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?

I had a liver transplant on 6-23-18. I was diagnosed with HCC and post transplant pathology revealed Cholangiocarcinoma as well. I am taking anti rejection drugs and one that has tumor shrinking properties. I have to do weekly labs to monitor my medication levels and blood work. I have been self quarantined in my truck and wear a mask and use a Clorox wipe to open the door and the kiosk. I cannot do my 90 day MRI scans and have cancelled all appointments except Telemedicine. I am quarantined to my house and will not go anywhere unless I know it is safe. I will resume regular appointments when I think it is safe. With my suppressed immune system COVID-19 would be fatal for me.

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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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So suddenly we've been kicked to the curb after being told with aggressive stage 4 prostate cancer, Gleason 10, I needed to have surgery immediately… And I'm supposed to not be anxious, meditate, and keep active and ignore the pain I'm experiencing. All this while in my state there are less than 300 cases, only 29 even hospitalized, 4 deaths (2 with previous chronic issues, 2 elderly) and abortions deemed essential. A little bitter… Yup

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@papabill

So suddenly we've been kicked to the curb after being told with aggressive stage 4 prostate cancer, Gleason 10, I needed to have surgery immediately… And I'm supposed to not be anxious, meditate, and keep active and ignore the pain I'm experiencing. All this while in my state there are less than 300 cases, only 29 even hospitalized, 4 deaths (2 with previous chronic issues, 2 elderly) and abortions deemed essential. A little bitter… Yup

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Oh no, where are you located? That is awful news, were you able to talk to your doctor or did you just get the delay notification by email? I'm so sorry. Hoping my husband doesn't get the same news two weeks from now related to his scheduled surgery, such an anxious time for all.

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@rmftucker

Unfortunately many things have not been taught in history. I am 84 and was 6 years old when WWII started. I vividly remember many things at that time. I remember being quarantined when I had scarlet fever in 1941. My unmarried aunt took care of me in an upstairs bedroom since my sister was only a few months old and my mother could not be with me. My father owned a threshing machine and since it was July with the oats were ready to harvest, he and grandfather had a "threshing ring" where they moved from farm to farm harvesting neighbors grain. Dinner was always served by the wife where they were working and they brought the meal outside to my dad and grandfather, instead of letting them eat in the house with the rest of the men. A sign would be put on your door QUANTEENED SCARLET FEVER and warning people to not enter and also red measles and a few other diseases that I can't remember.

Until 1953 when the vaccine was developed and a few years later, polio was very rampant in the summer time, so we didn't go anywhere. Several of the people living near us and a cousin of mine had this and were in "iron lungs" to help their breathing (probably a forerunner of the ventilators now. People who did recover were often paralyzed, or had other ongoing health problems the rest of their lives.

We are resilient and will get through this. Just be patient (a lacking attribute now) and we will get through this. Stay home and help each other when you can.

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Thank you for commenting on this. We need history talked about at times like this so people realize thinks could be worse.

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@papabill

So suddenly we've been kicked to the curb after being told with aggressive stage 4 prostate cancer, Gleason 10, I needed to have surgery immediately… And I'm supposed to not be anxious, meditate, and keep active and ignore the pain I'm experiencing. All this while in my state there are less than 300 cases, only 29 even hospitalized, 4 deaths (2 with previous chronic issues, 2 elderly) and abortions deemed essential. A little bitter… Yup

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@papabill
It's likely that your surgeon is unable to schedule any surgeries at the hospital/clinic, and nothing which s/he can do about it… but you still can contact your oncologist and request medication for the pain and anxiety, and request a tele-visit or phone visit for advice on how to cope. I strongly would encourage you to do so. You've been dealt a miserable hand to play, but I'm also betting that you will reach down deep and find the strength which you need to get through this unusual season.

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@fassbinder

Oh no, where are you located? That is awful news, were you able to talk to your doctor or did you just get the delay notification by email? I'm so sorry. Hoping my husband doesn't get the same news two weeks from now related to his scheduled surgery, such an anxious time for all.

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Saw my doctor… He indicated the urgency to get my prostate and all the surrounding lymph nodes removed. Requested robotic procedure for April 6. Hospital canceled it due to our governor's emergency decree for here in NM. Can't even get a response now from their message mychart system. Just left in limbo. Prayer is my safe place in this time of uncertainty… He's got this!

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@papabill

Saw my doctor… He indicated the urgency to get my prostate and all the surrounding lymph nodes removed. Requested robotic procedure for April 6. Hospital canceled it due to our governor's emergency decree for here in NM. Can't even get a response now from their message mychart system. Just left in limbo. Prayer is my safe place in this time of uncertainty… He's got this!

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@papabill– Welcome to Mayo Connect. Your situation is just terrible. I can't imagine not being able to be treated for my lung cancer if need be due to this virus. Decisions being made during this pandemic are very hard to accept. Life was so normal and all of a sudden we have a new one- no time to even get used to it. There are still so many questions about this virus that have yet been answered. I'm thinking that all energy is being focused on stopping the spread of COVID-19 and because it is killing a lot of doctors and nurses and putting the rest of us on hold. It's such a horrible situation for all of us.
Have you considered calling your Oncologist? How are you feeling? Are you in any pain?

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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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@mom23boys– Good morning. That's a great observation. I do believe that one of the reasons that we are being isolated is to protect us. But I also believe that it is so that other people are protected. Because of unreliable test results and lack of good tests too many people could be walking around infecting others. It's also a highly confusing time. It seems as if governmental administrators of our states don't have the proper training or resources to make medical decisions and there is also poor communications.
This just makes for a lack of accurate and science-based data and poor decisions.

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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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Today is day 2 at Mayo for me. Waiting in waiting room with 5 others scattered. No masks were worn by any is the doctors or technicians. They want me to have the vivid test when I finish with my radiation today. I have refused. I have not left the house in over 2 weeks and doubt anything I could have caught here would even show up yet. Better they give the test to the staff who has not been tested.

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No ma'am I'm reaching out on behalf of my beloved mother she's been battling this cancer for 2 years now in the roughest Journey but the strongest woman I've seen they've done tried to take her off of life support and she survived the doctors but she's unfortunately had, not all of them of course but a few were just seemingly trying to write her off and let her life expire every time they get doubt in my mom's help she comes back with a miracle it seems like can you please pretty please help my family? My mom has never gotten to do Holistics we can't afford it but I will borrow the money if I have to become a stripper which is a very scary to me someone with my shyness but I'm tired of seeing my mom not ready to go now and she has more to do here and we just haven't gotten the right Medical Treatments up he's I'm hoping it's not too late which I also know that it's never too late… . Love light and blessings to you all beautiful souls

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Thanks all. I've been asked to not comment further for a couple days by the admin on this page. Appreciate all the past comments and concern. Blessings.

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@seaspray

Today is day 2 at Mayo for me. Waiting in waiting room with 5 others scattered. No masks were worn by any is the doctors or technicians. They want me to have the vivid test when I finish with my radiation today. I have refused. I have not left the house in over 2 weeks and doubt anything I could have caught here would even show up yet. Better they give the test to the staff who has not been tested.

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If they are offering it, you should accept the testing since you are immune compromised, and they are looking out for your best interest!

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@ashleymiller8764

No ma'am I'm reaching out on behalf of my beloved mother she's been battling this cancer for 2 years now in the roughest Journey but the strongest woman I've seen they've done tried to take her off of life support and she survived the doctors but she's unfortunately had, not all of them of course but a few were just seemingly trying to write her off and let her life expire every time they get doubt in my mom's help she comes back with a miracle it seems like can you please pretty please help my family? My mom has never gotten to do Holistics we can't afford it but I will borrow the money if I have to become a stripper which is a very scary to me someone with my shyness but I'm tired of seeing my mom not ready to go now and she has more to do here and we just haven't gotten the right Medical Treatments up he's I'm hoping it's not too late which I also know that it's never too late… . Love light and blessings to you all beautiful souls

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@ashleymiller8764– Good morning Ashley. It must be awful to see your mom suffer from cancer for 2 years. What treatments is she having now? What have her treatments been? Is she on any medications?

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@papabill

Thanks all. I've been asked to not comment further for a couple days by the admin on this page. Appreciate all the past comments and concern. Blessings.

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@papabill Bill, Unbelievable, did they give you a reason why?

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@ashleymiller8764

No ma'am I'm reaching out on behalf of my beloved mother she's been battling this cancer for 2 years now in the roughest Journey but the strongest woman I've seen they've done tried to take her off of life support and she survived the doctors but she's unfortunately had, not all of them of course but a few were just seemingly trying to write her off and let her life expire every time they get doubt in my mom's help she comes back with a miracle it seems like can you please pretty please help my family? My mom has never gotten to do Holistics we can't afford it but I will borrow the money if I have to become a stripper which is a very scary to me someone with my shyness but I'm tired of seeing my mom not ready to go now and she has more to do here and we just haven't gotten the right Medical Treatments up he's I'm hoping it's not too late which I also know that it's never too late… . Love light and blessings to you all beautiful souls

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I'm so sorry for what you're going thru with your mother. I think we need to open up a discussion on how we feel we are treated sometimes by doctors. I'll be 1 year post-diagnosis for stage 4 breast cancer on 4-15. When the doc got my scans back showing it in my lungs and bones he called me. I told him from the start (he asked) if I want it "straight", no sugar-coating. But telling me that he'd try to get me 2 years threw me for a loop. Fortunately you can't tell I'm sick (maybe a little but not much-thinning hair). I don't think I feel different and I'm willing to fight like heck to stay on this earth. A little positivity would go a long way. You stand strong with your mom and I wish you all the best.

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