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Getting follow up care

Getting follow up care

Posted by CatherineS on Nov 13, 2020 4:44 pm

I'm due for my first post-treatment mammogram at the end of the month but everything is backed up because of Covid and my anxiety is through the roof. My GP is useless and I don't know who else to contact.

Re: Getting follow up care

Posted by MCoaster on Nov 13, 2020 5:18 pm

CatherineS‍  I am so sorry that you are faced with having nowhere to turn to.    While we obviously can not change your situation I hope that this community can offer you support which might reduce your stress level a bit.   Unfortunately there so many women and, yes, men here who have experience with breast cancer both because of a diagnosis or as a caregiver.    The only good thing is that many of us have been there and have a variety of experiences to share.    COVID is certainly having a tremendous impact on diagnosis, treatment and follow up.

May I ask what treatment you referred to?    A good starting place might be to get in contact with the person who carried out the treatment or their office.    Often cancer centres and most hospitals have staff who can deal with questions which patients have.    If you had surgery, chemo or radiation you should be able to get a copy of what treatment etc. you received.

The CCS also has a helpline where you can often get help and suggestions.   I was diagnosed with dcis and subsequently had a bilateral mastectomy about a year ago and I found the helpline was amazing with really kind, knowledgeable and caring people who helped me a lot.   Have you browsed any of the forums here?   I would suggest the Breast  which you can access through the Types of Cancer forum as a good place to start and perhaps also look at the Groups.   You are very welcome to post and if you wish to start a new topic.

You are certainly not alone because we are a safe place for you to share  knowledge and experiences and we are very good listeners if you wish to rant.

Let me know if I can help.    If you wish to reply to a post first click @ and then without a space start typing in the person's name.   A blue box should appear and when you see the person's name click on it and it should appear in blue where you are posting.

Healing thoughts.

MCoaster

 

Re: Getting follow up care

Posted by CatherineS on Nov 13, 2020 9:59 pm

Thank you. I've been in touch with my oncologist and have an appointment with her in January. I'm supposed to have my first post-treatment mammogram at the end of Nov/ beginning of Dec but have yet to get an appointment. I'm concerned about pains that I have (to be honest though, the pain is no different than that I've had my whole life) and am having trouble sleeping because I'm so worried and not getting any answers from any of my doctors.

Re: Getting follow up care

Posted by JustJan on Nov 14, 2020 9:08 am

CatherineS‍ , Welcome to the site and hopefully you can get some help and support on you on how you might be able to manage your situation. I can feel your frustration and anxiety about your followup mammogram. Even without Covid, maneuvering in the health care system can be a challenge, but Covid has certainly made it worse. 

Perhaps calling the place that performs your mammogram may help. The staff might be able to assist and provide you with some direction. I might also try calling the oncologist’s office and see if they can get your mammogram booked. You may have tried this already but if not, this may help. I know that scheduling tests, surgeries and appointments is a challenge with Covid for those booking the appointments. Things can get misplaced or waylaid so it never hurts to followup. 

Hopefully, you can get this all sorted soon so you can put your mind at ease. 


 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Getting follow up care

Posted by Whitelilies on Nov 14, 2020 11:37 am

CatherineS‍ Hello and welcome to our caring site.......so sorry for the reason.....we are all here to listen, to support and more.
As was mentioned earlier....I too agree: Why not call the mammogram "office"?  Booking desk?  I did that myself.
Be nice...be a bug.....have your pick! (lol)
I like to give the "human touch" on any call.....say....you are feeling nervous.....say.....please help me.....say.....please book me so I can sleep! (even humour them)
Say......you will accept a cancellation too.

I have heard their outbound message too!  It said "do not leave more than 1 message"......"we will return calls within 48 - 72 hours".
They are busy.
We get it.

Please call......why not......

And: today......self care Saturday.......soak in tub......bubbles......hot tea after....brisk walk outdoors....crunch the remaining leaves.......

Please keep posting and sharing.....we are listening.

Regards
Whitelilies

Lillian  

Re: Getting follow up care

Posted by CatherineS on Nov 14, 2020 12:17 pm

I've called mammogram booking and they are very harried and just tell you that they're backed up due to Covid.

Re: Getting follow up care

Posted by Whitelilies on Nov 15, 2020 4:56 pm

CatherineS‍ Hello.....sheeesh.......yes so many medical departments are "backed up" due to covid....I do understand.
However.....if you could reach a "human person" (not voicemail) at mammo booking, then simply ask/request/demand/ an appointment...
They are backed up; fine.
What is first open and available date?Is it Dec 1? Is it Jan 1?
Ask to be on cancellation list. Give your cell number.
Tell surgeon office, you need a mammo "date".
How backwards....things are....that the patient is "booking"......

Just to make you chuckle.....my GP, literally has NO office space any longer !!.....The entire medical building, 6 floors, has been demolished.  She was given notice, and sent out a mass email to all her patients, stating she has NO office....if we wish to leave her services, we can.....or we can stay.....and she is reachable, virtually. I chose to stay......am with my GP for 29 years......
 
I am wondering.......How on this earth, she will perform a PAP Test???? Through the phone?  Please Laugh.....though not funny.
My GP said she is "farming out" these tests......I too am thrown to the wolves.....and yet another "stranger" is doing another test......grrrrrrr.......
I am calling on my own accord Ob-Gyn Drs to literally "beg" for a PAP test.....am not really going to be their patient....what care will I receive?
I found 1 Dr who said yes...and 3 others said no.....

Gotta laugh.......already cried.

Please share, when you finally get your mammo appt.

Regards
Whitelilies

Lillian

Re: Getting follow up care

Posted by CatherineS on Nov 16, 2020 1:49 pm

Whitelilies‍ I called this morning and they said they were still booking October patients and probably wouldn't get to November patients until January...!!! How lovely that they can be so blasé about it. I have an appointment with my GP tomorrow (at least she still has an office) and if she sees anything concerning she can send a new req that's more urgent. I guess that's all I can do.

Re: Getting follow up care

Posted by Runner Girl on Nov 16, 2020 3:23 pm

Hi CatherineS‍ ,

I am sorry you are having such a hard time getting your follow up mammogram.  Would your GP be able to perform a breast exam and would that give you a little peace of mind until the backlog allows for you to get in for the mammogram?

If you don't mind, what was the nature of your breast cancer?  What treatment have you had?

I was diagnosed with IDC, ER+ and HER2+ in May, 2018.  I had a lumpectomy (right breast), chemo, radiation and a year of Herceptin.  I've been on Tamoxifen for nearly 2 years.  I will be having a bone density scan tomorrow afternoon (it was booked in February).  I'm to meet my oncologist in December to determine if they can switch me to Anastrozole for the next 3 years.  My first follow up mammogram showed 2 lesions in my other breast.  The radiologist was freaking out and told me I needed a biopsy right away.  My oncologist said they were too small to biopsy and I'd need to wait 6 months for the next mammogram to see if there was any change.  Since then I have a mammogram/ultrasound every 6 months as I'm on the radiology clinic's high risk list.  Thus far these two lesions haven't made a move so they are classed as benign.

I hope your GP can give you a little peace of mind.

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

Re: Getting follow up care

Posted by CatherineS on Nov 16, 2020 5:49 pm

I had stage 1 breast, non-hormone related. Don't know the rest. The technical aspects just cause me anxiety and so I just let all those details go.
I made an appointment with my GP for tomorrow and will have to accept that for now, as breast imaging is backed up by a couple of months. God help those whose cancer won't be found without a mammogram. That's how mine was discovered, because I had some pain in the opposite breast and pushed for an early test. If I had waited the two months longer as planned who knows what my situation would have been?
I had a lumpectomy, 6 months of chemo and 16 radiation treatments. No drugs.
I'm so glad your lesions proved to be benign - maybe that radiologist needs a lesson in bedside manner? I wouldn't have appreciated the panic.

Re: Getting follow up care

Posted by Whitelilies on Nov 17, 2020 3:56 pm

CatherineS‍ Hello....I will be offering "Bedside Manners Class - Virtually" of course, for NO charge.....to ALL:

Specialists
Oncologists
Radiologists
GPs
Technicians
Nurses
Nursing Aides
PSWs
Secretaries

Did I forget any "group" of folks?

A polite, respectful, bedside manner, goes a long way.......

Regards
Whitelilies

Lillian
 

Re: Getting follow up care

Posted by CatherineS on Nov 17, 2020 6:36 pm

Throughout the course of my treatment I was shown respect, kindness, humour and even tenderness by all professionals I met. The only person who really upset me was a tech who was very short and made me sit for my pre-op mammogram because I'm tall. It was very uncomfortable and I ended up in tears because she really struggled and there was a lot of gasping and carrying on. I'd had the wire inserted for my lumpectomy and so, of course, when the mammogram was done there was blood, and I was already just keeping my s*** together. Not a fun experience.

Re: Getting follow up care

Posted by MCoaster on Nov 17, 2020 7:06 pm

CatherineS‍    I am sure that all of the professionals who were there for you really appreciated your appreciation of them.   There are so many variables in needs, histories, emotional and physical states and personally I find that my attitude to the professionals is mostly mirrored back to me.   As a teacher, latterly with children with extremely special needs, I found that being calm would often get the results I wanted rather than escalating the problem behaviour by mirroring it back at them.   

Sorry if this is a bit off topic but I think it is important to think about in the COVID and lack of staff and resources fuelled time we live in.

We really do need to advocate for ourselves and for others and doing it with understanding is what I have found to work.  (Most of the time! There was one awful nurse right after my mastectomies who brought me to tears and then asked why I was upset, but enough of that.)

Hope that you get your mammogram appointment soon and fingers crossed that the results are good.

Healing thoughts.

MCoaster

Re: Getting follow up care

Posted by MCoaster on Nov 17, 2020 8:11 pm

So many here are having to wait too long for scans such as mammograms etc.   I have no experience of private healthcare and am wondering how having scans done privately would fit into the provincial programmes.  From reading posts here it appears that some genetic tests and medications can be sourced privately.
MCoaster
 

Re: Getting follow up care

Posted by Kuching on Nov 18, 2020 7:56 am

Hi MCoaster‍ .  I am in Ontario.  At one point last year, I asked if we could get an MRI for my husband done faster if we paid for it.  I was told that, as long as he had an Ontario Health Card, we couldn’t do that.  Somebody told me we could pay to get it done if we went to Quebec, where he wouldn’t be eligible for free care, but I never really looked into that.

I'm not sure if any of this is relevant, or even true,  but that’s what I was told.  Good Luck!

Re: Getting follow up care

Posted by Lacey_Moderator on Nov 18, 2020 9:50 am

CatherineS‍ 

That sounds like a very uncomfortable and difficult experience to go through. I'm sorry. Thank you for trusting our community to share with us. 

Please know you are not alone,
Lacey

 

Re: Getting follow up care

Posted by MCoaster on Nov 19, 2020 12:45 am

Kuching‍ Thank you for the info.  I am very fortunate in that the ct scans and ultrasounds which were all I need were pretty quickly done in our small local hospital but after reading about some of the waiting times others were experiencing I just thought I would ask as it might be of help to others.  

So many aspects of cancer  diagnosis and treatment appear to be dependent on where one lives.  I think you are also an expat Brit. so you may have read the recent article in The Guardian written by a woman who has cancer.  (If you wish I can pm the link for it.)  The problem of accessing treatment is scary there too. 

Best wishes.

MCoaster

 

Re: Getting follow up care

Posted by Nicky01 on Nov 22, 2020 6:39 am

Kuching‍ The info you got is true, I live in Quebec and in February of last year I needed an MRI for a knee and there was a long waiting list, I was told that if I didn’t want to wait I could go get one privately for $1200.00 I said no and I finally got my MRI done through health care I was scheduled to go in March this year but it was canceled because of covid I was rescheduled to go in June and it was again canceled and rescheduled, I finally got it done in July.I also need surgery for a trigger finger and I have been waiting for that for 19 months and I could have it done next week if I wanted to pay $500.00 which I will not! In March during an exam my doctor found a lump in my right breast and he had to make three requests before I was given an appointment for a mammogram finally got it and had a biopsy this summer which I was told was negative because it seem to have only been a cyst but with the recommendation of a follow up mammogram this November and I am still waiting for that appointment which I would not be surprised if it gets canceled because of covid!

Re: Getting follow up care

Posted by Kuching on Nov 22, 2020 9:20 am

Good to know!  At least the option is there if you really need it.  I guess Ontario must be more “socialist” than Quebec, not wanting the rich people to be able to jump the queue!

Re: Getting follow up care

Posted by JayRay on Nov 23, 2020 12:08 pm

I live in BC. My health authority doesn't have a central booking system. My "urgent" CT was originally booked for Dec 14, almost 7 weeks after the request was sent in. When I called the booking office the lady was very apologetic but unable to change my appointment. I asked if a neighboring hospital might fit me in sooner. She couldn't tell me that information but she did tell me what to do to find out. I called my surgeon and boom! My CT is now Nov 25th.  All it cost me was a phone call and a one hour drive to the neighbouring town. 

Hang in there!