Anyone Else Facing Treatment Obstacles Due to Coronavirus? Stephenson Cancer Center Would Not See Me

OKCnative

I'm three years post treatment for stage three SCC head and neck, base of tongue, HPV related.

It has always been instilled in me during treatment not to let my guard down and to make sure I'm doing my followup appointments because this sort of cancer has a tendency to return within 5 years.

Well, I had a 6 month checkup scheduled with Stephenson Cancer Center in OKC.

I received a call about the appointment and was told they were not doing office visits due to Coronavirus, but that they would set up a telephone call with my oncologist. I was like "WTH?" and told the nurse that was unacceptable as the doctor cannot look for signs of a reoccurrence of my cancer from a phone call. I also told the nurse my prescription for my saliva promoting pills had not been renewed by the cancer center and nobody had called me about chest scans I am supposed to be having.

I get a call back several days later. They are still trying to setup a telephone conference and have no idea when they will start seeing patients again. I repeated that this was unacceptable and i wanted to speak to the doctor about why they are not seeing patients. I also pointed out that Stephenson Cancer Center had still not called my pharmacy to have my saliva pills refilled and I was out and that I still knew nothing about my scans.

The nurse manager got very rude at that point and kept talking over me. And telling me it takes time to get prescriptions re-authorized and she didn't know anything about my scans.

I repeated that this was unacceptable and that I would be having my followup treatment handled by my ENT doctor, since he originally diagnosed my cancer AND was currently seeing patients AND agreed I needed to be seen in person, my nodes felt and my throat scoped.

A week later I get a certified letter from Stephenson Cancer Center stating that I had voluntarily terminated my relationship with their center and I could come get my medical records.

UNBELEIVABLE! 

First, I'm sick and tired of everyone using CV-19 as an excuse not to do their jobs. There are plenty of precautions that can be put in place so that you can still see patients. 

My ENT never stopped seeing patients.

Their process is simple: Call and make an appointment. They ask you several questions about travel, your health etc. When you arrive you cannot enter the office until a nurse takes your temperature and makes certain you are wearing a face mask properly. They limit the number of appointments in a given day and are constantly cleaning. It's not that difficult!

The ENT did a complete exam with scoping. He said he couldn't use numbing spray because of the aerosol nature of the spray. Which I understood.

THIS is how you modify your practice to fulfill your duty to your patients.

Anyone else faced Coronavirus obstacles while trying to handle your health needs related to your head and neck cancer?

ERomanO

I'll find out next week when

I'll find out next week when I go for my official 2 year checkup.  I got a reminder yesterday in MyChart and expected there to be some guidelines relating to CV-19, but nothing.  My girfriend says you have to wear a mask to enter the hospital.  If you don't have one they'll give you one. That's all I know right now.

wbcgaruss

Well!

I am amazed that the place you had your cancer would actually send you a certified letter nonetheless terminating any relationship you had with them. You called with justifiable concerns as far as I can see and we as cancer patients need proper follow up so as if our cancer is returning or metastasizing we want to know as soon as possible to get it treated again when it is as small as possible. And as far as you coming to get your records I think they should send them to you since they are the ones terminating the relationship not you picking them up. It seems the nurse manager did not like you questioning their protocol in the Covid-19 situation and somehow went to the point of terminating a patient relationship. It seems out of whack unless you were really hard on them to do that to a patient. And one more thing I think they should be a little more tolerant to patients because cancer can be a very emotional and life-changing experience as we on this forum very well know. I would say call your main care team and ask for a supervisor and ask and discuss the termination because after all, you wanted to get follow-ups and continuing care there. I would try to talk to someone calmly and smooth this out and find out what happened as it seems a little extreme. I also say give the medical folks a bit of leeway also as I am sure emotions and fears are running high in the medical community nowadays. Lastly, I agree I don't think when it comes to cancer follow-ups that it can be covered properly by a video call usually but don't get me wrong I am sure some follow-ups could be done that way depending on the situation.

I myself have been affected by this Covid-19 situation. After recently going through my third bout with cancer I was to have my feeding tube removed April 7, 2020. I received a call about a week previous to that to tell me regional GI was canceling all non-emergency appointments and my appointment to have my feeding tube was canceled and as soon as they start regular scheduling again they will call me and set up an appointment. Also, I have granulated tissue under my feeding tube base and went to wound care about a month before the scheduled feeding tube removal and the granulation was treated with Silver Nitrate and I was given a prescription of Mesalt patches to put on it to continue to reduce it as it is very sensitive, painful if rubbed too hard while cleaning and bleeds very easily. I hoped this would make the removal less painful. Afterwhile in the meantime, the area seems aggravated so I quit the Mesalt patches for awhile. Any way since appointment canceled the granulation has not gone away and I contacted the wound center for advice since I don't know when I will get this thing out. So what happened was they requested I send them a picture of my feeding tube area through my health account and I installed an app on my phone and had a video conference with my wound physician and we discussed it and it was recommended I continue with the Mesalt patches till the feeding tube comes out, that is how the Covid-19 affected me and my situation-Take Care-God Bless.

ProustLover

Deja vu all over again

Our recent experience during covid times was unexpectedly good.  Folks who've been on the forum for a while know that my husband has been through a lot with tongue cancer, late recurrence in neck, aggressive treatments, and then problems with dysplasia and candida, then a new noninvasive cancer on tongue last year that required laser ablation.  

Things were going pretty well for about 6 months.  It was such a relief to finally catch our breaths.  Then, about three weeks ago, another spot became sore under his tongue.  I couldn't believe how quickly the dental oncologist got him in, despite the quarantine, and ended up taking a biopsy.  It was deja vu all over again...severe dysplasia...not cancer, but getting there fast.  Within 10 days of seeing the surgeon, they had done all testing, including covid testing, and another laser ablation had all taken place. 

I am so thankful for the quick response he received, and wish it could be like that for everyone needing answers and help.  My hope now is that his poor tongue heals more quickly than it has in the past, and that we'll get a long breathing spell.   

Oh yeah...one interesting thing...the doctor said in passing that there is some speculation about a third virus, in addition to HPV and Epstein-Barr that may be implicated in certain oral cancers, especially tongue cancer.  I will ask him more when the opportunity presents.

Take care, everyone.  Thanks for being there.

wbcgaruss

Follow Up

This is just a short follow up. One more thing was I was supposed to do follow up swallow exercise training with the speech therapist. Although I can swallow and am eating well the process is certainly not as fast as pre-cancer. My eating and swallowing is a much slower process but no problem I am just glad I can eat. I have to chew much more. The speech therapist was there for my swallow test and said that she sees room for improvement with swallowing exercises. But due to Covid-19, they are not seeing patients for this but she feels they will probably start again sometime in June. I could have a video appointment with her but I am going to wait till I can get a regular appointment.

One thing I am scheduled locally for is a CAT scan with dye for my 3 months follow up after radiation on the 26th of this month so that should be interesting to see what protocol I will have to go through to get that done.

So everyone take care, be safe, Take Care-God Bless

wbcgaruss

Logan51 said:

CT last Friday

I just had a lower back & pelvis CT this past Friday, without any hassles, at one of the 6 Hospitals in my Metro area, Russ. Because of my FT I could not do the Barium drink- had to mix a liquid with 37% Iodine and water to pour into FT 2 hours before. Then the Nurse shot the dye in me when on the table. 2 PM, and there were very few people to be seen. 

My biggest complaint? Between laying down on the table with my head on a pillow for the time, and getting up= messed up my combover!

Dave Sounds Like

Everything went pretty smoothly for you. One way or another you got the dye/additive in you needed for the scan. And the comb-over is an easy fix. I don't have enough for a comb-over anymore so you're still one step ahead of me. Glad you are doing well and dealing with all your challenges-Take Care-God Bless

Logan51

CT last Friday

I just had a lower back & pelvis CT this past Friday, without any hassles, at one of the 6 Hospitals in my Metro area, Russ. Because of my FT I could not do the Barium drink- had to mix a liquid with 37% Iodine and water to pour into FT 2 hours before. Then the Nurse shot the dye in me when on the table. 2 PM, and there were very few people to be seen. 

My biggest complaint? Between laying down on the table with my head on a pillow for the time, and getting up= messed up my combover!

Logan51

Russ

Thanks for correcting my spelling on my hair condition/situation! The dash mark is sometimes used, but combining both words is not done. 

wbcgaruss

Logan51 said:

Russ

Thanks for correcting my spelling on my hair condition/situation! The dash mark is sometimes used, but combining both words is not done. 

The Only Reason I can Do That

Is because I am using a program called Grammarly. It is free unless you want to buy a more advanced version. It shows you what needs to be corrected. Check it out I really like it and it works on other web sites and emails, etc. I think ProustLover put me wise to it-Take Care-God Bless

Logan51

OKC

I agree 100% with you and your being angry. When it comes to C, everybody knows the sooner caught the far better, and the same goes with a return bout with it.

HobbsDoggy

Seeing Me

While I have active cancer now they found it from my regular check up.  There must be something else going on as where I live if you need cancer check ups they are doing them in person.