Treatment decisions

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

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

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?

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 said:

Lou Ann, it makes me so angry

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

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