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Post cancer monitoring/ care during coronavirus

Post cancer monitoring/ care during coronavirus

Posted by Ri77 on May 21, 2020 10:26 am

Hi everyone! Hope all are safe, well, and happy during these crazy times! I finished treatment for stage 3 breast cancer (including a masectomy and recomstruction) sometime in October last year. Ive been closely monitored since then including keeping a close eye on my breast breast through Dr. Appointments and mammograms every 6 mths. Now I've been doing and feeling good. I was scheduled to travel i  April, meet drs in May and have a small follow up surgery to balance breast sometime this year. Then coronavirus happened. So yes, not in Ireland as I'd hope this past April but that doesnt bother me as much as one by one all my follow up appointment and consultation have been cancelled / postponed with no follow up date. I have the very important mammogram set for June and am dreading getting the call that that too will be cancelled. I was wondering if anyone else is having any issues / concerns with a very passive follow up care since coronavirus hit? It's important to note they initially waned to keep a close eye as I was initially diagnoses with a false negative and high recurrance likelihood. I live in Ottawa Ontario. Thanks everyone and I do hope everyone is well and safe... 

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on May 21, 2020 11:57 am

So far, follow-ups are going ahead in Manitoba. I had a physical exam in April before my Zoledronic acid infusion, and I’m scheduled to see my oncologist in July when I should be discharged to the care of my family doctor. The staff all wore masks and eye protection and we physically distanced as much as we could, but otherwise it was much like a normal visit. My October Breast MRI is scheduled already. Follow-ups are so important - for my triple-negative breast cancer, they are especially so in the first 3-5 years.

Cancercare here, seems to have been carrying on as normal in Manitoba. Some surgeries have been delayed with chemo happening first in some cases, but even surgeries are being scheduled now.
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by ashcon on May 22, 2020 9:39 am

Hi Ri77
I, too, am in Ontario, but in SW Ontario. None of my follow up appts have been cancelled, just moved to being virtual. They are now just phone calls with my Oncology Nurse Practitioner. 

I'm glad that you are doing and feeling well. That is a good sign that you should not under appreciate, but it is worth finding out, if you, can how these upcoming appts will pan out. If for no other reason than getting out of that place of "waiting in the dark without a plan." 

Wishing you continued wellness and (eventually) that trip to Ireland! 
 
---- "Nothing ever becomes real till it is experienced." ----

Re: Post cancer monitoring/ care during coronavirus

Posted by Whitelilies on May 22, 2020 6:05 pm

Ri77‍ Hello
Re; Follow Up care/appointments.
I too am getting virtual calls, from the Survivorship Clinic (Toronto).

BUT: my scheduled mammogram, dated April 7th (Height of/still the height now/of COVID) was cancelled ! Faster than you can say "Pass me a Mask!"
Funny, though.....I JUST got a call from Mammo Clinic (at large hospital, in North York) that my "new" appointment is July 29th.  The voicemail said to prepare for "further cancellations".  Aka; write down this appt date/time in pencil, not ink.
They are trying to re-book the slew of appts and backlog BUT change is in the air.

Keep well.

Regards
Whitelilies

Lillian 

Re: Post cancer monitoring/ care during coronavirus

Posted by Ri77 on May 22, 2020 9:16 pm

Seems Ontario is handling things differently than Manitoba (and Quebec from what I hear). I did end up calling and receiving a reassurance that my mammogram would proceed as scheduled in early June. They told me that my type of follow up mammogram was recently given the green light to proceed with appointments (whatever that means). I also got a new virtual appointment with the NP in late June... I guess it is the way it will be for a while. But I agree with ashcon, the not knowing where and what to expect was adding unnecessary stress. I'm glad I reached out and got some reassurance (knowing things may change again... hopefully continuing in the right direction). 
Thank you all you lovely beings! :) 
 

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Jun 25, 2020 11:51 am

So my oncologist office just called to say my appointment will be by phone...

I was hoping it would be in person, because my exam before my appointment in April for Zoledronic acid was just a heart and lung check, nothing else and I’m supposed to have full exam every six months...
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Jul 6, 2020 4:20 pm

Had my telephone consult - turns out the decision to make it not in person was based on assumptions not facts...

My oncologist assumed I would be seen by my family doctor (even though I had told her office I don’t have one currently), and that I’d had a full exam when I had my Zoledronic acid infusion. And of course I've decided not to have that any more...

So an appointment for 3 months is booked, for in-person...I feel reassured that I am getting the care the protocol says I should have...

Fortunately I can advocate for myself and I am not afraid to challenge someone if they have things wrong, but I know not all patients are able to do that...
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by ashcon on Jul 7, 2020 10:48 am

Got some good news today. Results of the chest US and chest Xray done last week are all clear! (I requested these scans because the last clinical exam I had with my Nurse Practitioner was in Jan 2020, and like Essjay‍ , I am not comfortable with just phone calls as a suitable follow up plan for what was my stage 3 triple negative breast cancer.)

Other good news:  The NP proactively booked me in for an actual, in-person clinical exam with the new MO at my cancer centre. This will happen some time in the next 2 months. She will then arrange for another follow up, between her and I, for 2-3 months after that. 
AND she will arrange for a chest ultrasound to be done annually.  No mammogram because I had a double mastectomy (no reconstruction) in 2018.

Needless to say I am feeling very good about this.
I sincerely hope that everyone on this site starts to see some action or resumption of their appointments, as well.  
---- "Nothing ever becomes real till it is experienced." ----

Re: Post cancer monitoring/ care during coronavirus

Posted by Brighty on Jul 7, 2020 11:03 am

Wonderful news ashcon‍ ! So happy for you!!!!!
Help is out there. All you have to do is reach out.

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Jul 7, 2020 3:56 pm

Great result ashcon‍ ! I am sure your advocation for yourself played a big part in shaping the plan
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by Cynthia Mac on Jul 8, 2020 8:06 am

ashcon‍ So wonderful to hear your news. And so grateful to have this space to be able to share it!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Post cancer monitoring/ care during coronavirus

Posted by MCoaster on Jul 8, 2020 9:08 am

ashcon‍    Such good news. Enjoy a beautiful day!
Margaret

Re: Post cancer monitoring/ care during coronavirus

Posted by Kims1961 on Jul 9, 2020 8:43 am

ashcon‍ I am so thrilled!  

Sometimes it can be so simple but so hard .  We just want a plan , to be included in our care.  We can actually make things easier for the medical profession .

I am doing a happy dance for you...and in this heat it’s more like a sweaty mess💃
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Post cancer monitoring/ care during coronavirus

Posted by Lacey_Moderator on Jul 9, 2020 11:43 am

Such great news ashcon‍ ! thank you for sharing. That sounds like a thorough plan for follow up.

Ri77‍ - Any movement with your appointments yet?


Lacey

Re: Post cancer monitoring/ care during coronavirus

Posted by Jomilks on Jul 10, 2020 8:51 am

Hi Ri77‍ 

I also live in Ottawa, well, Kanata. I finished chemo on January 31st and Radiation on March 24th. I had one follow up by phone with my oncologist in May and am supposed to have another checkup scheduled for July, but no appointment booked as yet. I was also supposed to have a checkup scheduled with my plastic surgeon 30 days after radiation was completed but no word yet on that either. I think I will start making some phone calls on Monday....

Awesome news ashcon‍  We all need good news these days!

Keep well everyone!

Re: Post cancer monitoring/ care during coronavirus

Posted by Lacey_Moderator on Jul 10, 2020 9:34 am

Jomilks‍ 

Good to hear from you 😊

Good idea. With all the scheduling and rescheduling happening I have heard from many people who have had to be proactive about re-booking appointments. Doesn't hurt to give a nudge.

How are you doing post surgery and radiation? Any concerns? Any tips to share ☺

Lacey

Re: Post cancer monitoring/ care during coronavirus

Posted by Jomilks on Jul 12, 2020 9:13 am

Hi Lacey_adminCCS‍ 

I am doing well thanks!  Small problems with insomnia and some residual pain under my arm and one area of my incision, but manageable for sure. 

One thing I am noticing is my breast where I received radiation is tender, especially when I wake in the morning. Wondering if anyone else has this as well. 

Thanks so much. Jo

Re: Post cancer monitoring/ care during coronavirus

Posted by Lacey_Moderator on Jul 13, 2020 9:23 am

Hi Jomilks‍ 

Glad to hear your managing. I hope with time things improve for you.

Great questions about the tenderness in the radiated breast. Can you start a new post with your question here in the breast cancer forum. Click the 'here' link and then click 'start new topic'. I would post 'tenderness after radiation' as your subject line.

I hope this helps.

Lacey

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Sep 22, 2020 5:43 pm

So my in-person appointment to give me a catch-up physical exam, because I’m supposed to be examined every six months, but haven’t been examined since January, has been turned into another phone appointment, because of COVID...

Absolutely pointless...

So I cancelled it...

I have a breast MRI scheduled for mid-October, but no doctor to review it and tell me the results yet...I fully anticipate that being cancelled too...

So, my survivor care is going great!

I got sent a link to fill in a survey about how my treatment has been affected by COVID but its really badly designed, doesn’t ask any useful questions or provide any opportunities to qualify any answers, so if I wanted to say I feel strongly that my family doctor care has been inadequate, I’d want to be able to say it’s because I don’t have one...

And then there was an invite to talk with my bosses wife about my sexual feelings post cancer (in her professional capacity), but nope, I know her personally and just nope, nope, nope...
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by Cynthia Mac on Sep 23, 2020 8:38 am

Essjay‍ , I can relate to your concerns about the survey. When I come across a badly designed survey or one that asks too many pointless questions, I write a small novel in the comment section at the end to let them know. Whether or not they “get it” is a them problem — at least they’ve been told! If the survey you’ve been linked to doesn’t have a comment section, then print it out and send it to a PTB - whether it’s your Ministry of Health or your MPP/ MLA.

Please try to stay positive about your ultrasound appointment next month. Do you have nurse practitioner’s in your province? That might be an option in the absence of a family’s doctor.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Sep 23, 2020 9:47 am

Cynthia Mac‍ thankyou - I’m on the list for a new doctor or NP - they all have full lists here...I’m literally waiting for a resident to complete their training...
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by Essjay on Sep 23, 2020 1:18 pm

Seems cancelling my appointment was very effective! My oncologists nurse called to ask why I had cancelled. I explained the appointment had been made for a physical exam, but I’d received a change to make it a phone appointment, which seemed unnecessary since we’d talked in July.

Upshot is a new in-person appointment has been made...

Self-advocacy is everything...

 
Triple Negative Breast Cancer survivor since July 2018

Re: Post cancer monitoring/ care during coronavirus

Posted by Lacey_Moderator on Sep 24, 2020 10:49 am

Essjay‍ 

Best possible outcome! I'm so glad you advocated.

Lacey

Re: Post cancer monitoring/ care during coronavirus

Posted by ashcon on Sep 25, 2020 9:55 am

Way to go Essjay‍!

Like you, my last in-person follow up was in Jan 2020.
After 2 phone call follow-up appts, I expressed my concerns with lack of clinical exams, given my stage 3 TNBC diagnosis. 
Voila! I received an in-person clinical exam 3 weeks ago, and am in the system for clinical exams every 3-4 months again. 

You're still having your MRI in October, yes? 
Hope you are making progress on securing a family doctor. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Post cancer monitoring/ care during coronavirus

Posted by Laika57 on Sep 25, 2020 10:08 am

Well done Essjay‍ i probably would have just yelled at somebody...
hubby has been in hospital since his surgery, but would they do any follow up tests? Nah.
They're waiting for him to go home first. Again, he's right there, but for them to schedule a follow up, he has to be sent home, so he can come back in / be called for an appointment .
Tell me again how that makes sense.
Ah wait, the doc won't have to move his lazy backside to the other end of the hospital...
Have you hugged your dog today?