How to make my doctor consider other options ?!
Comments
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Hi. was diagnosed just recently.
Starting my Chemo treatment tomorrow. My physician wants me to take Taxol.
I have chatted with another doctor who said that Taxotere is also a common drug to be used. I went back to my doctor and she was very unhappy with the fact I talked to other doctors. But on the other hand - she told me that both drugs are fine and its a "trial and error" process where we need to find to which drug my tumors reacts better.
By the way - I didn't pay anything to the other doctor... I am on this app called BELONG for cancer patients. which is pretty cool.
Anyhow - I don't like the fact that its a "trial and error"... but seems like in many other cases its how things are. Starting with Chemo X... not responding ? OK. Lets go to Chemo Y... but time is the one resource I assume I don't have enough of...
How do you make a decision here ? How can I be sure my physician is doing the extra mile for me and not just following the protocol ?
Thank you all.
Emma
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if you don't trust your doc, you should keep looking until you find one that you do trust. Your doc does not know the doc that you consulted on line, so I wouldn't execpec that she'd change her treatment decision based on that. But,Your doc should not be unhappy that you obtained a second opinion. She should have a better explanation of why she's choosing one treatment over another than "trial and error". Did the other doc you consulted explain why he'd use Taxotere instead of Taxol?
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Thanks Sjacobs146
Yes. He did explain in details why would someone prefer one drug over the other. The kind of facts that I did not hear from my doctor. He talked about toxicity levels, about side effects etc...
My doctor (like many other out there) only knows how to follow protocols. she wont even listen to other ideas.
Frustrating...
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At times, medicine can be more art than science. Doctors have their own ways of treating their patients, I can't blame your doc for not changing her recommended treatment. I say again, if you don't trust her and don't agree with her treatment plan, find another doctor.
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I'm not at all surprised that your doctor won't change her treatment plan based on what another doctor told you, at no cost. In her eyes, that's about the same as "My sister's best friend's aunt is a doctor and she suggested doing "xyz" instead."
If you are truly concerned about your treatment plan, take all your records to another doctor and get a second opinion. (As in, going to another doctor's office, being examined by that doctor, and have that doctor go over your records.) Then, you can take that second opinion back to your doctor and discuss it. I'm certain that if you do it this way, your doctor will be more open and willing to listen to you.
My oncologist told me from Day One, that he has NO problems with me getting a second opinion at any time, but to stay off of Google and avoid the "I know someone who knows someone and they said" garbage. Info that I find in say "Dr. Susan Love's Breast Book" and bring to him, he listens to and we discuss if it's relevant to me and if so, will it work for me. He's been wonderful....BUT....that's because I followed his advice and don't bring him second opinions from God knows where or things that I learned on Google. -
"Trial and error" does infact apply -at least to some degree - in any treatment plan for any medical issue. Our bodies do not all react the same to the same TX.
Hasn't you Medical Oncologist taken your case to the Board/Team at your Facility for the best of their combined knowledge? I know that neoadjuvant A/C was considered,to be the first best TX choice for me but if it hadn't 'worked' - there were other options. When I started adjuvant Taxol, again my TX plan had been discussed and I was given 3 options to choose from with 1 being their best recommendation - weekly Taxol whichh is what I chose. (They are,the experts - not me!)
I do not know the differences between Taxol and Taxotere or the reason for using one instead of the other. They are both within the same 'group' - Taxane. Taxol ( Paclitaxel) is from the Pacific Yew tree in the Pacific NW - Taxotere (Ducetaxel) is from European Yew trees. Why do you want Taxotere instead of Taxol other than someone with an 'App' who has never seen you or has any of your records tells you to?
If you do not believe/have trust in the Dr that is going to actually be treating you - get a 2nd opinion from a Dr that actually sees you personally/physicallly - not somebody found through "Dr Quack Google" or an 'App' that may not have any reliability.
Get more information but be sure of the authenticity of it and IF it applies to you.
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As mentioned, Taxotere and Taxol are similar, they come from the same class of drugs "taxanes". One difference is the side effects they cause. Everyone's body reacts differently to the drugs. Some tolerate Taxotere better, others Taxol. They may start you on one and change to the other based on your side effects. Some get Taxol in weekly doses to reduce the side effects. The drugs are made by different pharmaceutical companies.
Here are some links, copied from a past discussion on this topic.
http://www.phcog.org/Taxus/Taxus_Web.html
http://packageinserts.bms.com/pi/pi_taxol.pdf
http://www.chemocare.com/bio/taxotere.asp
http://www.chemocare.com/bio/taxol.asp
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Reducing SEs was not mentioned by my Dr to do weekly Taxol but to keep a more consistant level of it.
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Hi Emma:
You didn't really provide much information about yourself, such as where you are located, your age, estiimated stage, histology (e.g., ductal), size of tumor, ER, PR, HER2 status, or clinical evidence of node involvement, other than being "recently" diagnosed.
When you refer to your "physician" do you mean your "Medical Oncologist"? Presumably, your physician is a medical oncologist by training, is licensed to practice medicine in your location, and is affiliated with a reputable medical institution, so their qualifications are clear.
Since you didn't mention surgery and referred to seeing how the "tumors react", are you talking about receiving neoadjuvant chemotherapy (i.e., chemotherapy before surgery)? If so, it may indeed be possible to check for tumor response to treatment and to make a change in regimen, if indicated. This possibility of checking for response, or what you refer to as "trial and error", is an advantage of neoadjuvant therapy in certain settings. This is not a defect in a proposed neoadjuvant treatment plan, but a potential advantage. Unfortunately, medical oncologists cannot predict with certainty whether or not a particular patient will have a complete pathological response (pCR), indicative that the tumor responds to the drug. That your oncologist admits that she cannot be certain which is the best treatment at the outset, and that there may be a change, strikes me as an honest and accurate response.
Please note that following a "protocol" can be part of sound medical practice. Oncology is evidence-based medicine. Consensus treatment guidelines exist, such as those promulgated by the National Comprehensive Cancer Network (NCCN) in the US. These guidelines are routinely used by medical oncologists, because it is important to know what treatments are within the standard of care. Oncologists who keep up with current research may also incorporate more recent information, because the standard of care evolves with time and new reliable clinical information. In certain cases, there may be sound medical reasons to depart from the guidelines. But in many cases, it may indeed be appropriate for a medical oncologist to follow such guidelines or standard of care. It is possible that more than one drug regimen may be within the standard of care. Guidelines may indicate that one or some regimens are considered as preferred in the usual case, or if none is preferred and/or there is more than one reasonable option, then the sound medical judgment of the oncologist applied to the specific case and patient preference may come into play, in a discussion of risk/benefit.
As noted above, your oncologist has seen you in person, has access to all your records, is familiar with your personal and family medical history, including age, co-morbidities, other drugs you are taking (possible drug-drug interactions), and overall presentation. You can certainly ask your oncologist to please clarify the reasons why she feels Taxol (or the Taxol-containing regimen she recommended) may be the best choice for you in the first instance, and why she recommends it over a Taxotere-containing regimen in your specific case. You may also wish to inquire whether the guidelines address the question.
You have edited your post since this morning, but I think you mentioned that you provided a pathology report to the BELONG-associated person, who spoke with you by telephone about the best chemotherapy regimen for you. As noted above, this is a non-standard, unproven method of providing reliable medical oncology advice, and is subject to many possible issues relating to the quality of the source of the information and the quality of care. Such issues raise a reasonable concerns that the information provided may be inherently unqualified and/or unreliable.
The BELONG-associated person can only speak to the basic information in the pathology report (size, ER, PR, HER2 status) and what you may have remembered to disclose in the call. They can say this other drug is also used in this setting, but even if true, that does not mean it is a better choice. They can discuss generalities about known side effects of various drugs set forth in the FDA approved labels (which by the way, are easily accessed on the internet by anyone regardless of relevant medical qualifications (if any)), but they cannot determine whether these side effect profiles militate in favor of one drug over another in your specific case, if they are not familiar with your complete personal medical history.
The specific area of expertise and training required for chemotherapy decisions is that of "Medical Oncologists". What are the credentials of the the BELONG-associated person, and how could you independently verify that the person you spoke to is the person you spoke to (not just someone posing as Dr. Joseph Smith), is truly a medical oncologist by training, and is licensed to practice medicine in the country you are located in? What consensus treatment guidelines are they familiar with? Please note that different countries use different guidelines, and what is common elsewhere, within differing healthcare systems, economic and regulatory constraints, may not be the most common treatment and/or best practice in the United States.
If you would like a second opinion from a qualified medical oncologist, please ask your current providers if you can safely take the additional time to do so, and then seek out expert advice in person at an independent institution. If you need information about the second opinion process, please let us know.
BarredOwl
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Hi BarredOwl
Thank you very much for a very informative reponse.
Well - I did not talk to Belong associated person. It's like a forum where patients and doctors can talk to each other and sometimes when you post a question, you get different ideas from different doctors (radiologist, researcher, oncologist etc…) I didn't have a phone call with any of them. Just chatting through the app. This is how I learned about things like toxicity and others... I also use it to manage my to-do list. A year ago or so I also used a telehealth solution of another company where you can actually have a video conference with a doctor. But that was for another issue I dealt with that has nothing to do with cancer. I did share my biopsy test results with a few people online to get better sense of what it says as I am no expert in reading those documents and I was seeking for more data about some medical phrases I didn't understand.
As for me - I am 45 year old. From Israel. As I said - recently diagnosed after I felt a lump in my left breast. I went through Mammogram, US, Biopsy, MRI and PET. I am about to start with herceptin + taxol for 12 weeks. From reading various web sources I understand that this is a very common treatment plan but I have met woman like me who had gone through different treatment plans so I started seeking for answers. By the way, when I mean my physician I mean my oncologist. Sorry for not being clear about that. The terminology here is a bit different.
All I want is to be sure I make the right decision. A friend of mine had sent her Biopsy to a lab in Europe to find a better match for chemo drugs and biological treatments. It's a 12,000$ worth of test that I cannot afford.
I feel that my oncologist is very confident. But after all, it's my life and I want to make sure I don't miss anything important.
I will be seeking for a real face-to-face second opinion as I understand that choosing a treatment plan is a critical decision point that in some cases may shut some doors on other possibilities. I learned it from some of the stories I have heard from other patients like me in Belong.
I know that some of the biggest hospitals in the US do medical file reviews for international cancer patients without making the trip. Hospitals such as Mount Sinai, Cleveland clinic and Sloan Kettering. Do you have any experience with those kind of services and can you recommend which one would consider to be good as I have no way to evaluate them.
Thank you very much for you detailed response. I truly appreciate it.
Best regards,
Emma
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I can't add much to the conversation except to say that therapy IS somewhat trial and error. That might be shocking to realize but it's pretty true.
Also, do get a "full" second opinion. I used a type of taxol (called Abraxane) which has been concocted to reduce common side effects. Maybe taxotere has even fewer side effects, I really don't know. They're both in the same class as others have said above. Like cousins. I don't know this for sure, but I would not be surprised that if one taxane works for you, they all would.
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Emma, I'm sorry you find yourself here, and I can appreciate why you would want to get as much information as possible. It sounds as if you're using your app the way many of us use this site, for extra information and clarification of all the many details we need to be aware of as we go through treatment.
You didn't mention one crucial thing, which is whether you have insurance that pays for a second opinion. That's something that I believe is legally mandated in my home state and, I think, across the US. But I'm not sure. I just know that every insurance plan I've had does allow for second opinions that are not the patient's financial responsibility. Is this something you've checked into?
I'm being treated at Sloan Kettering, and I did go to their website and found this information for international patients, including those who want a medical record review. It costs something, but again, much depends on your insurance situation: https://www.mskcc.org/experience/become-patient/in...
Good luck to you: I hope you are able to find some answers soon.
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Thank you so much rainnyc
I have a medical insurance but my plan only covers doctors from an enclosed list within Israel. Neither Sloan Kettering Nor the European lab is on that list... the price for Sloan Kettering services is around 2000$ if I recall.
There are great doctors in Israel and I already have a few names of top-notch oncologists (it was time consuming task just to find those names). I will definatily go see one. no doubt about it. Just hope to get answers.
Good luck to you too in your journey.
Emma
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Thank you kayb.
just a quick question - What do you mean SEs ?
Emma
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SEs - Side Effects
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Oh OK. silly me
thank you.
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It sounds like you are really trying to have the best information possible. Is your Tumor greater than 2cm or are you node positive? If so can you get Perjeta? In the USA there are a lot of women on
TCHP-Taxotere, Carboplatin, Perjeta, Herceptin regiments.
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Hi Emma:
Thank you for explaining BELONG and the additional background information.
I am glad you will be seeking a face-to-face second opinion, and agree with your reasons for wanting one. Benefits of the second opinion process may include an independent review of imaging results including mammograms, ultrasound, and MRI (interpretation of disease/extent of disease), review of actual pathology slides, and test results; and a second expert evaluation/opinion regarding treatment plan, plus an opportunity for additional discussion of possible treatment options, associated risk/benefit, quality of evidence, and your questions and concerns.
Although you may seek treatment with your original providers, it is good idea to choose a second opinion place with an excellent reputation, in case you decide to seek treatment with the second opinion provider.
I also sought a second opinion prior to commencing treatment. In my case, additional imaging and biopsy were requested that led to diagnosis of cancer in the other breast. I sought care with the second opinion group (Mass General in Boston).
I do not have personal experience with a medical file review, but some members here have done that. For breast cancer treatment in the US, many recommend seeking treatment or a second opinion from an NCI-designated Cancer Center (NCI = National Cancer Institute). A list of these can be found here (scroll down):
http://www.cancer.gov/research/nci-role/cancer-cen...
Dana Farber in Boston (member of PartnersHealthcare) and Memorial Sloan-Kettering Cancer Center, which you mentioned, are listed here and have excellent reputations, as do Johns Hopkins and University of Texas M.D. Anderson.
This page from Breastcancer.org has information on the second opinion process. There are links to additional sections at upper left:
http://www.breastcancer.org/treatment/second_opini...
This page mentions some on-line second opinion services, including PartnersHealthcare (an organization that includes Dana Farber, Massachusetts General Hospital, and others in Boston, MA), Cleveland Clinic, Johns Hopkins (Baltimore, MD), and M.D. Anderson (Texas). Some are said to handle international patients, but if you are interested in one of the others, do not hesitate to contact them to see if they now are also handing international cases.
http://www.breastcancer.org/treatment/second_opini...
Best wishes,
BarredOwl
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Thank you BarredOwl for all the resources.
I did hear a lot of good things about Dana Farber as well as Sloan. I also heard that Dana Farber cancer center is considered as a very patient-friendly facility.
Emma
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Emma, I would definitely suggest a 2nd opinion and if you feel more comfortable with 2nd opinion you could have that person as your onc.
My wonderful onc was my second opinion doc. Really, really liked him.
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