Are you getting cancer treatments during COVID-19?

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?

@dandl48

@sundance6 You might want to try the following links to locate a doctor specializing in Lyme. https://www.lymedisease.org/members/lyme-disease-doctors/ or https://doctor.webmd.com/find-a-doctor/condition/lyme-disease
Good Luck,
Dave, @dandl48

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Dave I appreciate the info! I'm always trying to learn more about Lyme all the time. As I said I have horrible brusing mostly on my hands and arms. The dosctors just "Blew" me off saying it was the blood thiners. Now with new information I see it can be tied to Lyme. The thing is I don
t hit myself, they just appear!
Hang in there!
Thanks,
Sundance(RB)

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@tomewilson

This video is worth viewing-

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@tomewilson
Thanks, Tom. This is a great video from a doctor at New York Presbyterian/Weill Cornell Medical Center, and I, for one, felt much relief after hearing from this man.

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I agree. It helped reduce my anxiety that the little Covid critters aren’t just to jump me and cause problems.

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My stepmom went for an MRI for her brain tumor at Mayo Florida today and she was not provided with a mask. Here is my current thinking. Masks should be on the people who are coughing and sneezing, have undiagnosed fever, or test positive. There doesn't appear to be strong evidence that wearing a mask keeps you from getting the virus, unless you are providing care to a positive patient, which I am not. I wonder though, for an immunocompromised patient at the hospital, it probably couldn’t hurt to wear a mask, but not just any mask, it has to be N95 which should probably be reserved for treating providers. Hopefully Mayo will keep patients at a safe distance from one another, and screen and isolate any patients who might be infected. Hand washing and distancing are still more important than anything else we can do. I will try to make sure my family members don’t touch things at the hospital and don’t touch our faces. I'm also wondering if gloves are a good idea, even if only to remind us not to touch our faces and eyes.

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I was supposed to have MRI-brain in April to see whether a gamma knife procedure was effective but this followup has been canceled and not rescheduled. I also am due for followup CT scans to evaluate progression/stability of stage 4 tumors throughout my body. I wasn’t diagnosed that long ago and have only had one round of chemo so I am very anxious to know the status of my disease. It’s all been canceled and I am on pins and needles not knowing what to do next or when these checkups will even be scheduled. This is so very stressful.

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@palstead

I was supposed to have MRI-brain in April to see whether a gamma knife procedure was effective but this followup has been canceled and not rescheduled. I also am due for followup CT scans to evaluate progression/stability of stage 4 tumors throughout my body. I wasn’t diagnosed that long ago and have only had one round of chemo so I am very anxious to know the status of my disease. It’s all been canceled and I am on pins and needles not knowing what to do next or when these checkups will even be scheduled. This is so very stressful.

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@palstead
Hang in there, palstead. While you wait (which is SO hard), meditate three times a day, and do a lot of deep-breathing when the anxiety level rises. We're all rooting for you and you will be in our prayers. Sending you blessings throughout your journey.

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@palstead

I was supposed to have MRI-brain in April to see whether a gamma knife procedure was effective but this followup has been canceled and not rescheduled. I also am due for followup CT scans to evaluate progression/stability of stage 4 tumors throughout my body. I wasn’t diagnosed that long ago and have only had one round of chemo so I am very anxious to know the status of my disease. It’s all been canceled and I am on pins and needles not knowing what to do next or when these checkups will even be scheduled. This is so very stressful.

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I’m in a similar situation. I adore Mayo but the reality is that your cancer isn’t waiting for them to sound the all-clear, which could easily be in July or later based on my conversations with Mayo MDs. I don’t know the specifics of your cancer or prognosis but I encourage you to seek out possible treatment at a cancer specialty hospital, such as Cancer Treatment Centers of America. Their guidelines for cancer treatment during this pandemic are far different than Mayo. Said differently, you are unlikely to see a delay in treatment.

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@palstead

I was supposed to have MRI-brain in April to see whether a gamma knife procedure was effective but this followup has been canceled and not rescheduled. I also am due for followup CT scans to evaluate progression/stability of stage 4 tumors throughout my body. I wasn’t diagnosed that long ago and have only had one round of chemo so I am very anxious to know the status of my disease. It’s all been canceled and I am on pins and needles not knowing what to do next or when these checkups will even be scheduled. This is so very stressful.

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Does one of our Volunteer/Mentors know if these cancellations are in order to keep us safe, isolated at home, or are they to free up Medical Personnel? I've had my re-staging CT (due between March and May) approved by insurance but wondered if they would schedule it. I don't understand palstead's Brain MRI being cancelled. That would seem quite important. I know how these scans can cause much anxiety and no one wants to put them off any longer than we have to.

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@palstead

I was supposed to have MRI-brain in April to see whether a gamma knife procedure was effective but this followup has been canceled and not rescheduled. I also am due for followup CT scans to evaluate progression/stability of stage 4 tumors throughout my body. I wasn’t diagnosed that long ago and have only had one round of chemo so I am very anxious to know the status of my disease. It’s all been canceled and I am on pins and needles not knowing what to do next or when these checkups will even be scheduled. This is so very stressful.

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Hang in there – we are with you in thought- distract yourself as best you can- meditate/ read/ garden-coloring book- something. It’s hard and my issues are less than yours – we are in this together. Distract the mind-

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@mom23boys

Does one of our Volunteer/Mentors know if these cancellations are in order to keep us safe, isolated at home, or are they to free up Medical Personnel? I've had my re-staging CT (due between March and May) approved by insurance but wondered if they would schedule it. I don't understand palstead's Brain MRI being cancelled. That would seem quite important. I know how these scans can cause much anxiety and no one wants to put them off any longer than we have to.

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I think your question is a very good one.

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@mom23boys

Does one of our Volunteer/Mentors know if these cancellations are in order to keep us safe, isolated at home, or are they to free up Medical Personnel? I've had my re-staging CT (due between March and May) approved by insurance but wondered if they would schedule it. I don't understand palstead's Brain MRI being cancelled. That would seem quite important. I know how these scans can cause much anxiety and no one wants to put them off any longer than we have to.

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It is very distressing to have appointments postponed, especially without a reschedule date. At Mayo Clinic followup appointments are being either postponed or shifted to a tele-consult if no imaging is necessary.

@mom23boys to answer your question about why. You're right, it is to keep people safe and isolated at home, and to reduce the number of people in wait rooms and lobby areas to support social distancing for patients and staff. New dates will be scheduled as soon as possible. I encourage anyone who is experiencing high levels of anxiety to post a message to their team on the patient portal.
– Patient Online Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Your cancer care team can review your case and explain why the delay was chosen as the option for the moment. Please let them know if you need to speak with a social worker or therapist.

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@colleenyoung

It is very distressing to have appointments postponed, especially without a reschedule date. At Mayo Clinic followup appointments are being either postponed or shifted to a tele-consult if no imaging is necessary.

@mom23boys to answer your question about why. You're right, it is to keep people safe and isolated at home, and to reduce the number of people in wait rooms and lobby areas to support social distancing for patients and staff. New dates will be scheduled as soon as possible. I encourage anyone who is experiencing high levels of anxiety to post a message to their team on the patient portal.
– Patient Online Services https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Your cancer care team can review your case and explain why the delay was chosen as the option for the moment. Please let them know if you need to speak with a social worker or therapist.

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Teleconsult would be very welcome in my family. Why risk going in to the point of care if information could be relayed through telemedicine technology. I can understand if providers don't want to delivery bad news over the audio/visual interaction. OTOH, it is also distressful to have to go in to a public place right now.

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@devehf

My stepmom went for an MRI for her brain tumor at Mayo Florida today and she was not provided with a mask. Here is my current thinking. Masks should be on the people who are coughing and sneezing, have undiagnosed fever, or test positive. There doesn't appear to be strong evidence that wearing a mask keeps you from getting the virus, unless you are providing care to a positive patient, which I am not. I wonder though, for an immunocompromised patient at the hospital, it probably couldn’t hurt to wear a mask, but not just any mask, it has to be N95 which should probably be reserved for treating providers. Hopefully Mayo will keep patients at a safe distance from one another, and screen and isolate any patients who might be infected. Hand washing and distancing are still more important than anything else we can do. I will try to make sure my family members don’t touch things at the hospital and don’t touch our faces. I'm also wondering if gloves are a good idea, even if only to remind us not to touch our faces and eyes.

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@devehf, you're quite right that N95 masks being reserved for health care providers. In some treatment areas, regular masks may be available if you ask at check-in.

– COVID-19: When should you wear a face mask? https://newsnetwork.mayoclinic.org/discussion/covid-19-when-should-you-wear-a-face-mask/

To be effective, the mask must be put on and taken off correctly. @zeiracorp shared videos of how in this discussion:
– Donning and Removal of PPE https://connect.mayoclinic.org/discussion/donning-and-removal-of-ppe/

Dave and @seaspray, please let us know how things are working at Mayo Florida when you go for your appointments. It will be helpful for others to prepare, even if things are changing daily.

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@devehf

Teleconsult would be very welcome in my family. Why risk going in to the point of care if information could be relayed through telemedicine technology. I can understand if providers don't want to delivery bad news over the audio/visual interaction. OTOH, it is also distressful to have to go in to a public place right now.

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@devehf check with your parent's care providers if and when a teleconsult might be possible. You might also be interested in this discussion:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

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@colleenyoung

@devehf, you're quite right that N95 masks being reserved for health care providers. In some treatment areas, regular masks may be available if you ask at check-in.

– COVID-19: When should you wear a face mask? https://newsnetwork.mayoclinic.org/discussion/covid-19-when-should-you-wear-a-face-mask/

To be effective, the mask must be put on and taken off correctly. @zeiracorp shared videos of how in this discussion:
– Donning and Removal of PPE https://connect.mayoclinic.org/discussion/donning-and-removal-of-ppe/

Dave and @seaspray, please let us know how things are working at Mayo Florida when you go for your appointments. It will be helpful for others to prepare, even if things are changing daily.

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@colleenyoung
Great video on removing gloves! (I've been doing it wrong for the past several weeks… *sigh*) Thanks, Colleen.

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