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Treatment decisions

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I think I've read just about everything on this board going back a few years and see a lot of different points of view on treatment options.  I've also read anything I can find regarding uterine cancer.  

Back in late 1930 my Great-grandma Eldri found out she had colon cancer.  By January of 1931 - a few months later, she was dead.  She was 70 years old.  

Fast forward 85 years:  Colonoscopy finds precancerous tumor, removes it and she lives to 102 like her mother did....or.....tumor is found later and a robot removes it surgically, she turns down chemo/radiation but chooses to boost her immune system and she is cured.....or.....tumor has progressed so a robot removes it surgically, she has chemo and/or radiation and is cured.....or......?  My questions is, who knows what allowed her to live to 102?  Was it early detection, specialized surgery, access to quality medical care, chemotherapy, radiation, nutrition, etc.?  Yes, people with cancer are living longer, but WHY?  Could chemo/radiation actually be negatively affecting those mortality rates?  Could all those vitamin supplements, minerals, mushroom capsules etc. also adversely affect that lifespan?

I would think early detection would GREATLY affect mortality rates.  I would also think that our specialized and/or robotic surgery would do the same (however, there are some articles that say some cancers should just be left alone; that surgery just spreads the cancer cells throughout the body). The chemo, radiation, immunotherapy, nutritional supplements...who knows?   

In a perfect world my cancer doctor would study all these thing with an open mind and consider MY unique set of circumstances.  Then, he would lay out the pros and cons of each treatment in words I could understand.  After letting me absorb all of that, then, work with me to come up with an individual treatment plan that would be flexible enough to account for adverse side effects and their treatment.

What did I get?  A doctor who talks to me for maybe ten minutes, who doesn't even tell me what I have, what stage and grade it is, what drugs and why he's planning on using for treatment, what to do if I can't tolerate those drugs and the list goes on and on.  Today I called to set up my first three month appointment.  He is having his PA see me; he's done with me since I didn't finish the chemo he prescribed.  Who cares if my port failed and was infected, my liver was failing, my blood pressure was in stroke range, my fingers and toes were numb, my eyesight was failing?  He wouldn't even talk to me about suspending chemo or reducing the dosage or going once a week instead of every three weeks.  It was "my way or the highway."  He is the only gyno/oncologist in my HMO so I am stuck with him for the rest of the year.  Luckily I have a wonderful GP in this HMO and will be eligible for Medicare next year.  I will make sure I have a Medicare supplement that lets me see other oncologists.

Sorry if I sound bitter but this whole cancer treatment did not have to be this hard.  I read where some of you can actually talk to your oncologist (or email them).  Hopefully, I will not have a recurrence or at least until I am DONE with this guy!!

Love,

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Eldri, your scenario of a perfect world is how we should treat ALL illnesses.  Unfortunately, the reality of our health system doesn't fit well with that scenario.  I do think there is a move, by the more enlightened physicians and health groups, towards treating the whole patient and not just the disease or symptoms, hence integrative oncology, using all tools available. It is by no means widespread, however.  

Certainly early detection and better screening contributes to better outcomes.  However, as is a current controversy in prostate cancer circles, there can also be unnecessary procedures with very slow growing cancers, where men will probably die of something else before their non-symptomatic cancer gets them.

I think the most important thing that I have learned so far is how much doctors really DON'T know about cancer. There are some cancers where they can predict much more accurately what will work and how it will work than they used to.  For instance, some types of breast cancers come to mind, not all.  But I believe there are many ways to "cure" cancer and often doctors follow what they know best, which is surgery, chemo and radiation.  And to be honest, that can work.  But, as you've experienced, it can come at a cost.  

I am so sorry your GYN/ONC is such an uncaring a**.  He let you suffer needlessly and offered no remedies.  I, too, hope you don't have to deal with him again.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

I can't imagine only having one choice of doctors to go to. Especially one as bad as yours is. I'm so sorry for that!

Can you file a complaint with your insurance and push to go to someone else? Even if it means you have to drive a lot further????

You were not cared for - plain and simple. That just can't be tolerated. There has to be a way to get you to someone else this year!

Also, consider filing something with the medical board. Your care sure seems to be substandard and I just wonder how much noise you would need to make to get some help.

TV news - they love these stories, right?

Just tossing out ideas. I'm really mad for your journey. It didn't have to be that way.

Love and Hugs,

Cindi

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Honestly - havent we all known doctors like this? I am so sorry you are going through this! You deserve better and I think you can demand it.

I made a very hard decision to leave my original practice - the brilliant surgeon who operated on me - to go to a research hospital in Buffalo, NY (Roswell) - 3 hours away. Not convenient - but so worth it. Right down to my very soul - I knew that there must be a better way to treat people. The chemo nurses were the worst. In my old chemo suite last spring I just wanted to scream - "HEY! I'M THE BALD ONE HERE!" I was always getting yelled at for one thing or another - always doing something wrong - it wouldv'e been comical if my life wasn't hanging in the balance with these people. It was simply a pressure cooker of an office - they were under stress and that translated to short clipped conversations with patients and no time for questions. When I had the reoccurrence, I went for 2nd opinions at Philly Cancer Treatment Center of America and Roswell. I was thrilled to see that not everyone runs their business like what I had experienced. It was scary to leave the surgeon who was responsible for keeping me alive to this point - but I needed more. I needed people who cared about me as a human. Seems ridiculous to even write that - but that is what is missing with your doctor, too.

We give the brilliant a pass when it comes to bed side manner. But when the operations are done, you need more from your doctor. I tried all sorts of things to insinuate myself into this doctor's mind. I brought her a fancy cooking oil as a thankyou gift for talking to my chemist son ( he's a PhD student and came in with a billion questions - not what a busy doctor wants to be bothered with ). But what it did was give her a glimpse into my life as a real human. For the appt where she told me I had a reoccurrence, I passed out and slid to the floor. A real Scarlet O'Hara moment. BUT - I made some headway with her - she was compassionate and caring and I believe she was truly sorry to have to tell me the news. I just couldn't square my new phase in the fight with the old regime. So I found out things are done differently in other offices. I am so happy where I am at Roswell - no one yells at me and I feel like everyone has time for me. I bring a pad of questions and they say - "what else". They look at me when they talk to me. They are encouraging and not rushed. Basic human consideration - why isn't this everywhere?  I'm not sure - not enough staff? I feel like I made progress with my old doctor when I asked to meet with her without an exam - a talk visit. I went in with a script and spent 15 minutes asking her if she believed I could make it and that I needed to surround myself with people who believed I could make it. I said it this way " So you believe I can make it? And she said YES" I dont even care if she meant it - I needed a win and I wasn't leaving intil I got it. In the end, the chemo team made the difference - I made the decision to leave. Like Ive said a hundred times this past year - it's a mental game. My new doctor is young, compassionate, and teaches in the med school there. The chemo team is busy and efficient but caring and compassionate.

Hope you can make some headway with this guy - make it your mission! And thank heavens for your GP - hope you can find the right doc if he doesn't come around. You deserve the best. XOX, Billie

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

Thanks, guys!  Just reading your posts made me feel better.  My best friend's husband is also a surgeon at this same center my oncologist is at and he warned me (gently) what this guy was like.  When we were at my friends at Christmas, her husband gave me a big hug and said "I told you so."  I had to laugh because yes, indeed, he had told me.  He said they get complaints all the time about his bedside manner but he's a brilliant surgeon so he stays.  There are a lot of other places including the University of Wisconsin medical center which is about three hours away.  I am going to check with my insurance to see if they can suggest any other alternatives.

Love you all!!

Love,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

He may be a "brilliant" surgeon but he is NOT a good doctor. He is a terrible doctor! You should not only report him to your insurance company, you should report him to your state medical board. How could he ignore your port site for so long? Why didn't he even mention, much less suggest, alternative treatments, doses. He could have killed you with his neglect! 

I am so glad that you are recovering and I so hope that your hair will start growing and return to it's former glory!  With love and caring, Sandy

ConnieSW
Posts: 1576
Joined: Jun 2012

Sandy said exactly what I was going to ( she does that a lot) so I'll just second her!

Gardena
Posts: 102
Joined: Jan 2016

Your dr might be a "brilliant" surgeon but he's a poor human being.  Everything about your experience, from your port placement and infection to your 3 month follow up with his assistant is just wrong.  I go to a large cancer center in my city and tho they are busy I have always been treated w respect. I am also saddened your physician friend was not compassionate about your experience - chuckling "I told you so" would have really ticked me off.  I was wondering,  will you have a CT or PET scan at this visit? I hope you're fingernails are holding on and your wound is healing. You've been thru enough already! You always have such kind words for everyone on this board, I cannot imagine anyone treating you so poorly. I feel so badly for you.  Maybe you should document your experience and send it to your hmo? Or state medical board?

Anonymous user (not verified)

I agree with the others, your doctor is such an unprofessional doctor.  He may be brillant as a surgeon, but as a doctor he is not.  My husbands first neuro (the one that first told us he had TM) was a jerk also.  We were able to quickly get rid of him and moved on to some caring ones.  Interesting, last year when I had sciatic nerve like pain, I had to see him for me.  What a turn around.  He has now become the most caring doctor.  Maybe if enough people complained about poor treatment your doctor can change also.  Indeed, push for tests when you feel they're needed, push the PA for answers.  And don't be afraid to ask your friends husband for medical help too.  Afterall, if he is part of the network, he will know how to get around this doctor.  Nancy

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Your story makes me so sad.  I can't believe that there are doctors like that out there.  The more I read about doctors  these posts the more I am convinced that I have the absolute cream of the crop.  I wish I could share them with you, but it is  long drive from Wisconsin to Montana.  Both my Gyn-Onc and My medical Onc are two of the most caring people I have run into.  They have both gone out of there way to ell me.  my Gyn-Onc called me and left a message that my PET scan results were on his desk and he would call back on Monday.  he waited until Monday evening because he didn't want to tell be My cancer had returned at school.  My Onc spend at lest a half an hour with us and more if needed.  he has asked to leave and look somethings up when he wasn't sure about something a and once went up the the radiology department to have them go over a CT scan that he couldn't figure out.  Yesterday I had a reaction to the chemo I was on and he was there in minutes.  And came back before I left.. he sent he nurse and his PA to check on me in the little time I was there.  During appointments he listens to me and let's me help make discions (sp).  He discusses side effects and even runs of information from web sites for me to read up on at home.  Both of these doctors always make sure my husband is included.  Every body deserves doctors like these two.  Hugs and prayers, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

Lou Ann, it makes me so angry that my doctor is not like that at ALL.  The second time I went in to get my port checked when it was infected, my PA tried to get the oncologist to come and look at it.  I knew he was there but wouldn't take two minutes to come and look at what was going on.  He just couldn't be bothered with me!

Love,

Eldri

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Early on after my surgery, for about a year, my gyn onc was short staffed and he had his NP do my exams (I had the "garden variety type, not UPSC). I liked her a lot and felt very comfortable with her, knowing she would communicate with the doc if needed.   For my breast cancer, I now see a NP once a year and the medical oncologist once year, with visits 6 months apart.  I did not initially like either of these arrangements, but in hindsight, I have had really good communication with the NPs, they were never too busy to talk to me and seemed to answer any question I had.  In fact, the NP in the breast cancer clinic referred me to a dermatologist for the hair thing - my oncologist (although I do love her) refused to admit it was from Taxotere.  I do have good communication with the physicians, or at least I think I do.  Unforunately, I just read that your PA tried to get your oncologist to come in and look at your port but he was too busy.  This should not happen!  You didn't just blow off his treatment advice, you couldn't tolerate it, doggone it.  I have a really good friend who had UPSC and received her treatment at the same place as me.  She had her surgery by a gyn onocologist, but her chemotherapy was done under the direction of a medical oncologist (who specialized in gyn cancers) and the two of them worked together.  After treatment, she would see both docs for follow up.   I don't think she ever saw a NP or PA or even a resident physician.  I just don't understand why this is happening to you.  I hope you can change your care soon to someone who actually has some bedside manner!  I believe that a good doctor-patient relationship is so important.  You had a good surgeon for your surgery and now you need to be comfortable with your followup.  Sounds like moving on is he right thing to do for you.  

Good luck.  You have had a hard time!  It's time to feel well taken care of.

Suzanne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

have given you great feedback, Eldri.  I would add that HMO insurance general does not allow for the best medical care, a good enough reason for me to have chosen to pay more out-of-pocket expenses so that I could select my own competent physicians. I am not in"awe" of any medical doctor perhaps because I have or had medical doctors in my immediate family. Like any other profession, you can receive services from completely incompetent and malicious assho** to incredibly loving and competent and caring individuals. I think you should file a complaint against this jerk, both with the state medical board and with your insurance company. Eldri, we have been given notice that our lives may not extend into old age- who knows why cancer kills many and not others? I have learned that for cancer to take root in the first place requires a "perfect storm" of internal bodily events to occur. A recurrence requires a further "perfect storm" of complicated events to occur to seed itself elsewhere in the human body. It is as complicated as life itself. No wonder science is still in the dark ages regarding TX. Maybe another 100 years from now scientist will know why you and I developed a rare form of endometrial cancer.

Warmly,

Cathy

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