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Sept 2019 first possible signs of cancer. it is now Jan 2020, cancer confirmed.
NancyN55
3 Posts
I am feeling so frustrated, I want to scream, but I don't know who I'm supposed to be mad at.

My husband went in for a yearly check up  back in Sept 2019 and that's when the tumors showed up on the scans. We were told the images were too blurry and they weren't able to get a clear image of the tumor. So They kept sending him for more scans, each one taking weeks to get an appointment, another few weeks for someone to look at the scan. 2 CT cans and 1 MRI later in Jan 2020 and we've got a diagnosis that it is cancer of the liver. The doctor has ordered another scan as the previous ones are from too long ago and are now no longer  accurate.

Its taken nearly 5 months from the first discovery of the mass in the liver to the cancer diagnosis . Today Feb 2 there is no date for surgery,  Just waiting for another scan.

Is this normal practice ? Does 5 months not seem to long to wait for a diagnosis , and still waiting for treatment plan as the cancer continues to grow ?
is time not of the essence ?? who do I speak to ? who do I call to get things moving ?

I feel like my husband has been lost in the system, his now just a file.  Waiting for the results on whether it was cancer or not, we still had hope that it could be benign . Now to know it is cancer, and waiting for treatment knowing so much precious time has been wasted. I am angry and anxious.  Thank you for listening.
11 Replies
ACH2015
2306 Posts
Hi NancyN55‍ 

A very frustrating situation, and somehow you and your husband got lost in the maze of healthcare. I have been there myself, as a patient. May I suggest moving forward with the current situation advocating for your husband's testing leading toward diagnosis and treatment plan. We can't change what has happened, and in no way am I minimizing what has occurred. Get your frustrations out in a way that beings you back to the present - and allows you to move forward. Venting here is a safe way to do that, and a good start.

As you've got a diagnosis now, the good news is that your husband is that much closer to obtaining a more thorough diagnosis leading to discussions and decisions about treatment plan and any options available.

Questions to Ask When You Have Cancer is a publication from the Canadian Cancer Society that is an excellent guide toward getting the most out of consults, recording information and keeping track of where you are.

I don't know how many doctors or specialists you and your husband have been through to date, but I'd light a "polite" fire under whom ever is in charge of your husband currently. By that, I mean asking for an escalation in how quickly the current scans and the reporting will take place (given the window of time that has passed), while working towards diagnosis and plan of action. Our anger and frustration can at times be misdirected and we as patients and caregivers need to realize that.

Again, as one who's been there, for yourself and your husbands sake, save your energy, and advocate for what is in the present and future.

You aren't alone here, and please keep asking questions from us and the medical team as this process moves forward.

ACH2015
Kims1961
2288 Posts
NancyN55‍  I'm glad you posted.  ACH2015‍ gave some really good advice.

Also wondering:
1. Does your husband have a family doctor who could help? Even to ask who you would speak to?  

2. I'm sure you are keeping track - but reminding them of the time frame - my understanding is that scans can be prioritized, so asking what is the expectation for time frame for scan - 

3. I had also followed up with my doctor in writing about my concerns - just to be sure we were all on the same page about decisions made.

Please keep us posted on how you are making out.  How is your husband managing?  

Kim
Rayline
274 Posts
I had Mammogram in Sept 2018, diagnosed Jan 2019 with breast cancer, and the lung was diagnosed in March 2019. So it definitely took time I had an mri, 2 CT’s , X-ray. It was very frustrating, the waiting. I started to get determined waiting for surgery. I had surgery on my lung in May!  Sometimes you have to get a little tough and push!
​​​​​​, 

 
NancyN55
3 Posts
Hi again,  we called the specialist doctors office today to ask about the Ct scan appointment and was told that they haven't heard back from the CT folks yet. Said they will get back to us before the weekend.  Which would make it 3 weeks and counting.

Thank you for the advice, I'm going to encourage my husband to speak to his family doctor and see if he could be of any help to put the scans through urgently as so much time has passed since the first  scan.

I am really tempted to pay for a private scan Vs feeling like a sitting duck.
we both lost our moms to cancer 13 years ago, my mother from what started as breast cancer that later spread, and his mother from liver cancer.  The family doctor never took her pain concerns seriously until it was too late, she was admitted into the hospital and before they could even start chemo. She was gone.

My husband seems to be doing well both mentally and physically . Minus the cancer.  His always been very calm and level headed. He doesn't believe in getting upset over things we can't control. Thank very much for asking.

I was in denial about the whole thing up untill saturday, which is when I made this post. All the memories of losing my mother, those doctor visits, the chemo, watching my sweet mother slowly slip away.  

Your replies, your words they mean a lot to me. Thank You
Cynthia Mac
3929 Posts
NancyN55‍ , I join with the others in our concern for your situation.

I can fully appreciate how you might be feeling like a “sitting duck,” especially given the history of cancer in the family. It’s important to remember that each person’s journey with cancer is different, so what happened to your husband’s mom probably won’t be the same as what’s happening to your husband.

I wholeheartedly agree with ACH2015‍ ‘S suggestion to “politely light a fire” under your husband’s health care professionals. I wonder if it would help you to ask how long they think it would have taken the cancer to develop to it’s most recent, scanned state. That might serve two purposes: 1. It could help you understand that this hasn’t happened “overnight” and 2. It could help remind the doctors that it’s “go time.” I wonder, too, if citing some of the delays you’ve experienced with key members on the team will help to move things along a little faster now.

From my Dad’s cancer experience, I’ve learned that some cancers grow slowly, and some very quickly. (He’s a prostate cancer survivor who has also had melanoma and currently has metastatic lung cancer.) Dad’s family doctor was the one who found them all, and he has been particularly attentive during Dad’s lung cancer journey, so the advice to get your husband’s GP “on side” might well help you, too.

I know it’s hard, but try not to let your past experiences with your parents’ cancer impact you now. Try to focus on this new journey, with the knowledge that your husband’s doctor has listened to him and they found his cancer through routine screening, which hopefully means they’ve caught it earlier than his mom’s.

I wish you success in getting an action plan going as quickly as possible. 


 
Whitelilies
2342 Posts
NancyN55‍ Hello
I sure would scream if I were you......
Ideas you CAN do:
-reach your family doctor; ask for HELP to get action! get surgery date! get info! get ball rolling.
-reach doctor who gave your husband the DX of Liver Cancer.....insist on an appt.....you attend too.....call office....1x 2 x many times......say CRISIS case.....

I BEGGED for an appt, with the Surgical Oncologist......received it in 48 hours.

Get Calling !! Cry on phone if need be.  Do what is needed; get surgery date.

GO !

Whitelilies

Lillian
DMG123
5 Posts
I guess I should consider myself quite lucky, all of my testing was done in a very expeditious way. Even after the MRI diagnosis of my lipoma it was only weeks before I was in for surgery with the cancer surgeon.

These are just some of my own opinions and may not be true at all, but anyway:

Age plays a major factor in how fast you get in for any type of imaging. 
 
The healthcare system in Canada plays the odds of your age versus your outcome and the money they would have to spend. Sad but I believe it to be true.
 
If you are a younger to middle-aged person earning a good income I think you get a little bit better service. 

Also, and I am certainly positive of this, your family doctor and his network of referral specialist plays a lot into it. I think some specialists take patients from some of their more let’s say favourite doctors.

I know that my family doctor has personally called specialists to stress the importance and urgency of some problems.
 
However, and I always do this. I find out who my family doctor has referred me to. I do not wait for a phone call or letter from the specialist. I’ll immediately call them directly and ask them for the earliest available appointment. Also, I asked to be put on a waiting list of cancellations. I informed them that I only need half to one day notice. This is simply because I live in a rural area. If I lived in the city that was doing the diagnostic I would tell them I could be there within hours of any cancellation. 
Cynthia Mac
3929 Posts
DMG123‍ This post is going to stray a little off the original topic, but I feel I ought to respond to your comments about ageism in the medical profession.

I’ll start by saying that your advice about following up on referral appointments is amazing. One of my last screenings was delayed a year because the specialist said they never got the form, but my doctor’s office said they’d sent it. I’ve learned that one of the good things about being retired is being able to pick up a cancelled appointment!

The rest is off-topic, so if you’re interested, please read on, and if not, please scroll by:

My Dad is 80, and I’ve not seen him experience any ageism from anyone along the way. Everyone, from his GP, to his (rather) young surgeon to his oncologist, and even the other professionals we’ve met along the way (a cardiologist and gastroenterologist) have been attentive and responsive to my Dad. Because Dad is a smoker, I wasn’t sure he’d always get the best medical care, but he has. Dad’s GP has been “on side” all the way, but I don’t think he’s ever had to jump in and actively advocate for Dad. Once he found that spot on his lung, the wheels of modern medicine started turning, and they’re still rolling along 2 years later.

To be quite honest, I’ve seen what you’ve described in other professions, and I suspect that what you report does happen in the medical profession too. I spent 4 years working in a high school office, and learned a lot about how some “customers” and even their parents were regarded behind the scenes.

I have actually encountered a bit of sexism from medical professionals in my lifetime, but it was nothing compared to what happened at the car lot!

Welcome, by the way! I see you recently joined Cancer Connection.
Ohmy
124 Posts
I can certainly understand what you are going through. Due to a delay in removing a sessile polyp, it developed into colon cancer- stage one. I waited for 10 long months and my attempts to expedite things fell on deaf ears. Once my cancer was confirmed though things moved quickly. Take care and I hope things move along. Keep calling and advocating for yourself. 
NancyN55
3 Posts

DMG123:
I guess I should consider myself quite lucky, all of my testing was done in a very expeditious way. Even after the MRI diagnosis of my lipoma it was only weeks before I was in for surgery with the cancer surgeon.

These are just some of my own opinions and may not be true at all, but anyway:

Age plays a major factor in how fast you get in for any type of imaging. 

 
The healthcare system in Canada plays the odds of your age versus your outcome and the money they would have to spend. Sad but I believe it to be true.
 
If you are a younger to middle-aged person earning a good income I think you get a little bit better service. 

Also, and I am certainly positive of this, your family doctor and his network of referral specialist plays a lot into it. I think some specialists take patients from some of their more let’s say favourite doctors.

I know that my family doctor has personally called specialists to stress the importance and urgency of some problems.
 
However, and I always do this. I find out who my family doctor has referred me to. I do not wait for a phone call or letter from the specialist. I’ll immediately call them directly and ask them for the earliest available appointment. Also, I asked to be put on a waiting list of cancellations. I informed them that I only need half to one day notice. This is simply because I live in a rural area. If I lived in the city that was doing the diagnostic I would tell them I could be there within hours of any cancellation. 

 

That's great advice ! I never thought about getting on the waiting list for cancelations , didn't even know that was a thing !
Thank you so very much.
Rayline
274 Posts
Thank you CynthiaMac, I have had very good care also. Took some time to get going but I certainly feel well cared for by the medical profession. I am a 62 years old woman. 
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