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Is it possible?

AC1179
Posts: 19
Joined: Sep 2020

I originally posted in the head and neck cancer subforum because everything in Dr. Google initially had me thlinking I have a laryngeal problem but I don't know what's wrong and my symptoms, according to Dr. Google make me think maybe I fit in here. I refer to Dr. Google because real life doctors and medical care is lacking here at the moment... he 

I'm a 40, non-smoker, mom of 4. Since Feb 2020 I have had a sore throat. I thought I had a cold, waited for it to pass and by time I realized I wasn't getting better we had our first case here and everything, including my doctors office, shut down. My doctor went to telemed only-still is. We exchanged telemed calls at least every three weeks til June when she referred me to ENT after trying 3 rounds of antibiotics, every allergy pills on the market, nasal spray... My doctor did not suspect Covid since I did not have a fever, eventually ran bloodwork, checked for antibodies. All okay, no antibodies.  I felt generally unwell, run down and headaches and my breathing feels irritated in my laryngeal area when I breathe.  My throat feels raw, the skin is blanched inside with red spider veins. I've lost about 25 lbs without trying.   She eventually told me she thought it was time to see an ENT. I got into one who had been treating me for severe TMJ- couldn't open my mouth more than 1/2" for about a year prior to March.  The nurse ENT says she can't scope due to Covid and to try Nexium for a month and schedules a Barium Swallow. Medium does nothing and BS shows nothing.  Says I should see ENT Dr. Anothwr month wait. In meantime a gland pops out on my neck and they discover through a routine Mammo that I have cysts in my breast (could they be lymph nodes not cysts?). Also, I get early sepsis from a UTI supposably- urine was like tea with Leukocytes, Nitrites, Ketones, and Biliubin but no bacteria.  I had high white blood cells and lactic acid levels. IV antibiotic overnight. Dr never comes in to go over results or actually hands on examined me. I had svere sepsis (shock) in 2017. The initial ER doc spoke socially distanced and ordered tests. CT of my abdomen was inflamed and not able to see much and an ultrasound showed subendometrium cysts with decreased echogenicity.  A CBC with differential showed my Neutrophils were high,  90.9 (range 35-75), Neutrophil Absolute high, 10.2 (range 1.8-7.7) and my Lymphocutes were low 5.7 (range 16-52) and Lymphocyte Absolute low 0.6 (1.2-4.8).  The admitting doc doesnt examine me either and won't even enter the room.  Since they are grasping at straws that early sepsis was a UTI and he wasn't certain I told him about my chronic 6 month long sore throat, at this point 25# weight loss and now swollen lymph node that in two weeks ha doubled in size. He says "I am not interested in looking into it... see your ENT."  About another month, ENT has me take a Covid test prior to appointment and scopes me. I have a paralyzed right vocal cord. Neck CT.... showa the swollen node (8 mm) by the paritid gland and the paralyzed vocal cord and the report says paralyzed larynx. He orders a chest CT that shows a subpleural lymph node in he right upper lobe and minimal posterior dependent antelactisis).  He never tells me any of these findings. I see them on report. He just says after chest CT he wants me to go to Oncology to review case but then also says he wants to do exploratory surgery to see what's going on. I'm feeling awful and completely drained of energy, fatigued to my core... I also have had drnching night sweats several times a week.  My upper body but especially my neck up. I constantly feel hot but cold with chills at the same time.  At night I can't fall asleep because I ache all over and itch all over.  Lotion doesn't help. I take anxiety meds and that helps me get groggy and an allergy pill will sometimea take the edge off the itchiness. The growth on my neck is easily doubled since the CT scan two weeks ago. It was not painful before now it burna or aches quite often.  The left side of my neck feels tender at times now.  

My doctor wanted to do a thyroid study and see me back Monday. I called the office because I had not heard and the scheduler said she wasn't sure what he meant by thyroid study and was waiting to hear back from him before she could schedule me and to not expect to be seen next week like he wanted. How can this be?!?  He wanted the test done ASAP and to see me Monday. But here I am with jo appointments scheduled. This has been going on almost 8 months and I'm so tired and feel awful.  Motrin and Tylenol don't touch the pain. I have been running low grade fever off and on now for a couple weeks and this growth on my neck just keeps growing.  This is long but I am so scared that its taking too long to get answers and I can feel something isn't right.  The healthcare system seems so broken and the longer I wait for answer the more afraid I am of what happen when I get them. We are having a rise in cases again. Its not going to be a good time to be going in and out of the hospital.  Am I wrong to be worried that this may be Cancer and possibly Lymphoma?  I know I shouldn't Google but their hasn't been actual doctors to help and I have resorted to trying to gather as much info for the rare time I see a doctor. My Grandmother just passed in April from Leukemia- we think. She was getting Shots for pre-leukemia and the doctor stopped them with the covid shut down.  But she also had spot on her thyroid and lungs but she never wanted to be biopsied. I'm sorry this is so long I just wanted to provide as much of my story as possible to get advice on whether I am way off base on being worried about this. I can't talk to my Mom because I don't want to upset her after she just lost my Gram, my Dad hurries off the phone if I bring up my health problems, my husband I think is nervous and just wants to not talk about it til we know more.  But I need to prepare myself mentally for what may be coming and I just don't know. Thank you for reading my story. Any advice would be very much appreciated. 

Lym999
Posts: 34
Joined: Feb 2020

 

i understand what you are going through. I had a similar situation and not knowing can drive you crazy. There is nothing wrong with using Google. I do it all the time and even today still find out more and more about Lymphoma. Now back to your situation. Let me first say I am not a doctor but if you just want an opinion here is my take. The fact you said you had night sweats and low-grade fever along with a lump in your neck could possibly be Lymphoma. Has anyone ever mentioned Lymphoma to you? You really need a biopsy to see if it is Lymphoma or not. I am not sure why Lymphoma is always thought of as a last possible scenario. Lymphoma was never mentioned to me until I had a biopsy done. Hang in there! Hopefully, it isn't Lymphoma but if it is there are plenty of options available to cure it.

 

John

AC1179
Posts: 19
Joined: Sep 2020

No. My general doctor pretty much just seems disinterested. She will telehealth me and do lab  BBC work if I request but doesn't venture any ideas on testing. My ENT is scatter brained. He asked me three times in five minutes if he scoped me. Each time I said yes and found a paralyzed vocal cord. Each time I remind him of the weight loss (25 lb ... about 16% of my body weight), the sore throat for over 7 months, the night sweats and low grade fevers. He said last appointment after the chest CT he would refer me to Oncology but then at the next appointment decided to do more tests if his own. I keep asking him to biopsy the node on my neck as although it goes deeper in, it sticks right out. But he says he would just remove it entirely. It just seems a biopsy would be a mans of answers. He also says he didn't think the symptoms are related because he never saw a Lymph node swell from a mass or something along those lines. I am no doctor but I think that's the nature of lymph nodes.  He says he doesn't have any reason to think it's cancer to me... but suggests going to Oncology next and the weight loss, night sweats, low fever all scream cancer to me. I really can't wait to he t beyond his office. there is a break up of communication after you walk out of the room with him.  In it he stresses wanting things done urgently. Then his secretaries say they'll call with the appointments but then never  do And it takes days to hear back and then it's like it was some casual thing they were scheduling. 

Lym999
Posts: 34
Joined: Feb 2020

It probably isn't a bad idea to have an oncologist look at you. I also had weight loss with my Lymphoma along with a low-grade fever. My oncologist is very good at scheduling procedures while I am still in the office. He waists no time having tests done. A biopsy would explain very quickly whether you have Lymphoma or not. It took a few months after seeing my primary first to determine I had Lymphoma so your situation isn't unusual. How swelled up is the lump in your neck? Can you actually see it? 

I know the part of not knowing can be very hard especially when you know something isn't right. Hang in there!

 

AC1179
Posts: 19
Joined: Sep 2020

Yes, the lump is visible from a distance even to my family. It's probably almost an inch around now and stands out from my neck about a half inch or more. I can feel around it in the back side of my ear lobe and its harder to feel the size that goes towards the front of my ear towards my jaw bone. So I can't feel the entire thing but a large portion of it. it is larger daily it seems. When I first noticed it mid-August it was the size of a pea sticking out.  

AC1179
Posts: 19
Joined: Sep 2020

Yesterday I noticed one just starting to cond out on the other side. I havecsn appointment Oct 8th & 9th for a thyroid study. The ENT saud he needs to have that done before he can send the referral over. It just seems like it's already taken too long because if only telemed being available and it's just more waiting.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

AC,

What you have experienced is pathetic, and shows that doctors can be as stupid as anyone.   You have been denied legitimate care due to COVID idiocy.   The same thing has happened to me:   I was denied my annual follow-up PSA test (for former prostate cancer) for two months.   Why ?  The UROLOGISTS were at home.  BUT Urologists do not treat covid particulars, and could have been at work full-staffed, since they are in a new, separate, urology-only building.   They denied me a test FOR MY HEALTH !!   [Content removed by CSN Support Team]

My cousin is now in end-stage lung cancer, and home hospice.  She was diagnosed with advanced lung cancer around January, and has had virtually NO treatment (one immunotherapy) since.   Because "she might get COVID !!"   Bet your a^^, SHE will be a COVID death, since the shutting down of medical care is what killed her.  (She has never had covid.)    There is NO SUCH THING as "telemed."   There is PRETEND medicine via telemed, but the only thing it shares with a face-to-face appointment is the billing.

You should have reasonably been to see an ENT withn one month; it was totally justified.

I recommend you get health care somewhere else that actually sees and treats patients.  If there is no such facility in your area, try to get an appointment with a regional or national cancer center that is williing to treat patients.

This galls me, bad.  And the sheepal who think it is 'safer' gall me the most.

 

 1 person, sitting, text that says 'And Just like that, Nobody died of Natural causes in 2020'

AC1179
Posts: 19
Joined: Sep 2020

thus part of Covid has irritated me. Because I know there are SAFE ways they can go about practicing.  I understand their fear. I had sepsis in 2017 and was fearful to get Covid and get septic. ButnIngotnseptic from a UTI and there was not even IV poles, hospital beds or wheelchairs. I had a dentist walk me to CT And my IVs hung by a light using tourniquets. A blanket they gave me had brown crusty stuff in it. The nurse seem unphased when I told her. No doctors monitored me when I was overnight and one nurse came in with her mask under her nose and didnt wash her hands and used her nails to poke the foil wrapping if my medication. I'm a germaphobe (microbiologist prior to staying home it's my kids) and wanted to throw her out. But I was afraid how much worst the care would get. I fully get the fear of Covid because I am fearful of it. But I'm not in the line of work where I went In knowing I may be faced with something like this. I mean an ER doc should know he may be faced with Covid, Ebola, Sars... whatever. They are trained to work in those situations and if they completely do not want to standing in the doorway and saying they aren't interested in looking into it seems like an indication they should be in a different less risky sector of medicine. most places here are Covid testing for everything so why patients are being left behind I don't understand. My Grandmother.... she had been in Oxygen for years and supposably the "spot" was unchanging. Her PET scan lit up her trachea but she chose no biopsy and years passed. Her pre-leukemia she got her Pro-Crit shots for and was doing good. Occasionally she would heed a blood transfusion and did three weeks before Covid and she was looking good. March 16th I took her groceries and supplies so she wouldn't have to go out unless absolutely necessary for doctors appointments. The day before I got the call from my Mom about hospice starting, I spoke to my Grabdmother on the phone and she was laughing and joking that she couldn't see because she missed her cataract appointment and she couldn't hear because her hearing aid broke. Her big complaints. The next day I learn she has Cancer all over (she didn't know at this point), the doctors are stopping her shots. She died three weeks later. I have no doubt that the small Hem/Onc practice had to limit patients because of spacing them out and she maybe would still be here. Maybe it's hopeful thinking but she was good til they abruptly ended her shots. So I blame Covid and the downfall of the healthcare system. I fully believe Covid is a problem but Doctors should be able to figure a safe way To treat patients.  Maybe it's an excuse. I don't know.  Hopefully I can get in to someone soon. Most likely it will be the oncology practice my Gram was dropped from and I don't know how I feel about that. Thank actually was a patient with th hemetiology for a bleeding disorder til I canceled a elective surgery I had scheduled because I didn't want to risk it with my history of sepsis. Even though I canceled a couple weeks before my appointment they booted me from their practice. if it is Cancer I think I will have To go someplace outside my local area. even though we have a cancer center they seem very general. I just wish I could get answers and one doctor to just listen and thiink It through. Thanks for the response. I'm sorry you've got the run around because of Covid too. 

Nonnib24
Posts: 2
Joined: Oct 2020

 OMG I realize completely how unfairly we all got treated if you were unfortunate enough to get cancer during Covid!  My  lump was in my groin and very obvious when I showered. Luckily I went to get it checked out before Covid got really huge. The surgical biopsy was needed and they rushed me into  scans then chemo. I guess it was pretty aggressive so please take the advice of another  writer who said get a biopsy ASAP!

AC1179
Posts: 19
Joined: Sep 2020

My ENT was frank with me and said he doesn't know how to diagnose me and he thinks the best person to is Oncology.  The referral with my case went in on Tuesday and Wednesday I got a call with an appointment time for this Friday.  I am glad they got me in quickly. I was worried it would take a weeks. Now hopefully they can diagnose me with whatever has been cooking for almost 8 months and fix the problem. 🙏. They aren't allowing family in with the patient so my husband can't go In with me. They did say Incould

facetime him while meeting with the doctor so I may do that but it may cause more of a distraction. IDK.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

It is tragic for our world, but many medical practicioners at all levels have become Establishmentarian:  whatever is said to them by any form of management is 'the right thing,' regardless of how absurd.     Doctors have been losing thier independence for many decades now, to Hospital conglomerates, to drug companies, and --most of all-- to insurance companies.  I can remember when most doctors operated independently, outside of any group.   They set their own hours, fees, testing -- everything.   This was called "hanging a shingle" (the same as for lawyers and accountants).     Today, there are virtually no independent doctors anywhere.    They simply smile and say the way things are are 'for the best.'   It is frightening to think they may actually believe their own nonesense.  I have had several doctors tell me personally and directly that medicine has been ruinned by lawyers and insurance carriers.  Huge numbers of doctors have retired in protest.   The remaining milktoast individuals are all we have left.

AC1179
Posts: 19
Joined: Sep 2020

It's awful the state of healthcare. I cannot believe how bad it is. My oldest boys had a pediatrician that was that old school doc. He would Get in the phone right away if we called the office with a question, didn't have nurses but did everything himself and it was on paper and he just truly cared.  We moved and I couldn't find anything like that level of caring and truly being in it for the good of his patients.  When our second son was born he actually came to the hospital at late evening because my son had a hematoma in his head and the nurse let him know. He came right down. The ped who my kids saw in the practice where we moved was nice and once I got through the red tape to her it was good but she retired. Now the new ped in the office is eh and it had a total Lack of caring feel to the practice. Makes me wish I continued and followed my career goals in college to medicine because it's so horrible. I don't know how one can have the interest to enter into medicine but then sit back and let it become a circus. 

ShadyGuy
Posts: 535
Joined: Jan 2017

with healthcare especially in this manufactured "pandemic". I am hoping this will go away or at least improve after the election. Another issue with my visits to a major cancer center is the political correctness run amok. I so wish they would just worry about healthcare instead of my ethnicity, gender preference , preferred pronoun etc. All that effort could be re-focused on helping patients instead of hiring counselors etc. Their job is to attend to my health and leave the rest to me. I think it is a real threat to quality healthcare.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3492
Joined: May 2012

I could not agree more.  When I went for my biopsy, the nurses were like robots.  Their only comments were regurg of what they had been programmed with.   Virtue Signaling and activism have supplanted medicine.   

I re-reviewed a book I had to study toward my philosophy degree this week, written by French philosopher Michele Foucault:    The Birth of the Clinic.   It reviews the emergence of modern doctor-patient relationships and medical delivery.   Explains concepts like the doctor-god figure, 'proper' behavior of a patient, deference, the forfeiture of dignity and privacy to the medical establishment, and so forth.   I love how it documents the way that medical records are a tool of control and manipulation.

I recommend it to all.  Note:  Foucault is from the hard left, and one of the leading French intellectuals of the 20th century.  Fascinating, seeing him make all of these mainstream and even conservative observations.

cansur18
Posts: 4
Joined: Jul 2020

Hello AC. Sounds like you have had a long wait to find out what the real problem is. I also had a long and winding road to finally find out what my problem was. Hope you were finally able to see the oncologist to get a good assessment. Keep us posted. Reu

 

 

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