Advice from survivors?? I need to save my dad’s life 🙏

[hopeandprayers]

Hi

I’m looking for advice from survivors on what they did with their diet and anything they felt might have helped with their recovery.

I’ve had advice from someone who recovered from stage 4 lung cancer who cut out all dairy, cut out red meat, reduced refined sugars, use boiled down oat milk for calories, drank eassiac tea and had mistletoe injections alternately in her chest and back.

Does anyone here have experience with mistletoe injections? Because it’s a poison it’s supposed to cause an immune response to the area it’s injected?

Also does anyone have any reviews about NHS vs private?? I’ve read one story about a lady who had been operated on privately before her NHS letter even arrived. Another man, was told he had 8 weeks to live because they couldn’t operate, but found a surgeon in Germany who was prepared to operate and is now cured.

My dad had a scan on 6th August and they waited 8 days to tell him that he had a tumour that they thought hadn’t spread outside of the pancreas at the time of the scan on 6th August (no information on location, whether it’s head or tail etc). He then had another scan 4 days later and was referred to another hospital who told him he would have to wait until 2nd September for an endoscopy, for which the results would take 10-14 days, plus then I imagine a waiting list of lord only knows how long for surgery if he’s eligible. I’m not an oncologist but I’ve read enough to know that this cancer can spread fast, already in the weeks we’ve been eating for the Endoscopy he’s started to feel fatigue and back pain that weren’t there before. I value the NHS but I think they could be killing my dad. The 2 week rule holds no relevance when every single scan and diagnostic test each has a 2 week wait, plus extra waiting for results, the weeks then add up to months.

I’m terrified and I want to know how to save time, because the people at the NHS are so lovely but I don’t feel like they’re well resourced enough and we don’t have time to sit and wait and hope. I already regret not taking action sooner, weeks ago.

My dad has become diabetic, lost weight and muscle mass and is fatigued. He is in some discomfort sometimes in the abdomen area and sometimes has pain at the bottom of his back. He had IBS for around 1 year but creon seems to have sorted that issue out and is almost having the opposite effect at times now.

He has not experienced jaundice but I don’t know if this is a good or bad thing, does it mean the tumour is small or does it mean that it could be located somewhere other than the head of the pancreas and mean that a whipple may not be possible??

How long have people eligible for a whipple had to wait for their surgery after they waited months on different diagnostics??

[Borobi]

Welcome to the forum that no one wants to be a member of. Hope things turn out OK for your dad.

I’m not sure how effective diet is with cancer TBH. My sister had breast cancer and did all the vegan diet plus other alternative therapies stuff. (Not mistletoe injections though). Didn’t help her. But it’s not going to do any harm and it gives you something to focus on. My partner has pancreatic and is just eating what he wants - it’s a miserable enough existence without denying yourself.

Tests for pancreatic cancer take a while, but there is a target they have to stick to (not sure if Covid has affected this) of 2 months from urgent referral to treatment. This was met for him with his chemo despite a short wait for the biopsy and then the consultant appointment.

My partner was listed for a Whipple after 6 months chemo and waited about 6 weeks from seeing the surgeon to the operation date. At the last minute he couldn’t have the op as it was too close to the major artery.

Good luck.

[hopeandprayers]

Borobi wrote:

> Welcome to the forum that no one wants to be a member of. Hope things turn

> out OK for your dad.

>

> I’m not sure how effective diet is with cancer TBH. My sister had breast

> cancer and did all the vegan diet plus other alternative therapies stuff.

> (Not mistletoe injections though). Didn’t help her. But it’s not going to

> do any harm and it gives you something to focus on. My partner has

> pancreatic and is just eating what he wants - it’s a miserable enough

> existence without denying yourself.

>

> Tests for pancreatic cancer take a while, but there is a target they have

> to stick to (not sure if Covid has affected this) of 2 months from urgent

> referral to treatment. This was met for him with his chemo despite a short

> wait for the biopsy and then the consultant appointment.

>

> My partner was listed for a Whipple after 6 months chemo and waited about 6

> weeks from seeing the surgeon to the operation date. At the last minute he

> couldn’t have the op as it was too close to the major artery.

>

> Good luck.

Thank you so much for getting back to me. I appreciate you speaking out and I’m so so sorry that your husband wasn’t able to have the surgery.

Am I right in thinking that they already know if it is operable before they even perform an EUS and biopsies? I’m worried that they have already decided not to operate and are making us wait 2 weeks for biopsies because they think there’s no rush now and only need the biopsies to confirm the cancer and start chemo. They’ve made no comment on where the tumour is located or anything. My dad seems to remember he was told it was “relatively small” and didn’t appear to have spread outside of the pancreas at that time, but that first scan was done on 6th August and I feel like every day is important.

I think I might be able to get the money together with savings and borrowing for a whipple privately. I feel like with a 6 week waiting list for the procedure that should be something I should be looking into ASAP right now??

My dad does have other health complications but he’s only 59 and I think he could handle the surgery.

He also has an inactive spleen due to a transplant for Leukaemia 20 years ago (he’s a lucky man). I think this could help in some way because if they removed that too then he’s already used to living without it? Maybe it won’t so easily spread there if the spleen isn’t working?

Also, I’ve been reading a lot about research suggesting there could possibly be a link between the same bacteria found in the mouth when you have gingivitis and chances of getting pancreatic cancer, maybe probiotic foods which are the opposite to this bacteria could help with healing?

I refuse to see my dad die, I understand that others are suffering too and I don’t think we deserve better luck than anyone else, but I just think maybe it can be cured if we’re quick. Right now he seems generally okay in himself, he’s lost muscle mass and has developed diabetes, he’s taking creon which helps with IBS. He’s already starting to have some back pain in the last few weeks we’ve been waiting on tests (which was not present a few weeks ago), so to me it seems that every single day and week is precious and we can’t afford to keep waiting around. The pain he’s just started getting could be because it’s started to spread in the last few weeks

Does anyone think private is worth it? I’ve heard Germany is advanced in this area

[Borobi]

My understanding is that without a biopsy they can’t even be sure that it’s cancer - scans aren’t that specific. The first consultant appt we were told that there was a growth and they would treat it as if it was cancer unless it was confirmed not to be. We were told it wasn’t operable at the appointment after the biopsy. After chemo they thought there was a possibility of doing the op, but in the event it wasn’t to be.

Often they’ll do chemo first to shrink the tumour before they operate. So you might have time during that to see if it’s worth going private.

But for accurate information I’d phone the nurses on the helpline. They’re the experts.

[hopeandprayers]

Borobi wrote:

> My understanding is that without a biopsy they can’t even be sure that it’s

> cancer - scans aren’t that specific. The first consultant appt we were told

> that there was a growth and they would treat it as if it was cancer unless

> it was confirmed not to be. We were told it wasn’t operable at the

> appointment after the biopsy. After chemo they thought there was a

> possibility of doing the op, but in the event it wasn’t to be.

>

> Often they’ll do chemo first to shrink the tumour before they operate. So

> you might have time during that to see if it’s worth going private.

>

> But for accurate information I’d phone the nurses on the helpline. They’re

> the experts.

Thank you so much, I will.

I don’t have the money but I would find a way to get it.

I read this article and it just haunts me

https://www.dailymail.co.uk/health/article-2421781/amp/Father-cancer-given-8-weeks-live-NHS-given-clear-surgery-Germany.html

I appreciate you reaching out, thank you

Sending love and light to you and your husband. I wish this wasn’t happening to anyone in here

[Borobi]

We all need hope. But beware of stories in the media. If you google the man in the story you’ll see that he died in 2013. Travelling to Germany isn’t a magic cure. There are success stories from there, but also from people who had their Whipple in the UK.

Make every day count. Sometimes not having major surgery and having a better quality of life in the short term is better.

[PCUK Nurse Nicola]

Hi HopeandPrayers,

Its Nicci here, one of the nurses from the support line here at Pancreatic Cancer UK. I am so sorry to hear about your Dad's diagnosis hopeandprayers.

I think it might help to have a chat with one of us on the support line so we can help you further with this. Our support line is open Monday-Friday 10am-4pm and the number is 0808 801 0707. If you prefer you can also send us an email at Nurse@pancreaticcancer.org.uk. Hope to speak to you soon hopeandprayers.

Kind regards

Nicci

Pancreatic Cancer specialist nurse

Pancreatic Cancer UK

Support line - 0808 801 0707

open Monday to Friday 10am - 4pm

Email: nurse@pancreaticcancer.org.uk