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Whats My Next Step

Whats My Next Step

Posted by Mike P on Oct 25, 2020 6:50 pm

Hi - this is my first post so just trying to figure out how this site works.
Can anyone tell me what I should do next after recently being diagnosed with colorectal cancer. Should I be meeting with onocologists or others to check options and game plans?
I was sent straight to the surgeon after the colonoscopy and he just said there are no options and that was that.
I am researching as much as I can on line and even trying to get second opinions from some US hospitals but there is so much info out there its crazy.

Are there better centers in Toronto or Vancouver that have out of the box cutting edge treatments. I am in Calgary.

Any help would be appreciated.

Mike
 

Re: Whats My Next Step

Posted by Brighty on Oct 25, 2020 6:59 pm

Mike P‍  welcome!!!!!! I would think I you absolutely  would have an appointment  with an oncologist to talk about your options and treatment plan.   .. Whitelilies‍  would you be able to talk about your experience  after you were diagnosed?  Thank you miss Lilly.   I know Toronto  has some excellent  hospitals     I'm not familiar  with the hospitals in either Vancouver  or Calgary.      Thank you for posting  and welcome.  I'm sure others will chime in soon to talk about their experiences and what happens next.      
Help is out there. All you have to do is reach out.

Re: Whats My Next Step

Posted by Whitelilies on Oct 25, 2020 7:30 pm

Mike P‍ Hello Mike and welcome to our caring site....we will support you and know that you are NOT alone.....
I will share my journey, in the hopes that it will help you....offer HOPE......
I have to ask, if possible.....what did the GI Dr say,who did your colonoscopy?  Simply go to Surgeon?  Did they say they "saw something"?  Where did/if they see it?

I had my FIRST ever colonoscopy. ...at an Endoscopy Clinic.....The GI Dr, there, told me, she saw a 3 cm tumour "downtown"....yes Mike....really downtown!! Very little sunshine available in that location......I TOO was sent, straight to Surgeon.  In fact, this Dr, was a Surgical Oncologist. (Specializing in ColoRectal only).  Within 5 days, I was in his office. (pre covid......now perhaps a phone call/virtual meeting with specialists.....urgh).....Then, I had a series of "tests". This will help the Surgeon with "details" on where "it" is.....is "it" aggressive" is "it" on the move?  Tests will most likely be a CT scan....MRI/colon..... probably MRI/Liver.....this is common!! do not fret.....they need to see the surrounding "areas" to ensure they know what is happening.....blood work as well....with ALL this info, your Surgeon will make an informed, medical decision, on when to do your surgery and WHAT kind of surgery?  This series of tests, may take weeks....mine was 10 weeks from Finding Out Date.....to Surgery.....

I would believe that Calgary has excellent Cancer Care Centers......try to read up on the bio, of the Surgeon, assigned to you.

Also....my Surgeon insisted on ANOTHER colonoscopy, by him.....before ANY surgery.....he wanted to see with HIS eyes, my tumour, etc.  He said he does NOT like surprises, and reads colleagues notes, but must do colonoscopy, on his own terms.  (Such "joys" I had, drinking the PREP beverage again.....yuck......spit......poop......repeat !).

I was told Stage 2/Early 3.  I had Radiation, then Surgery.  I will HOLD now, to not overwhelm.

How are you feeling?
When will you "meet" your Surgeon?  Please......prep all your questions beforehand, so you are ready!!

I am glad you joined our site....we are ALL here to help and guide .......

I was 56 at diagnosis, and in a state of shock (too)......now am 58 !  Here I Am!!

Keep posting.....ask me anything; as NOTHING makes me blush !!
TIP: perhaps now is a good time, to reduce red meats.....reduce dairy....reduce processed foods.....reduce sugar.....
TRY: to not read TOO much on Dr Google.....it may be misleading and send you in a tizzy......not good! 

There is ALWAYS HOPE !!

Regards
Whitelilies

Lillian

Please keep posting.....and sharing......and let us know what is your next step.....it should be a "meeting" with surgeon, alongside tests.....I hope I answered your concerns.....

Brighty‍ Thanks for the tag.....Miss Lilly is here, to support and more.....   

Re: Whats My Next Step

Posted by Mike P on Oct 25, 2020 7:34 pm

Thanks for the Welcome Brighty. I have only seen the surgeon and he was kind of on the cold or defensive  side. Wasn't too interested in discussion other than surgery. Who do I contact to see an onocologist?
Hi Whitelilies  - Thanks for the Welcome also .After the colonoscopy showed a mass in the rectosigmoid colon and one in the rectom I was told that it is more than likely cancer and went home for a week waiting for biopsy report and meeting with surgeon. I had the meeting with the surgeon first then a couple days later was told on the phone that the rectum mass was cancerous and invasive.
I have been spending my time the last two weeks researching alternate treatments to avoid the surgery but there is so much out there and the cutting edge clinics in the US are expensive. These are Envita in Scottsdale. Oasis of Hope California and Mexico as well as Cleveland Center. The Envita Clinic looks very impressive but expensive. I was hoping there was something similiar in Canada that our health care would pay for.
 

Re: Whats My Next Step

Posted by Laika57 on Oct 25, 2020 8:03 pm

As for treatment abroad - in some cases ohip will reimburse you. I know someone who was told he had to wait years for back surgery (he's 80, so was not a priority for anyone) so he had it done in buffalo and got reimbursed on the grounds that years was not an acceptable wait time.

if you haven't already been referred to an oncologist, ask your gp. Your surgeon should have done the referral, or even the Gastroenterologist, but better check before wasting precious time waiting for nothing. Your GP may be able to ask those two and get a more "helpful" answer than if you're asking yourself.

hate to say this, but now is a good time to get some things in order. Make a list of your passwords for everything. Decide who will handle your affairs if something happens. POA, medical directives, etc.
Hubby got diagnosed, and before he even saw the surgeon, some other ER doc prescribed him morphine and he lost his ability to make decisions for himself. Pretty much permanently. Now was it all the morphine, or the cancer, or the chemo - who knows. But I'm stuck making decisions and chasing information while dealing with the emotional trauma of my spouse not just having a terminal illness, but also having lost his mind. Overnight. Don't do that to the people you love.
and not needing any of that but having it prepared is still better than the other way around.

best of luck.
Have you hugged your dog today?

Re: Whats My Next Step

Posted by Mike P on Oct 25, 2020 8:05 pm

Hi Lillian - I am feeling ok. Pain in my left buttocks/hip which everyone thought was sciatica for the last 2 or 3 months. The other therapists are on hold in case the pain is being caused by the cancer. I am on tramadol pain killer and take a high fiber drink ( natural psyllium, flaxseed etc) as well as a probiotic the local health food store recommended.  Made a huge difference from the severe constipation.
I have a CT scheduled for Oct 29 and he said he was ordering a MRI also but I have not heard back yet. Need to followup. 
Thats what  I am looking for actually. Some discussion with someone on possibly more tests, options such as chemo as I hear it has benefits with surgery etc, etc
I am 56 right now myself and am off the sugar, processed meats, dairy ( except goats Keifer as it has natural probiotics). Still eating a small amount of red meat but eating alot more chicken now. I like fish but so hard to know what your getting these days.

Thanks for letting me ask anything. Much appreciated and I am the same. There are no questions off limits for me. I think thats the only way these forums will have any benefit. 

So you are approaching the 2 year mark after your surgery. Are there lots of negatives post surgery? I am not so much afraid of the surgery but more of the quality of life afterwards. Functionality, pain, medication and other side affects. Even loss of sex drive. Not to mention the possibility of wearing a colostomy bag the rest of my life. Did you have to wear a bag?
Does this surgery cause shorter life expectancy?

You are right. Google search is mind boggling but I have found some pretty inspiring stuff on there. Just cant afford it LOL

Thanks for being so open and supportive. This seems like a very supportive group

Mike

 

Re: Whats My Next Step

Posted by Mike P on Oct 25, 2020 8:19 pm

Thanks Laika - all good info. I wonder who I would check with for paying to go out of country? 

I agree and have all my affairs in order for the similiar reasons. I used to fly alot and worked at a mine so always expected the unexpected .

I will check with my GP for the onocologist & Gastroenterologist referral. I also left a message for the medical center where I had the colonoscopy asking the same thing.

Sorry about your husband. Did the doctors have an explanation? Thats a harsh thing to happen and for you to go through. I feel bad for you. 

Thanks for your time

Mike

Re: Whats My Next Step

Posted by Laika57 on Oct 25, 2020 9:07 pm

Mike P‍ let's just say I've had a worse time dealing with the doctors and their culture of not divulging any information, than with the disease itself... 

If anything goes wrong, they won't tell your spouse until they call to ask about a DNR... besides, their oncologist is a kid who can't even be bothered to pull his pants up far enough to cover his underwear.

the insurance question, what's the alberta equivalent of ohip? They ought to have information on this kind of thing... best to get it approved in writing before you're told "oops, sorry, we just changed that policy"...
Have you hugged your dog today?

Re: Whats My Next Step

Posted by Mike P on Oct 25, 2020 9:15 pm

Hi Laika57‍  I hear you. All I want is a good doctor and a support team so I can make the best decisions possible.
I will dig around for the alberta insurance thing -thanks
I just noticed your quote at the bottom - nice.
I dont have a dog but I feel like getting one because I could sure use some hugs LOL

Have a good night

Mike
 

Re: Whats My Next Step

Posted by Whitelilies on Oct 26, 2020 10:42 am

Mike P‍ Hello Mike
I will try to share my experiences, with the concerns you have raised earlier......You wish to see an oncologist.....I am pretty darn sure you will.....
Surgical Oncologist (does your surgery, if needed....)
Medical Oncologist (specializes in chemo, meds, etc)
Radiation Oncologist( specializes in radiation, etc) 
Surgery; If you need.....I had the L.A.R. (Lower Anterior ReSection).  Surgeon took out 3 cm tumour and yes I had an Ileostomy bag (lower right).
I was "told" from the get go, I will need a bag.....they said "temporary".....I just was not able to 'believe' any longer.....I was still in shock. They monitored me, CT scans, blood work, sigmoidoscopy and when 2 "loose ends in low colon" healed, they scheduled the Ileostomy Reversal.  I had the bag for 6 months.
I can guide you and support if that is needed for you.
Post Surgery:.......Well.......things are not such smooth sailing......They call it LAR Syndrome.....frequency, urgency and repeat !  I am almost at 2 years.....it is a BIT "better".....good days.....bad nights....it happens.....
Side Effects: that will depend on the treatment you receive....I found radiation was "OK".....I had it before any surgery.......they wanted to try to shrink before removal...
Libido:  Same old! Perhaps the mindset may be slower, but should be operating just fine !   please laugh.....

Let us know how CT on Oct 29th goes......hope you get MRI ( 1 or 2) soon.....dont be alarmed if they request Liver too.....

We EACH have a different treatment plan, even with "same" issue/similar diagnosis.  We all heal differently too.....We all tolerate side effects differently too.

But we ALL need to support one another.

Keep posting,

Whitelilies

Lillian 

Re: Whats My Next Step

Posted by Mike P on Oct 26, 2020 10:50 am

Hi Whitelilies‍  - Thanks for sharing. These are all the things rolling around in my head scaring the hell out of me because I dont kow what to expect..I was told the bag could be permanent if they have to go lower on the resection.
So does this mean a life of wearing diapers and not leaving home because you need to be near a washroom ? Will I be able to enjoy any activities such as gym, hiking, walks etc?

Thanks
Mike

Re: Whats My Next Step

Posted by Whitelilies on Oct 26, 2020 7:37 pm

Mike P‍ Hello Mike
YES you WILL be able to hike, skip, jog, salsa, hip hop and more!
The tests/scans will show your surgeon "where" exactly the tumour lies.....how close to anal verge? Mine was about 5 cm from "the end of the dark tunnel".....
There are Pros and Cons, to the Bag AND to post Bag......both have some ease.....both have some stressors.....
Diapers.......well.....for now.....let's keep them on newborns etc...... a small liner will do....basically to "buy time" to GET to a nearby washroom.
Certain foods need to be avoided/in limitation.....I have been known to skip a meal (or 2) if there is "function" I will attend...very rare though....I am sort of anti-meds....I don't want Immodium......
Let us know how the CT goes on the 29th.....

We are all here to support you.....

Whitelilies

Lillian

 

Re: Whats My Next Step

Posted by Mike P on Oct 27, 2020 10:58 am

Hi Lillian - I am on the run today but wanted to quickly say thanks for the response. That gives me some hope and piece of mind at least. Funny how in the last 2 weeks I cant find someone in the medical field to answer these types of concerns and I did a lot of asking lol.
I appreciate this site and the people on it. Glad I found it and joined :) 

Mike

Re: Whats My Next Step

Posted by alexisrj on Oct 29, 2020 11:26 pm

Mike P‍ You've gotten some great advice from Whitelilies‍ and others!

I had colon cancer (sigmoid, right at the recto-sigmoid junction). My surgeon did surgery before sending my referral to the cancer clinic - was based on the results of my colonoscopy, bloodwork, a CT, and a follow-up ultrasound. Since it didn't appear from those tests that the cancer had spread, he did the surgery first. After surgery, my cancer was found to be Stage 1 (T2N0M0) and then he sent the referral to the cancer clinic - after the pathology was back from surgery. In my case, the cancer clinic refused my referral as there was nothing they would do with me based on my pathology and stage. So my next steps now are just following up with my surgeon.

Are you still waiting for other tests? (like CT, MRI?) Perhaps your surgeon is waiting for results or the best option for you is surgery first (like myself) and then referral to oncology after surgery.

Since being diagnosed with cancer, I've heard the phrase "hurry up and wait" many times! Right after diagnosis, it can be helpful to take some time to just distract yourself as there can be a lot of waiting (and wondering).... waiting for test results, waiting for appointments, waiting for a plan, waiting for surgery, waiting to be able to start treatment, and so on.

Alexis

P.S. It seems like you are very formation oriented! There is a group called Colontown on Facebook that has TONS of information (keep in mind, it is an American group, and can be very overwhelming) but if you want to be very well-informed and want to know about different cancer treatment options and centres including in the US, you might find that group very helpful. It is a private group but you will find instructions on how to join.

Re: Whats My Next Step

Posted by Whitelilies on Oct 30, 2020 4:46 pm

Mike P‍ Hello
I think your CT scan was Oct 29th......how did it go?
When you learn more, share if possible.....we will support you.
You are not alone.

Regards
Whitelilies

Lillian 

Re: Whats My Next Step

Posted by Mike P on Oct 30, 2020 6:35 pm

Thanks Alexis and Lillian . I had the CT yesterday and it went well and scheduled for MRI on Tuesday then the surgeon will see which way we go depending on the outcome. 
And yes the waiting is hard on the brain and emotions. 
I have seen a Naturopath the other day and probably the best move ever. Very supportive, knowledgeable and can gather medical record info as well as liaison between Oncologist's.
He will assist with diet before and after surgery also. 
I am working with Envita in Arizona as an alternatative and point of second opinion. They are great but very expensive ( approx $170,000 plus I pay my own boarding for approx. 12 weeks. ) My Naturopath encouraged me that the surgery is best route versus the high cost. 

Thanks
​​​​​​​Mike

Re: Whats My Next Step

Posted by Whitelilies on Oct 30, 2020 9:20 pm

Mike P‍ Hello Mike
Glad CT done......check!
Next one MRI......again....dont be alarmed IF you need 2 x MRIs......1/colon.......2nd/Liver......often do two.
Naturopath: I too see one......only found her post surgery....she too helps me with diet and supplements/vitamins.  I also do Mistletoe Injections....and Vitamin C, via IV in her clinic.
Surgery is next step? OK......we each have our own treatment journey.
I had Radiation first......then surgery.
When your path is "clearer".....please share......we can support you with our experiences and wisdom!
Sending Positive  Vibes Your Way!
Whitelilies

Lillian

Re: Whats My Next Step

Posted by Mike P on Nov 18, 2020 11:29 am

Hi Everyone - Sorry for the long communication pause . The last 3 or 4 weeks have been very busy.
So just a short update. The colorectal has metastasized outside the colon and spots found in lungs and liver but not too concerning at this time I am told as the upcoming radiation and chemo may help and they will be monitored on the CT scans every 3 months. 
They found a blocked vein in the first CT scan so I am on a blood thinner now. 
Pain in left hip and lower tail bone still exists but hopefully radiation shrinks the tumor enough to relieve some pressure off the nerve that's causing the pain. As everyone knows painkillers work to a large extent but the side effects of constipation etc are not good.
Working with two really terrific Naturopaths . One is a cancer specialist and both are keeping me well prepped ( high dose vit C , mistletoe and other supplements) and also pursuing such treatments as Advanced Immune Activity therapy, SOT Antisense Aligneucliotide therapy, Onconomics tumor sensitivity as well as ATA Cancer vaccine Prep. I would welcome comments and thoughts on the latter 4 . They seem well worth it from the information I was given as some or all are cutting edge.

Lastly and the main reason for this post is with the multiple visits to doctors, hospitals, Naturopaths and emergency wards I am finding of course that this journey has consumed my life completely and and has put me in a bubble where I feel like I am cut off from the rest of society. On top of that I am fairly new in Calgary ( 3 1/2 yrs) and my job is near the arctic circle which meant that I worked away from home a lot resulting in me not having any friend base in Calgary. 
I have done a lot of reading and have read some amazing books but find I am missing the socializing and personal wellness aspect of my life. This was mostly brought to my attention from some of the books and literature I have been reading.

I am seeking a really good Energy Therapy guru for a lack of a better word. Reiki, Healing Touch , Theraputic touch etc in Calgary here. I have reached out to a couple places and just waiting for a call back. If you know of a good one I would appreciate their name. Also interested in physical social groups and meditation groups such as Qigong etc if you know a good place to go.
Has anyone tried Life Vessel Energy Therapy in Edmonton? This will be my next call . I don't see one in Calgary.

In a nutshell I am feeling constricted and alone in this busy life and need to get out and socialize more especially with like minded people and attend to my inner self to stay positive and support my immune system as much as possible. 

I look forward to your responses and hope everyone is doing as well as can be. I am here for your support as well.

Thanks
Mike




 

Re: Whats My Next Step

Posted by Essjay on Nov 18, 2020 9:03 pm

Good to hear from you Mike P‍ - you have been busy getting your health in order!

I’m going to tag Runner Girl‍ who I know lives in Calgary and has used some complementary treatments in her cancer journey. She may know some places to check out.

The socializing bit is so hard just now - I admit to feeling a bit daunted to hear we could be facing these restrictions for another year yet! When I moved to Manitoba I joined various groups to meet people, and one I enjoyed that has gone online everywhere now is Toastmasters - here’s the website (I searched for Calgary clubs and there are lots) https://www.toastmasters.org/find-a-club?q=Calgary%2C+Alberta%2C+Canada&radius=25&n=&advanced=0&latitude=51.0473&longitude=-114.058&autocomplete=true&zoom=0

When does your radiation or chemo start?
Triple Negative Breast Cancer survivor since July 2018

Re: Whats My Next Step

Posted by Mike P on Nov 18, 2020 10:15 pm

Hi Essjay and nice to meet you. Thanks for the response.
I actually got a call today and my radiation starts this Friday. I was originally told it would not start for at least a week but what the heck sooner the better I guess Lol
And yes Covid does little for these situations but like the saying goes, everything for a reason. It just pushes me to try other alternatives like reaching out to great people on this site :)

Thanks
Mike
 

Re: Whats My Next Step

Posted by Whitelilies on Nov 18, 2020 11:11 pm

Mike P‍ Hello. ...I found your post. ...I am like a detective!
re naturopath dr....I too do tbe high dis vitamin C /IV. ..weekly for 7 months. ...now am every 2 weeks....I do mistletoe as well Helixor #20 M...I am not familiar with your "last 4"...but will look and read up further.   
glad radiation is a go ....before my radiation started.. my pre radiation appt was to "mark" the spot...not with an "X".. but with a dot/tattoo marker...I got 3....

thank you for sharing your updates. ..and yes yoy have been busy..   the dance card fills up quickly....it sure is better than cancelling anything. ...

if you have any concerns. ..please post.
yes moving is challenging. ..and creating a circle of friends is too. ...plus covid...= more challenging! 

sending positive vibes your way
whitelilies 
Lillian 

Re: Whats My Next Step

Posted by Runner Girl on Nov 19, 2020 9:39 am

Hello Mike P‍ ,

You certainly are finding a lot of ways to keep busy and help yourself thru this journey.  I did a meditation program last fall that was specifically designed for cancer patients and their caregivers.  Mindfulness-Based Cancer Recovery program is based on mindfulness-based stress reduction (MBSR), a therapeutic combination of mindfulness meditation and gentle yoga now offered to cancer survivors and their loved ones.  I found the brochure at the Tom Baker Cancer Centre.  Although, given the covid situation I'm not certain the program would be running at this time.

Good luck with radiation, glad it's been moved up, sooner you get started the better.

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

Re: Whats My Next Step

Posted by Mike P on Nov 19, 2020 11:55 am

Hi Whitlilies and Runner Girl
Good to hear from you both and glad you found my post.
I got the 3 tattoos also. I am told the radiation treatment is more advanced these days as they make a 3D model of the targeted area and can be very precise with the treatment which I find comforting.
I am seeking out a Reiki healer now with the hopes they offer meditation etc also. I have started meditation at home with some audio imagery books. I am pretty much open to anything and have checked into support groups through Tom Bakes and Cancer Society which I think is the Psychosocial department. 

How are you guys doing? Anything new happening? Have either of you done chemo. That will be my next step roughly a month or 8 weeks down the road.

Can everyone see this post or should I be posting elsewhere?

Gotta run. Take Care

Mike



 

Re: Whats My Next Step

Posted by Lianne_Moderato on Nov 19, 2020 12:39 pm

Hello Mike P‍ . Good to see your update. As Whitelilies‍ has said, your dance card definitely has been full of late huh.
Thank you for so eloquently expressing what many cannot or are afraid to say. The isolation that can come with a cancer diagnosis, even without a new city or a global pandemic, is challenging at best. Good on ya for reaching out andlooking for all kinds of options, not just for the socializing part but also for complentary therapies to help while you go through treatment.
I didn't see it mentioned so forgive me if I missed it or it is already on your radar, but there is an organization called Wellspring that has a location in Calgary. Here is the link:
https://wellspringcalgary.ca/
As is stated on their site, their office is closed to visitors right now, but they have a lot of online programs that may be of interest and be a way of connecting with others where there is a group setting. Hopefully some day soon, you will be able to partake in in person aprograms as well.

Wishing you well with your first radiation tomorrow. When I got my radiation tatoo markers, the tech tried to tell me that if you looked really close, it was not a dot but an intricate dragon lol

Lianne

PS - as you have posted in a public forum, your post is visible to anyone on the site, as well as non members who stumble across it. If you want to "tag" someone, as I have done here with your member name, simply type the "@" sign then start typing the username. When you see it in the drop down list, select it and it will turn blue. This sends a notification to the member that they have been mentioned.. THen those you reply to won't miss the post. Hope this helps.

Re: Whats My Next Step

Posted by Whitelilies on Nov 19, 2020 1:20 pm

Mike P‍ Hello Mike...
to ensure a person sees your message/post......start off with "@" sign...and type first few letters of name.....then a few will "drop down".....then tap at name you wished.....it should turn in to a Blue Box.....and blue lettering....so that person will get an email, to your post.

Re; Chemo....I did not have chemo.
Back to Radiation:  Sharing....in "my case"....it was Full Bladder! Yup, at every session..... The joys of a bottle of water are .....endless.....please chuckle.
I could not drive on a full bladder (ie drink at home).....so I had to go in extra early....sit around, and drink and drink and repeat.....(pre covid).....perhaps now there is not even a waiting area....they "call you right in?"
Sharing: My naturopath has me on Vitamin D3, Probiotics, GI Soothe, multi vitamins, Theracurmin, Coriolus, Beta Glucan.  A true concoction!  She said, lots of water too....filtered...

Keep posting....we are listening....

Regards
Whitelilies

Lillian