How to change oncologist

vagabond

Long story but I was diagnosed with RCC in my left kidney in 2013, after the removal of a 7 pound tumor, my left kidney and my spleen to which it was also attached  and a very long and painful recovery I was said to be "cured" HAHA. There was no follow up chemo or radiation and I was never asigned an oncologist I went to my surgeon, a urologist, for bloodwork evey 3 months and then every 6 months and eventually every year. On my last visit October of 2016 he did a urine sample and found blood in it. He then asked if I wanted to go ahead and do my chest xray and scan then or wait until next year. I chose to do it then because of the blood.  To my surprise they found that the cancer had returned in my right lung which was also filled with fluid and to spread out to operate on. I was immediatly sent to one of their oncologist who was very new to say the least. I was in total shock and had no idea what to do, they tried to do a biopsy but somehow missed and I ended up having to schedule a surgical biopsy and thoreosintisis which tured out to be even more painful than the previous kidney removal. They said the tube had caused nerve damage and should get better. Anyway after at least a month of waiting they finally decided to put me on votrient 800mg per day. I live in a somewhat small town and the clinic I attend is over 2 hours away, about a week after I started the Votrient my Blood Pressure went through the roof and my oncologist refused to admit that it was due to the drug and said I should go to a general practitioner. I have never had any medical problems until the cancer and had a bit of a problem finding a doctor close to home as it was not only around the holidays but not everyone wants to take on a cancer patient. For 2-3 months I had extreamly 200/110 BP at times which my oncologist knew about but did not seem to care, everytime I had a symptom he said my bloodwork was excellent.

I finally found a GP actually she is a nurse pracitioner but thank God for her. She is treating the blood pressure and also I had mentioned that I was losing my hair and was very tierd and winded a lot so she was going to do a thyroid test. I had also mentioned this to my oncologist and asked fo a thyroid test which he claimed to have done but I never heard  another word about it and that has been a month ago. Any way this past Thursday evening shortly before I take my votrient I suddenly spit up blood. I called my oncologist and got the answering service and finally an on call doctor called and said not to take it and to call the next morning. The next morning I had an appointment with my regular doctor at 10am for BP so I called the oncologist office at 8am after being put on hold for 30 minutes I finally gave up and left a message, they returned my call at 10am and said I should come in, or rather they left a message, I had my husband call them while I was in with my GP and tell them it would be at least two hours before I got there. They told him if I did not get there until 2:30 they would just send me to the ER so I should just go to my local ER. I had my GP call them to see what test she could order or what to check for and they just told her it was not votrient related and I should go to the ER. She did not want me to have to sit in the ER all day so she ordered bloodwork and a chest xray.

They had a problem getting the results because the hospital computer system went down but she finally got them today. I had called the oncologist nurse Friday and tried to make sense of why they would not see me she said if I was there in the morning they would have checked but since it would be after 2 they wanted me to go to the ER I said well what should I tell them my ER is in another state and are not familiar with you she refused to say what to check for but did say 3 seperate times that it was NOT Votrient related. I said well then I can go back to taking it and she said they can not say that untill I am evauated. What??? If they are so sure it is not Votrient then why can't I take it? So anyway I said why didn't you tell my doctor what to check for and she then said "your doctor said she was not going to treat the blood in your mouth" to which I responded that is a lie!! I was sitting at her desk when she called an heard everyword all she did was ask for guidance and they refused to help. Needless to say not much was accomplished then.

The real shocker was this morning when my doctor called and said she got the blood work and my thyroid was out of whack and called in a prescription. She also said my liver enzymes were elevated, they had just checked my blood the week before at the oncologist said  all they ever say is my blood work is excellent. Something did not sit right how could it be excellent one week and elevated the next and why had they not told me about my thyroid?

Up until this point I had trusted him, never completely but I did not think he was really bad, to be honest I was hoping to get well enough to find another doctor. So I got the bloodwork that they had done the week before and discovered that they had been doing a CBC and nothing else, not liver panel no kidney function. I was and am still LIVID!! This whole time I was worried sick about my one remaining kidney and they werent even checking it!! Since it is the weekend I could not call the doctors office, I called my insurance company and they have no record of a charge or claim for liver, kidney or thyroid check from them. How could they do that?? I know this is a very long rant but I can not tell you how betrayed I feel and am hoping someone can talk me off a ledge. I plan to put on my best acting face and go Monday morning and request a copy of my medical records, I do not want to risk having them mail them to me for I fear they will not based on the fact I am still waiting for them to mail me the money I overpaid them in 2013. I must get a new oncologist but in this rural area they are all mostly connected, and I am not sure what to do about meds while trying to find one. I know I do not need to go back to taking 800mg especially if it is harming my liver but I do not know the risk of taking nothing for what could be weeks. What kind of doctor doesnt even check you organ functions while giving you such a high dose of chemo? As a side not a few weeeks before the blood episode I broke out in a rash, again over the weekend, I called and they said to stop taing it until I saw the doctor. Called Monday morning and they said is the rash still there I said it is mostly gone and they said go back to taking 800mg and let us know if it comes back.

I seriously think they are trying to kill me! I know I am out of my head with anger and confussion and just disbelief. I welcome any advice as long as it is not in defense of this horrible facility and oncologist.

PS I apologize for any missprellling, my spell check is not working and i am not the best proof reader especially when angry.

Footstomper

Nurse Practitioner

You seem to trust her. Could you not ask her to refer you to another Oncologists? You seem tp live in the middle of nowhere, but is there not a teaching hospital in driving distance that has an Oncologist that you can phone. I was lucky in that I was referred to a very good oncologist in Baltimore. You will get a lot more people answering you.

Your experience sounds terrible. God knows cancer is bad enough, but you want to trust the treatment you are getting

Good luck

 

Footstomper

I'm gonna give you a boost

See if someone else reads your story

Dutch1

You've got a lot going on,

You've got a lot going on, that's for sure.  I'm sorry to hear of the circus that you've been enduring.  I can give a few opinions, but, I'm a retired CPA, not a medical professional.  I'm not sure what my opinions are worth as to your needs.

You have had a serious run-in with kidney cancer.  I would have expected that you would not have had any radiation or chemo immediately after surgery.  I would have expected periodic scans (quarterly) to check you for recurrence of the cancer -- not just blood work.  It sounds like you haven't had scans in the years following surgery.  Then, when your lungs get hit with the cancer, it seems strange to me that you are put on a heavy dose of Votrient (I'm on Votrient, too -- and not at your level because I can't take it) without careful monitoring.  It has been my experience that chemo (especially Votrient, in my experience) needs to checked on often.  So, a number of things are going on here which don't feel right to me.

In my opinion, you need to find two very good medical professionals:  an oncologist and a primary care doc.  The oncologist is the most important.  Your medical people need to know you and that doesn't happen when your care is spread out among 4 or 5 different providers.  Where you live poses a challenge in that it sounds like you don't have many choices when it comes to picking an oncologist.  Where are you located at?  Are there truly no options?  You really need to find one good, more local oncologist (maybe a local oncologist with an ability to tap into a higher-powered hospital/clinic to be used for second opinions) who can deal with most of your medical concerns.  That would help to organize your care and hopefully give you adequate monitoring. 

There has to be people around your area who can offer suggestions as to where to find such a medical provider.  Others in your area have run into cancer.  Tap into their experiences.  Look to the medical professional with whom you have the best relationship and ask him/her for recommendations.  My experience has been that medical professionals understand that patients sometimes need to be referred to another doc.  My oncologist has no problems with seeking second opinions.

I do wish you well.  You have been through a lot and you deserve to find some comfort in your situation.  My advice is a longer version of what Footstomper has to say.  I could have said "ditto" to his post and saved a lot of typing.

Dutch