Just diagnosed with pancreatic cancer --and terrified about the future

[Picara14]

Hi everyone, here's my story:

This Tuesday, I went to my doctor, expecting to be told I had gallstones, and instead heard I have either pancreatic or bile duct cancer. Since I work in China, I was advised to fly home early for Christmas and get a confirmed diagnosis and start treatment, which I did. I came out of hospital yesterday with a biliary duct stent, and confirmation that I have a 2.7 cm locally advanced pancreatic cancer which can't be operated on since it's too close to the blood vessels.

I've been struggling to take in the news, and it's terrifying. I've can't talk about this without crying and feeling close to a panic attack and have needed sleeping pills every night. I'm 39, healthy otherwise and with no family history of cancer, and now I hear that it's not just cancer but one of the worst kinds? I've tried not to look at things like mortality rates, etc. online, but the little I know scares the hell out of me  --there's no hope for a cure unless the chemo shrinks my tumor enough, and my doctor made this sound unlikely. How can I go from having a life I love -a job I really love in a big city with good friends and colleagues- to having less than 5 years to live? I am really struggling to cope with this question and would rather die right not if I didn't have my family.

I have a staging laparoscopy on Tuesday and will start chemo in early January. Maybe things will feel less uncertain once I start treatment, but at the moment it's really hard to keep my mind off worst-case scenarios.

[sch]

Hi Picara14,

I'm very sorry to hear of your diagnosis.

It's a tough time of year to get a diagnosis. Lots of people are away on holidays and people are usually celebrating, and don't really want to hear this sort of news. I hope you are finding support.

The diagnosis can be quite a shock, especially if you haven't had to worry about health issues before.

You'll find a few of us on here are about 40, with quite a few some what younger than that.

I try not to worry too much about the statistics. I've had one or two major health issues before. That doesn't make the shock of cancer any less, but it does mean I'm a bit more wizened when it comes to emotionally dealing with shock.

Sounds like things are happening quickly.

Has your treatment team helped you understand what stage the cancer might be yet?

Don't stress out too much about the statistics. They are just that. Numbers.

I can't promise you that everything will be OK. But I can promise you that if you fight with everything you've got, you won't regret it.

The human spirit can achieve amazing things, including proving statistics wrong some times.

You can do this.

-sch

[kj]

Picara14

I agree totally with sch , I have read where in some cases chemo can shrink the tumor enough ,so that surgery can performed ,it is devastating to be diagnosed,a good oncologist can help,mine was telling me this year they use a another chemo combination in the treatment,I was at a Pancreatic Cancer fundraiser walk this year organised by the Avner foundation in Melbourne ,where one of the speakers was a specialist doctor treating a stage 4 patient with a different protocol,they we’re having promising results treating her.

Yes at the beginning all the feelings you describe happen to you,that’s a normal occurrence,but then it’s time to process and start to research all available options that you may or may not have,make a list of questions you have as it’s very hard to remember all you want to ask the doctor or oncologist knowledge can help you make informed decisions ,very sorry for your diagnosis,I do remember leaving hospital after having the stent inserted.

Where there is life there is hope.

[Picara14]

Thanks, sch and kj --your advice is really encouraging, and I see how breaking it down like this helps people cope and adjust. I've been feeling a bit better today, but it'll be up and down a lot, I imagine.

I like the suggestion about writing everything down. So much gets thrown at you in diagnosis it's been hard to keep track of it all and remember what's real vs what you've just imagined!

No stage diagnosis yet --I had a PET scan today and go for a staging laparoscopy tomorrow. I told my doctor not to tell me the PET results until after Christmas, so I can put this aside for a while and just enjoy being with family.

[kj]

I like your thinking on not getting the results until after Christmas and enjoying family time together,yes you will be up and down, but it’s how you respond that matters,good luck with your results.

[CaptainAustrali]

As someone who has been through it, I can sympathise.  Those first days and weeks are overwhelming.

My advice is to be pretty militant about preserving your overall mental health.  Compartmentalise those parts of your life that are within & outside your control, you know ?   The cancer diagnostics .. that's outside your control, just have to wait on the information and make good decisions regarding treatment.

For every cancer type, there are folks who defy the stats, and survive long term - maybe that's you. 

You can't know.  You can't control it.  You can only move forward.  The anxiety, sleeplessness, feeling untethered - all of that stuff, your overall mental health - that is somewhat within your control, and I'd urge you to reach out and take charge of it.

5 years, that's actually a great starting point, because - if you can be confident that you have at least that long - it's not tomorrow or next week.  I had six months  (this was three years ago).  Three young kids, one of whom is autistic and depends on me.  Horrible, gut-wrenching stuff.  But I got through it, and you can too.  

There are new techniques in fighting cancer, and a shift toward immunotherapy and DNA remediation (where the therapies are designed toward making the cancer visible to your natural immune system - which typically ignores cancer cells as a mutation - and therapies to supercharge your immune system once it can see the cancer).   In the next five years, some of those therapies may become available to you.

All you can do is get the best medical advice available, and make choices and plans on that basis.

But you're alive.  There's hope.  You need to find some kind of anchor inside yourself, reach for that hope and hold it as close as possible for as long as possible.

I think a key part to fighting cancer is finding and maintaining a mental outlook that best fits your situation and personality.  You might see yourself as a fighter, or you may prefer to blockade as much of the cancer stuff as you can from your day-to-day life.  You may rely on friends and family to boost you up and get you through.  Whatever your anchor is, I urge you to search for it.  I'm sorry .. but you're going to need it.

Best of luck in this fight.  Cancer is ridiculous, horrible, but it's not necessarily the end.

[Picara14]

Thanks,  CaptainAustralia. It's encouraging to hear from someone who has beaten the odds and defied doctors' predictions. I hope I'm able to do the same thing --I'm ready and willing to fight,  but I go for biopsy results on Tuesday and Thursday and am dreading to hear that it's a fight I can't win. 

I've been able to enjoy Christmas with my family and have generally been doing better about being strong since coming out of hospital on Christmas Eve.  However,  I still get overwhelmed with despair and panic and have spells of uncontrollable crying and hopelessness. I've been feeling even worse since last week,  when I was told they found a lump in my sinuses that might be cancerous...that's got me convinced that the cancer has spread and that Tuesday's stage diagnosis is going to be the worst possible news. Last night I ended up at the emergency room getting a Valium prescription, because I felt like I just couldn't cope anymore. 

This still doesn't feel real at times,  and at other times it feels like it's already the end.  Hopefully I will feel better able to cope once I have the stage diagnosis...

[CaptainAustrali]

I think the not knowing, and the waiting to know - those are the hardest parts.

I was quite sure the cancer had metastasized throughout my body and that I was a goner - but it turns out it hadn't.  It was in the local lymph nodes but luckily had not progressed further.

Just now I've been convinced the cancer has come back, because I have these neck & face cramps and spasms, and these odd lumps, as well as a little pea sized nodule under my jaw.  I was certain it's cancer.  The nodule is apparently scar tissue from my submandibular salivary gland which suffered damage from the radiation, and all the lumps and swelling are underperforming lymph nodes (also due to radiation damage).

Self diagnosis doesn't help, because I think that people tend to take the grimmest outlook - best to not think about it until you know.  I think it's a handy skill to compartmentalise - put cancer in a little box in your mind, and only pull it out and look at it when it's productive to do so (like when you are armed with the proper clinical info from your doctors).  In any case, sorry things are so hard - I hope that the cancer is treatable and that 2020 is a good year, a year of treatment and recovery, with many more to follow after it.  Best of luck.

[Picara14]

Sorry it's taken me a while to reply,  and especially to thank Captain Australia for their wise and kind advice. The last week has been a blur --got my diagnosis last Tuesday and Thursday, then had the PICC line installed and had a full day of chemo today. 

The diagnosis is relatively good --the cancer hasn't spread beyond the pancreas and the mass in my nose is most likely benign --one ENT doctor suggested retesting (with the lovely comments that it "looks and smells like cancer") but it was vetoed by her boss.  I specifically asked the doctor not to tell me the stage or prognosis yet,  but it doesn't sound like its advanced much beyond stage ii. Furthermore,  it's been diagnosed as "borderline resectable " after successful chemo/radiation and they've lined up a consultation  with a surgeon for me in early Feb. 

It's a big relief,  although I know the fight hasn't been won yet.  And with the rotten nausea and cold sensitivity I've had with Folfirinox in session1 I know it'll be tough.  But now I feel slightly optimistic about the future... 

[Lolie]

I'm glad you're feeling a little more hopeful about the future, Picara.

A couple of us have started our chemo now and while it all feels like a surreal blur in some ways, I'm astonished at how quickly I've adapted to a new normal.

Just having a path and starting on it has helped my peace of mind enormously. Ironically, I wouldn't have started treatment yet had I not become seriously ill and been hospitalised two weeks ago.