Another (Private) Opinion?

Hi Fortiemac

I don't personally have any experience of getting a second opinion but I was initially seen privately and then transferred my care to the NHS.

I think from what you've said that you're thinking of paying for a second opinion and I wondered if you realised that you can get a second opinion from the NHS. If this is something that you might be interested in doing then clicking on this link will tell you how to go about it.

When I went to see my GP about a lesion I'd noticed on my arm he referred me to be seen by the local dermatology department. However, as there was a twelve week waiting list to be seen I paid to see a dermatologist privately. After deciding that the lesion needed to be removed to find out what it was, the consultant wrote to my GP telling him to refer me to his NHS practice as this would save me paying for the excision. So I then had the excision on the NHS with the same consultant I'd seen privately along with all my follow up care.

I hope this helps 

x

I am sorry but did not follow your whole thread so dont know all the details

My wife was diagnosed in 2013 with oesophageal cancer.

She received RT and chemo for 7 weeks and was then operated (oesophagus removed and 30 per cent of stomach which was then pulled up )

She was very tough and survived that.

She had a recurrence in the lymph nodes next to the anastomosis in 2017 then did Chemo and RT for 7 weeks.

She does PETS or MRI every six months.

At the time the doctors were not positive but I kept digging and we went to Cologne in the University Hospital.

My point is that one should not give up.

There may be trials and there may be other treatments.

Did they look at Cyberknife or other treatments?

I wish you the very best but if you really cannot be cured in the conventional sense then I would try to avoid opioids .

Ask them if you can be prescribed medical mariujana in spray form.

I have just witnessed palliative care with morphine and frankly would prefer to try that which many now say is better.

Keep on trying all the best

Hi Fortiemac

Having read your post above,  am I right in thinking that you are due one of the three month check-ups soon?

Dal, was told that he would be having PET/CT scans quarterly, so it should be possible for you to ask when your next scan is due and confirm that it is a PET/CT that they will carry out...with access to your NHS records the private company can find the information from there.

I hope you would never experience being treated differently in any health environment based on your personal investigative choices..

I hope you continue to keep as well as possible and look forward to reading positive updates

Lowe' x

Thanks again, Lowe'.  Yes, my first 3-monthly is due very soon, but I have't heard about an appointment yet.  In my experience (with other conditions) they're always late, anywyay.  I supppose one has to "cut them some slack" becuase of the damned Plague.  My NHS nurse said whe would ask my Oncol. if she would order a PET for me, but my expectation on that front is low to zero.  So I have arranged a private PET/CT down in London next week.  Dreading the public transport to get there (not to mention the cost, £4k+ with the telephone consult afterwards).  Still, I will know more about  what progress the cancer has (or, let's me optiomistic, hasn't) made?  I may also  have a private endoscopy, if the private consultt. thinks that with more info he could possibly offer some other treatment.  We shall see.  I'll regret it forever if I don't do it.  I can afford it, but feel guilty that I can.  It's shouldn't be necessary.

It's all very compicated and intense, emotionally.  I'm so fearful about how it's going to map out. Let's face it, this is a vile type of cancer and it can only end badly.   I'm  terrified of being denied effective palliation.

Oh dear, how scary it is.  I know that I AM SO lucky (forgive the shout) that I am still pretty free of symptoms, apart from the odd sensation,recently, on swallowing.  I know I am so fortunate to have got this long (10 months since diagnosis) without bad physical problems.

Dear Fortie

My Mum sent me a newspaper cutting, which had an article titled "Breakthrough in treatment of cancer that killed Morse" it writes about John Thaw and the Oesophageal cancer that he was diagnosed with in 2001. They have done recent trials with an American Immunotherapy drug called Pembrolizumab, this drug is currently approved in the UK to treat cancers, including melanoma and non-small cell lung cancer - it is hoped to be fast tracked for use by the NHS for OC, so please ask about it....the article states "we had patients with stage-four oesophageal cancer who were really unwell and we told them they would live for less than ten months" says Professor Mansoor, "but as the treatment started working these patients got better and better. Now two years later, they are still cancer-free"

Dal is on a similar drug call trastuzumab which seems to be working in a very similar way for him.

There is always hope and I wish you every success with your private consultation team....Emotionally this is very draining and that is fully understandable, so I hope you know Dal and I are here for you should you like  to exchange worries or news...  We will follow your progress with fingers crossed.

Dear Lowedal and others here (Troc, Latchbrook, and Forrester42 from elsewhere):  I must rbing you up to date with my latest mixed news - but I'm taking it as mainly V. GOOD news!  (I shout)!

Last week I went down to The London Clinic (Harley Street & all that) and had PET/CT scans that the NHS woujdn't give me after my treatment ended.  Instead of the verdict given after my NHS CT, which was the most unsatisfactory "stable" the Private Oncol this morning told me on the phone that the Oesoph. Cancer is now "clear"!

Of course I understand it can, robably will, return at any time, but it feels extrememly positive to me for now!  The PET did show up some cancer, however, in my prostate,  but as that is relatively common for us old me and it tends to be  a slower one, I am almost unconcerned about that.  I have to try to get back into my NHS GP for a start of the prostate investigations, of course.

In my excitment, I asked the Private Oncol this morning if it wouldn't be unreasonable (still Plague-aware of course) to think about a holiday next year?  (We have only ever been on one holiday abroad in 40 years.  Not normally my scene, but I'd been thinking about bucket-list stuff!.) He said:   of course, no reason at all not to!  So now I'm pondering about the real possibility of it!!

So, after all the second opinion has been worth it.  Very very expensive, very worrying, and I don't know what to think about my experience of the NHS through all this?

I'll be lurking here, probably while my Oeso C is in abeyance, but I now need to look into the Prostate Group, albeit with less anguish, to start with.   I am also going to allow myself to feel my memebrship to the "Incurable" group is fraudulent, pro tem.

So, while my "C-Journey" has taken something of a turning, I'll still be here.  Good luck to you all and thanks for your help.

Hello Everyone, this is March13. 

Dead Fortie I am so pleased that you went down the 2nd opinion route and it paid off. Seems weird that the oesphagus cancer suddenly went and I wonder if the NHS should have picked up with that quicker and definitely not let you pay for a PET scan. I emailed before and sorry not to have been in touch sooner but I am really pleased for your news. I to was diagnosed with oephageal cancer and secondary lung, Did 5 cycles of chemo but didn't work, then radio but have have been fighting for immuno the whole time I mentioned the Rutherford to you. I have just completed my third Immummo (Nivolumab) through the NHS and am questioing how it is going because it feels like something is happening but don't have my first scan until after my fourth treatment until 19 Nov, This Scaniexty as I hear they call it, is a nightmare. I feel strongly but my other immuno treatments have been hampered somewhat by radiotheraphy, a spot of pneumonia and a lung clot so not as easy road. Currently increased soreness around cough and eternal coughing up of phelgm but less so than I have had but its a bit of a slog. Also they mentioned in March that they saw a shadow on my illiac bone but since never mention and I haven't felt anything until last week. So bit of a waiting game, However, I lost my voice to a whisper and SALT looked at this and said it is a palsy and cancer pressing on nerve but this is coming back so goodness know's what this scan is going to bring but it sure is a long old waiting game,  Still remaining positive though. 

Hello March13.  So glad you have posted back because it was definitely your mention of The Rutherford that sent me on that route and I am forever very thankful for the suggestion.  I'm not quite sure of their way of working, but their people were very efficient in making the necessary contacts with the NHS and then getting me a suitable consultant  down in London.  I had two consultations with him (telephone, of course) and the PET and CT scans in London between.  I am still trying to reconcile the two assessments of my condition now, but I am more than prepared to accept the latest, private, judgment that I am, pro tem, "clear" of the primary tumour (oesoph.).  The HNS only did a CT, and they assessed the tumour as "stable" .....  and all that opened up the discussion about the limitations of the CT.......   

I'm obviously dead chuiffed about the results so far but the fly in the ointment is the diagnosis of a prostate tumour.  I can deal with that more easily.  I am currently trying to work out the mechanism/etiquette of getting the diagnosis and information about the prostate situation back into the correct "place" in the NHS.  (I have been on medication for enlarged prostate for many years, but haven't had blood tests, examination or any sort of imaging for ages.)

Now, back to you:  It is a rather complicated situation, it seems - pretty much par for the course, for cancer! - but you're obviously bright and savvy and won't let any stone be left unturned (forgive all the metaphors).  Heavens, you're so much younger than me and I'm sure what's available to you won't be limited.  As you say, Stay Positive.  I make my own fight with the disease my sort of "hobby" or even "occupation" if that doesn't sound bizarre!

Very best of luck, and thanks again.

Great news about the oesophageal cancer Fortiemac! I wonder what your NHS consultant will say when he hears this? Obviously not so good that you may have prostate cancer though. Will the private consultant send all the reports, etc on to the NHS?

x

Dear Fortiemac 

Wow! what a rollercoaster you are on! it is indeed amazing news about the OC, it is though marred by the news of a new site. As you say the cancer in the prostate is potentially a slower growing cancer and the NHS will hopefully move quickly to ensure that you will receive the correct treatment for that.  Would you say that you had experienced any symptoms in this area?

I wish for you success on this new journey, and I hope you get that holiday.... 

Best wishes

Lowe & Dal