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Cynt

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Reply with quote  #1 
I've been going thru some non-cancer problems that are having a huge impact on the quality of my life.

Things weren't responding the way I'd hoped, and it was looking like I had the most destructive and debilitating form of this illness, plus maybe the second worst type also, in combination. Edge turned out to also have great experience in this condition, and gave me wonderful advice on a more aggressive treatment, which I relayed to my doctor. She refused to do it, saying, "That's not how we treat patients here." 

So I was scheduled to see her last month. This condition is not a common one, so doctors who treat it are not common, either. In fact, I hadn't found any others in the area. It turned out my referring doctor listed this in her specialties, but the initial treatment she proposed was wholly inadequate and not in keeping with current standard recommendations, so my faith in anyone claiming it as a specialty is already shaken. Anyway. I get a call from the nurse, the doctor I was to see (she's actually the supervisor, I'd be technically seeing the resident) has broken her shoulder, do I want to come in and see the resident anyway? I said no, because what I had wanted was another chance to convince her to try the recommendation we'd gotten thru Edge, and I knew the resident wouldn't do it without the supervisor's so say, but then I hesitated, thinking, did this perhaps mean I should see someone else?

 This did not please the nurse, who let me have it. She said, "I remember YOU. The doctor is NOT going to give you medicine just because you want it!! She is going to give you what is best for you!" She went on to lambast me for not having more sympathy for the poor doctor, telling me that "your condition is NOT an emergency! It's been there for a long time!". (Note: my condition is limiting my everyday activities, has made sex impossible at this point, and threatens to erode and eradicate my vaginal opening; anything I lose, I lose forever. So while it isn't killing me, and so I guess I have to agree "isn't an emergency" in that it doesn't threaten my life, I still think it's rather urgent. It's certainly painful.) She went on to tell me how important and busy the doctor was with lots of complicated cases, I wasn't the only one being hurt here.

 I asked if there was another doctor I could see. I didn't get to the part where the appointment that I was being rescheduled for had already been 2 weeks past the time that the doctor had originally set to see me, but her schedule hadn't permitted any sooner. I KNEW the doctor was busy, hence my anxiety. Just how long before I'd get in to see her? Well, the nurse couldn't say, because the dr had just that day hurt herself, and no one could say when she'd be back. Was there another doctor I could see? No, the nurse said. Yes, it'd be "easier to send me off to see another doctor", but that wasn't in my "best interests as a patient".

All in all, I hung up feeling very uncared for, very unwanted, and very upset at her lack of compassion. And still not much closer to getting the treatment I felt I should have. Adding to my anxiety was the fact that the current treatment I was on was self-limiting. Because of side effects, it could only be done for a limited amount of time. However, it was one of the components in the Edge recommendations, so I had a limited amount of time in which to try that therapy before I'd reach a point where I had to stop it and try other, less promising therapies for at least a few months. A few months feels like a very long time indeed, with this condition.

Today, I was called again. Doctor has "taken a turn for the worse". Realize, she's been in, treating patients for weeks now. I have to wonder how she took a turn for the worse, but didn't ask. Now, suddenly, the option of my seeing other doctors is a necessity, and suddenly there is a list of doctors I might see. Hmm. 

So, thinking about my prayers on this subject, the doctor's apparent pride that didn't allow her to consider someone's recommendation, even based on research, when it concerned her prescribed treatment for her patient, I have to wonder: is this my answer? Is it possible that that doctor has been taken out of the picture, because she was so recalcitrant? Is this next doctor perhaps going to be more willing to consider Edge's recommendations? We shall see.

I'm not suggesting God is punishing her; if she's His, too, I'm sure He's using this to work for her good, too. But I do wonder if perhaps God is moving things for me.

Here's hoping the next doctor can help me more! Thanks for letting me vent. I don't really have many I can talk about this with. 

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Cynt
Indigoblue

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Reply with quote  #2 
Dearest Cynt,
I've been "let down" by all of my doctors... after diagnosed with Breast Cancer, it seemed, seems, like I was no longer a viable human being. 
It seemed/seems like none of them cared, or ever cared in the first place, and once the actual diagnosis was written, I was taboo.. They are not your friends, they are diagnostic... and we pay them to diagnose. There is no cure...

One day, they will be diagnosed with Cancer, and realize how nasty they are... meanwhile, why must we put up with physicians who are total a-holes? 
I want to say "find me ONE doctor whom I respect."  I respect my Oncologist... but he is overwhelmed by it all... he deals with life, death, and hopelessness with the perimeter of "deal with it"....
Hope, faith, love, well wishes, and faerie kisses... and sister love will surround you through this perplexing time... My advice... find a new doctor, hospital and trusted friend to help pull you through this to a sunny window..,
Love
Indi
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Reply with quote  #3 
Dear Cynt,
That nurse is a wretched excuse for a human being. I would like to know her  qualifications... is she really a nurse? Or is she a receptionist with a power trip??
I believe in what my grandmother always used to say:
"God gives the very best to those who leave the choice to Him." So, yes, I do believe it is divine intervention.
Now, I must address one line  here- your QOL IS a matter of life and death- you know what? Because you fought cancer- you fought FOR your life and every day on the other side of that battle is testimony to your fight and love of life and that means a WHOLE life.
I wish you could see my GYN, he is so good, so understanding... so open to everything possible. There will be a doctor who will listen. I believe that sometimes the Residents are more "up" on better ways of treating things and are not afraid of outside research.
This was a door opening for you- now you walk through it and some day that doctor and Nurse Wretched will have a day of realization when someone treats them that way.

Indi, reading your words stirred up something that has been nagging at me lately. When I had my second cancer come, remember I couldn't get my doctor to biopsy it? I went for months and months with a growing tumor because HE knew best. I wound up with  a 2.5 cm tumor as well as 4+ nodes and extranodal extension. I try not to go back to that place, but sometimes, like when we have a scare, it is hard not to.

Love and hugs to you both
g


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Cynt

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Reply with quote  #4 
I've only been let down by a few doctors, actually. The first radiation oncologist I met was an a**...a real jerk. I swore off radiation (tho later recanted) after I was done talking with him! I bet we all have stories about doctors that really stand out in a bad way!

However, most of my doctors, I cherish, especially my oncologist and my plastic surgeon, who are wonderful. Caring, up on the latest in their field, and most importantly, they listen to me and consider any info I bring them. Those are all characteristics I look for in my doctors. I rejected my first radiation oncologist and my first medical oncologist because they did not meet this criteria.

I can't do that for this one. God may have done it for me, but this is not a common condition; there aren't many doctors that actually treat it, as I said. It's not as simple as "find another doctor"...also, there's the amount of time I'd lose in treatment if I move. I've considered it, but the unknown of what sort of doctor I'd find (would I be facing the same thing all over again? Would I find a doctor that was actually up on the most recent methods for treating this?), the rarity of doctors of any ilk in the field, and the fact that I'm on state insurance and am limited in the doctors I can see, all have made it seem better to try and work with the doctor I have. After all, she is treating me, I know, according to what she feels is best; I'd like her to move more aggressively, and maybe she would have. Or maybe she wouldn't, and this was God's way of moving her out of the way.

Sometimes I want to wish the same illnesses on them, it's true. Nothing forces you to understand someone's pain like living it! But that's not what I'm called to do. God in His wisdom asks us to forgive, as we are forgiven by Him, and this is the path to peace. It's challenging! But I do hope that someday, these poor examples of compassion and competence would learn better, so they can be better human beings and help others instead of confound them. So, I pray that whatever pain life is sending their way, God will use it to help them become better people. We all get pain, that's part of living in a broken world. It's what we do with that that matters.

I am so sorry you've had such bad experiences! I am sure it's made you a very compassionate person, tho.

Yeah...I'm considering reporting that nurse. And yes, unfortunately, she was an actual nurse, not a receptionist.  

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Cynt
2X

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Reply with quote  #5 
Im so sorry about your doctor/nurse situation.

I had to post because your original post has stirred up some emotion for me regarding my own family doctor.

I have been with my family doctor for 4 yrs. She has seemed to care and actually has had her receptionist call me to bring me in to see how i am doing ect. I was diagnosed in June. July 1st I had my lung biopsy and it confirmed that the mass was indeed cancer. Up to that point I had hoped for the best but prepared for the worse. But really i was not prepared and i was devastated. Being in my mid 30's with a young child i was a wreck.My family doctors receptionist called and told me my doc wanted to see me.I agreed and so i went.When she entered the examining room i started to cry. My emotions and the pain of the lung biopsy still there.My family doctor actually asked me when I was going to stop crying? she had a tone of voice that was like, come on now enough is enough.The woman who i had once thought was empathetic did not seem so anymore.i left feeling very let down.Her receptionist has called to schedule me to come in and i have yet to do so.actually i dont want to go.im not sure what to do exactly.ive already been through two oncologists.im so tired right now.
Cynt

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Reply with quote  #6 
Ah, 2X, that's too bad. I'm sad to hear that.

Some doctors, some PEOPLE, just don't handle emotional displays well. It's too bad she let her own limitations and hang ups interfere in her expression of compassion for you. I'm surprised, really; as a doctor, you'd think she'd have more training in allowing people to feel accepted no matter where they were in their grieving process. Perhaps, as a family doctor, she does not have the experience in dealing with such serious situations to have given her the practice in dealing with her OWN reactions.

I'd be honest with the nurse as to how you felt, and why you felt that way. If you don't feel comfortable, don't go back. Perhaps your honesty will help this doctor see her own behavior better. She clearly has an issue here, and needs to deal with it.

And as far as your being "prepared for the worst"...you never really are, are you? You may think you are, but reality is always different. And anyone who "knows" how they themselves would react is totally fooling themselves. And anyone who judges someone else's reaction as inappropriate needs to rethink. They may not be able to realize how far off their estimation of how they would act vs. how they actually react is, until they actually are in a serious comparable situation, tho.

Reminds me of the (female) surgeon I went to, to get a second opinion before surgery. She tried to convince me not to have reconstruction before radiation, for she was sure I'd need radiation. I have to hand it to her, my first surgeon hadn't thought I had much nodal involvement (later turned out to have 9/10), but I was surprised at how unempathetic she seemed. In laying out for me the reasons to "go flatwall" for a year or so from surgery to reconstruction, she said, "After all, it's just a breast! You don't need a breast!" and when I got teary about all I was afraid I'd lose, she aggressively asked me, "What else are you losing besides a breast? What??" I didn't want to say, "estrogen", because she was clearly older, and likely in menopause already, so I didn't figure she'd be too sympathetic on that score, either. I wish I knew then what I know now, I'd have SO many other things to tell her in response to that question! 

I can understand her, intellectually. I'm a rational woman, and empirically, it is "just a breast", it is not necessary to my continued living, it's not even a significant handicap to lose it...empirically. Emotionally, it's a whole 'nother story! I wondered if she'd still feel that way if it was HER breast. She did impress me as a fairly non-emotional, asexual "female", so it's possible she would, but I also know, you never know til you've been there.

I never went back to her. I'm sad that a doctor who has chosen to work with cancer patients so clearly doesn't understand what her patients are going through. 

Dear lady, I hope you can find your spiritual and emotional balance! I will pray for you.

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Cynt
Calico

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Reply with quote  #7 
Cynt,
divine intervention would have been a huge mouth sore on that nurse so she would cut her verbal bullcrap for a while....cheeesh....this behavior is making me jump out of my skin.
I am so sorry that you had to deal with her.

2x,
I can emphasise...it is mean...they have been in this long, but we have not. Throw them into a cage with a 800 pound gorilla and see how they feel!!!

The surgeon doing my first biopsy mad me cry by poopoing my anxiety of his delay of my biopsy.

I remember the first onc that laughed at my question that I went into a sobbing frenzy, I had a doc that told me I don't need a gyn because I don't have girlie parts when a cyst showed in my tummy, then her nurse yelling at me and putting in the records that "I" argued. Had surgery on my non-existing girlie parts and there was actually leftover ovarian tissue and a cyst.

I am sure there will be more to come, as their behavior gets colder, our knowledge and perseverance gets greater too.
More power to us, ladies!

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Cynt

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Reply with quote  #8 
Well, got in to see the new doctor today.

The good news is, no Nurse Nasty here. The doctor was also nice, and was trying to help. I am doubting she would have done the three prong therapy approach that Edge recommended, anyway, but that therapy is currently impossible for me. For one, the current therapy I'm on has reached its medical limitations, meaning that my skin has thinned and can't tolerate more.. So no more of that for a while. She was willing to give me the other two medications together, until she discovered my last liver panel. She can't prescribe one of the medications if my liver enzymes are elevated. It's a fairly toxic medication, and needs a healthy liver.

This is the treatment course they typically prescribe, tho, so I hope that it will make things better. Trying to hope that it'll respond without the more aggressive treatment. It's so depressing to know that I will be dealing with this for the rest of my life, and slowly losing more and more to it.

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Cynt
Limner

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Reply with quote  #9 

Wow, just reading these posts wears me out.  Thank God we can bring it all here and get the understanding and empathy we need from each other.  The reason I am not a nurse - or a doctor, or medical care-giver in general, is because I am  sure I would not be able to be both scientific and compassionate on a regular basis to all patients - but I know this about myself.  One would hope that someday there will be some kind of profile scrutiny  for staff that will have interaction with patients.  My surgeon was an artist and a tender soul, but his para person was a harpie and narcissistic itch -bay.  She caused me great stress when I was just learning of my condition.   We can at the very least expect respect.  May we all be strengthened for the multiple things we have to deal with! 


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Indigoblue

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Reply with quote  #10 
Is there something called "Post Traumatic Breast Syndrome"?  There should be, because many women who have gone through the various stages of Breast Cancer and BC Treatment, suffer from continual shocks and stresses~ beginning before the initial diagnosis, and reverberating long after post-treatment... Some of us deal with stress far better than others; however,  when a "good doctor" is on board, it makes the all the difference regarding quality of life.

On the heroic side of the Breast Cancer experience, most physicians are there to help us survive, thrive, and live a long life.  Medicine is a daunting profession, while physicians, nurses, technicians,  suffer from post traumatic stress syndrome, as well.  Unfortunately, they can't take a vacation, cut back on hours, or take a sabbatical... resulting in overworked doctors, nurses, and technicians with huge chips on their shoulders... and patients who don't know or want to know, because we are trusting them with our lives...  

Thank you, for sharing your experiences.  I am reminded to be grateful for being blessed with the compassionate physicians, nurses, technicians, and kind spirits who are "there" when we need them! 

Sometimes it requires keen medical knowledge to know the difference~ a kind doctor might be a terrible surgeon, and a nasty surgeon might be the best.  The nurse who isn't smiling and happy-faced, might be the best nurse who will save your life...  Five years later, I survived Breast Cancer, not unscathed, with the lingering, angry, bad taste leftover from a few bad doctors and nurses.  After all this time, I remember the ones who saved me, and try to bury the ones who hurt me...  

Love,
Indi

Limner

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Reply with quote  #11 

"Post Traumatic Breast Syndrome"  - I love it Indie   !  You have such a witty way with words!  Love and pre-Thanksgiving cheer - Mary


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nosurrender

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Reply with quote  #12 
I thought I would share a good story... while I also want to send out my heartfelt prayers for good things for all of you under the care of nincompoops.

I had a surgery last week and this was performed in the main OR not the ambulatory. It also was performed by my GYN and another doctor... not my usual crew from Breast Cancer Central Casting.

Some of you know I have a terrible time with anesthesia and I have a specific "recipe" that must be used or I spend most of recovery in Respiratory Distress. I asked the anesthesiologist from ambulatory to help me get the good doctor who took care of me for the Lat surgery last year. He did. That kind hearted, giving doctor called me the day before the surgery to tell me he was coming in to do my case and not to worry.
My GYN was supposed to pick up his son from college- the first time he has seen him since he went away to school for his Freshman year. He came in to operate on me instead because it was an emergency and he didn't want to leave me in the hands of someone else.
I found out later that the kind anesthesiologist not only came in for me special, but it was his day off AND his birthday.
The partner of my GYN promised to keep the students away from my procedure- they wanted to make sure only the A-Team was operating on me.
Even though it was an incredibly stressful time and I am having a bit of a go at it recovering right now, I had the kindest care. I felt like I was truly cared for and not just another number.
I wonder if this was because it was a different area of the body? Maybe doctors don't think of breasts as "important" as other body parts... but I am grateful I had the care I did last week.

Love and hugs to you my friends,
g


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Limner

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Reply with quote  #13 

What remarkable people, Gina – and I know their going that extra distance is because you bring out the best in those around you.  For such a strong personality, you are a delicate flower, too.  I hope you are on the mend, out of the woods and pain-free. 

 

Sounds like you may not have had much of a Thanksgiving, though.  I did fly to NE with my son and his little girl.  It was a gathering of all known Krochmalny sisters and their children,  not to be repeated anytime too soon.  So I went, even though I didn’t feel good with this back pain.  The airports were the hardest, but it was so good to see my sisters and their grown children.  I hope to find out what is going on in my back this week somehow. 

 

Thanks for sharing that wonderful story and restoring my faith in our over-worked caregivers.  I' so glad that in this case you got what you needed.    XO Mary Charlotte


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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
mrsb

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Reply with quote  #14 
Yep Gina sometimes  those Angels come through for us puts anice human face on the medical profession.Hope you are healing Shelagh
nosurrender

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Reply with quote  #15 
xo xo xo to you Mary Charlotte and You, Shelagh!!!!

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