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Old 10-02-2015, 09:13 AM   #1
SpitFire
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How to find a doctor that will look out for your best interests?

How do you find doctors that will communicate with you and not keep information from you or give you false information? My doctors came highly recommended, but have been a big disappointment so much that I don't trust or respect doctors anymore. I think they just have a lot of contacts and do "favors" and that is how they get business. I want doctors that do more studying and less socializing and networking. How do you find good updated doctors that have purpose in their lives? It seems such a waste for such bright doctors to waste their time becoming doctors if all their going to do is take advantage of vulnerable people. They should just go to Wall Street instead.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin

Last edited by SpitFire; 10-03-2015 at 06:21 AM.. Reason: misspelling
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Old 10-02-2015, 09:33 AM   #2
Juls
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Re: How to find a doctor that will look out for your best interests?

Good question - In UK we have no say in who we see. In saying that I'm told I am in best place for treatment etc. Sometimes I'm not so sure! I am still finding out info over 2 years after diagnosis. Info that I think I should have been given at start.
Thank goodness for this site!
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Old 10-03-2015, 05:26 AM   #3
Becky
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Re: How to find a doctor that will look out for your best interests?

I understand this completely as I changed once. What made it even worse as I did so within the same practice. It made (and still .makes) it alittle uncomfortable. I need a nerd doctor who is always reading and keeping up. The one I have now I am so confident in. Even though I am 11 years out, I know he is always updating a plan for me. I think if something happened, he would be ready with all the options for us to discuss and that his plan for me has changed over the years as New Her2 solutions have been developed. The other one gave me a 70% chance from the get go (my kids were school age then) and when Herceptin was available, he wouldn't give it to me but his partner did so I had my year of Herceptin alone without chemo as chemo and radiation were completed when I started (chemo by 4 months and rads by 2 months) . You never know what part of your treatment plan is the part that gets you to 11 years NED but maybe it was that Herceptin. I am here and happy to know I still have a doctor who I can work with should I recur or get a new cancer.

Bottom line, its a relationship and it has to work for you. Doctors are just people and you don't see eye to eye with everyone you meet.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
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4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"

Last edited by Becky; 10-03-2015 at 05:29 AM..
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Old 10-03-2015, 07:04 AM   #4
SpitFire
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Re: How to find a doctor that will look out for your best interests?

Juls - I am glad that we can still choose our doctors for the time being. I don't want socialized health care, even though I have gotten more up-to-date information on this forum from people in socialized countries than from my "cutting edge" doctors.
Becky - I am glad you have found a real doctor. I would feel so much better if I knew someone was looking out for me. It is scary knowing that I am on my own, and am doing better than in the care of my incompetent doctors. That is so scary! I am not a doctor, but am way more informed than my doctors were.

I have had nothing but problems with my oncologist from the start. What gets me is how everyone just raves about him. He made mistake after mistake. He is sooo incompetent. Everyone defends him, because he is "nice." I have found out so much information on the internet and the other doctors still try and credit him! It is disgusting. I got no help from my oncologist and I got made fun of if I dared ask a question to my oncologist or "took advice from just a nurse," or looked at the internet. He is an obvious loser, but everyone just loves him!? He plays people. I had so much pressure to stay with him until I had enough that I would rather die than go back to him ever again. Then I finally stood up for myself and fired my oncologist and my beloved breast surgeon (he referred me) who promised me he would take care of me, but didn't, he tried to defended him instead. Now as I have found out certain things, I realize that my breast surgeon is scum too, he just hid it better. I don't trust doctors, but I need to pick out a breast surgeon as I am BIRADS 3 and need to be prepared if my status changes. I have been referred to another breast surgeon, but will not go to her. On the internet, my old breast surgeon looks top notch, but I know he is not working for me, so how do you find a good doctor? Are there red flags to look for? What are signs are there that someone is a good doctor? Remember when people used to respect doctors? At this point, I don't respect doctors.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 10-03-2015, 09:22 AM   #5
sarah
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Re: How to find a doctor that will look out for your best interests?

Terrible to not be able to chose or change your doctor. Here in France we have universal healthcare so we don't have to sell our house to pay our medical bills and we do have the right to chose our doctors and have as many 2nd opinions as we want. I've changed oncologists and radiologists. My husband flew to another part of France to have surgery because we didn't get the right feeling about the surgeons near us. I hope at least you can get a 2nd opinion, that seems to be normal in most countries. Everyone should feel confident in their doctors and the treatment they are given.
hugs
sarah
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Old 10-03-2015, 10:00 AM   #6
Juls
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Re: How to find a doctor that will look out for your best interests?

Hi Spitfire
When first diagnosed I was at my local hospital. Manner in which I was dealt with not very nice but surgery (beg Mar 13) went well. Follow up care didn't. Delay in start of treatment because Hospital forgot scans & rude staff ( the last thing you need!) Treatment had to change as I had progression (end May 13) & Oncologist angry - So angry that he got me moved to a specialist hospital. I've been there since. It is much better but still not great - I have had a few problems there but try to ignore them. Not so easy at times! One comment 2 years ago was " you have 2 years". I had just finished chemo, been told I'd done well on it and then Onc says this! I think it was at this point I lost a little faith in her.
So I fully understand where you are coming from. We can't choose here & think if we asked it would not go down well!
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Old 10-04-2015, 07:53 AM   #7
SpitFire
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Re: How to find a doctor that will look out for your best interests?

It is really scary when you have to rely on people who "have it made" and sole purpose in life is to keep good relations with other doctors. They don't care about regular people, they only care about powerful people. This is not about insurance, I pay my bills. I know that my doctors hate me because I have pointed some mistakes made that affected my treatment, but I got blamed. It is a bad position because you have to manipulate and sweet talk these narcissistic doctors. That is what everyone does around here. I refuse to do that. I am trying to figure out how to go about dealing with doctors. Trust is gone! It is surreal.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 10-04-2015, 02:42 PM   #8
Juls
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Re: How to find a doctor that will look out for your best interests?

Spitfire -
You mention mistakes that affected your treatment. I had a conversation with my Onc that I repeated (innocently & nicely) to a Nurse that has treated me for over 2 years. Unfortunately another nurse overheard & loudly berated me about it. I was so shocked that to this day I can't remember anything said in her rant! This was in the ward with 5 other patients. I lost a bit of respect for her that day!
Trust, respect and communication should be a given.
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Old 10-04-2015, 11:06 PM   #9
sarah
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Re: How to find a doctor that will look out for your best interests?

dear spitfire and juls, this is terrible to hear and I feel awful. surely there is some way you can change doctors and find someone who you can trust. speak to your political representative if the medical system isn't helpful enough. Is there a local support group that could help find a solution? Fighting cancer is difficult enough.
hugs and love
sarah
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Old 10-04-2015, 11:09 PM   #10
sarah
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Re: How to find a doctor that will look out for your best interests?

spitfire, I see that you can still chose your doctor so you just have to keep asking for recommendations and interviewing oncologists until you find someone you trust.
good luck
hugs sarah
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Old 10-05-2015, 07:49 AM   #11
SpitFire
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Re: How to find a doctor that will look out for your best interests?

juls - I am sorry that you can't change doctors, but I feel that they are all the same anyways.
sarah - I have done everything possible to get good doctors. There is a reason I did not chose the "other" breast surgeon as she was not as good as the one I chose 2 years ago, but now she is recommended to me?
It is a business. These doctors just looked at how much money they can make off of me. So I got corrupted doctors, but everyone else benefits from supporting these powerful doctors. They literally have a license to do what they want. They know what they can get away with. I literally was told to not talk to other breast cancer survivors because everyone's treatment is different, to stay off the internet and to trust them, they had X number of years of experience, I had none. I fell for that! I trusted them completely, even my oncologist who was so incompetent from the start, but gave him every benefit of doubt. He has no soul. He made fun of me for “taking advice from just a nurse.” (The nurse was right by the way) I got rid of a phone support system from a nurse because of that! I only had them to rely on. But because the oncologist was that way, it also made my breast surgeon's true colors shine so I dropped him too. It was heartbreaking! My husband was very against it. More things have come to surface since then that would not had I stayed with my breast surgeon. My husband now is fully supportive. Trust is gone. And also respect. Thank you for letting me rant. Doctors are not what they used to be. They sold their integrity.I hope they make as much money as their hearts desire. They deserve it.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 10-05-2015, 08:30 AM   #12
Juls
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Re: How to find a doctor that will look out for your best interests?

Hi Spitfire
Strangely there is some comfort in this. I know what to expect!!
Not all has been negative. I have had one young Doctor who to be honest I was reluctant to see. I went in intending to have very short chat. He completely disarmed me with his positive reading of my CT and his great attitude that I left elated! So not all bad!
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Old 10-05-2015, 09:00 PM   #13
sarah
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Re: How to find a doctor that will look out for your best interests?

Spitfire, you have every reason to be upset. I have heard of and met doctors who don't want to listen or be asked questions but I could not have a doctor like that and my experience is the top ones will listen and will let you ask questions because they are open and interested and caring. I've taken articles into my oncologist here in France (he's famous in France) and he's read them and commented - generally he knows all the doctors and about whatever it mentions and he often writes down treatments for me to look up!!! He was the first one to tell me about tyerb and TDM1. And I've met other caring and dedicated doctors so I still say, they're out there and hopefully you will find one. Perhaps right now you've been so misled and treated poorly that you are not in the right frame of mind to find one now but maybe a little later on.
Don't give up on them, there are fantastic ones out there.
I'm off on holiday but I'll check in when I'm back and hope to see you've found a good one.
hugs
sarah
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Old 10-07-2015, 08:41 AM   #14
SpitFire
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Re: How to find a doctor that will look out for your best interests?

Juls and Sarah - Thanks for the encouragement. I am so confused because I have been told that my oncologist was the best over and over again by top people in the industry here. My OB/GYN who is on top of his game even credits the oncologist at every opportunity. I am seriously thinking of dropping him too. It is so insulting! The oncologist is so full of himself, and why not, everyone kisses his butt! He is young, but has older, more experienced doctors making excuses and covering for him!? It is pathetic! If I followed my oncologists advice, I would be stage 4 right now! I could go on and on about all the mistakes that he made and how people cover up for him and these are the mistakes I know of. How many more are there that I don’t know of? I have uncovered more since dropping my gifted breast surgeon. I am not at the right frame of mind, everywhere I go, I don't have anyone who cares. I have lost trust in doctors. And respect. I would rather get treated by nurses and strangers on the internet.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 10-08-2015, 02:33 PM   #15
Juls
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Re: How to find a doctor that will look out for your best interests?

Hi Spitfire
Read your post last night & have been thinking about it today. It is a terrible position to be in. When horrible things happen it is very difficult to stay in right frame of mind. The problems I have had are still the minority over the last few years. I don't like them but I try to ignore. Maybe they are having a bad time etc. I know I am too accepting of things and have a tendency to see both sides. Unfortunately don't think I'm going to change now!
You say you don't have anyone who cares? Well - there are many here!
Take care
Juls
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Old 10-08-2015, 03:57 PM   #16
Pat94
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Re: How to find a doctor that will look out for your best interests?

I am so sorry you are in this fix. I started out thinking my first doctor was great based on recommendations and initial meeting and surgery. Turned out he screwed me so badly it is absolutely scary. Being an excellent cutter doesn't mean he didn't cause me harm in the long run. When in crisis I tend to exist in inertia but I had enough time before my recurrence to know I would never deal with that group again. I am certain if I had remained with the first group I would have died from my chemo side effects.
When I did recur I switched to a new group. The team assigned to me has been terrific. The new practice is part of a NCI Comprehensive Cancer Center; the difference is just amazing.
Never settle for mediocrity or worse. You are a unique human being, not just a bc patient. Try a new doctor; if he/she doesn't work for you try again until you get one that is right for you. You will be in my prayers; let us know where you are looking and see if any of us have any suggestions.
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Old 10-09-2015, 09:23 AM   #17
SpitFire
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Re: How to find a doctor that will look out for your best interests?

Juls - You say you don't have anyone who cares? Well - there are many here!
That is why I am here. I am very grateful for the encouragement and very useful information shared on this forum. My husband works all the time. I have no other support and I was made fun of for asking about other support groups, websites or even books to read, even for asking simple questions. I was just made fun of the whole time. I gave everybody else the benefit of the doubt all the time. They knew I was isolated and they took advantage of it. I am not letting anyone do that to me again.
I am happy you have a sensible son to help you.

Pat94 - I am so glad you found a good team. I am glad I have this time between doctors also. I had to rely only on my team of doctors, it was really scary the simple mistakes they made and they are so disconnected with reality. I am so glad I had the courage to walk away, that was a turning point, but I can't stay away from doctors forever even though I want to. I will have to drive far in search of better doctors.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 10-16-2015, 09:16 PM   #18
Catherine
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Re: How to find a doctor that will look out for your best interests?

Spitfire, I am curious. Which state do you live in? Sorry for your the bad experiences you have described. I hope things get better.
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 10-19-2015, 08:19 AM   #19
SpitFire
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Re: How to find a doctor that will look out for your best interests?

Catherine - Thanks for asking. I am not going to say where I live. I want to have a safe place to talk. I get a lot of good information on this forum.
I don't need someone to "find" me another doctor. I was with "good" doctors, in fact, I was told they were the best. They were not working for the best interests of me at all. I think that a lot of people become doctors for the wrong reasons now days. My oncologist knows how to work people and say the "right" things. As it turns out, he is incongruent. I don't think I need an oncologist. I think I need to have a breast surgeon picked out. I don't think I will have to go to one unless my mammogram comes out bad. So I just need to be ready. I am planning on driving a couple of hours to another city for all this. Pathetic! I don't want to drive far to just get treated bad again. I can stay home instead. I want a Doctor that has integrity, you can't find that out in one interview.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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