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InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Planning Chemo in Prep for Surgery

Postby InfoForMum » Mon Aug 19, 2013 11:04 pm

ABOUT THIS THREAD - This thread starts the day before initial diagnosis (see this entry). Am changing the subject as things move on, so skip to the bottom if you want to see the post relevant to the current subject. If you want the full story it's here, but brace yourself because I'm not good at keeping things short!

Hi all,

My Mum is going for her post cat scan consult tomorrow. Quoting consultant "We won't be surprised to find it's something serious". She was also told symptoms were textbook for cancer, but still holding out hope that the initial ultrasound missed a low down gallstone and the "anomaly" seen in her Pancreas is nothing. Preparing, without thinking too hard about the full implications of a PC diagnosis, for the worst and hoping for the best.

The question, very simply is whether the diagnosis, if PC and any follow up tests should stop her quickly getting a stent to resolve blocked bile duct symptoms? I realise, if it's the very best news e.g. gallstones, there would be a permanent fix with gallbladder surgery/stone removal, but he implied he wouldn't rush to do a stent if cancer was diagnosed. She is really struggling with that because she know's it's poisoning her body just when she suspects she needs to retain her natural good health and those symptoms are the main thing currently making her feel depressed and very very poorly.

Some background if it helps and will try and update you tomorrow;

My Mum is 68 and very fit except for the long history of indigestion written off to various causes (yes, that's been on our minds a lot recently). She's currently feeling pretty poorly because 4 weeks ago she had sudden on-set high right abdo pain, loose and pale stools, dark urine, sickness, loss of appetite. Painless jaundice for last 2 weeks and a week of chronic itching. It's taken 3 weeks of doctors visits and referrals to get to this point.

Sarah
Last edited by InfoForMum on Fri Sep 06, 2013 1:00 am, edited 4 times in total.

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Should tests delay stent op for symptoms?

Postby KATB » Mon Aug 19, 2013 11:17 pm

Hi Sarah,

The first thing they would probably do is the stent to resolve the jaundice. Chemo wouldn't be given until this is resolved. Certainly this was the first step for my dad and he felt so much better once the jaundice was resolved and then the next step was deciding on treatment.

K
x

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Should tests delay stent op for symptoms?

Postby KATB » Tue Aug 20, 2013 9:46 am

Gosh I wrote that post late on and it's a bit repetitive!

Let us know how you get on today.

K
x

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Should tests delay stent op for symptoms?

Postby PCUK Nurse Dianne » Tue Aug 20, 2013 12:04 pm

Hi Sarah,

Sorry to hear of the delays in your mother having access to treatment. As mentioned if your mother does have an obstructed or narrowed bile duct this does need to be remedied. If it is due to gall stones, these may be able to be treated via a procedure called an ERCP, which is an endoscopic procedure. If this is due to a cancerous process, certainly a stent to open up the bile duct is the first process. Then it will take some time for the jaundice to resolve which may take 1-2 weeks.

Sarah please feel free to contact us on the support line (020 3535 7099 or support@pancreaticcancer.org.uk)if you wish to discuss this further after results of your mother's scan. There is a particular pathway that patients with a potential diagnosis of pancreatic cancer should be following, and we can help to guide you through this if necessary. Please do not hesitate to be in contact if we can help.

Kind regards,

Dianne

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Diagnosed today - help needed

Postby InfoForMum » Tue Aug 20, 2013 12:13 pm

Thank you so much for the prompt reply. It is the news expected and he's offered her a stent op tomorrow night, so that is one question out of the way and so, so, so many still to answer.

It's a local 18mm adenocarcinoma with some doubts about operability due to suspected involvement of the portal and splenic vessels. Up to the vessel involvement, that felt like amazingly good news. MDT locally discussing operate/don't operate decision either tomorrow or Monday. If yes, they'll refer to Adenbrooks to plan a whipple, if no, it's on to the oncologists. If I sound together it's because I cope by gathering all the info and dealing with the practical bits. Will be dealing with the emotions when they finally catch up with me, probably when I speak to my sister in Teesside.

A huge concern now is getting a second opinion if the MDT decide it's borderline rescectable and decide against. We'll want that opinion because I understand there are other surgeons in the UK who will consider more aggressive treatment. Equally if it is deemed operable, I'll need to find a second opinion because Mum will want to know where they are getting the very best outcomes in the UK and if a stomach saving op is doable.

Thinking far too much right now, so will leave it here. So glad I found this site. Feel i'm going to need it lots in the next wee while!

Sarah
Last edited by InfoForMum on Wed Aug 21, 2013 10:52 pm, edited 1 time in total.

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Diagnosed today - Advice needed

Postby suef » Tue Aug 20, 2013 8:27 pm

Dear Sarah,

I am so sorry to read the news about your Mum and wish you much courage for the days and weeks ahead. I am very glad that my post on changing my surgeon was useful and I do urge you to contact the Support Team as they have so much valuable knowledge to share.

I also had a stent inserted, before my Whipple, and it was a just a minor op with a quick recovery, I hope it will be the same for your Mum.

Do keep in touch and let us know how things are going - and do fight to get the best care!

Very best wishes,

SueF

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Stent Op and MDT Today

Postby InfoForMum » Wed Aug 21, 2013 9:49 pm

Many thanks for your kind words Sue! My mum is also Sue (happy co-incidence) and thought it would be nice to introduce her properly.

Stent op was successful today so no surgical alternative tomorrow - yey. Bit of a laugh on check in today as her jaundice is quite severe, so the nurse assigned had no trouble picking her out in the waiting room. There have to be some advantages to looking like Bart Simpsons long lost auntie! Spoke to her about 90 mins after the procedure and she was still high as a kite on pethadine and temazapam which resulted in some more much needed giggles.

Thanks to some superb advice from the support line, she also asked for and got a prescription for pancreatic enzymes. Had no idea it was helpful before whipple, but it now makes perfect sense that there may be an effect on enzyme production and flow in the pancreas that won't be sorted by stent as well as the blockage to bile duct which will. As my mum is a superb cook and a foody it should make an enormous difference to her quality of life, not to mention helping sort the half stone pre-stent weight loss and restoring her health for the fight ahead.

Local MDT was today. With potential involvement of join point of splenic and portal vessels could come back marginally rescectable with recommendation not to operate. Have specialist in London, where they're more experienced with marginally rescectable surgeries and downstaging to improve outcomes for marginal ops all lined up for 2nd opinion regardless of MDT outcome. Again thanks to excellent advice from the helpline (can't express enough how comforting it was to know my research is mainly right and i'm not tilting at windmills!)

Tissue test due back Monday-ish. Just a scrape from stent site not needle biopsy so only 30% chance of conclusive look at stage/type of tumour. If needed needle biopsy to follow soon after. Want to get the full measure of this perniscious little b*stard so we can make it's life misery as soon as poss.

Again, can't believe the kind, brilliant and comforting help that's been volunteered here in such a short time. Sue I wish you well and I'll try keep in touch.

Sarah
X

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Diagnosed today - Advice needed

Postby yorkypaul » Wed Aug 21, 2013 10:18 pm

Hi Sarah
I am so pleased that you have done your research well and that you are so positive in your attitude to tackle this disease with knowledge and foresight! Your mum is lucky to have you on her side fighting this thing in such a measured way. I don't need to tell you to push, push, push to get what mum needs all the time because I can tell already that you will do just that!
Best wishes and a big hug!
Paul

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Stent and MDT Today

Postby InfoForMum » Wed Aug 21, 2013 10:39 pm

That's so kind Paul. Feel like it's a delicate tightrope between alienating current care givers and driving for the very best care, but rest assured I am willing to thoroughly p*ss off just about anyone as long as Mum gets what she needs. Am constantly checking how much information she actually wants and telling her to tell me to sod off if she just wants to fall apart a bit or have a "non-cancer" day, but so far it's working. Early, early days and one step at a time hey!

Having had a look at your story I'm very touched you took the time out to reply at all, hope you are finding some peace and hope your health concerns are properly resolved.
Last edited by InfoForMum on Mon Aug 26, 2013 5:16 pm, edited 2 times in total.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

"Borderline" Suitable for Op

Postby InfoForMum » Thu Aug 22, 2013 7:27 pm

I'm feeling a little less robust today, but updating here is getting kind of cathartic.

Great things;

A little victory dance was done round the loo this morning (fortunately heard from outside not seen) when pee had changed from mahogany colour to dark oak. Hoping to progress through laminate flooring colour chart to light beech then have a celebration!

First Creon taken today and usual 21 gun salute from her belly and pain didn't follow post meal - Fabulous!

Confirmed MDT locally has now referred to Addenbrooks and I have put feelers out with specialists good at locally advanced ops and nanoknife, sharing known information about mum to confirm early if anything obviously not worth exploring so we aim for the right 2nd opinions.

Not so great things:

Itching actually seems to be worse not better which is making sleep impossible. How quick after a stent should this improve? Only 24hrs in now, but her consultant got her hopes up this morning by suggesting he would have expected to see a minor improvement by then. Pee improvement says bile getting thru, so have suggested she calls consultant first thing if progress not made. Don't want to think delay in stenting cos mum withstood jaundice symptoms so well has caused liver probs :-(

Got a copy of the notes the consultant forwarded to the MDT. Turns out not only is there evidence of involvement of confluence of splenic and portal vessels, there's doubts about the hepatic artery too and "teardrop" anomalies seen in both. Doesn't feel like great news and makes me itch to talk to those specialists in advanced ops right away.

The MDT at Addenbrooks is delayed to 2nd Sept because they only do em on Mondays and Monday is the bank holiday - let's hope the tumour respects public holidays too hey!!!!

So very much mixed bag. On-going itch has totally knocked any confidence mum got from the reportedly successful stenting so hope we can get to the bottom of that tomorrow. Haven't shared my concerns about the extra vascular involvement with Mum as not done my research yet. Got a Tuesday meet with the consultant here when histology should be back if we haven't seen him before for on-going jaundice issues.

Hope you're all taking care and catch up soon.

Sarah

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: "Borderline" Suitable for Op

Postby suef » Thu Aug 22, 2013 8:53 pm

Dear Sarah,

Congratulations on your superb organisation! So glad the Creon enzymes are working.

Just a little note to say that after my Whipple (done in Belgium) the surgeons advised me to stop drinking alcohol completely, except for a mouthful once a year. I believe that British surgeons are less draconian - but I do not drink any alcohol at all now.

Keep strong!

Best wishes,

SueF

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Thu Aug 22, 2013 9:37 pm

Thanks Sue,

She's been off the sauce since that initial episode of pain and vomiting, so she's being a total soldier.

Sx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Fri Aug 23, 2013 12:06 pm

So, a new day and thankfully stuff I can do. Have a solid steer on a good consultant surgeon in London for 2nd opinion. Getting CT on disk ordered today to share.

Spa day booked - Total relaxation full body and scalp massage + deluxe manicure for next friday - hopefully she'll be able to stay still for that long with the itch!

Pursuing Questran for itch relief and a calomine alternative called poxclin. Worked for my nephew with chicken pox when calomine wouldn't cut it - non aerosol foam that cools and soothes, in case it helps anyone else.

Sarah

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Sat Aug 24, 2013 9:28 pm

So she had a good night last night - YEY! Homemade therapy consisting of dunking very itchy feet in a bath of cold water with bicarb in it every time she woke up plus Nytol. Feeling rested put her back in fighting mode.

The only downer is that she's now developped a red itchy rash on back and chest which started to spread to arms this evening. Can't find much about that, but most likely causes look like an allergy to Creon or stent. She's keeping a close eye on temp (so far normal), we're obviously concerned. Effect on pee and other is variable (darker then lighter), but from last bits of advice on how quick this really works, that's perhaps to be expected.

Her consultant actually phoned her at home today, but didn't have a steer on the rash, he did caution that the stent could move, but said it was "a very tight fit" so it was unlikely. Meeting him Tuesday AM and he suggested more bloods, but would have thought ultrasound to check all's well would be better bet.

Anyway, anyone with rash experience would be great to hear from.

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: "Borderline" Suitable for Op

Postby karen17 » Sun Aug 25, 2013 4:54 pm

Sarah...... no rash experience but just to let you know your email reached me and I pinged one back. Hope to hear from you soon xx