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GYNs won't do a visit

zsazsa1
Posts: 553
Joined: Oct 2018

I started to lose weight the week before I began the rituximab for the indolent lymphoma.  BTW, my counts improved greatly after the first dose, so clearly, it works for me.  So naturally, my first thought, when it became evident yesterday that I really was losing weight, was that I had better start with an internal check, to look for recurrence.

No one in the gyn onc group at Hartford would see me.  They are too afraid of a patient coming in with coronavirus.  I explained that I am not sick, and have been completely self-isolated at home.  Still, they would not see me.  Same response from Yale.

I understand completely.  All medical personnel are putting their lives at risk to see patients, from the senior attending in the ER right down to the lowest level janitor there.  I would have had a tough time choosing how to handle it, since I was in primary care, and would have been putting my life on the line to continue to see patients.  But to me, this seems excessive.  This is not an infectious disease risk, I'm not sick, I'm self-isolating, if I go anywhere, I'm wearing an N-95 mask and gloves, and I do have a serious life-threatening malignancy.  The receptionist and tech whom I dealt with at the oncology lab are still working, how can the GYN oncs simply say that they're not seeing patients?  I mean, weight loss is a significant sign, and the first thing to do is to check for a local recurrence with an internal exam!

It's a bad time to be sick.

MAbound
Posts: 1108
Joined: Jun 2016

This is so scary and just crazy to just stop treating anything other than coronavirus. It will just result in a lot of collateral suffering and pump up the death toll. In some ways I can understand it because doctors offices could be prime locations to pick up an infection. Oncology patients are at particular risk. It's a real Catch-22, but you'd think there'd be some commons sense involved to set limits and make exceptions.

Do you have a back door to get past a receptionist to your oncologist, like a televisit? Have they abandoned their patient portal? I really don't see how they can close themselves off completely from people in the middle of treatment. They should still have some options.

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

I agree with MA. I don't consider this to be elective or nonurgent medical care. I wonder if there's any patient advocate position who could possibly help.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

It seems no one was prepared for a pandemic! I had to talk to my onc on Monday by phone. She prescribed the Megace/Tamoxifin for me. I have called Walgreen's daily to get. Today finally asked to speak to phram and she says there is no ok from onc for both meds. So, called the clinic and was on hold for 20 min. but finally spoke to nurse who is calling the pharm to see what the problem is. They have the scrip for both and meds in stock but cannot give to me??? I fear we are in for some rough months ahead as everyone tries to figure this out. ZZ, I hope you can be seen soon. You do not need this stress. Thinking of you as we battle on.

MAbound
Posts: 1108
Joined: Jun 2016

When I was on Megace, it had to come from a special compounding pharmacy rather than from my regular pharmacy (RiteAid). I don't know if that was a requirement from my insurance to cover it or an issue with a regular pharmacy. It was shipped to me at home in a mini cooler during the summer because it is very temperature sensitive and I had to be home to sign for each delivery. I don't know about Tamoxifin, though.

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CheeseQueen57
Posts: 936
Joined: Feb 2016

With me. I get both Megace and Tamoxifen at my usual pharmacy

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Not sure what the real problem was as the clerks I spoke to were clueless! However, I can email my doc and she got it all smoothed out and I can pick up tomorrow. It may just be that I am a new customer and not completely in the system but all good now. 

zsazsa1
Posts: 553
Joined: Oct 2018

I understand their fear.  But this is so low risk for them, and a significant issue for me.  They basically just pulled up the gangplank on patient care.

Forherself's picture
Forherself
Posts: 506
Joined: Jan 2019

Is a severe shortage of protective gear.  I think they are saving it all.   In Washington State our local Family Practice group is actually asking for dinations of masks and white lab coats gowns etc.   Not easy decisions to be made right now.  Especially in the bigger cities.  Providence hospital is even asking  for volunteer seamstresses to make masks.

 

jan9wils's picture
jan9wils
Posts: 152
Joined: Mar 2017

This sounds serious to me. I agree with MABound that you try to contact your Onc through the patient portal.

MoeKay
Posts: 320
Joined: Feb 2004

zsazsa, good luck in getting a response from your oncologist through the patient portal, a phone call, an email, a text, or whatever other method of communication you have at your disposal.  It's crazy that your oncologist would become unavailable while you are experiencing significant problems and in active treatment.  Your doctor has to provide you with some direction on what is in your best interests here. 

The issue you're experiencing was just discussed on the nightly news tonight.  See:

Cancer patients forced to delay treatment over coronavirus concerns

https://www.nbcnews.com/nightly-news/video/cancer-patients-forced-to-delay-treatment-over-coronavirus-concerns-81041989653

 

Anonymous user (not verified)

I would understand if they had talked with you on the phone about your weight loss, and then told you they thought ther risk to YOU was greater than not seeing you at this time.  But to reverse a doctors first importance is the patient and not THEMSELVES is really disgusting.  If you feel the weight loss is significant, please call all channels to talk with someone.  And if you continue to see these doctors in the future, really tell them how they abandoned you by not offering any contact.  Hugs Nancy

MAbound
Posts: 1108
Joined: Jun 2016

I don't know if I would be quite so harsh on the doctors. In terms of their calling to treat the sick and do no harm, one has to bear in mind what the loss of each one who dies from this virus would cost everyone in the long term. There aren't enough doctors, especially specialists such as the ones we need, to begin with. It takes an extrodinary person to have the gifts and the drive needed to become a doctor and they are not easily or quickly replaced. Their actions are not necessarily about self-preservation, but a safe-guard to make sure they are still around for the long term. 

The other point to consider is that their ability to continue treating with surgery, chemo, or radiation may not be the right way to go under current circumstances because of what it does to a person's immune system. Ours is a slow growing cancer, so suspending or delaying treatment may actually be the safer option to maximise the odds of survival. Hopefully, as everyone gets a better handle on this virus and PPE suppllies become more available, they'll have some ability to start prioritizing and treating patients for issues besides this virus. That can't happen quick enough, but in the meantime, I agree that it would help a lot if these doctor's didn't just abruptly cut everybody off to fend for themselves. There are options for remote care and they should be used.

zsazsa1
Posts: 553
Joined: Oct 2018

They offered me CT scans, but I had a normal PET/CT a month ago, as part of the workup for the lymphoma.  I really need to start with an internal exam, and since my entire household of 3  is on utter and complete isolation, and I would come in gloved and masked, it is absolutely NO risk to them to do an internal look.  Everything in medicine, and in life, is a risk/benefit issue.  We take a risk every time we drive anywhere, but the benefit of convenient and quick transportation outweighs the risk of an accident.  In this case, it appears that the GYN group decided that their infinitessimally  low risk of contracting coronavirus from me, outweighed the very significant risk to me of not finding a local recurrence early on.

It's called medical abandonment.  I'm stunned, to say the least.  Meanwhile, other medical workers at far, far greater risk keep on bravely going into work, heroes every one of them, from the attending physicians right down to the janitors.

I eat what I want, and weigh myself daily.  The weight loss seems to have stabilized, I hope, at about 5 lbs less than I was a week ago.  Hopefully, it's much ado about nothing, at least for me.

Stay safe, everyone, and STAY HOME!

barnyardgal
Posts: 273
Joined: Oct 2017

I'm so sorry. I understand the worry the health care workers have, but it does seem wrong in your situation. Can you do a video visit for starters? I was supposed to have a 3 month chrckup next week but since CT and blood work is fine my gyn onc is doing a video chat. 

zsazsa1
Posts: 553
Joined: Oct 2018

Ha ha ha!  Honestly, if I could get hold of a speculum, I would do just that!  And maybe I CAN get hold of a speculum.

zsazsa1
Posts: 553
Joined: Oct 2018

When I went in for a rituximab infusion, I also was seen by the nurse practitioner.  I explained to her the need for an internal exam, she called the GYN/ONC group, and they got me in today.  Normal internal exam.  So I can put the UPSC on the back burner, and concentrate on the splenic marginal zone lymphoma, which now is causing hemolytic anemia.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Thankful your focus can remain on the immediate issue.  Also thankful you were seen promptly!  

Molly110
Posts: 187
Joined: Oct 2019

What a relief that you got the exam you needed and that the UPSC can stay on the back burner.  I was shocked to read that you had trouble being seen when you had a serious concern. I know my care team is still seeing patients. I think about them and the women who are still in treatment so often and feel lucky that I finished chemo in January before COVID-19 hit the US hard. I have a bunch of post chemo questions for my gyn/onc and nurse practitioner, but since my questions aren't at all urgent, I decided to wait until the next time I have a check up. When everyone in the building is risking their lives, it doesn't feel right for me to ask them about hair regrowth. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1749
Joined: Jun 2015

Molly, if you are comfortable asking here..... Lots of ladies will gladly answer. Congrats on finishing treatment!  Now, be kind to yourself and give yourself time to heal.

Love and hugs,

Cindi

zsazsa1
Posts: 553
Joined: Oct 2018

Molly, the most important thing for you to do is to totally self-isolate, you and your household.  Get someone to drop off groceries for you.  No one in your household should go shopping, or come into contact with anyone else, other than in your household.

My last chemo was I think the last day of February.  By mid April, I had a significant 5 o'clock shadow with hairline look - I think that's when I stopped wearing hats.   Now, about 14 months after chemo, I'd say hair is about 6 inches.  At first it came in quite curly, but now it's just got its normal slight wave.  Pretty much same as it ever was.

Fridays Child
Posts: 204
Joined: Jul 2019

They told me my hair would probably come in white at first because the hair would be growing before the pigment woke up.  It wasn't 100% white but was a lot grayer than it had been before.  However, it got darker again and is now significantly darker than it was a year after finishing chemo.  There's a lot more pepper in my salt and pepper hair!

Molly110
Posts: 187
Joined: Oct 2019

Thanks for the info! I wrote a long answer, and then -- as has happened with me several times -- when I hit submit, the program wouldn't accept it and deleted my response. So frustrating, and not I need to go to bed.

 

Thanks again,

Molly

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