Wondering if anyone has an oncologist that acts as "gatekeeper" to make sure everything is done properly and by the right person. My cancer hospital works by separate clinics and I just went through being bounced around a lot because there isn't one oncologist to oversee everything - each clinic has its own oncologist. The GYN clinic found 2 hernias and 2 lesions on my liver when they did a CT to make sure the ovarian ca has not returned, but since they don't do livers there was no follow through. The ultimate complaint from them is that I am "too complicated." Yeah, well, I never asked for 5 primary cancers, and someone has to follow through, but I don't know who. My primary consistently sends me back to the cancer hospital, so she isn't the gatekeeper. The GYN clinic did finally agree to schedule an MRI, which is what they suggested as the next step in their summary - but it took weeks to get them to agree to schedule it. We are supposed to be our own advocates, yet we don't have medical degrees and we cannot just schedule an MRI on our own. Thinking of finding one oncologist who is gatekeeper, but don't know if that is how it works for most.
Oncologist Versus Clinics: Wondering if... - Lung Cancer Support
Lung Cancer Support
I am so sorry that you are going through all this. Unfortunately I don't have a real answer for you mainly because I have only had lung cancer. I can say that we live in a world of specialists. I have a PCP, a cardiologist, a pulmonologist. an oncologist who specializes in my 1 type of cancer, an orthopedic surgeon (he fixed my shoulder , did my hip replacement, and hopefully will give me a shot in that hip for my bursitis), a pain management doctor (who will give me that shot if my orthopedic won't), a general surgeon, and a thoracic surgeon who did both my LC surgeries. I have even had to see a sleep specialist.
My PCP oversees all my medical care, but let's the specialists do what they do best.
Maybe you can ask to get an oncologist with at least a general knowledge of your cancers, and have that person be the gatekeeper for your care. At the very least all your oncologists should be willing and able to work together, as your cancer care team. Each doing what they do best, but also communicate with each other in regards to your care.
But if any of my doctors thought I was "too complicated", I would be looking to replace them.
Thank you. I agree that a doctor who thinks I am too complicated needs to be changed. Just don't know where to go!
Do you have access to other cancer care hospitals or centers? Some insurance plans offer access to a medical care advisor, is that an option for you? Do you have access to any kind of palliative care?
If no other options, maybe ask someone from one of your other cancer care teams if they could give you some names? If no other options, maybe find another GYN doctor on your own to take over your care?
Do consider adding a palliative care doctor to your search. They have that extra education in managing medications and long term side effects of comorbidities. They will also check with you to make sure you’re getting treatment and the right testing done.
Hi I have put a call in to the Patient Advocate at the cancer hospital and hopefully she will be able to guide me through. Palliative care is a great idea!! One person needs to be in charge and coordinate and control everything. I try very hard to keep everything within 4 places - the cancer hospital, my primary doctors' group, the hospital that acts as the cancer hospital's emergency room and the lung cancer doc. Being "complicates" doesn't mean I should be allowed to fall through the cracks = guess it is up to me to make sure. It is overwhelming!
I agree with Denzie, Palliative (supportive) care would be a great option for you as well as a navigator/advocate. Many hospitals offer navigation but again, most are tumor specific. What a wonderful forum healthunlocked is to offer suggestions. Glad you are getting care for all your specific cancers however it does seem you need a dedicated quarterback for your oncology care. If you need to talk with us, call 1-800-298-2436 or email email@example.com.
I don’t utilize mine in this way, but my palliative care doctor would serve that role if I asked for that. I only have one primary cancer, so PC looks at my case as a whole person and only coordinates my lung oncologist and radiation oncologist.
Hi I think a palliative care doc may be the right choice. I've been fighting one cancer or anther since 2002, and understand that it is complicated, but that doesn't mean I should fall through the cracks. One person needs to be in charge and directing things. Praying Monday brings some answers.
I forgot to address the whole “too complicated “ remark. Cancer in and of itself is complicated and having FOUR types of cancer is super complicated....but that’s their job. To deal with the complications of cancer. I’ve heard something similar in the past because of having had brain cancer a decade before being diagnosed with the lung cancer and a doctor said to me “I think your case would be a little too complicated for me”. He was a general practitioner and he was right. Managing my care WAS too complicated for me. That wasn’t MY fault and he wasn’t meaning it as an insult. He knew his capabilities and stayed in his lane. Your doctors should do the same. If you’re too complicated for them then they need to send you to someone who can handle it. I’m hoping that it wasn’t meant literally and they were just a little overwhelmed by you having so many cancers. You have to feel comfortable and cared for. If you’re not getting that then start looking elsewhere. You got this either way. Good luck!
I have one Medical Oncologist who is in charge of all my cancer care, but that being said, I am dealing with Lung Cancer and Basal Cell Cancer, not several complex cancers like you. I can see where it could be very confusing, but I would think they should be ONE person who is following you for ALL your care, especially the cancer care.
I am very sorry that you've been faced with so many different types of cancer and many different physician's involved in your care.
I do have an PCP who can refer me to other specialists and I do see others, but they ALL also used the same Medical Computer systems and all my doctors can access all my records, including test and records. As for my cancer treatment, he keeps in touch and has access to all my tests/records,, but he lets my Oncologist handle all of that and only assists IF I want to be referred to a new doctor etc. He does not order any of the specialists tests like MRI's or scans. He can only order labs/xrays, but not more complex tests that are cancer related.
A Palliative CARE MD or team may be a great idea and I think that's very likely a good solutions. I hope it works out!
I wish you the very best and hope you find help! Another option my be a Nurse Navigator is your insurer or center offers that type of assistance.
I wish everyone was as lucky as me when it comes to their oncology team. I’m seen at the John Theurer Cancer Center in Hackensack NJ and my “gate keeper” is my thoracic oncologist. I also have a neuro oncologist, a radiation oncologist and a general oncologist. Dr Harper(gate keeper) oversees everything everyone does when it comes to my case. The Neuro just ordered a brain and cervical MRI and he sent my file back to Dr Harper so he stays in the loop. Each oncologist has their own “sleeve” in the cancer center and they all work together even though they have separate specialties. When one wants a test done they order it without needing approval from the big guy BUT....they always keep him informed. They compare notes and lab results and they make decisions together. I wish everyone could come to this facility as I believe they are the best. Maybe I’m biased because they took me from deaths door to NED. If you’re not comfortable with how you’re being handled then you should speak up and let them know. Doctors can be very brief and seemingly unfeeling but it’s usually just because they’re so busy trying to cure everyone. You can always ask for someone to be assigned to you as your liaison so when you have questions or problems, you go to them first. I have a research nurse since I was in the clinical trial for so long and I can email her any time any day for whatever I need. Surely there’s someone like that for you. I wish you well 😊😊😊