I was finally referred to a palliative team which also consisted of a pain specialist for my severe back pain which makes it almost impossible to walk a full block without crying and having to stop and lean against something. I do not drive so I have no choice but to walk. It go so bad that I basically did not leave my apt. bc the pain was getting so much worse. I started having to pay for car service to take me six long blocks even to get toilet paper bc I could not walk that far without stopping numerous times and having to lean against a wall or lamp post or fire hydrant (never lean on anyone's car in Brooklyn, that is for sure). My onco had called me at home and I said I am unable to manage the pain on my own anymore and I am walking on a thin thread and feel like I am going to totally snap bc I can't deal by myself with this pain. So she said she would refer me to palliative care.
I felt trapped in my apt. I was finally given an appt. with the pain specialist as I had been taking for almost two years (then for my tumor pain only) 800 mg. of ibuprofen. It just doesn't cover the pain anymore. She stated that they did not believe (she read this on the computer) that my back pain was from the two holes or the disc degeneration they seen but maybe from a pinched nerve. (I had even asked my onco for some kind of pain block for my spine because the pain was real). She said our pain specialists did not do that.
The pain specialist gave me 90 10 mgs. of percocet along with gabapentin (300 mgs. a night) along with a special cream to use on my back and on my breast where the tumor is.
For the first time in weeks after taking 1 percocet in the morning I was able to walk to the bus stop, take the bus to a busy shopping area and I walked for several blocks without pain and just the fact that I was able to go out and walk and not feel pain gave me hope again
Well, last week I had my appt. with my onco (shots, blood work, etc.) the regular monthly visit. I am usually brought to a room and sit there until she is finished with her prior patient. Usually they close the door but this time they did not. Usually I wait about 10-15 minutes and then see her. I was eager to tell her that I was able to go outside and walk and how good it felt to be able to do my own shopping (rather than order online.) Well, I sat in that room over an hour waiting for her.
I then seen her quickly walk by following a man I recognized from the website as being the Head of the Breast Cancer and the Cancer Center. I saw she looked upset and then, unbeknownst to them, they stopped a bit outside where I was sitting. She did not even notice I was in that room.
I could tell by the tone of his voice that he was angry. I tried to listen (can't help it) and heard him say "She is doing better than she was six months ago. She does not need to be given percocets." I realized almost immediately that they were more than likely talking about me since it was six months since my CT scan showed my breast cancer (which was in my lungs) had made holes in my spine.
She then came into my room (and looked very upset and stressed). She did not even apologize for the fact that I was waiting in there for over an hour. I tried to start to tell her how my pain specialist appt. went and what a big difference it made but she quickly just said oh...and then said I will tell the infusion dept. to give your shots immediately so you do not have to wait and get up and left and I'm sitting there thinking we did not even have a real appt. It was an odd kind of experience and I was wondering why is going on here.
I am almost 100% positive that he was reprimanding her for referring me to pain specialist and was upset that I was given percocets. I think she was upset by what he said to her and when I started to mention about my visit with the pain specialist, she kind of cut me off. I think she was reprimanded about me getting the percocets and that she had no time to compose her (she is a bit meek) and tell me that I will no longer be able to get them. I was also angry that I had waited over an hour to see her and yet did not even get a chance to talk with her.
I have another visit with the pain specialist next Wednesday (after my appt. with the nutritionist for an evaluation.) the pain specialist said she would see me that day bc obviously they cannot write refills and although it would be way too early, she would see me so that she could write a refill for the time I would be able to get the refill since she will be out of the country during that time for a seminar. I realize now and expect to be told on Wednesday by the pain specialist that she can no longer write me percocets. I had gotten on prescription from her. I am infuriated with the head of both these centers. I recently came across an article he wrote for some medical magazine in which he is trying to stop all opiod use even for advanced cancer patients. His article infuriated me and I am thinking of sending an anonymous letter to him personally. The part that makes me most angry is that he feels "this is his biggest accomplishment." How nice for him. I am now upset (I do not abuse them and actually try and take less than what is prescribed.) I am a grown woman and I hate that this one person is able to dictate what he THINKS should suffice for me. This is the piece of his article that made me angry. I had no idea that he also requires a list of any advanced breast cancer patients that are given opiates for their pain. I expect I will be told by on Wednesday that she is not allowed to prescribe me the percocets anymore. This is basically a snippet of his article (I underlined the parts that infuriate me:
"The group created the Enhanced Recovery After Surgery protocol, which it initially employed in the colorectal surgery space but then altered and applied to other areas of the hospital, including breast cancer surgery. The protocol is focused on mitigating opioid use but still effectively treating patients’ pain.
“We did a pilot study. We had some surgeons who were naysayers (My comment: Good for them for standing up to believing that all patients should not suffer because of the opiate abusers who rob and steal other people’s medication), and they stayed out of it, but that gave us a control group. We were able to show dramatically better pain scores and really [use] zero opioids,” Borgen said. “So, if you fast-forward now to 2019, we’ve just submitted a paper tracking 700 women who we’ve treated consecutively for their breast cancer without a single milligram of opioids being dispensed. I’m incredibly proud of that accomplishment."
Me: How nice that he is incredibly proud of that accomplishment considering he is not the one that has stage iv cancer, he has not spoken to me as a patient to see why I am feeling the pain bc HE believes I am doing "better than I was six months ago" without ever having to spoken to me. It wasn't until after I left (although I was a bit confused) that it was me who he was discussing and that he reprimanded my onco, who I think at the time was not composed enough to tell me what he told her (they did not realize the door was open thus she rushed me out without us even having the appt. that I sat there for an hour for.) Plus, her stupid male PA (who thinks he is a doctor but he is not) came into the room and sat down at the computer and said "Oh, the pain specialist gave you percocet" which just reinforced what I was thinking after I left was correct.
I now am going to hoard whatever I have left in case I need to go outside to do something. I am even starting physical therapy next week. I am not upset. I would prefer the physical therapy work. The pain in my back started out slow as a deep throbbing pain and was took the ibuprofen until the pain got progressive worse and the ibuprofen was not even touching the pain.
Sorry, I am so angry and upset by this man (who apparently requests a list of any advanced cancer patient on any type of opiate medication) that he gets to decide what my quality of life should be. I am considering sending him an anonymous letter bc I am so angry. I know what I am going to be told when I see the pain specialist on Wednesday of next week. I am infuriated and more than upset and feel badly for my oncologist. She did not prescribe them, the pain specialist did.
I am sorry. I know this is very long but I am upset that for a brief time I thought I was getting a better quality of life again (and I was some days cutting them in 1/2) bc I realize if I use every single day, my body will get used to it but I felt relief knowing if I wanted to go outside and walk or make plans, I could now get the pain relief and do the things I was unable to do. I cried all last night and now today, I am just angry.
This makes no sense. I myself was hesitant to use opiates as I heard all the horror stories. Therefore I was in pain. My family doctor and the Pallitive team all said the same thing - it makes zero sense to be in pain. Opiates were created for long term pain such as in cancer patients. They said you will not get the high that drug users get from them because you have active pain. They were right. I take hydromorphone cont twice and day for 2 years and I have been mostly pain free. They said having cancer is awful and If the only thing you can control is your pain then do it. Dont suffer needlessly.
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I would prefer not to but it seems that the decision is not up to me but this man who is in charge of all the oncos at both the breast cancer center and the cancer center so there is no higher up. I am infuriated. I expect the pain specialist just to tell me that she can no longer prescribe the percocets and that my onco will explain at my next visit.
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Can’t your family doctor prescribe pain meds.
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Because of all the new laws and restrictions and Govt. tracking of doctors who prescribe pain meds, my primary doctor does not prescribe opiate pain medication at all. I have been in many other doctors' offices plus seen pain management clinics where there are large signs that say WE DO NOT PRESCRIBE OPIATE MEDICATION. And even pharmacies with signs in the window that state WE DO NOT CARRY ANY OPIATE PAIN MEDICATION AT THIS PHARMACY.
There was a story about 7 years ago when a husband and wife, both junkies and into Oxycontin and other opiate types of drugs who who were going through withdrawal after not being able to buy them on the street anyway, so they robbed a small neighborhood pharmacy and killed the pharmacist, another worker behind the counter and two customers in the store just to steal opiate medication.
Killed four people just to get their hands on a bottles of those drugs.
Very few family doctors prescribe opiates at all. They will tell you to get them from whatever specialist you are seeing for the pain.
Even many pain management clinics in NY will state on their website WE DO NOT PRESCRIBE OPIATE MEDICATION.
I totally agree with you Sarcie. I took hydomorphone too before I had some radiation for pain management. At the moment I just take Tylenol but I see to be getting more pain in my back again so we will see what happens.
Wow. I would not only NOT be anonymous, but I would reach out to the hospital ombudsman if they have one, the head of the hospital and perhaps the American Cancer Society can offer a resource to address this. It sounds unbelievable and cruel. This “doctor” should be studying the efficacy of pain control and not be on a crusade to get rid of opioids entirely. Motrin??? I used to take 4 the first day or two of my period when I was young. What an ignorant approach to pain control. Wonder if he even has any clinical expertise in it.
LOL. Unfortunately he is the HEAD of all the doctors in both the breast cancer and cancer dept. He is the top Honcho. There is no one above him. He should at least speak to me as an individual than just looking at a computer screen and deciding.
It is his biggest accomplishment. That people should suffer needlessly because he wants to maintain this standing of being a non-opiate cancer center. Grrghh.
It is rated as the top cancer center in Brooklyn. It even has its own hospital and has many different related buildings in other areas. Like on Monday, I have my first physical therapy evaluation and it is a Maimonides joint and spine center with physical therapy also. And they have a surgical center at another location, other than the hospital. The hospital itself and its ER center has the worst ratings though.
I always way and choose facilities that are already within the "Maimonides family" since it is easier for them to look on computer and access my information as opposed to me having to get copies of all my records and sent over to a new place, have them review, etc., etc.
I can empathize. I had endometriosis. I support regulating opioid use but in a meaningful, clinically based way. Sounds like this doctor wants to make a name for himself but his mission is terribly misguided, unscientific and potentially cruel.
I did not expect them to write it for life (I am going for a physical therapy evaluation at their bone and spine center). I looked on Amazon for back braces but they looked like bullet proof vests and have to be on the outside of clothing.
But it scares me that when the end comes, what do they do then?
I now see (wondering why the pain specialist would even write percocet for me) if she knows how the cancer center and breast cancer center is. (Her office is located in the Cancer Center.
I now see that she was hired about six months ago. It's the damn head of both of the centers. I felt bad for my onco. She looked so stressed and like she was about to cry. She just referred me bc I was the one who complained that the 800 mg. of ibuprofen she has been giving me for two years is no longer working and this is new pain and that I could not manage on my own anymore and was getting tired of trying.
I go on Wednesday to see the pain specialist again. She was so good that she was going to see me early because they have to see you before each new prescription and that she would be out of town at a conference when I would be due.
I am glad I kind of know what to expect bc if I found out on Wednesday, I would be crying and getting all stressed like I did when I overheard the conversation.
I wish I could have heard more but I know it was about me because the the pa come in, look at the computer and said to me the pain specialist wrote you percocets so he must have heard the exchange between them also. You would think she was prescribing me heroin by the way he asked.
They are probably sending this new pain specialist to a seminar all about NOT prescribing opiates. At least I cried and got upset and anxious already so I kind of know what to expect and wont be blind-sided.
One our news stations does stories on issues like this and things get changed when appropriate, your issue MORE than appropriate. Do know what news station in your area does this? I would call them get this out there.
This is so incredibly wrong. You should not have to suffer needlessly when you are not an abuser. It does indeed sound like he is trying to make a name for himself at the expense and pain of the patients he claims to serve at his center. I would definitely discuss with someone at American Cancer Society and the ombudsman at the hospital. How ma y more has he hurt in this way. Wow
Yep endometriosis too... Only they didn’t have a name for it back then and didn’t really know what it was. Figured it all out when I kept having miscarriages.
Years ago (I am now 60) in the 1990s when I started having serious cramping problems and before the whole controlled substance my gyn used to write me 60 vicodin with two refills. That lasted over a year for me and it was a blessing bc I had always suffered with pain in the past but never said a word. I then mentioned I was taking like 6 tylenol at once (always figured anything over the counter was safe) and she told me that was a dangerous level and she wrote me the vicodin (never heard of it before) and it was like a miracle drug. One of them and I was not in pain anymore.
What an arrogant bastard he is!!!... how dare he override the prescription from another colleague who is the expert in pain relief and is treating you for that...has he ever been in pain?... I think not! He is cruel and uncaring and shouldn’t be in the profession
I think you should put in a formal complaint about his arrogance...he’ll just ignore an anonymous letter...I’ve met these sorts of people(usually men!) and whatever you say to them or argue about is a waste of time because they think/know that they’re right...’you cannot argue with ignorance’
Can you go to a different centre where there’s no arrogant dominant man telling people what they can and can’t do?...it’s making you unhappy to know you can’t have a treatment that works for your pain
Believe me I can’t do without my pain relief and life would be intolerant
Fortunately I can just ask for anything I want in UK so I request all my opiates online and they’re sent by my GP to the pharmacy
Sad part is that he is the TOP HONCHO. He is in charge of all the surgeons and oncologists at BOTH the Breast Cancer Center and Cancer Center and also makes all the protocols.
The only higher up over him would be God. Unfortunately, I do not want to make an appt. with God too soon!. I cried......when I got home and when I realized it was me he was talking about. I could see my onco was so upset and stressed that she could not even compose herself to have her appt. with me when I started to try to tell her about my palliative appt bc it was the first time I was seeing her since then. I don't think she had enough time to compose herself to tell me what is going to happen. And then for the PA to walk in and quickly turn on the computer and then look at me and say the pain specialist prescribed percocets for you....DUH. (As if she shot me up with heroin.)
I do not think the pain specialist can even go above him. I believe although she works as part of the palliative team at the cancer center I go to she also works in another section (far far from me) as part of their cancer center's palliative team so I do not believe she is per se a doctor of that specific cancer center that I go to but rather like a contractor that works at two different hospitals in that pain specialist area.
Just like the dumbass (excuse my language) plastic surgeon. He does not work for Maimonides but can do surgeries at their hospital. He made such a mess with my legs. Even another ER cited it. Yet when I go on my patient portal I see he wrote up a report that stated
"Patient was very grateful and thanked me for the work I did and for giving her guidance and encouragement during her procedure and recovery."
I printed that out because I never thanked him. I told him he did a terrible job, that his office never called me the next day to see how I was feeling (I had tunnels cut in my upper leg) and I had to go to emergency twice. I woke up in a pool of blood at the hospital. He was not there. I just remember screaming Pain, Pain and vaguely heard a nurse ask if I wanted Morphine and I just was yelling stop the pain. I must have been given the morphine and feel back asleep and was out of it and when I woke up she told me I could go home. I had nobody there and she didn't even try to help me out of the bed and I had loads of stitches. I looked at the wrapping on my leg and it was soaked in blood. I asked if she was going to change the wrapping and she asked Do you really want me to do that? I was like Yes...this is soaked in blood. (In my neighborhood, their hospital, is known as the hospital you walk into, but don't come back out.)
As a matter of fact, two days before I was scheduled to have the surgery at the hospital, I had an appt. with the plastic surgeon. A car service was driving me and we had to pass the hospital to get to the doctor's office. The driver (having no idea where I was going) said to me If you ever need surgery, never go to that hospital. They killed my father. He went in for a minor procedure and died. They killed him. (I didn't know whether to laugh or cry bc he had no idea I was having surgery there in two days.) I have told my onco no matter if I need any type of surgery, I am NEVER going to their hospital.
Who do you go to when it is the head honcho himself. The statement "It's my proudest accomplishment" just set me off. He is NOT in charge of other types of surgeons, but he is in charge of any surgeons that work in the cancer or breast cancer center.
I then had to go back like three times in a week because the stitches all came out, the pain was unbearable and he wanted to take ibuprofen (he had give me 30 5 m.g of percocet) that barely touched the pain.
I said I need more I am in extreme pain. He got annoyed and said definitely not. I told you that the recovery would be (his words) "excruciatingly painful" and I said yes you did, and I assumed you would help manage the pain.
He then started to go into the Do I know there is an opiate crisis in the US? I put my hand up (I was livid and his PA was also in the room) and I said Please don't talk to me anymore. I have a TV and I know how to read the news. Look at my leg...all the stitches came out. Look at the holes I have in my leg. I said fine, then I will go to the Maimonides ER and tell them look at what this doctor did to me and he is making me suffer. He suffered to try to talk again and I said I don't want to hear another word from you mouth (I was seriously ready to wobble over and slap him hard.)
I then was crying and said to the PA....I am not normally this crazy but I am in unbearable pain and he is allowing me to suffer. It is just as unethical to under medicate a patient and let them suffer in pain (when you can clearly see the reason of my pain and check the computer that the last time I was given opiate meds were like four years ago) than it is for a doctor that writes opiate meds without any reason or checking of the patient or checking to see if they are going doctor shopping.
I left there infuriated and in tears and by the time I got my home (It must have been his PA (female) who realized I was really in alot of pain and she could clearly see why) that I seen that another rx for 30 10 mg. of generic percocet was sent over to my pharmacy.)
I wound up again having to go to another ER (he refused to see me again and I was not looking for pain medication...I was looking to see why another cyst was starting to form over the surgical area that I had this invasive operation to avoid that from happening and then his PA said he said he cannot see you anymore so I wound up going to another ER where they cleaned out my leg and wrapped it.
Next time I went to my onco (who recommended him since she "knew" him and saw the size of the hole still in my leg. She said you should go back to Dr. Cohen for this. I said YOUR FRIEND refuses to see me so I had to go to another ER.
She then asked if she could take a photo and she was going to send it to him but she never mentioned it again.
Then on my patient portal I see he writes "That patient expressed her gratitude for my help and concern in alleviating her problem and helping her with her recovery with the least amount of pain as possible."
I could not delete or add anything to it. I just came across that. I am bringing to my next appointment. These doctors can just write these lies and they stick in the system without the patient verifying them. They have no idea what a _itch I can be. I want that statement removed from the system as I am going to say (and my onco knows) it is a total lie and a patient should be able to write her version of events.
Now, what happens towards the end. Are they going to let me lay at home alone in agony?
After reading your post I’m absolutely flabbergasted
The Hippocratic oath says that the doctor must “Do no harm” and it appears that this person is not practicing according to the oath he took
You can’t be expected to tolerate his behaviour...he appears to be sadistic and uncaring...I’m retired now but was a dentist so I know how to treat dental pain even though I’ve never experienced it myself...maybe he’s never suffered pain but he needs to listen and act on what the patients say
Some patients feel pain more than others and your extreme pain isn’t helping your recovery at all....you’re being made to feel helpless...you know what works but can’t access it which is disgraceful
There must be pain doctors who work privately/independently near where you live so I would suggest you seek one out...you don’t have to tolerate this crap from him.... seems as if he is so controlling that his staff are terrified of him so you need to go elsewhere for your pain prescription
What’s the point of all the research to produce a drug that works but not being prescribed...totally ridiculous
Sister, and yesssss warrior: My heart aches for you. See if you can get in contact with the administrator of the hospital, and also try to speak with a Social Worker, who can help you, and/or refer you to a Patient Advocate who can help you deal with these very difficult challenges. I pray God will open doors to pain free restoration/healing very soon. Amen! XoXoXoX
Hi,
There is no need to apologise about the length of your post or how you are feeling. This doctor is completely out of order. How dare he! Does he understand what it's like living with metastatic breast cancer and what it's like to live with pain? You are not a drug addict looking to use these drugs for a high, but so you can function and be pain-free. That is your right. I agree with what others have said about making a formal complaint against him. Don't do it anonymously, but make it clear it is coming from you. If I was there I would offer to go with you to lodge a complaint. This man sounds unbelievably cruel and for what reason? I hope something can be done about this doctor. He should not get away with this type of behaviour. Fight for your rights. You deserve nothing less.
Sophie
Just wow!!! I am appalled that this happened to you. I agree with the comments made here and go higher up with this.
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He is the higher up. He is the HEAD DOCTOR in charge of all oncos and protocols at both the Breast Cancer Center and the Cancer Center. The next higher up would be God and I got an appt. with him but, fortunately, I hope, not for quite some time
I am just scared towards the end how much pain will they let me be in. I am scheduled to go to physical therapy. I suggested a nerve block but was told by my onco the pain specialist does not do that.
There is a state medical board in New York. If this guy is allowing his ego to stand in the way of pain management for hundreds of cancer patients, he should be reported.
Andi! Your response hits the nail on the head!! Succinct and to the point! I wouldn’t waste time communicating my grievances with either the oncologist or her boss! Go straight to the medical board!! 👍👍
Is there a Medical Board or Chief of Staff maybe?
I know my onco. She would never tell me via email (she does not like anything in writing). Plus she is super meek. She did not write me the opiate medication. She sent me to the pain specialist bc they are supposed to take care of the pain. I will know for sure (but I know inside) when I go see the pain specialist on Wed. She previously mentioned that she would be out of country or town at some seminar so would not be around when I am due for a refill so she wanted to see me earlier this way I guess she could write the rx (bc they have to see you) and then have my pharmacy hold it until I am ready and able to get it.
I will know. The pain specialist will just say I cannot write it for you and you will have to wait for your next appt. with oncologist to tell you why. They have very strict protocols so once she says that I will know.
My onco (and I get it) needs her job so they must bow down to whatever he says. The pain specialist I believe works for two different cancer center, one far from where I live, so I think she works like a contractor so she has to abide by the rules.
But I plan on telling my onco then I want to speak to this man myself. If you don't hear from me after the end of March, that means I am in prison for verbally assaulting a head onco dept. head. It should be in the NY Times (Half serious).
WOW! This is just unbelievable! I'm so, so sorry for what you're dealing with! I agree with 100% with the others that this calls not for an anonymous letter but a report to this doc's superiors and I would cc: at least one other department/entity so that the recipients know that they cannot just lose the complaint. I would also caution you against playing down any uncertainty re: what you heard ('It was clear to me that they were discussing my case" vs. "not sure they were referring to me"); let them correct you, vs. giving them wiggle room. It sounds like this crazy doc is on a one man misguided crusade, with patients in need as his victims! By fighting this, you'll be doing a good service to countless other patients, too.
Good luck with it, and please do keep us posted...
I am sorry that this happened to you. I have to caution you tho that you really don’t know if they were talking about you. I hope they weren’t, but if they were I would wait to see what the pain specialist has to say. She must know how he feels but she ordered it anyway, so maybe she will stick up for you.
Your doctor may have reacted that way no matter who she was being reprimanded about so that is why I would say to wait and see. She wasn’t given any time to pull herself together before she saw you so it could have been anybody and she was still reacting.
I would still write the letter, but I would wait until after your appointment and know more. Whether it is anonymous or not, I’m not sure of which way you should go. It’s better to be completely up front with who you are, but if you think it will affect your care, then I’d stay anonymous. I might also send a copy of the letter to the Mayor and the Governor. They are the ones that hold the controls of statewide attempts to control opioids. Maybe even the local cancer society.
I will be anxious to know what happens Wednesday.
And...even if you have to travel further, I would look for a new cancer center.
A bit of information for you. Here is a list of all the leaders at Maimonides. maimonidesmed.org/about-us/.... Under senior management there is a Douglas Jablon who an executive Vice President and also the patient Relations Department person. He would be worth writing to. But after you talk to your pain specialist I would write a letter detailing your pain history and what has happened and sending it to ALL of the people on this list. I’m sure that there are people on this board who would help you with the letter. You want to be factual, and not rant ( but you can here!) and be clear about what you are trying to accomplish. Elaine
Hi, I’m so sorry for the terrible treatment you’re receiving from this doctor. Today I read a transcript from an interview hosted by the Washington Post a few months ago. One of the topics they covered was managing cancer pain. I am copying and pasting a very small snippet from this great interview.
MS. CUNNINGHAM: I'm Paige Winfield Cunningham, and we're talking about controlling cancer pain now with Dr. Mihir Kamdar, of Massachusetts General Hospital; And Dr. Robert Jason Yong, from Brigham and Women's Hospital.
MS. CUNNINGHAM: Do you see colleagues, your doctor colleagues, becoming more hesitant to prescribe opioids? I mean, do you feel like the pendulum has swung a little bit too much in the opposite direction?
We're now--you know, I've read reports of cancer patients being made to feel stigmatized for asking for this kind of pain relief.
DR. KAMDAR: Yeah, I think--again, it's a balance. I think a lot of the interventions that have come into play sort of on the legislative level, on the regulatory levels, have actually been really helpful as it relates to the opioid epidemic as a whole.
I think when we look specifically at cancer pain, again, we have to make sure--because there actually is data that patients will need these and actually can do well with them, which is different than sort of population studies of chronic non-cancer pain. We need to make sure that we maintain access for those patients.
Can you talk a little bit about kind of the range and what type of management is used most commonly?
DR. YONG: Yeah, absolutely. So, within that multidisciplinary, multimodal approach, within the specialties that deal with pharmacology, or medications, we also enact a multimodal approach to the patients.
So, we throw different classes of medications, opioids being one of those options, but not typically a first- or second-line agent. We'll often do the anti-inflammatory medication, such as the Motrins and Tylenols. We'll do anticonvulsants to help with some of that nerve-related pain. Some of the anti-depressants at low doses can help a lot with these nerve-related pains, as well. And then, we have a whole slow of local anesthetics and other adjuvants that we can use to try to, piece by piece, knock that patient's pain down, to make them more functional and improve their quality of life.
Opioids being one part of it--and it's a big piece that's getting a lot of attention. A lot of people treat it as a unimodal therapy and just escalate it beyond what is oftentimes standard of care for some of these other patients.
With cancer pain, it's considered in a separate bucket. So, if you're dealing with active cancer pain, it's separate from that question, then we have more leniency in trying to manage that patient's pain with opioids, and with all the other medications, as well. So, we're willing to kind of escalate it beyond where we would with other patients that deal with just regular, chronic pain.
So very sorry you have to deal with this on top of all else.
I agree with one of the others that you should send a letter or, if you feel comfortable enough, ask for an appointment with the head honcho. I should be firm but polite - he does have the upper hand and a huge ego so won’t take criticism easily.
Someone else did research and found various board members or others associated with the hospital and, as she suggested, I would certainly write all of them a concise letter explaining why you need the opioids. Probably don’t need to mention your overhearing conversation with your onco etc.
Again, so sorry for your pain and frustration and hope you can get this resolved.
Take care!
K
What an awful situation for you. These medical professionals chop and change as it suits them. So frustrating for us the patient. I was told by my GP that Ibuprofen is an anti inflammatory and Paracetamol is the pain killer. I also have severe lower back pain and pain from the Pelvis and hips. I can take both meds together but I try to lay off the Ibuprofen as it’s not good for the stomach lining. My GP offered Tramadol and Cocodamol. Both knock me for six so no thank you. My Oncologist has now offered Radiotherapy. I will wait to see how it goes. I really hope your problem gets resolved soon and your pain will be under control. Best wishes
you have every right to be upset. I have been angry about this ever since they started talking about the opioid problem and taking pain medicine away from people who really need it. my friend's brother had back surgery, BACK SURGERY, and they sent him home from the hospital WITHOUT pain medicine! When I heard about that, I couldn't believe these idiots thinking they were accomplishing something by denying people pain medicine who really need it. I had to vent too, as this really bothers me, it is so very wrong. Sorry to vent on your vent! I have also read that they have a cement for the bones, why can't they help you there and fill in those holes, pardon my ignorance. A friend of mine had back surgery last year, then she fell and thinks she caused some of the hardware to move and has been in pain since; her doctor has scheduled her for a nerve block, a day surgery type procedure. You should at least be a candidate for that, like you said. The whole reason behind palliative care is for the patient's comfort, so I don't think they will take away your pain meds, now that you are under that umbrella. I'm so sorry you were treated this way. God bless you and heal us all in Jesus name, amen! <3 xo
The govt. is putting so many different laws and restrictions on doctors prescribing opiate medication and they track doctors who prescribe it, that the doctors rather than having the govt. looking down on them would prefer to let a patient suffer for a bit, rather than them having to the do the paperwork or whatever.
I find it unbelievable that your brother had back surgery and they gave him no pain medication whatsoever at least during his recovery period. At least during the recovery period, so that he can relax and sleep and thus heal better.
It is getting to the point of being absurd. To me it is just as unethical for a doctor to under medicate a patient who has pain and proof of such pain (as back surgery or advanced cancer) than it is for a doctor who writes out pain prescriptions for patients with no viable source of pain just so that the doctor can defraud medicaid or make those patients who are just looking to get high pay in cash.
It was my friend's brother, and I wouldn't believe just anyone with such a claim either, however, she is retired law enforcement and a straight shooter <pardon the pun> so I do believe her. glad you are getting some relief and pray that it lasts and that you get the meds you need. I cannot imagine not being able to leave my house for hurting ....
PS He did get some pain management while in the hospital, just nothing when they sent him home still having drainage tubes, etc. and having been cut on.
Oh my gosh!!! I can't believe you are having to deal with this. If you write a letter you need to sign your name and say what is causing the pain. It is the Cancer Center's responsibility to make you as comfortable as possible. People don't tend to take unsigned letters seriously. Also, leave a way for them to contact you. Make the letter as concise and short as possible. Best wishes. Blessings Hannah
I take oxycocet and have for a couple of years now. I have never increased it. Just one in the morning and a Lyrica at bedtime gets me through the day. Like you I am then able to do daily tasks and walking. Can your local Cancer Association help with transport to another Cancer unit? Maybe the pain specialist will give you the Percocet anyhow. Hope that happens. Good luck. Don't be discouraged. Speak up and don't be afraid to say your name. You have no reason to hide your identity. Let other Cancer patients know what you are doing. There are probably others in your situation.
The cancer center I go to in Brooklyn, NY is rated as the best one with many awards. I already get free car service from Medicaid (I do not drive) to and from ALL doctor appointments. I doubt the pain specialist will be allowed to if advised by my onco not to prescribe it for me due to her BOSS saying it is not needed and is upset that I am being prescribed an opiate bc he is in charge and is advocating for no opiate drugs for any advanced cancer patients and he is "proud of his accomplishments" in this area. How nice for him.
I don't know other cancer patients there. I mean I go on different days. Sometimes I see some of the same people but now that I am at a Cancer Center, it is no longer just a center for people with breast cancer, but with all types of cancer.
I always go alone but most people have a family member with them so I rarely talk with anybody there. Not because I am unfriendly but because most, like I Mentioned, have a family member or friend with them already.
I would be scared (I admit it) to use my name as I feel I would then be "targeted" and may make more problems for my onco (and she didn't even prescribe them but I told her I could no longer manage the pain myself) so she referred to me palliative care.
It used to be that palliative care was done just about when a patient was ready for hospice but now they have studies that show palliative care, if done when a patient is already in treatment, is a better time to refer them and studies show that patients do better.
I would love to go to Sloan Kettering in NY where I live, (Brooklyn actually) but their NY location does not accept medicare or medicaid (and I have dual coverage of both). I am going to look for other options although the start of starting all over from scratch seems a bit overwhelming to me.
One person I know left Maimonides because she had my onco and found her a bit "flaky" LOL. But she had private insurance where she was able to go to Sloan Kettering which she loved. But not an option for me. I may see if other NY hospitals that have cancer departments in Manhattan accept Medicare/Medicaid patients that have good reviews.
I also kind of get that they are not going to continue to prescribe them until I pass away, but at least until I have some other way of controlling the back pain like a back brace that I can wear on the inside of my clothes.
I feel like I now have a time limit when I will have no percocets left and go right back to where I was so I feel like I have to save the small quantity I have left in case I do need to go out or want to attend an event for a special occasion which is crazy.
I do not even know the steps to getting another onco at another place. I have to research that. There is no point in asking for another onco at this place, but the Top Honcho guy is the one who wants to stop all opiate medication at both the breast and cancer center so I would have to totally leave the cancer center where I am now.
So sorry you are having this struggle over something so simple. I saw your next question. Yes, I am in Canada. My family doctor wanted to try and get me off of the oxycocet and asked me to try Lyrica. They are all worried about the epidemic of addiction. I did try. Not the same effect against the pain at all. However he never refused to give me the Oxycodone. So I do both as mentioned. One in the morning and one at night.
I get it that it is a struggle to start with a new team. I had to change oncologists 4 months ago. Not good. Went from a very good one to the same thing you are dealing with, Your family doctor might be able to help with the meds. You should have them.
Very very few primary doctors write opiates. They just refuse to and the laws constantly change. Even the pain specialist on the palliative team at my cancer center is legally (US law in 2020) allowed to write me ONE week's worth of meds if I had never been on percocet (I have in the past) or if I had not been prescribed percocet for three months. If so, they are legally only allowed to give a week's supply the FIRST time and then after that, I went back a week later, she was allowed to write me a month's supply.
No primary doctors in Brooklyn or even NY will write them any more for patients. They will tell you to go to a specialist for whatever is ailing you or an emergency room. Many doctors' offices and even various pain management centers in Brooklyn or NY will have large signs that state WE DO NOT PRESCRIBE OPIATE PAIN MEDICATION.
That is not the case here in Canada. It is closely monitored and I think they can tell right away if someone is abusing it. They probably wouldn't prescribe it to just any patient. And I have shown over time, that I don't abuse it.
Well I am happy you are able to get it. As you say, your quality of life goes up appreciatively when you have it. And they are monitoring you on a regular basis.
Thank you. Going to take a shower and rush to store before my medication wears off and then sit down and read. I appreciate you providing the link for me.
Not it is NOT his center. It has a big named facility here in Brooklyn with all types of other buildings in other location. Like on Monday, I am going to a joint and spine place that also has physical therapy and it is part of the Maimonides family. I always try and go to the Maimonides facilities (1) because they accept my dual coverage of medicare and medicaid and (2) they have instant access and permission to view my patient portal.
I am going to look into other places but I would not even know where to start. I worry now towards the end what kind of care they would actually give me.
Be sorry for nothing! You have every right to be angry. I am angry for you. Can you go to a different cancer center? You deserve to be cared for and need d to have your pain level tolerable so you can function.
I am glad you wrote. This is a safe space and we all need to vent sometimes.
I hope you will write a letter and I hope you sign your name and that you will copy it to the head of the hospital!
You have the right to be seen and heard as the whole person you are and to have every treatment available to you for pain management.
Just did some googling and now found this. Another doctor at [________}. Geez.
Over the past decade as many as 100,000 Americans have died from opioid overdoses and millions have become addicted to the drugs, said [name blanked out] MD, a New York psychiatrist and opioid addiction specialist who co-founded Physicians for Responsible Opioid Prescribing.
"This is an out of control epidemic, not caused by a virus or a bacteria," said [name blanked out' chairman of psychiatry at {_____________} Medical Center in New York. "This epidemic has been caused by a brilliant marketing campaign that dramatically changed the way physicians treat pain."
I am now surprised that this pain specialist even prescribed them to me in the first place knowing their policy. Maybe she realized that it would the only time she would be able to prescribe them to me so she got me 90 which I think is the limit a doctor can prescribe in one month.
There are other people there also. Not all of them have cancer. I assume some of them have had surgeries at the hospital and are there for relief from pain for that.
Well, sounds like he is the person to contact because he says he is advocating for responsible Opioid prescribing. That is what the pain management doctor was doing . He knew the policy but felt you required that medicine so gave it to you anyhow. Hope you can get some help from the other sources mentioned. And if they have a patient advocate at the centre then go there as well. I know all this is very tiring. And sometimes you just can't manage it all. I am mostly on my own. My family helps when they can. My husband is not well mentally or physically so he can't help. He needs more help then I do. I just want to say I understand your struggles. Keep your chin up. You will get there.
I think you should be able to take whatever it takes to keep your pain under control. I was also assigned to a palliative team for pain management. I was on hydromorphone before I had radiation for pain management.
Who do you report if it is the head honcho himself who is in charge of both the Breast Cancer Center and the Cancer Center who is implementing himself and feels it is his great accomplishment to make the Cancer Centers opiate free, even for advanced cancer patients.
My oncologist in Israel feels there is a certain amount of hysterics over opiates. There is no reason for you to bed in pain to the point you can't function. It was explained to me that if a person has no pain they can give a high but if you are in pain it is pain relief. I am certainly a witness to that,I twisted my back,could not lie down for almost two months because of excruciating pain. The procedure saved me along with as bother pain killer that I was directed to take to raise base line pain...and to take tyhr procecette when the pain got too much. That worked. A palliative care nurse that I feel was sent to me from Aboce,she wasn't on my case...explained everything and made sure I got the pain relief I needed. After radiation,back started to heal, and stopped taking the pain medication. No sign at all of repentance or addication whatsoever
Wishing you the best possible care,well being and recovery...for everyone!
It seems like nobody else but me at this darn award-winning cancer center has or is trying to implement a no-opiate policy, even for advanced cancer patients. Unfortunately, the HEAD of both the Breast Cancer Center and the Cancer Center is the one who is all for this. He said "it is his greatest accomplishment".
Sad that he is more worried and impressed of how he is seen in the medical community than worrying about the patients who are in pain. I do not expect to them on them forever but until we can figure out why my back is in such severe pain, that I can barely walk a few steps without having to stop and cry and lean on something. Hard when you live alone and don't drive either.
I just realized after looking it up on Linked.com that the pain specialist doctor has only worked at my Cancer Center for the palliative team for only six months. I am seeing her this Wednesday because she mentioned that when my next rx of percocets are due (which I can guarantee I will NOT be getting) that she said she will be out of the state attending a medical seminar. So she wanted to see me so that legally she could write the rx and have the pharmacy hold it until I am due for my next once since she will not be around. It just dawned on me that......
I am trying to find other methods but in in the interim, I am now going to sucked right back into not leaving my home because of the back pain. It is bad now to have advanced cancer. I am going to have to start searching for another place which is hard enough when dealing with this disease. They should not LUMP people who have documented advance cancer or other advance diseases with those who seek out the drug for recreational purposes.
{name is blanked out] is sending her to attend a week-long medical seminar. It will be like the movie The Stepford Wives. She will come back as a robotic doctor telling me "800 mg. of ibuprofen should be enough to relieve your pain."
I thought you will be seeing her before she travels....hopefully will work out for your best . Can a family doctor prescribe stronger drugs? Do you go alone to doctor's appointments.i usually do,but I think this time you should bring someone supportive who can back you up. You SHOULD NOT have to suffer like this. Have you had radiation to your back??
Is CBT an option,I didn't try it but others have suggested it does help the pain.
All the best,try keeping positive,it's a real challenge. But certainly go into meeting with clear positive energy,you are asking for something you deserve,and that the doctor will get it
..
Let me know how it works out....routing for you and everyone for the right treatment well being, and recovery
I can't stop thinking about your struggles. Just want to let you know about Visiting Nurses and the many volunteer organizations that provide companions in the home to help. They will also do grocery shopping or run errands if you are unable to.
The thought of you needing toilet paper and having to struggle to get it is just too much. I don't have a car either, so I know how hard and expensive it is for transportation.
Google help and organizations for metastatic breast cancer patients at home.
Maybe look for a support group at your cancer center so you have a place to meet other women so you are not so alone.
That is very sweet of you. I am waiting my for my car service that is taking me to my first physical therapy evaluation. I am going back to see the pain specialist on Wed (after first visiting for my first evaluation with the cancer nutritionist.)
I am kind of funny about having strangers in my appt. I have lived on my own with no roommates since I was 18 so I value my privacy. I found it hard enough when I had that surgery and I had to have a visiting nurse come every day to change the wound bandages bc I was unable to do it because of where it was.
I need to be independent for as long as I can
The pain specialist prescribed me besides gabapentin 90 10 mg. of percocets. I think that is why my onco got in trouble for referring me to palliative care but my back is so bad I can barely walk without tears in my eyes.
The pain specialist (who I just found out used to work in hospice) and I see she just started at the cancer center as a palliative pain specialist.
She told me that she would be out of town attending a medical seminar so she wanted me to have a visit with her so that she could write the next rx for the percocets and have my pharmacy hold it until I am legally able to get it and need it. She has to see me in person every time and she will be out of town at this medical seminar at the time I should be done with what I have.
So I found this out after wondering if she worked there why she prescribed me percocet if this head honcho is so gung how about NOT prescribing opiate pain medication EVEN for advanced cancer patients. That is how I found out she has been there only six months.
And then it dawned on me that they are sending her to a seminar for sure. She will come back like a robotic doctor (like in the movies The Stepford Wives) and will no be saying "800 mg. of ibuprofen should suffice." They will brainwash her at that seminar to go along with their no opiate policy. She will come back as a different doctor.
I expect to be told that she cannot write me another rx for the percocets (which I do not expect for life but until we can figure out why I am in such pain and which allows me to go out when I need to) and that she will not be able to tell me why, but that my onco will tell me at my next visit.
That is what I am expecting. Crazy...even with stage iv advanced cancer patients, they are against writing an opiate rx even for a short period of time. I hope this physical therapy evaluation goes well bc I can't go back to not being able to leave my house bc I can only walk a few feet because my back starts.
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