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Diagnosed 12 days ago

Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 22, 2020 4:37 pm

I am 50, live on Vancouver Island, was diagnosed as having pancreatic cancer (stage unknown) at this point after ultrasound and CT Scan.  It was only found as I have a gallbladder that needs to come out due to stones and therefore had the ultrasound after a few months of huge acid indigestion and minor stomach pain issues.  Have been told it is at 2 cm.  My GP immediately (same day as scan) referred me to a surgeon in Vancouver.  Have not spoken to him yet as the surgeon ordered 1 more scan of my lungs to see if it's spread and another blood test (shows nothing).  Have my chest scan this coming monday.  In the mean time I am in quite a lot of pain unfortunately likely due to the gallbladder (Dr unsure if all the pain is associated with that but I feel strongly it is).  The bloody waiting for something to happen is killing me - just want to get things started.  My very loving husband and I are devasted but still in the numb stage.  Anyone feel the same frustration until chemo/surgery happens?  I just want the d*** gallbladder out at this stage but if I qualify for surgery they don't want to go in twice.

Re: Diagnosed 12 days ago

Posted by Runner Girl on Jul 22, 2020 4:59 pm

Hello islandgirl2020‍ ,

I am sorry for what brings you here.  Yes, the waiting is the hardest part.  It is only a few days until the scan requested by the doctor.  They need a good picture of what is going on before they can proceed with a plan for surgery, chemo and/or radiation.  

My breast lump was first found at the end of March, 2018, after a mammogram, ultrasound and biopsy I finally had the answer on May 7, 2018.  After that things happened really fast.  I met my surgeon on the 15th and had my lumpectomy on the 23rd.  Then there was the wait to heal enough to start chemo.  After chemo there was the wait to start radiation.  

I want to tell you to try to be patient, but I've been there, I know it's really, really hard to do that right now.  I suggest you get a notebook and you and your husband sit down and make a list of all the questions that come to mind that you'd like to ask the doctor.  When you have the actual appointment it will be hard to recall everything you wanted to ask.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Diagnosed 12 days ago

Posted by Laika57 on Jul 22, 2020 5:10 pm

I hear ya. Hubby had abdominal pain for months, was "diagnosed" with a uti, then they thought maybe c diff, then they figured maybe to schedule an ultrasound. While waiting for that, he started turning yellow, so I took him to the ER. 
there they found a mass obstructing his bile duct, installed a stent and sent him home to wait for biopsy results. 2 weeks later, yup, it's pancreatic cancer, another two weeks later, the surgeon says he wants another scan, another week later, someone prescribed him morphine for the pain, which was followed by a month of delirium. During which they did nothing about the cancer. Then, a quick scan and hurriedly booked appointment with the surgeon, by then the cancer had grown and wasn't operable anymore, wait for chemo....
that actually happened pretty quickly....

anyhow, if it's *only* 2cm and your ca 19-9 numbers are reasonable, you should be a candidate for the whipple procedure. If the gallbladder has to come out, then you'll probably get it done before the chemo. 
The wait for the surgery with us was 2 weeks I think. They had scheduled it pretty much 4 days from when the oncologist gave the go ahead, but he ended up in hospital for an infection, and that caused another delay...
once the surgeon has his scan, you can expect things to move pretty quickly from there on.
this is the time to make arrangements and note down your wishes "just in case". If you are prescribed heavy duty pain meds, ask your husband to keep an eye out for odd behaviour and hallucinations. And see a doctor about it right away if it happens.
good luck. Sounds like they caught it early 🤞
for now, be extra careful not to get the drat virus. That will disqualify you from any surgery...
Have you hugged your dog today?

Re: Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 22, 2020 5:47 pm

Thank you for your responses.  I immediately got my legal affairs in order (already had them in order, just had to reassure myself) and have spent every day since planning for the unknown, stocking up on groceries, tying up loose ends.  I am a very practical person so that was a given.  Even all the weeds are gone from my flower beds...just hate the waiting.  I do feel like my GP moved fast - but during Covid I didn't push it and he didn't feel heartburn warranted an ultrasound.  d*** covid is making everything so difficult, including the fact that my husband can't come to the hospital with me or see me there should I have surgery.  I am just hoping a recent spike in cases in our province doesn't jeopardize or set back any treatment options.  

Re: Diagnosed 12 days ago

Posted by Cynthia Mac on Jul 25, 2020 9:25 am

Hi, islandgirl2020‍ , welcome to the site, however, I am sorry to hear about your circumstance.

I just wanted to pop by and commend you for your practical approach. It sounds as though you’re doing everything you need to be ready for your surgery or treatment.

As Runner Girl‍ Said, the waiting really is one of the hardest parts of the process. I was my Dad’s caregiver during his lung cancer, and things really DID shift into high gear once the doctors had enough information to form a plan!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Diagnosed 12 days ago

Posted by Dodi on Jul 26, 2020 9:53 am

Hi Islandgirl2020
so sorry to hear your diagnosis and about your frustration. I have been wading  through the diagnostic Process for a few months... I keep being put “ on hold” for a lack of better words. I have had test run, sent photos of changes into my clinician, triaged by. Doctor at the Breast Health Department in Halifax but no one has seen me up there other than ordering another mammogram. Now 6 week wait if the want to see me. And if I am not of a huge “ risk” or concern but they will see me, it’s a 9+ month wait. And I know the report went out the Monday / Tuesday after the last mammogram. But no clinician available to review and release my results. So.... islandgirl2020, be your biggest advocate; aside from that amazing husband you have. This group is amazing, you are not alone in being frustrated. I would put money on it that there are so many who have felt it at one point. Sending you a big hug! 

Re: Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 26, 2020 12:09 pm

Thank you - once I got my 2nd CT scan date (monday) I sent an email to the surgeons assistant to set up a telephone appointment very shortly after that (he is in Vancouver, we are on the Island) so by Wednesday I should have a whole lot of answers and an action plan hopefully.  Yesterday I told myself I wouldn't cry all day (I cry easily) and almost accomplished it, only one tear escaped.I am trying to be optimistic but that is so bloody hard.

Re: Diagnosed 12 days ago

Posted by Shawrett on Jul 27, 2020 7:13 am

Hi: I’m sorry to hear of your diagnosis. Last August I was diagnosed with Pancreatic cancer and it took awhile for the surgery. Mine took an extra 4 months because they cut my main artery while doing a scope and I had to have surgery to fix the artery. I then need time to recovery from that.  I had the Whipple in November and chemo started in January.  It is tough for the waiting and this virus isn’t helping your cause at all.

If you have the Whipple they will take your gall bladder at that time which might be what they are thinking.  It is a long surgery about 8-10 hours as there is a lot of reconstruction happening.  I’m doing well but my eating has changed and I’m still adjusting that all the time.  My cancer has moved into the liver unfortunately but they are looking at changing the chemo for that. I have 3 spots they are concerned about.

I hope you get your answers soon and feel free to ask any questions you like. I’m not an expert but I’m going through it as well so it might help you.

Jo

Re: Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 27, 2020 3:15 pm

Thank you Jo, as for diet changes after the whipple what were they?  I am already eating a super bland diet because of the gallstone issue so am pretty sure I have those bases covered but all the same I would like to ask (do you get hearburn/bile issues?)  I just got back from my ct scan (hospital 5 min from my house) and my GP just called me and said he doesn't see anything on the chest CT scan so all fingers and toes crossed the surgeon on Wednesday proceeds quickly.  I frankly don't know where my tumor is in my pancreas, the whipple hasn't been mentioned but surgery has so will ask Wednesday.  Thinking the whipple/surgery are the same but thought the whipple was only when the tumor is in the upper pancreas.  I appreciate you reaching out.  It is a long and scary journey we both are on now.  How long did it take for you to heal up after surgery?  Were you able to walk around after a few days?

Re: Diagnosed 12 days ago

Posted by Shawrett on Jul 27, 2020 8:33 pm

Hi
My diet has changed to more vegetarian. I can eat eggs and a bit of cheese. Ice cream is out and red meat. I’m ok with it because I didn’t eat much meat anyway. I have to have smaller portions and I now take a digestive enzyme before each meal or snack.  

My tumour was in the bile duct so they decided to do the whipple and take pieces of the other organs. I was up walking the next day with a walker. I went home on day 5 with some drainage tubes which came out 2 weeks after.  Most people are in the hospital for 10-14 days but because of my healthy lifestyle I was able to go home early. 

Mine has now gone to my liver but they said it could have already been there just to small to tell. Just changed chemo today to get the liver under control. I’m hopeful that this will work. Let me know how you make out.

Jo

Re: Diagnosed 12 days ago

Posted by Samiam on Jul 28, 2020 11:03 am

islandgirl2020‍  so sorry to hear of your diagnosis but glad the gallbladder issue uncovered it so it could be addressed. 
Waiting was the hardest part, it stops your world but everything else keeps going while you try to be positive with minimal information. But it's a part of the process and for me it gave me a chance to process the diagnosis, possible scenarios and to come to terms with the possible treatments.  I also googled, many on here tell you not to as it  can cause more worry than necessary and everyone's journey is different. My cancer is rare so it was hard to find much but most was of worse case scenario. Like you my cancer was found due to a different issue. And in my case much earlier than it would have been otherwise. 
Glad you have the support of your spouse, for me the family support made a huge difference. 
Wishing you all the best on your next scan. Praying for the best possible outcome.
take care and stay safe. Reach out any time.
ps you live in a gorgeous place, I was there last summer for work. 

Re: Diagnosed 12 days ago

Posted by Laika57 on Jul 29, 2020 8:13 pm

islandgirl2020‍ hope you had "good" news today. 

With us, the surgeon had a better "grasp" of the CT than the gastroenterologist. What the gastro deemed inoperable, the surgeon said was easy peasy. He is confident like that.

hubby is 8 weeks post whipple. No real issues with the surgery part apart from the infections and delirium.
A lot of the outcome depends on the skill and experience of the surgeon. So you're better off asking to have the surgery done at a hospital that does them routinely. (Which it sounds like you are.)
here is the info we were given. Other hospitals may have slightly different procedures, but i felt this is very well explained.

http://whipplepathway.ca
Have you hugged your dog today?

Re: Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 30, 2020 10:28 am

So my chest xray is clear for anything they can see on CT scan (surgeon said they may see different things when they go in but for now this is good news).  It is not the whipple surgery I am having as my tumor is in the head and neck of the pancreas so different area.  It is resectable so they will take a portion of my pancreas out with the tumor, they also may take my spleen as it shares the same veins and blood so I need to have some vaccinations asap and then they will take my gallbladder as I have stones which is how the tumor was found.  It will all happen in Vancouver at one of the best hospitals in the country with one of the best surgeons.  Then afterwards chemo.  One day at a time now - except more waiting.  Now to find out exact date of surgery (2 weeks likely away).  The tumor is not near any other veins so that is good news as well.  I will be in hospital for about a week as they keep you in to make sure the pancreas doesn't leak afterwards.  Thanking God for our healthcare system which seems to be moving quickly here and costs me nothing except for drugs that may be required.  Also thankful for a dedicated medical team as surgeon was supposed to contact me between 2 and 5 yesterday and we heard nothing.  I sent a message to his assistant a few minutes before 5 and heard back at 5:40 that the surgeon was tied up but I would still hear from him which I did at 6:40.  Apparently he became a surgeon as his dad had a successful liver transplant 30 years ago and is still alive.  You want someone like that on your team.

Re: Diagnosed 12 days ago

Posted by Wendy Tea on Jul 30, 2020 10:44 am

islandgirl2020‍  That is great news!  I am so glad you are on this side of the water for surgery. We have a great medical system.  It is great they are doing everything all at once and they are keeping you in for a week for observation.  Are you able to use this time to get your home ready before surgery?  Do some freezer meals? Make sure you have enough pillows for comfort?  Line up a team of friends and family for help and errands when you get home? I found it was important to have people ready to pick up fresh fruit, magazines,  and icecream which is a food group!  
Healing takes time and opportunity. Wendy Tea

Re: Diagnosed 12 days ago

Posted by islandgirl2020 on Jul 30, 2020 11:17 am

Yes, I have a family team to help me when I get home.  My Mom is 77 and healthy and lives 2 blocks away, and we own our own company so hubby works from home and our clients are long-term so will understand shifts in schedule (consulting) as hubby takes care of me.  I haven't been able to eat most fruit or ice cream due to the d*** gallbladder stones wreaking havoc therefore if I can eat those it would be a blessing.  Yes, a lot of prep has already taken place as I am a planner but I still have a big list of things I want to do before surgery.  A date would be good though, then I would be able to arrange our dog care as hubby will spend the first 2 nights in a hotel so he can be with me when I am awake after surgery.  He will then likely go home (ferry and drive = 5 hours each way) until I get out and come back to get me. I am hoping to be able to fulfill at least a five year plan when surgery is finished - I think little goals and big goals are important.  I likely will be in the bloody hospital for my 51st birthday mid August though

Re: Diagnosed 12 days ago

Posted by Laika57 on Jul 30, 2020 3:06 pm

Sounds like you're in good hands :) 

with us the scheduling was weird. We got a message saying he had to show up for the covid test the next day (friday) or surgery on tuesday wouldn't proceed. then they called us back saying sorry, the hospital administration hadn't gotten around to approving the surgery and they'd get back to us.
he had surgery a week later. So, it can actually happen pretty quickly...

good luck! And if all goes well, that birthday will definitely be something to celebrate...
Have you hugged your dog today?