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Starting an adventure
Flynxdart
7 Posts
Hello everyone.
Found out via an upper endoscopy that I have a tumour (adenocarcinoma) just above the stomach in my esophagus. Have completed chemo, radiation and most surgery prerequisites. Treatment begins next week.

I am a fairly active male, in my late ‘60’s, married to a wonderfully supportive woman and we have kids living a long way away. Not too concerned about the chemo or radiation, bit the surgery is pretty intimidating. To be honest, this was a nasty surprise…and I’m wrestling with the re-direct on what would have been a great summer. I am tackling this like all our prior ‘diversions from plan’, but suggestions on how to prepare for this adventure would be helpful. Thanks in advance! 😁
34 Replies
Brighty
8442 Posts
Flynxdart‍ so sorry for what brings you here. I like your positivity. The best way I can think of to prepare for this is to keep your weight up and strength up..keep eating and exercising. Get calories into you. The oncology dietitian would be a good person to seek advice from in terms of diet. How is your swallowing? My fiance had esophageal cancer so feel free to contact me. We also have a new member you can connect with. Bobert‍ just logged on the site not long ago so I hope you can connect. We are all here to support you if you have any questions or need anything.
Flynxdart
7 Posts
Brighty‍ , thanks for the encouragement! Yes, I’m connected to a cancer centre dietician, and am on track re weight management while keeping glucose levels inside my boundaries. Doing well so far with the physical stuff and leaning into the advice I’m receiving to make the best of it!

Brighty
8442 Posts

Glad you are already connected with the dietician Flynxdart‍ !!! Keep me posted on how you are doing.!!! Maybe you can also connect with Arby1‍ .

Arby1
8 Posts

Hi @Flynxdart I had a gastroesophagectomy back in mid-March following five weeks of radiation and chemotherapy. Mine has been mostly a happy story. I'd be glad to share my experiences if you think they'd be of use. I'm a similar age to you.

Boby1511
1037 Posts

@Flynxdart

Hi there,

You sound wonderfully positive! That is great and will serve you well.

Luv the pics too! I just went kayaking last week! And I'm stage 4 adenosarcoma!

No more similarities I'm afraid.

Sending you best wishes as you begin your treatments.

Flynxdart
7 Posts
Boby1511‍ Good for you for venturing out on the water! You likely find it as restful as I do, although I am relatively new to the sport. Number of times out over the past 1.5y is less than 10 trips…all river flat water except one into the waves of Georgian Bay (fun!).

Most of my life Ive been able to spend summers coastal and offshore sailing on the Great Lakes, mostly competitive stuff. This summer’s ‘diversion’ has not sat well with me, but its great to connect more with my kids, who are making every effort to support my wife and I.

Thanks for your encouragement! Wishing you a great Canada Day!
F
Bobert
28 Posts

@Flynxdart - sorry for the reason you have joined this group! I too have adenocarcinoma and am starting chemo next Thursday. Mine is stage four so they are not looking at radiation at this time but it sounds like we have a lot in common! I too am in my sixties, have a wonderful, supportive wife and two kids who are all impacted by this but trying to help keep my spirits up! I'm still walking the dog three times per day, golfing and working hard to keep my weight on. @Brighty is a wonderful contact to have and if I can provide any information or support, please reach out! This is tough but support and discussion helps!

Bobert
28 Posts

Hi @Boby1511! I just saw your post and see that you are stage 4 adenosarcomew. I just found out this week that this is my diagnosis and that I start chemo on July 8th. You sound like a positive kind of person - I'm not a kayaker but love to be out on the golf course. If you have any tips I'd love to hear them! So far I've had four weeks of bad news and looking for something on the good side!!! I'll share any good stuff with you!! All the best - enjoy Canada Day however you celebrate it!

Boby1511
1037 Posts
Flynxdart
hi there!
lol. I’ll confess only went kayaking this year! Twice on a calm shallow lake. Was still fun! Have done the white water rafting thou a few times and would again.
sailing sounds like great fun! You’ll be out there again!

@Flynxdart and @Arby1 I hope you to are able to connect it sounds like you have some similarities.

Flynxdart
7 Posts

(sorry for the delayed reply, I am still getting used to how this messaging system works)

Thank you for sharing your journey so far. Your path is virtually identical to mine (including the 23/5 treatment plan) except I’m working with the Durham Regional Cancer Centre in Oshawa, ON and it’s affiliated network of hospitals.

Like you, my consult with my thoracic surgeon was not “confidence-building”. The scenarios he presented were quite disturbing, but I realized from prior experience that its their obligation to lay out the risks. Further discussions with the radiation and chemo Drs made it clear that surgery is a viable option and a necessary part of the treatment plan. As the Radiation dr said…”given the choice between the pretreatment and the surgery, if I had to drop one, I would opt for Surgery”. I have full confidence in the surgery team at the hospital, from anecdotal patient statements, and from the fact that this type of surgery is fairly common.

Im being diligent in following what the medical team is recommending as pre-requisites to the surgery (maintain/improve fitness), and have been successful in keeping weight on so far.

I have frequent days where my anxiety level is pretty high, and it feels like time has become the most important commodity. Our son has come home for a visit from Maple Ridge BC, and is working toward getting a transfer back home. He and our daughter (who lives 2.5h away bit is also visiting with us) have had a good connection after many years of living separate lives as we all face this together.

My pre-surgery treatment begins this week, so Im going through a checklist of personal care items (including a chemo-haircut 😳) and other tasks, so it’s getting quite “real” now.

The surgery is what worries me the most, and that the tumour continues to progress at the cellular level all the time. However, being an optimist and somewhat pragmatic, at this point, “Onward”!

Thanks for sharing. It helps.

Oceanmara
9 Posts

Hello everyone. I just got back from the specialist dr. They think they found a mass in my esophagus. I was having very intermittent swallowing issues. 6 months between episodes. Food would every once in a while get stuck. Mostly boiled egg. So had an upper GI done. Took 4 months for a follow up. Can’t even talk to my family health team. have a call back booked for October 14. Now I am waiting for a endoscopy. End of October. Two boys 14 and 12. I am scared and mostly feel alone. I don’t want to scare my family. Any advice? Thanks.

Runner Girl
2730 Posts

Hello and welcome @Oceanmara

I'd like to introduce you to @Brighty and @CDN Traveller both of whom have experience with esophageal cancer.

Runner Girl

Brighty
8442 Posts

Hi @Oceanmara nice to meet you,although I wish under better circumstances. I pray for you it does not turn out to be cancer, but if it does,just know we are here for you. I took care of my fiance who had esophgeal cancer so I will be here to give you tips,guide you through and be by your side. In the meantime I would suggest finding foods that are easy for you to digest ,cream soups, smoothies, adding tons of mayo to tuna, boost and ensure, add protein powder for extra calories to your food ,pudding,apple sauce,even baby food. . ……the dietician will he able to give you other suggestions . Do you find you are losing a lot of weight? Do you have a support system? Someone to talk to about your fears? Pethaps a close friend? Msybe even a religious leader. The oncology social workers a great person to talk to. You will also find kindness and help from the cancer info line if you need a live voice to talk to on the phone. 1888 939 3333. Try to keep yourself busy and disracted until your appointment. Do thingsyou love ,try to keep your routine normal, clean closets, go for walks, watch funny and trashy tv..TLC is good for that. …treat yourself to a manicure…be good to yourself. Let us know when you find out more information and we will be here to guide you through. YYou aren't alone. Thanks for tagging @Runner Girl !

Whitelilies
2272 Posts

@Oceanmara Hello and welcome to our caring community….I am sorry, for your reason to join us here; but glad you did. You have found a group of folks, eager to listen and share experiences, and support one another. Have a look through the site….there is a lot of helpful information. I will start you off, with a link below…..you can see/read of others' experiences, similar to yours, and reach out/tag any member, if you wish to. To tag/reach someone….please type “@”screen name…a few will drop down; tap at name you wish and it turns blue….they will receive notification, that there is a post/message for them.

When is your surgery scheduled?

You asked for ideas, on getting through the Adventure??? Positive attitude (you got it!)…ask questions…write down answers….advocate for yourself….learn a bit about “your” cancer…..not by Dr Google….but reputable sites only…..perhaps pamplets at your hospital etc…..eating; may become a “new adventure”…..perhaps ask the dietician at your hospital for food ideas, what is easiest for you and healthiest….walk/nature, is healing……enjoy family time…..and most importantly: Wash Your Car !! (And Laughter…..is best too!)

Keep sharing here…we are listening….

Welcome again

Whitelilies

#EsophagealCancer

Oceanmara
9 Posts

Thanks everyone. I am still in shock. I didn’t see this coming. I saw the doctor last fall about a very occasional swallowing issue. I had a barium swallow in April. The Doctor just followed up on that. That’s when he mentioned the mass. I have another month before an endoscopy. I am very scared. Is that a long timeline? Symptoms seem to be progressing. More acid and burbling. No caught food though. What were other people’s experience with symptom progress, and diagnosis?

Brighty
8442 Posts

@Oceanmara …my fiance's symptoms were hiccups,heartburn, regergitating of food, vomitting ,pain swallowing. He had these symptoms for months before i could even get him to see a doctor. Once he finally all did, things moved along….but there was no covid in the mix then. Everthing seemed to be in 2week intervals…. Endoscopy /biopsy….then 2 weeks for results. ….started treatment 2 weeks after that…..treatment was 5 weeks radiatin plus chemo once per week. Then a 4 month gap then surgery. But everyones timeline and treatment regiments are different so yours might be an ok time line for your situation. However if you feel it's too long a wait and your symptoms are worsening, call and see if there's a cancellation . Sometimes you really have to push and be your own self advocate,especially now with covid things are getting delayed. LLet us know how things are coming along.

@Oceanmara

I’m sorry to hear of your reasons for being here but you are in the right place to connect with others and get support. @Brighty and @Whitelilies have made excellent suggestions as you wait to have your endoscopy. I can relate totally to the anxiety of waiting for testing, one suggestion might be to contact the GI‘s office and see if you can be placed on a cancellation list while waiting. I found the waiting between appointments and scans very anxiety provoking. Once I had a dx, I could start to feel like there was a plan and direction and more clarity on what to expect. I was dx’d with EC adenocarcinoma in March 19. had chemo radiation then surgery with positive outcomes. keep us posted and ask any questions you have. I found having the opportunity to connect share my fears and questions with others in a safe and caring place very helpful. Thanks for tagging @Runner Girl.

Oceanmara
9 Posts

Thanks @Brighty @Whitelilies I so appreciate your responses. It is so helpful. I am almost thinking about going to emergency just so I can talk to a doctor. I feel waiting another month for an endoscopy would be waisting precious time. I am in a rural setting and not much is available to us. I do not have a GI doctor or an oncologist. I have only seen a general surgeon. I would drive anywhere to get some clarity at this point.

Oceanmara
9 Posts

And @CDN Traveller sorry I missed the tag. Thanks so much.

Oceanmara
9 Posts

@CDN Traveller I am trying to sort this out with very little information. I was wondering what your initial symptoms were? How did they diagnose? Did you have to wait long? Is a month for an endoscopy a long time given that I had the barium done in April? I feel I am figuring out the medical system very alone.

@Oceanmara,

The initial symptoms I experienced were pain after I swallowed; as food was passing (off and on but becoming more frequent over a period of 6 weeks. Initial Dx was from an endoscope; I received the results in 4 days once I had the scope. I had scope about 3 weeks after referral from my GP. I did not have a barium test. After the endoscope, the next steps / appointments all took about 10 days - 2 weeks each - a CT scan, then to see the thoracic surgeon; then another CT/PET (combined scan); then referral to the cancer clinic to start treatment. So, about 6-7 weeks from endoscope to treatment starting. Waiting for each step was very anxiety provoking. Once I received the dx, I wanted to start treatment asap, but this is the process / protocol that is followed. These processes may vary between provinces and have likely been slowed down due to covid / demand on hospitals, etc. I know the waiting is very difficult. You might try contacting the hospital / clinic who is doing the endoscope to see if you can speed up the process, let them know how long it has been since your barium test, and ask if you can be placed on a cancellation list. I hope this is helpful.

Oceanmara
9 Posts

@CDN Traveller Thanks. It is so helpful. I feel things have gone slowly. Probably due to my ignorance about possible outcomes and how the system is bogged down. Last November I went in with symptoms. I really need to get a dx and get the ball rolling. It feels like my issues are getting worse. With more heartburn and burbling. I really appreciate your information and timeline. Sounds like I need a scope and a referral to the cancer clinic for a ct scan. I don’t want to wait another month with this seeming to accelerate. I will try to get on a waiting list. Do you think if I went to emergency I could get a faster scope?

@Oceanmara,

I'm not sure if going to ER would speed things up. Not sure what your system is like, but in AB at the moment, you would spend *many* hours in ER, and I don't know if they do any urgent endoscopies from an ER visit, especially during the covid crisis. I think you might have more success by calling the hosp unit where your scope is booked and /or re-contacting your GP to request a more urgent scan and ask if they can advocate to speed things up.

Oceanmara
9 Posts

@CDN Traveller Thanks for the advice. Really appreciate it.

ashcon
2173 Posts

Hi @Oceanmara

You've gotten some great advice so far. And I love your username - I'm sure there's a story there! I'm a breast cancer person myself, but my mother had esophageal cancer and she complained of heartburn for the longest time before her diagnosis.

Sometimes we are hesitant to get on the self-advocacy bus because there's always a little part of us that thinks (wishes?) it's not necessary. That if it was cancer then surely someone would have told you by now, right? So making that phone call to the clinic where the upcoming test(s) are happening is all about ensuring that all the necessary steps and tests are being done to either confirm or rule out cancer in a timely manner to your satisfaction.

The doctors and medical teams likely aren't intentionally putting you off. There's just far too many patients right now (on every level) and far too few doctors and resources available! I found showing a little compassion to the person who answers the phone along with a respectful and well-informed request to bump up your test to be a good approach.

Also doing a little research ahead of time (from respected sites!) was helpful to me when I needed to advocate or request something that I wanted. Have you checked out this link on Esophageal Cancer from Canadian Cancer Society?

Have you told anyone in your circle yet of your worries and fears?

Oceanmara
9 Posts

Hello @ashcon I really appreciate your help and kind words. Thanks. They really help with keeping perspective. I have so much swirling through my head. It gets worse at night. I don’t know how fast it progresses. I have already gone without follow up from April. Is this too long? This weekend symptoms seemed worse. I don’t feel I know enough to advocate. And even if I could, it might not make a difference. Perhaps it will be better once I have a diagnosis and a clear plan.

Oceanmara
9 Posts

Hey everyone. The endoscopy got moved up to the 13th. They want me to isolate for 10 days before. Is that a normal timeline? And a deeper question, what do you do with the 2am terrors? Any tricks? I just want to sleep through one night.

Brighty
8442 Posts

So glad your endoscopy moved up @Oceanmara !!! As someone whose anxiety is through the roof, i sleep with the tv on. I usually leave it on mindless stations like W (hallmark movies)or TLC. The comfort of just having background voices comforts me. It takes the thoughts out of my head when the background noise is on at a gentle volume. You could try that. Hope others will have other suggestions too on what helps them.

MandM
5 Posts

Arby 1 - have been following your journey and I did get one reply from you. I'm still learning to navigate this site and am not very good so hopefully this gets to you and/or others in the same situation. My husband who is 70, healthy, doesn't smoke or drink had a gastroscopy on August 9th for a problem related to his gall bladder (he's been waiting for over a year to get his removed). The gastroscopy uncovered an adenocarcinoma at the junction where the esophagus meets the stomach. Since August 9 he's had an endoscopy and his PET scan is coming up Nov. 16. Then a staging procedure the following week which I assume is a meeting?? to discuss the stage and grade of cancer. He's been told already that he will have the esophagectomy surgery and that it will probably be done laprascopically. This means a Dec. Date for surgery more than likely. It feels like we've been waiting forever since Aug. 9. We are both trying to stay positive and hopeful. We have no idea yet whether radiation and chemo will be recommended or not either before or after or both. Taking it 1 day at a time.

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