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Just home from bowel section surgery.

Re: Just home from bowel section surgery.

Posted by Jeff M on May 23, 2020 6:44 am

Hi Lillian,
I’m currently waiting to hear back from a support group in Durham who’s members are Colorectal Cancer survivors.
In the meantime my family doctor has been a great help and is always willing to see me, even in person.
I had my one year Colonoscopy postponed due to the COVID virus, but with things starting to ease up, hopefully they’re reschedule me soon enough.
No issues but would just like to keep on schedule with the post surgery check ups.

Jeff
 

Re: Just home from bowel section surgery.

Posted by alexisrj on May 27, 2020 9:37 pm

MelindaWhiteliliesJeff M‍ 

It really is comforting to know we're not alone in how we feel! It's as though some people have taken the fact that I don't need further treatments after surgery as the whole thing being done with! Carry on with your life! Get to it! And I'm very much still thinking, "excuse me? I have cancer??" I can very much relate to that line of thinking... And unfortunately for me, the cancer clinic here reviewed my referral and pathology and rejected my referral.... Everyone said, this is a great thing to be rejected! BUT I was really hoping even to speak with an oncologist about what the f*#k just happened! And get information on my case and risk of recurrence, confirm appropriate follow-up etc. (what if something was missed or will be missed?? I know! No "what ifs".... but still.... I can't help it!) I am very glad you were able to get an appointment Melinda‍ !

Re: Just home from bowel section surgery.

Posted by Jeff M on May 27, 2020 10:45 pm

Hey Alexisrj,

I completely get the “what if’s”. Great news that pathology doesn’t want to see you, but what are you supposed to do when your mind focuses on the “ what if it comes back?” 
Maybe you have a talk with your family doctor?

Jeff

Re: Just home from bowel section surgery.

Posted by Melinda on May 27, 2020 11:10 pm

Oh Alexis, that sucks that they dismissed your referral. I didn’t even know that was a possibility. I feel so much better since my referral to the cancer clinic in Victoria went through. I’ve had calls from the booking person, a tech getting my skype set up and two different nurses asking me a whole bunch of questions. My oncologist appointment is tomorrow and I have a big list to ask her, including all the questions you posted. And they gave me my Cancer ID number, which they said I can use to get support from various groups at the clinic. One of these is a nurses line, where I can call and leave my number and they’ll call me back to talk about anything that is coming up for me. Today I’ve been having some new pain, so I plan to bring this up tomorrow during my tele conference call. 
On my list to ask the oncologist there is: confirmation of stage and T3, suggested follow up, suggested eating, when to contact someone and who for what symptoms, why my CEA numbers were so low and my CT inconclusive, and if the CEA was low and the CT didn’t show much how Would they detect a new tumour somewhere else and is there a different test I should be getting?
I totally get what you’re saying about “wtf”. People seem to think I’m fine since they took the cancer out, but holy cow, give me a breath. It’s only been 2 1/2 months since I was diagnosed. Can we at least talk about it. And I’d like a support group but there’s not much in my area and I’m off grid most of the time and can’t access wifi or high data calls. 
I guess I’m feeling a bit frustrated today. Once again, I’ve talked myself into knowing how I’m doing. Common for me. 

I’m hoping you can ask to have your referral re-evaluated. I specifically asked for a referral so I could get eating and digestion support and emotional support. I wonder if they put that on my referral form?

Re: Just home from bowel section surgery.

Posted by Wendy Tea on May 27, 2020 11:44 pm

alexisrj‍  This is wrong on every level. First you are entitled to a copy of your report.  Next you dont need a physical appointment,  a phone conversation would work. It's ok to advocate for yourself. It's such a cop out that they are not respecting you as a patient.  Hopefully your family doctor can make a connection for you with your cancer clinic team. You're strong. Please give them a call. Let me know what happens. I am on your side!
I am a survivor. Wendy Tea

Re: Just home from bowel section surgery.

Posted by Cynthia Mac on May 28, 2020 8:52 am

alexisrj‍ , Have you already had your followup with your surgeon? He should be able to help you out with the information you’re looking for from an oncology doctor.

Jeff M‍ ‘S suggestion about a phone call with your GP is good advice, too. Dad’s family doctor had all the information, so yours ought to as well.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Just home from bowel section surgery.

Posted by alexisrj on May 28, 2020 7:01 pm

Jeff MMelindaWendy TeaCynthia Mac‍ Thank-you all for your responses! Even when it's straightforward, as I suppose my case is.... it's still complicated for me in many ways.

I will get in touch with my GP. I had a phone followup at like 10 days post-op with my surgeon and I don't have another appointment with him until August. He did give me all the information and staging/follow-up and I'm not sure if it's just that I don't understand the process but I thought an oncologist would have more information. My surgeon will still organize a cancer genetics appointment but they are not even accepting referrals right now due to COVID and it not being "urgent". Perhaps my GP can shed some light on this!

Alexis

Re: Just home from bowel section surgery.

Posted by Jeff M on May 28, 2020 7:12 pm

Hi Alexis,

In my case, after my surgery was complete ( a year ago today! ), my case was moved over right away to my oncologist.
It was easily a month after my surgery that I went to see my oncologist and he gave me the biopsy report, all the statistics as well as post surgery optional treatments.

Jeff

Re: Just home from bowel section surgery.

Posted by KiwiCam on May 29, 2020 11:27 am

Hi alexisrj‍. With my low staging, the tumour taken out with surgery and no need for chemo, I wasn't referred to an oncologist either. The only reason I was able to access counselling with a social worker at BC Cancer Agency was because one of the many diagnostic procedures (so many) I had was done there, so I already had a BCCA ID number. My surgeon's office gave me the impression that I wouldn't have been entitled to BCCA services if I hadn't had the ID number, but I could be wrong about that. Press your surgeon's office to make another request. It took me advocating on my own behalf to find out, first by talking to the surgeon's office manager and then by calling BCCA directly. It's tiring to have to do all of this during recovery from surgery, but if we haven't automatically been given access to oncology through a referral for further assessment and treatment, we're very low on the priority list, especially right now with COVID and surgeons starting to work on the enormous backlog of surgeries that were cancelled. Your GP should also be able to advocate on your behalf. As has been pointed out, your GP will also have received a copy of each report, and you are entitled to those. Depending on their rules about use of email, they may be willing to email them to you, or you might have to pick them up in person (my surgeons and my GP had various approaches, so I got some reports via email and some I had to pick up). The reports may not give you the information you are seeking in layperson terms, but it's good to have them and keep a record of diagnosis and treatment. So many new terms, so much to remember! Your GP may not have the specialist knowledge of an oncologist, but they ought to be able to explain some of it to you.

Unfortunately, it's possible that they will continue to reject any your request for referral because, like me, you are deemed as not needing an oncologist and only needing screening going forward. In addition to continuing to campaign for you, could your GP suggest any free or low-cost counselling options to help with emotional support in the immediate future? While it's good to feel that you're talking to someone whose counselling focus is cancer, all counsellors have the training and expertise to help in trauma situations. They can still help.

I hope you get the information you need and can access support soon.  

Re: Just home from bowel section surgery.

Posted by alexisrj on May 29, 2020 10:57 pm

Thanks KiwiCam‍ !

That's good to know that I'm getting the right kind of follow-up - I read online that that's what recommended but I still kind of felt like maybe if it weren't for Covid, I'd still at least get an appointment. My GP's office can email me my reports. I should get copies, I hadn't been as I didn't want to read something I didn't understand and then google it and worry. But now I suppose it doesn't really matter as I've got the stage and follow-up and it is what it is at this point.

Luckily, I have counselling through my husband's Employee Assistance Program at his work and I have a great counsellor I've talked to a few times before my surgery (and an appointment with him next week), but I wondered if someone specialized in cancer would have any different perspective or understanding. I will continue to chat with my current counsellor if I don't end up being able to get in at the Cancer Clinic.