opinion more than hers! He also has children (though grown up) and lost his wife to cancer last year unexpectedly and quickly (lung cancer), so has a bit more understanding of where I am coming from (GP is very young and new!).  My advice would be not to give up until you are satisfied they have answered all your worries adequately!  The more worried you are the more your health will suffer from the actual worrying which can cause ill health in itself, so they should be treating it seriously!  Until recently I had very little experience of cancer apart from my sister 30 years ago, and losing a friend who had cancer for over 20 years.  But in the last couple of years it seems to be becoming more common - my Dad got prostrate cancer (caught early and treatable luckily), my mum's identical twin passed away last year from mouth cancer after a short battle, my sister was diagnosed with stage 4 melanoma and now my husband also has it!  A couple of months back we saw our paediatrician we have known for over 10 years, he was shocked to learn of my husbands diagnosis and then told us he also had been recently diagnosed!  So its not as rare as my GP makes out, not sure if it's because we are all gettting older or its just becoming more common, but it's natural we are scared and need reassurance - who wouldn't with that experience!!  And we are all told the earlier you catch it the better, it's more screening that's probably needed as we get older, not less!  They could save a lot of money and lives by diagnosing people properly before it is too late.  I'm not living in UK at the moment by the way, we used to which is why I am on this forum, but we are in NZ.  Unfortunately the drug my husband needs (herceptin) which according to the oncologist could give him 'years' instead of 'months' is not funded in NZ for him, only for breast cancer.  So we have just started it at a private cost of $4100 every three weeks!!!  It is funded in Uk so if we moved back there it would be free... hard decisions!!  He will have a scan in a few weeks to see if it has made any difference to new tumors which are rapidly appearing in his liver, if it has we will have to decide what to do.  At the moment his mum is paying for it for us, so we are very lucky to have that support from her while we trial it.  I hope you don't have too long a wait for your scan results, its a nervewracking business waiting for them, as you will know from your brother...