Are you getting cancer treatments during COVID-19?

Posted by Colleen Young, Connect Director @colleenyoung, Thu, Mar 26 4:46pm

Are you getting cancer treatments at the moment? What about diagnostic tests, like blood tests, CT scans, mammography, PET scans etc? Is your surgery going ahead as planned or postponed?

I’d like to hear from you. What is like being in treatment during the COVID-19 crisis? How are you doing?

Since the virus shut us down nearly 4 weeks ago, my wife (NETs) has had one appointment locally (Appleton, Wisconsin) for an Octreotide injection and labs. I couldn't go in with her and they checked her temp and asked her the standard safety questions. She has an appointment at Mayo Rochester on April 29 for MRI, labs, office visit and Octreotide injection. Rochester is a 4 drive for us, which is no issue, but due to the timing of her very early morning MRI appointment, we needed to spend the night. We didn't want to break our Covid-19 'safety sea' by spending a night in a hotel and eating out (take out actually). That's why she is getting her MRI, labs and Octreotide here locally through ThedaCare (a Mayo Member). The MRI and labs will be pushed to Mayo and reviewed by radiology and her oncologist. We have her office appointment the same day, only via a phone call. This is a first for us. Once the virus is cleared up, we intend to return to the Rochester campus.

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Hi, I was recently diagnosed with DCIS and before I could have either a mastectomy or lumpectomy, all 'elected" surgeries were cancelled, no new surgeries being scheduled,
and no wait list being maintained for some unknown future time. Despite needing surgery first, I did get to meet with a radiation oncologist today via my first teleconference which went well. I have had labs at our local cancer center to monitor a precursor condition I have for myeloma, but my hematologist postponed my appt from this week to late June. Additionally, I have been in the ER which was no small feat to get into and to my PC's office for follow up. Based on these experiences, I cannot stress enough how important it is to stay home to not only protect yourself from the coronavirus, but to keep from picking up anything at all. I feel we are mostly on our own right now unless one has a life-threatening emergency. Everything is focused on the pandemic right now as our doctors and hospitals try to be prepared for the worst. I found it heartbreaking that members of my care teams did not have masks to protect themselves except in the ER. The limited number they did have were being kept in reserve for their patients though many expressed fear for themselves and their families, especially a nurse who was expecting a child. These people have big hearts to have chosen the medical profession, but never bigger than right now as they show up each day to take care of us. We can help protect them and ourselves by staying home, getting enough rest and exercise, supplementing with vitamins, and managing our stress levels to stay as well as possible and keep our immune systems strong. I'm ok, trying to find the gifts in every day and maintaining purpose in my daily life. The death of a very beloved family member (no funeral allowed) on top of a COVID test, breast cancer diagnosis, and worry over my son's suffering grave effects of this pandemic, brought about a very tearful couple of days before I was able to shift my focus back on to the plight of others who were and are going through so much worse than I am. Life is uncertain now, but it hasn't stopped. Our days are more precious
and sweeter than ever before as a result of this uncertainty. I wish everyone here well and hope you are all able to find some joy and meaning in every day going forward. Blessings to you.

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Yesterday at Mayo FL my dad wore the antiviral mask we had on hand for his blood draw, APRN visit, and infusion. After a few hours the elastic band started hurting him so he took it off in the infusion room. The majority of patients in the facility wearing masks. Many were home made. My dad was not encouraged or discouraged from wearing the mask. Many of the care professionals were also wearing masks. More than you would typically see. Even in the parking lot, care professionals were wearing masks going to and from buildings and cars. The small cafeteria in the Mangurian building was open and serving food. There were not as many patients and family members as you would normally see. Overall I am glad that things were as normal as possible. I did not go in to all the places that I normally would have. Take care everyone!

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@tomewilson

Since the virus shut us down nearly 4 weeks ago, my wife (NETs) has had one appointment locally (Appleton, Wisconsin) for an Octreotide injection and labs. I couldn't go in with her and they checked her temp and asked her the standard safety questions. She has an appointment at Mayo Rochester on April 29 for MRI, labs, office visit and Octreotide injection. Rochester is a 4 drive for us, which is no issue, but due to the timing of her very early morning MRI appointment, we needed to spend the night. We didn't want to break our Covid-19 'safety sea' by spending a night in a hotel and eating out (take out actually). That's why she is getting her MRI, labs and Octreotide here locally through ThedaCare (a Mayo Member). The MRI and labs will be pushed to Mayo and reviewed by radiology and her oncologist. We have her office appointment the same day, only via a phone call. This is a first for us. Once the virus is cleared up, we intend to return to the Rochester campus.

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@tomewilson How lucky you are to have this option! I hope you will report back to us and let us know the procedures and this method worked out smoothly for you.
Ginger

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@tomewilson

Since the virus shut us down nearly 4 weeks ago, my wife (NETs) has had one appointment locally (Appleton, Wisconsin) for an Octreotide injection and labs. I couldn't go in with her and they checked her temp and asked her the standard safety questions. She has an appointment at Mayo Rochester on April 29 for MRI, labs, office visit and Octreotide injection. Rochester is a 4 drive for us, which is no issue, but due to the timing of her very early morning MRI appointment, we needed to spend the night. We didn't want to break our Covid-19 'safety sea' by spending a night in a hotel and eating out (take out actually). That's why she is getting her MRI, labs and Octreotide here locally through ThedaCare (a Mayo Member). The MRI and labs will be pushed to Mayo and reviewed by radiology and her oncologist. We have her office appointment the same day, only via a phone call. This is a first for us. Once the virus is cleared up, we intend to return to the Rochester campus.

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@tomewilson Hi Tom,

This COVID-19 is certainly changing the way we do everything! I appreciate the update you provided on your wife. I hope that her reports from the MRI and labs show that she is doing well. How is your wife feeling? Does she still have carcinoid syndrome symptoms?

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@devehf

Yesterday at Mayo FL my dad wore the antiviral mask we had on hand for his blood draw, APRN visit, and infusion. After a few hours the elastic band started hurting him so he took it off in the infusion room. The majority of patients in the facility wearing masks. Many were home made. My dad was not encouraged or discouraged from wearing the mask. Many of the care professionals were also wearing masks. More than you would typically see. Even in the parking lot, care professionals were wearing masks going to and from buildings and cars. The small cafeteria in the Mangurian building was open and serving food. There were not as many patients and family members as you would normally see. Overall I am glad that things were as normal as possible. I did not go in to all the places that I normally would have. Take care everyone!

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You have provided some very good reminders, @tallyteresa, as to why we all should heed the social distancing and "shelter-in-place." It can be a rather boring way of life, but better than the alternative of being so very ill and over-burdening the hospital systems.

I look forward to hearing from you again.

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Hi all, I have deleted the posts about church and celebrations for Easter. This discussion is about getting cancer treatments during the pandemic. Please feel free to start a new discussion about Easter and Passover in the Just Want To Talk group https://connect.mayoclinic.org/group/other/.

See the discussion that Lioness started here:
– Easter services, Passover and other celebrations during COVID-19 https://connect.mayoclinic.org/discussion/easter-services/

Thanks for understanding that this discussion is for talking about cancer and getting cancer treatments during COVID-19.

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I am scheduled for a scan and an infusion next week and don't know whether to be more afraid that it will be cancelled or that the staff will not have proper masks and gowns (they didn't use masks when they accessed my port in March because they were trying to save them)….. I am trusting the system to cancel appointments that can be cancelled and to protect patients as well as possible but not sure the system can do this these days. Fingers crossed

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@cab

I am scheduled for a scan and an infusion next week and don't know whether to be more afraid that it will be cancelled or that the staff will not have proper masks and gowns (they didn't use masks when they accessed my port in March because they were trying to save them)….. I am trusting the system to cancel appointments that can be cancelled and to protect patients as well as possible but not sure the system can do this these days. Fingers crossed

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Good luck @cab. I think your trust in the system is well placed. My observation is that the oncology professionals are doing an excellent job at balancing an abundance of caution and continuity of oncology care. It would be nice if there was clearer evidence about the use of masks. Unfortunately the issues with supply confound the decision. I am thankful that this community exists so that we can at least discuss the issue.

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Thank you for keeping this about cancer and not about religion or politics, had enough of both to last a lifetime.

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Synopsis of my visit to Mayo/Florida today: I wore my N95 mask and was not taking anymore chances as I felt I had been possibly exposed March 30-31 during brain radiation because no one wore masks. Greeted by 5 people wearing mask's and asked the usual questions. One came over and took my temperature by a new gadget (new at this Mayo) that read your temperature without touching you while held to your forehead. The place seemed empty until I got off on the 2nd floor. Whooa, lot's of people waiting to be called in for labs or visits. Waited 15 minutes to get called back to have labs drawn. Left the hospital and came home for the 2 hour break. Had a video conference with my PA which did nothing to ease my pain in my side or the pain in my chest. They cannot listen to you breathing or feel for lumps. But, at the same time we all need to keep as much distance as possible. I then drove back to a almost 1/2 empty parking lot. Checking back in to the same area, not as many people but all wore masks. Waited about 15 minutes to get called back. Greeter wore a mask and walked me to my room. Nurse came in with a mask on and asked me the same questions again. Asked her about some other nurses that I am use to seeing (been going almost 6 years) and was told many were sick or quarantined. No surprise there but it saddened me as it was so obvious to me that this was going to happen. Another nurse came in to sign off on my drug without a mask. She said, "sorry, I forgot my mask but we are 6 ft apart". If I had not had my mask on I would of said something not so nice. Had to wait 45 minutes to get my infusion and then another 45 minutes to do the infusion, do bp and get unhooked. When I left at 4:30 there was no one in the waiting room.

I feel that Mayo did not provide the staff with masks when it was deemed necessary, at least a month ago. I will probably never find out the true reason but I have heard the theories. Get to do this again (hopefully) in 3 weeks!

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@cab

I am scheduled for a scan and an infusion next week and don't know whether to be more afraid that it will be cancelled or that the staff will not have proper masks and gowns (they didn't use masks when they accessed my port in March because they were trying to save them)….. I am trusting the system to cancel appointments that can be cancelled and to protect patients as well as possible but not sure the system can do this these days. Fingers crossed

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Cab – are you at Mayo? If so see my last response. I do not know about gowns during the scan as they were not using either when I had my scans last month.

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@colleenyoung

I'm relieved to hear that most cancer procedures, testing and treatments are going ahead as planned or with some accommodations. As @pameladstone said, "cancer is not going to wait for the virus to pass."

Several of you mentioned tele-visits and phone follow-ups. Do they make you feel comforted that you don't have to travel to the hospital for care or concerned whether they will be sufficient or thorough enough?

For those of you who have had some procedures postponed, what concerns might you have?

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I recently had to find a lab in my area for blood test. The hospital Center in nearby city recommended this, due to increased Covid19 threat and to spare all concerned. Lab in our small rural town was closed but I managed to find lab in nearby small town. They were able to give me an appointment time, Hematologist faxed them a requisition and I went to have the test. I found the lab attendants were very appropriately masked, gowned and wearing face shields etc. I was given a mask (I inquired in advance if I should wear one and they preferred to give me one there).The test was done, Hematologist has results and Dr phoned me with directions for prescription of Hydroxyurea continuing. I feel this is a reasonable alternative during these uncertain times. Stay home and stay well. Take care all.

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@seaspray

Synopsis of my visit to Mayo/Florida today: I wore my N95 mask and was not taking anymore chances as I felt I had been possibly exposed March 30-31 during brain radiation because no one wore masks. Greeted by 5 people wearing mask's and asked the usual questions. One came over and took my temperature by a new gadget (new at this Mayo) that read your temperature without touching you while held to your forehead. The place seemed empty until I got off on the 2nd floor. Whooa, lot's of people waiting to be called in for labs or visits. Waited 15 minutes to get called back to have labs drawn. Left the hospital and came home for the 2 hour break. Had a video conference with my PA which did nothing to ease my pain in my side or the pain in my chest. They cannot listen to you breathing or feel for lumps. But, at the same time we all need to keep as much distance as possible. I then drove back to a almost 1/2 empty parking lot. Checking back in to the same area, not as many people but all wore masks. Waited about 15 minutes to get called back. Greeter wore a mask and walked me to my room. Nurse came in with a mask on and asked me the same questions again. Asked her about some other nurses that I am use to seeing (been going almost 6 years) and was told many were sick or quarantined. No surprise there but it saddened me as it was so obvious to me that this was going to happen. Another nurse came in to sign off on my drug without a mask. She said, "sorry, I forgot my mask but we are 6 ft apart". If I had not had my mask on I would of said something not so nice. Had to wait 45 minutes to get my infusion and then another 45 minutes to do the infusion, do bp and get unhooked. When I left at 4:30 there was no one in the waiting room.

I feel that Mayo did not provide the staff with masks when it was deemed necessary, at least a month ago. I will probably never find out the true reason but I have heard the theories. Get to do this again (hopefully) in 3 weeks!

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@seaspray– Hi. I'm glad that your CT scan and infusion went smoothly. I hope that in 3 weeks you will be well and able to go back for more! After a day like yours, I'm done in the next couple of days. I travel by train 1 hr both ways. Does this tucker you out?

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@colleenyoung

Hi all, I have deleted the posts about church and celebrations for Easter. This discussion is about getting cancer treatments during the pandemic. Please feel free to start a new discussion about Easter and Passover in the Just Want To Talk group https://connect.mayoclinic.org/group/other/.

See the discussion that Lioness started here:
– Easter services, Passover and other celebrations during COVID-19 https://connect.mayoclinic.org/discussion/easter-services/

Thanks for understanding that this discussion is for talking about cancer and getting cancer treatments during COVID-19.

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Would it be possible to move this entire discussion about treatment during COVID 19 elsewhere, in to separate discussion?

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