Nightmare obtaining tests

[Grank]

January 3rd I was looking and feeling very well but out of the blue was given a grim prognosis of HCC with PVTT and a few months to live without treatment. After considerable efforts to get help last week I was offered curative surgery at the end of March, but ‘provisionally’. This surgery crucially depends on a test and a scan. Well, the test ordered at MDT meeting on January 17 was referred back by the radiology department and appears lost in the system and a CT scan is booked for 3 weeks from now. Is it normal for tests to take so long when we are on death row? Has anyone had any luck getting a CT scan with contrast privately? I’m pretty much treating it like a job phoning and writing to consultants (secretary’s), my GP and hospital departments but no response except people saying they will look into it. I need these tests, because if I’m not suitable for surgery I have very little time to come up with a Plan B. I thought - possibly stupidly - that after a cancer diagnosis treatment should begin within 31 days. It’s now 34 and I’m nowhere.

[WayCas Patient]

Grank,

So sorry to hear about your diagnosis. I too have HCC with PVTT. I have several posts and you are welcome to read them. A little history. I was diagnosed in June of 2017 and given 6 months. I was not given the option of surgery. So, I am surprised any surgeon would say surgery was curative with PVTT. What is your tumor size? Mine was 13cm x 10cm. I had Y90 within 3 weeks. Started on Nexavar and had horrible results. The immunotherapy was approved for liver cancer and I started Opdivo in November 2017. Now, have had 29 treatments and the tumor has shrunk and I am feeling good. Thankful for every day. So, if you are looking for a plan B. Check out Y90 followed by immunotherapy.

Back to your question about CT. Welcome to medical care for liver cancer. Everyone has an opinion and there are no definite answers. I have had 10 to 15 CT scans with contrast and never had to wait more than a day and that was only to get insurance pre-authorization. Are you in the US? Did you ask the radiology department for a copy of your CT discs? I keep a file of every scan I have done. Every hospital I go to jumps at the opportunity to bill for a CT. Keep calling every minute is valuable.

May you have blessings and peace on this incredible journey with cancer. I will try to answer any of your replies.

WayneC

[Grank Patient in reply to WayCas]

Hi there, thank you so much for your support. I hope you are feeling well. It seems you have had success.

I gather I’m having surgery because the tumour is slow growing. It was found at 1.4cm in 2014 on ultrasound but nobody told me. It’s now 4cm x 3cm and both the HCC and PVT are adjacent in the same segment. Hopefully that doesn’t change or I won’t be having surgery. When they said curative they meant treatment would give me extra time, rather than being palliative, I.e, short term. I realise the odds of 5 year survival are not best.

After 3 days of phone calls my wife has managed to get me an urgent CT scan for this weekend. It’s such a fight. However she says we need to keep pushing or we will be left on a scrap heap. I just pray I pass all the tests and am found suitable for surgery. I’m in the U.K. and if I don’t have TACE other treatment will have to be paid for (I’m not insured).

[WayCas Patient in reply to Grank]

Grank,

Glad to hear back from you and that you have a CT scheduled. The tumor size is were resection is appropriate. I am still hoping a resection is in my future. The PVTT is a concern to my doctors. Please let me know how the CT turns out. Keep me posted on your progress.

Best wishes,

Wayne

[Grank Patient in reply to WayCas]

The PVTT really threw me.

I was originally put forward for a transplant but the thrombus had been missed by whoever read the ultrasound and MRI in my referring hospital.

I feel very lucky to have been offered a resection but realise it’s provisional on many factors.

The CT scan and MRI will indicate whether the lesion and PVTT have grown and then surgery will probably be ruled out.

Next, a portal vein wedge pressure test will assess the cirrhosis and whether surgery would leave enough remnant liver for surgery to be viable.

Many ‘ifs’ to be considered. But I’m satisfied that the scan has been brought forward two weeks and if it shows growth I can look at Y90 and Opdivo. I would obviously like to begin any treatment quickly. I was diagnosed 5 weeks ago.

I’m really thankful for your timely advice. My wife has been looking at Y90 also. If my liver is too damaged for section, Y90 is apparently not as invasive as TACE.

Good luck. And thank you 🙏

[WayCas Patient in reply to Grank]

Grank,

The "ifs" will drive you crazy. It sounds like you are doing your homework. Read everything you can. A few tips about PVTT. Make sure you are getting evaluated for esophageal varices. I had a bad bleed. Also, beta blocker is needed.

Y90 is much kinder to the liver as opposed to TACE.

Best wishes,

Wayne

[Grank Patient in reply to WayCas]

I’m on beta blockers Wayne. I had surgery for arrhythmia 5 years ago, very successful, and stayed on the tablets.

I’m thinking the CT scan with Thorax will help identify esophageal varices? Perhaps that’s why the scan was ordered before the wedge pressure test?

My wife does the research- she’s a retired post doc (they never retire). She’s at her desk first thing phoning and chasing up tests. We’ve been together 50 years and says I’m it shedding this mortal coil just yet. She’s recovering from breast cancer herself.

We are both hugely impressed with my surgeon and nurse. The whole team in fact.

Good luck to you. Please keep in touch.

[WayCas Patient in reply to Grank]

Grank,

Just checking in. Do you get the CT? Any plans? Glad you are very pleased with your doctor and nurses. This helps so much. All the same here.

Wayne

[Grank Patient in reply to WayCas]

This is wife of Grank replying. That’s so nice of you to ask.

We had an appointment for the CT scan on the mobile van last Sunday at Birmingham and they did the MRI at the same time. We think they are brilliant. The staff stayed late to do it to save us coming back again from Wales next week!

My husband now has a portal vein wedge pressure test booked for February 25th and this will assess whether he is suitable for either a partial section by laparoscopy, or TACE. He still looks and feels well and I’m hoping his cirrhosis is Stage 1 so they can proceed to surgery. We are mainly concerned about the PVTT although when last assessed it was confined to a branch. So much is down to luck, and although he was dealt a poor hand to begin with, we’ve had buckets full of luck since! Although it’s early days. Queen Elizabeth have been amazing.

Thank you again for asking.