Wind knocked out of my sails

nitewind · 05-05-2007, 06:27 AM

That's the only way I can describe it. I went to the onc yesterday for my herceptin infusion. He examined me and said he wants to get an echo done on my heart. Ok, no problem, I simply ask him if it will be okay for me to miss two herceptin treatments. His answer " I don't know if it will hurt you to miss any treatments, I don't know if it will help you to have these treatments, I can't guarantee you anything". Okay, I know that there are no guarantees for anything to do with cancer, but he really knocked the wind out of me with that statement. I've been trying to stay so upbeat and feel positive. This statement really did a job on me, I've been really down since yesterday thinking, what's the point of having all this done, then? Don't know if he was having a bad day or not but he sure ruined mine, I thought it was so inappropriate. I'm set up for a scope and a colonoscopy on Monday and I'm sitting here wondering "what's the point"?

Mary Jo · 05-05-2007, 06:37 AM

Dear Susan,

First off, let me offer you a cyber hug. I'm so sorry your doctor "took the wind out of your sail" with his very insensitive comment. Sadly, many doctors fail the course on bedside manner and don't think before they speak.

I hope your echo went well and you can continue your herceptin.

Love and God's Peace I send you,

Mary Jo

nitewind · 05-05-2007, 06:55 AM

Thanks, Mary Jo. I don't know why I'm feeling so sensitive about this. It's been a long year and I'm trying so hard to stay positive. I needed that cyber hug!!

IRENE FROM TAMPA · 05-05-2007, 07:02 AM

first off, I think you should present your onc with a copy of Dr. Bernie Siegel's books. He will learn how to treat patient's with more compassion.

True none of us have any guarantees in life, but you know, you have to believe that everything you have done will be of benefit and will help you come through this. I am an 11 year survivor and live year to year thinking "will this be my last" and guess what,, 11 years later here I am enjoying my life to it's fullest . We never know what will happen to us but you must believe that it will be GOOD!

You take care Susan and THINK POSITIVELY

And Susan .. it's ok to have a pity party for ourselves once in awhile.

MJo · 05-05-2007, 07:11 AM

It sure sounds like he was having a bad day and I'm sorry he took it out on you. The news about Herceptin is good. I've got aches and pains from arimidex and my oncologist told me that it's so good at keeping cancer cells from growing that I should take it in spite of aches and pains. That's good news. You are early stage and node neg and have an excellent chance of being cured. The onc was having a bad day.

P.S. I had 9 months of herceptin and stopped due to drop in muga. I am convinced that 9 months was plenty for me.

DonnaD · 05-05-2007, 07:35 AM

Dear Susan,
I am so sorry you had to go through those comments from your onc. Doctors fail to understand we hang on their every word. One more cyber hug coming your way!

Our diagnose and treatment are about the same, but I had one lymph node involved. I am on Herceptin every three weeks and you may be on weekly. I get a mugga every 3 months and had a scope and colonscopy in Feb. I would encourage you to go forward with the tests. Many on this site have had to wait on Herceptin but were able to continue it again in a few months.

No, we don't have any guarentees but studies have shown Herceptin improves our chances by 50%! I am so thankful Herceptin is available to us. I try to stay positive, but there are days we all feel down. This is very normal.

Keep your chin up. You and your onc are in my prayers!
Donna

nitewind · 05-05-2007, 07:39 AM

Just wanted to say thanks again to all of you sweet ladies for caring. It means so much to me. Hopefully, tomorrow will be a better day.

Hugs

DonnaD · 05-05-2007, 07:48 AM

Susan,
I had someone from this site help me through treatments. If you ever need to "talk" e-mail me a private message.
I would love to find out more about you not just your cancer.
Donna

Jen · 05-05-2007, 07:51 AM

Nitewind,

I'm so sorry that your Dr wasn't very compassionate towards you. Unfortunately compassion isn't something that can be learned in medical school. Try to keep a positive attitude (I know this is easier said then done sometimes) and never give up hope. Sending hugs your way!

Jen

hutchibk · 05-05-2007, 11:23 AM

Nitewind - as true as your doc's words might have been (no-one really knows and there are no guarantees) - there are definitely more compassionate ways to say it!

Sorry he took the wind out of you! Keep your chin up...

chrisy · 05-05-2007, 10:31 PM

Wow, Susan, I'm sure you didn't need THAT!
First, it is definitely worth it - don't ever lose heart or hope. Keep the faith and as Irene said, believe all this "care" you are receiving is for the good.
As for your oncologist, I'm sure that did take the wind out of your sails. What has your experience with him been prior to this major blunder? We do expect, and NEED, our doctors to be both realistic AND hopeful. At the same time we have to accept that they are also human (although sometimes I wish they were superhuman). My oncologist once snapped at me for asking about some crazy and utterly irrelevant "symptom" - I found out later that day that 3 of his other patients had gotten bad news that day.

I'm so sorry you were on the receiving end of such a thoughtless response - for whatever reason. Stay on track, stay with the fight.

Love
Chris

MJo · 05-06-2007, 06:35 AM

Nitewind -- Chrisy said what I wanted to say. I have noticed changes in my oncologist's mood, although he tries to remain positive.

\My boss and I went throubh BC treatment together. We used the same oncologist. Her appointment was right before mine one day, and she got her oncotype score, which was pretty high. She later told me that she started crying pretty hard in front of the doctor and he tried to comfort her. When he came in to do my exam, I noticed that he was distracted and got impatient when he couldn't find the papers he wanted in my chart. I actually told him that I had plenty of time and he should slow down. Later I found out my boss pretty much got hysterical on him. If your doctor has been positive before this, I think Chrissy is right and he might have had discouraging news about one or two of his patients. If he is consistently like this, he needs some training in bedside manner for sure.

hutchibk · 05-06-2007, 11:03 AM

I think all oncs should get bi-weekly or monthly grief counseling! I can't imagine what it is like to carry the type of burden that they must carry every day.

Jean · 05-06-2007, 11:19 AM

Dear Susan,

I think that Brenda's point is well placed. We forget that our onc. are not just
dealing with us at times....that they are dealing with many who have had a negative report etc. But....and it's a big one - no excuse for him to say such a dumb thing to you. It was just plain dumb...no one has the answers with herceptin...but we do know it does work for a population of her2 woman.
That is good enough for me. Don't ever let anyone take away your hope
and faith in yourself....Also after the age of 50 you truly should have a colonscopy regardless of the bc dx. Remember early detection is part of the cancer battle.

I hope your onc is in a better state of mind during your next visit. If you find he is not then you should be prepared to mention to him -"how important your visits to him mean to you"....and you would appreciate he leave his negativity
at home.

Remain positive and strong....we are all here with you sister!
Hugs,
Jean

Erin · 05-06-2007, 12:16 PM

Susan,

....all of what everyone else said, and more. I am so sorry that your onc didn't realize how his comments would affect you. Sometimes after trying so hard to stay upbeat and positive, it is the off-hand comments that can undo us. We know from so many trials and so much research that Herceptin does make a big differnence. Hang in there :-)

Patb · 05-06-2007, 02:49 PM

Some Doctors just have terrible communication skills. Is he/she always like this?
I was diagnosed last year May 26 with a diagnoses similar to yours. I have
always tried to stay positive but sometime my Dr. will say "stop reading so
much" , "get on with your life", when I ask questions. I just say knowledge is
power and smile and go on reading or asking for help from this wonderful group of women. Take care and good luck with your test and I think the Herceptin
is a wonderful addition to our treatment.
patb

G. Ann · 05-06-2007, 05:19 PM

Hi Nitewind,
Jerome Groopman, MD, wrote a book a few years ago, "Anatomy of Hope." If I remember correctly (with chemobrain, who knows?), the main point is doctors should keep "hope" alive for their patients. Perhaps you could get a copy from the library and then recommend your Onc to read it!

As mentioned in earlier responses, life does not come with guarantees, but please don't "take knock the wind out of" you (us). I totally agree that oncologists must face difficult days and they are only human. I hope your next appointment and scan help you to remain positive and maintain a fighting spirit.