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Guidance/support
Daniella
25 Posts

Hi there, my dad was recently diagnosed with pancreatic cancer. He’s 63. I’m looking for any advice or guidance. We haven’t met with the oncologist yet.

The back story is that he has been loosing weight over the past year or so. We assumed it was because if his diet changes after becoming diabetic. November 2021 he suddenly became yellow. He had an ultrasound done the result is below.

Ultrasound

Pancreas: There is a 1.5 X 2.0 X 1.4 cm hypoechoic lesion at the

pancreatic head with no internal vascularity. Additionally at

the pancreatic tail, there is a 2.5 cm anechoic simple appearing

cyst which may be in keeping with a side branch IPN.

2. Marked significant volume of nonmobile sludge within the

gallbladder. There is intrahepatic and extrahepatic biliary duct

dilation.

3. There is a 2.0 cm hypoechoic mass like lesion within the

pancreatic body, suboptimally evaluated on today's exam. Further

evaluation with a CT abdomen pelvis with a dedicated pancreatic

protocol is recommended.

He was sent to a surgeon who did an endoscopy and put a stent in his bile duct and did a sweeping of his gallbladder. The yellowing cleared up within a few days his appetite returned and he gained a 3lbs back.

He was sent for a CT scan the first week of December which is below

CT scan

The mass described by ultrasound is not confidently identified on the arterial or portal venous phase component of this examination. There is a dominant cyst at the junction of the pancreatic body and tail that measures 3.0 x 2.4 cm cross- sectional dimension image 56 series 609. A thin septation is identified image 138 series 601. There is duct distention proximal and just beyond the pancreatic cyst but no definitive evidence of distal pancreatic duct distention prior to the pancreatic head.

He went back to the surgeon who offered him a Whipple procedure and told him with a Whipple and 6mths of chemo he could go on to live 10+ years. He did say there was a 10% chance that it could have spread.

He went in for the surgery last week the surgeon called and said it had been ended early as the tumour had spread to wrap around the hepatic artery and they were only able to remove his gallbladder. He told me that he has 6-12mths to live with chemo, less if he chooses not to do chemo. He said the hope is that the chemo will shrink the tumour and buy him some time. We asked if there was a chance it would shrink enough to allow him to be a candidate for surgery. He said they are open to it but it’s a slim 1-2% chance of that happening as this is extensive. I was surprised by that comment as the measurements seemed small to me and I thought it was a good sign that it’s not spread to other organs. Other good signs are that his appetite is better and he’s gained 4lbs since being home from surgery.

I’m hoping for some suggestions on questions to ask the oncology team or maybe if there is someone out there that has been through this and can give us some guidance. I’d love to hear any good news stories as well. I know this isn’t a community of doctors but connecting with people with common situations is so helpful.

Thank you for reading this and for any responses.

A few questions if anyone has experience with this… do we do genetic testing in Canada to see what chemo would work best? Do we have immune therapy? Also would a biopsy have been done? There was no mention that one was done. The ultrasound seemed promising and the ct scan couldn’t confidently identify anything so how with the naked eye during surgery did we jump to such a grim conclusion? Maybe a biopsy was done during the surgery and they just didn’t mention it? Sorry if I sound naïve I’m kinda clueless right now and grasping at straws.

Daniella

47 Replies
Brighty
8442 Posts

You are not naive @Daniella , you are a loving caring daughter who wants to do anything to help her father have the best chance at survival. Welcome. I do not personally have knowledge of pancreatic cancer but going to tag others who either have that diagnosis or are caring for loved ones who do. @Angsbird @Crys

@gcomputes @Marj99 @GWF may be able to share their experiences with you. As well the cancer info is well equipped to answer all the questions you have written down, which are great questions. I hope you get some more answers soon. How is your dad doing now? Glad to hear he got his appetite back and is eating. How are you coping? Do you have anyone to talk to or help you care for your dad?

Brighty
8442 Posts

@Daniella sorry just realized I forgot to give you the number of the cancer info line. 1888939 3333.

Carbla
24 Posts

Hi @Daniella I understand how easy it is to have confusion and questions. I was just diagnosed with a tumor on the head of my pancreas in September. I went through a biopsy as well as ct scans and an mri, also had a blood test CA19-9 which is the specific test for pancreatic tumor markers. I was fortunate to be quickly sent to my medical oncologist within 2 weeks of the discovery. He answered alot of questions and was alot more helpful then the surgeons. I'm not sure which province you are in but I am in Nova Scotia.

As far as I know there is no immune therapy for pancreatic cancer. my chemo is 2 different kinds Abraxcine and gemcitabine also referred to as UGIPGEMABR. I am having good success with this and feeling great but everyone is different.

Feel free to reach out.

Crys
40 Posts

I am sorry to hear of your fathers condition @Daniella. My father was diagnosed with stage IV metastatic advanced pancreatic cancer in January of 2021. His is also in the tail end of his pancreas but had spread to his liver when he was diagnosed. We are in Ontario.

We were fortunate to see an oncologist within one month of his first CT Scan. My father was treated at Credit Valley in Mississauga. From what I know his oncologist indicated that immunotherapy is not found to be as effective with the type of pancreatic cancer my father has so she opted to treat him with chemo - gemcitabine and abraxane. He started chemo in February and ended treatment in July. I am unsure about the genetic testing you mentioned.

We were told without treatment my dad would have 3-6 months to live. Chemo was rough on him as he has existing health conditions (heart, diabetes, pressure, cholesterol). Following chemo he has had problems with neuropathy. The one thing I have thought through this entire thing is that as long as he is capable everything has to be his decision when it comes to treatment.

Before my dad started chemo he had to get a biopsy done in order to confirm it was cancer.

I wish I could tell you what to ask but would Suggest to google “what questions should I ask the oncology team” - go to Canadian cancer society, pancreatic cancer Canada, wellspring for resources. There are so many questions to ask and it sounds like you have started asking some of the right ones already!

If you are trying to keep his weight up I suggest trying things like boost or ensure. My dad has one every morning with a bit of coffee and we try to give him another in the afternoon between smaller portions and meals. Always have snacks on hand and a huge variety of options for eating. If he opts to have chemo its Possible taste buds will change so recommend having Lots of food options on hand!

you are not naive at all - the best thing you can do is advocate within the medical system.

happy to chat more if I can be of any help!

Daniella
25 Posts

Hi @Brighty thank you for your response and kind words. Thank you for tagging people that can offer insight and providing the contact number.
my dad seems to be doing well. He’s eating well and moving around alright. He still has some pain from his incision.

I’m hanging in there. I’m thankful for places like this as I don‘t have much of a support system. My siblings and mom are finding it hard to have these kind of discussions. I’m just taking it a day at a time. Some days just a few mins at a time. I’m really trying to stay positive and hope for the best.

Thanks again.

Daniella
25 Posts

Hi @Carbla thank you for your response. I’m sorry to hear about your diagnosis but happy to hear you’re feeling great.

I have no idea if a biopsy was done but I sure hope so. It would make sense to have done it during surgery.

I was not aware of that blood test and will look into it.

What is your chemo schedule like?

Thank you again and I will definitely be in touch during this process. I appreciate your insight and hearing about your dad experience.

Daniella
25 Posts

Hi @Crys . Thank you for your response. I’m sorry to hear of your dads condition.

I have reached out to Wellspring. We are in Hamilton, Ontario. It is really comforting to speak to people who have also been touched by this disease although of course I wish we weren’t in this position.

I will definitely get some Ensure and Boost. We have been buying all the foods he loves and trying to get him to eat a little of everything. His appetite is up again which is great. I’ve heard about chemo effecting that. I remember years ago I had an uncle on chemo that said it made everything taste salty.

I will definitely be in touch and appreciate you sharing your experience.


Thanks again.

JustJan
1538 Posts

@Daniella because your dad had surgery, they likely took out a portion of the tumour to send for pathology. You can verify this with your dad’s surgeon to be sure. At the hospital where I worked, the results would take upwards of 3-4 weeks and sometimes longer depending on whether samples needed to be sent elsewhere for further testing.

I hope the oncologist will have information for you and can help answer your questions. Your dad is lucky to have you in his corner.

Keep reaching out and we will support you as much as we can.

Daniella
25 Posts

@JustJan thanks so much for your response and kind words.
Thats good to know I was hoping that was the case. I’ll check with the surgeon when we go back to have the staples removed if not I’ll follow up with the oncology team when we get an appointment. I had read online that during surgery biopsy results can come back within minutes that didn’t sound correct or like it would be accurate. I read a few horror stories. They were newspaper articles from a few years ago where people were told they had cancer and didn’t. One lady had half of her bowel removed. The hospitals response was that it happens. The material they have from a fine needle aspiration is often not enough and it is what it is. Crazy!

I really appreciate the support I have been receiving online. It’s been a comfort. I will definitely be reaching out!

Thanks again!

supersu
1098 Posts

@Daniella

good morning and welcome to this online community. you have found a wonderful place to ask questions and find out, 'right from the horses mouth’, (as my dear old dad would say), about this diagnosis that blindsided your family. no question too big, or too small.

you are not naive; you are, thankfully, unexperienced with this diagnosis.

I have direct experience with 2 people that I love be diagnosed with this crazy disease, (who ever even heard of a pancreas before???), and they each had a very very different cancer story.

it sounds like great news that the bile duct is open and functioning again, and that your dad is eating and moving around. my dear friend and I were able to enjoy taco nights after his diagnosis and surgery also! #nomnom

I will draw on my pals experience, and suggest that you get pain control folks involved sooner rather than later. it made a huge quality of life difference for my friend to be able to continue to work and keep active.

the unknown is really anxiety producing for the patient AND the family.
that is normal.

my advice from one daughter who's dad had pancreatic CA to another: just enjoy each other now.
it's so very hard for us to see our big strong dad in such a vulnerable position; I had some of the most meaningful moments of my life with my dad while he was sick…..even if it's only watching the food network together, (my dad's fave thing…..he would have gone bananas with Netflix - ha ha), time together really was the gift.

sending my best to you both
hugs
su


#welcomenewmembers #newdiagnosis #pancreaticcancer #caregiversareANGELSonearth #cancerisafamilyaffair

@Daniella so sorry that you find yourself here. Everyone has already given you a lot of great suggestions but as a fellow Ontario caregiver, just wanted to flag your hospital may have a patient portal where you can see/read all the test results and get some insights as to what they are testing and what’s going on with treatment plans. We get the results at the same time as the oncology team which helps us build our questions list for the next appointment. Would also take a moment to remind you to look after your own care/mental health. It is so very easy to lose yourself when you are throwing all that you have to help your loved one 💛

Carbla
24 Posts

Hi @ Daniella,

My chemo schedule is 1 week chemo 1 week off. As with everything else I know chemo schedules are different. Some people do 3 weeks chemo 1 week off. My suggestion for your dad and eating is to see if he would eat several small meals a day. There was a point where I would eat 8 times a day because it wasn't comfortable to eat much at once. Now I seem to eat 4 to 5 times a day as I can handle a bit more at a time.

My oncologist is doing a zoom presentation on January 29 called pancreatic cancer 101 it is an information session for caregivers and may be helpful for you. To sign up go to craigscause.ca and look for pancreatic cancer 101, it is a free session and may give you answers or give you alot more questions to ask. Your Dad is lucky to have you on his side just keep advocating for him and on top of the doctors.

It's a hard time for you all but I think the caregivers have a harder time then us patients. I know I have a hard time communicating what I need and my partner has a harder time watching my go through this. Go with the flow there will be bad days and good days and believe it or not great days. We go alot of places on the good and great days just to get out of the house and get some exercise. Thinking of you.

JustJan
1538 Posts

@Danielle there is a quick test they can do during surgery but and at the hospital it is only used in specific circumstances and is usually preplanned. It does not give the detailed information that is required for a full diagnosis and treatment plan.

I hope you will be able to get at least some questions answered by the surgeon. Some things may have to wait for oncologist to answer for you. There is a document that you can download from the cancer society with questions you may want to ask. Not all may be appropriate for your situation but many likely are. It can be found at this link:

https://cancer.ca/en/cancer-information/resources/publications/questions-to-ask

You may receive a lot of information. Don’t be afraid to ask for clarity. Doctor’s sometimes forget their patient’s don’t have a medical degree. Having a prepared list of questions will help focus the conversation and hopefully help you not miss anything.

Cynthia Mac
3871 Posts

@Daniella you are not naive, you’ve just been confronted with one of the steepest learning curves — one that is right up there with being a new parent, I expect!

I agree with the others, that they probably did a biopsy of your dad’s tumour while they were in there, and that it’s a good idea to formulate a list of questions to ask the next medical professionals you meet. And, I really love supersu‍ ‘s advice about just being with your dad. It can be hard to find the balance between advocating, caregiving, and plain old being a daughter.

As for diet, I often recommend “bulking up” food - adding things like butter and whey powder to soups, stews and smoothies, adding full cream to gravy and milkshakes, and cooking with cheese more, in addition to using the high cal drinks.

Please pop in when you can and let us know how you and he are doing.

JenG
110 Posts

@Daniella

Im sorry for the reason you have to be here, but here is a pretty great place to have access to.

I would also throw in that recording these first meetings is super helpful down the road, especially for the family not in the room.

And check out the first season of The Waiting Room podcast. Really great info there for you and you dad and the rest of the family to consider. They are short episodes and only 8 I think? I wish I had heard it before our cancer experience.

It sounds like you are taking the lead on caregiving, or coordinating maybe? Get help for you and for your dad before you think you need it. Anything from respite care for you or your family to personal care for him.

I’m sending warm fuzzy feelings your way.

Jen

Daniella
25 Posts

@supersu Thank you for the welcome and kind words I’ll definitely take your advice and spend some quality time with my dad. He loves Netflix! I’m really hoping the chemo works wonders and we can have lots more time and some kind of normalcy.

Thanks again

Daniella
25 Posts

@NickytheCanuck Thank you for your response and that fantastic idea! We were already signed up for pocket health but I wasn’t aware jurvinsk had a different portal. We got registered yesterday and are waiting on our activation pin. This will come in super handy if I need to look for a second opinion. I’ve been thinking about the whole self care thing and trying to come up with a plan. I exercise 7 days a week so that definitely helps.

Thanks again for reaching out.

Daniella
25 Posts

@Carbla Definitely great advice. Luckily he’s always been a bit of a grazer lol. He’s been eating smaller amounts more often recently instead of 3 meals and snacking.

Thanks so much for sharing! I’ll definitely tune into that!

This thing has just been hitting me in waves. Sometimes I feel positive especially after reading other peoples stories when I see that some of them have lasted 2-5 years and other days like today I wake up with a feeling of dread. My dad isn’t much of a talker and it breaks my heart to wonder what he’s thinking about.

Thanks for taking time out to chat with me ❤️ I hope you have continued success and more good/great days than not.

Daniella
25 Posts

@JustJan Thank you so much for the info! I will download the list and use the ones that fit best. Thursday will be 2 weeks and we haven’t heard from anyone yet. I hope we do and can get started on treatment asap!

Thanks again

Daniella
25 Posts

@Cynthia Mac Thank you for the advice. He loves butter! Making food calorie dense is a great idea.

We’re plugging along. He’s not saying too much. This whole thing hits me in waves. It’s best for me to keep moving and stay busy. Today I’m snowed in so it’s been me and my thoughts this morning!

This group has been amazing support I’m happy to have you all although preferably under better circumstances.

Thanks again.

Daniella
25 Posts

@JenG Thank you for the response and kind words. That’s a great idea. Especially since this is so overwhelming I don’t think we’re taking it all in. I love podcasts typically true crime but I’ll check this one out for sure.

I’m definitely taking the lead my older sister isn’t really a good fit for this and my brothers can’t handle it. My moms really trying but ends up crying. After almost 43 years of marriage she’s struggling for sure.

Thank you ❤️

Thank you for sharing @Carbla about that upcoming webinar.

Wishing you all the best,

Lacey

Daniella
25 Posts

Het there, I was able to look up some results. Does anyone know what this means? I know we’re not doctors but google is no help.

CLINICAL HISTORY
CBD stricture - ? malignant.
DIAGNOSIS
Atypical
Satisfactory for evaluation
Reactive ductal cells and rare cluster of atypical degenerated epithelial cells.

This is from when he had the stent put in and the gallbladder sweeping. Was there cancer cells in the debris swept out of his gallbladder? I wish they would use plain English.

also the discharge report said:

Unfortunately, at the time of surgery,
the pancreatic head mass was deemed unresectable due to complete encasement of the common
hepatic artery.

the words “complete encasement“ really hit me. When the surgeon said wrapped around I guess I was hoping it wasn’t completely around. I suppose this is why he said shrinking enough to allow for surgery is slim.

at least I know they did a biopsy now though.

Is it ok to share results on here? I’m hoping to find someone that’s had experience with this.

Thanks so much you guys are beyond awesome.

Jeff75
17 Posts

Your fathers story sounds similar in some ways to my mother in how it has presented/developed. Unfortunately for her, she was never able to get strong enough for chemo after first being told she could have the Whipple and then being told she could not as it had spread. The only thing I can really provide any thoughts on is pain management. She was in a lot of pain and the pain killers only helped minimally. She was able to take part in a radiation “trial” that involved just 1 ultra strong dose of radiation instead of several radiation treatments spread out over time. Although it did not do anything for the cancer/tumor (and they told us from the start there was only a small chance of that happening) it did wonders for her pain level and that was the goal of the trial.. From an average level of pain of 8 to 10 out of 10 on a pain scale, it was down to a consistent 2. She passed away a few months later but was at least mostly pain free despite all the other issues that come with this horrible cancer and that gave her and the rest of the family quite a bit of comfort. So if the pain for your father is bad enough, you can always ask the medical team if there are any similar trials underway.

Hi @Daniella

Thanks for sharing with us. Cancer can feel like a whole new language and medical reports are so difficult to interpret.

Do you have a follow up appointment coming up where they can go over the results with you? The Doctor is really the only one who can speak to the results. I would hate for you to get the wrong information.

I hope you get answers asap,

Lacey

Daniella
25 Posts

@Jeff75 Thank you for the response. I’m so sorry to hear about your mom. I will keep this all in mind. Thank you for sharing your experience.

Daniella
25 Posts

Hi @Lacey_Moderator thank you for the response. My dad was in to have his staples removed and was told it would be another 2-3 weeks before he can see an oncologist. 1 in every 5 health care workers are off with covid. oh I completely understand none of us are doctors and anything I read or hear online would have to be checked with a doctor. Everyone is also different what works for one doesn’t for another. I’m just always hoping to find someone in a similar situation that has some insight. I mean of course I don’t want to find anyone in this situation but this seems like the place where we all meet 😉

melibra08
4 Posts

Hey Daniella!

So sorry to hear about your fathers diagnosis. Never easy to digest something like this. Id say your in the right place for support and some insight. It's been very helpful to me. My mom was diagnosed with a recurrence of pancreatic cancer in December 2021. She was lucky enough to start treatment less then a month after diagnosis. As of right now my moms mass is localized but to close to a vessel for surgery. So chemo right now and see how she does.

Some advice I have is, don't settle on one opinion on surgery. Get a second opinion. You never know how he will react to chemo, it may shrink enough to make surgery an option. The other thing is of course the health care system is overwhelmed at the moment but I would still suggest touching base with whomever is referring your dad for treatment. Sometimes things get misplaced or put aside so its good to follow up until you get a referral.

Its great that he has an appetite! Stay positive and hopeful, it really makes a difference. One day at a time!!!

Feel free to reach out if you have any questions!

Melissa

Daniella
25 Posts

Hi @melibra08 thank you for the response I’m sorry to hear about your mom.

I will definitely look into a second opinion at a different hospital probably one in the GTA.

I will definitely be in touch with questions. This site has been so helpful.

Thanks again

Daniella
25 Posts

It’s been confirmed my dad has Pancreatic ductal adenocarcinoma. Were meeting with the oncologist on the 31st.

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