Just need to vent - scared

[Cath]

I saw my oncologist today for my 3 month check up. It's been one year since I had my last Herceptin. I once again asked if I could get my port out. I ask every time I see him. He said no after asking me if it was bothering me (it isn't). I've been receiving a PET scan every 6 months since I was diagnosed (July 2011) and I have to have another one in November. My oncologist is the greatest but today he had a student with him and he talked about me as if I wasn't even there. He said I was highly at risk for my cancer to return (didn't say that to me but to the student). I guess I kind of figured that out since he wouldn't let me have my port out and with doing a PET scan every 6 months but hearing him say that kind of scared me. So guess I am just writing for any reassurance. I know there's no guarantees but I really didn't need to hear that. I'm scared enough as it is. Oh well..............it is what it is. Thanks all for listening.

[KDR]

I would've stopped the doctor right there. I would've asked "if that be the case, why don't you still have me on Herceptin, wouldn't that be prudent? Please ask the student to leave, I must discuss this ALONE with you. You have never mentioned that to ME before." I really resent when doctors "change" or are "different" when students are around. And knowing me, I might have added, "Wow, you really talk about me differently when there's company."

You are a person, somebody's child...ask him/her how he/she would feel if he/she were left to feel like a specimen on a table to be talked about!

Ooooh, I'm so mad.

No excuses on this one.

['lizbeth]

Karen,

I love how you would have handled this. You are a fast thinker.

Cathy, that just was such a bad example for the student to learn to treat patients disrespectfully. I am so sorry that you were put through that.

Maybe its time to shop around for a more sensitive and progressive oncologist. After all - you deserve the best caused you've survived cancer treatment! I don't know if you are going to survive that oncologist, he's awful.

I have a funny story. My husband saw another oncologist while ours was deployed. The doctor was trying to impress a cute intern. So he draws a line with his finger and states "With this cancer everything goes along just fine and then Boom! It's all downhill" Down goes the finger.

My husband and I looked at each other with wide eyes. Scared the crap out of us for years. He's still here, lol, must still be on the going along line.

So if your oncologist is that rude, he's probably wrong too. You'll be around and healthy for a long, long time. You'll show him, lol!

[caya]

I agree with Karen on this one Cath...

There is no excuse for this behaviour... Quite frankly, I don't know if I could trust him again after this. At the very least, if it was me, I would send him an email to vent and/or get an appointment with him ASAP to discuss everything.

Sheesh, did this guy flunk Bedside manner 101?

all the best
caya

[Paty]

Dear Cathy,

I can immagine your fear. I have been through that so many times just by looking at my oncologist face when he examines each of my control reports, let alone discussing the agressiveness of our bc with another health professional. We are all at high risk, but don't think about it and just erase the thought of your mind. Try to be in peace, that is what we really need, you have received a good treatment. I have friends who have had positive nods and it has been years since they were diagnosed and they are doing fine. Put your life in the hands of God and trust that everything is going to be fine. Do not worry about 'venting' every time you need it, that's is why we are all here for. Lots of love,

Paty

[tricia keegan]

Cathy I'm sorry you had that experience which would have angered me no end, I had my port out a month after my last herceptin and my Onc only does scans in the event of pain or symptoms as why risk the extra radiation small as it is??
Your Onc is not calling the shots here, you are, it should be a team effort and in your case I'd be looking for a new Onc, insisting my port come out (you pay his bills after all) and refusing these six monthly scans unless there's a good reason for them!
You'll read here many times that Herceptin has changed the whole dire diagnosis for those of us who were fortunate to have it with early stage BC, it sounds like your Onc is living in the past to me, and while of course the risks of recurrance are still there we need to go forward with confidence and live our lives, not be reminded of the risks from the person we trust to keep us safe!!

[Cath]

Thanks everyone for your support. I knew if anyone would understand it would be all of you.

[starwishn2]

WOW... I am angry as well! I changed oncologist's several years ago, when I was dealing with platelet issues, because of the way she treated me and talked about me (called me her "problem patient"). I have been so much happier with my current oncologist. You deserve to be treated with the utmost respect! Maybe if you don't feel comfortable switching right away, you could at least go to another oncologist that is highly recommended, (for their knowledge and empathy) for a second opinion. I agree - if your doc thinks you are high risk - why aren't you on Herceptin?? What is he waiting for.

Hang in there!!
Jeri

[NEDenise]

To quote Shakespeare...
"Out, out damn port!"... or something like that!
Seems to me that YOU know more about what's good for you than anyone!
Denise

[karen z]

First, I would set up another appt. with your oncologist asap and have a serious talk with him about his behavior in front of the student and you as well as your treatment plan (re continued Herceptin, etc). I would also tell your doctor that you do not ever wish to be "observed" by students again without your permission ahead of time. Docs usually ask if observation is o.k. and you have the right to say "no thanks". I don't know where you live but I think it would likely ease your mind as well as be a good idea to get a second (or even third) opinion about whether other doctors would be doing anything differently or doing more at this point in your recovery. At the very least, your doc has proven that he is incredibly insensitive. I would be pretty annoyed at his behavior (o.k., hurt and angry).

[sarah]

Cathy this is upsetting. I agree with Karen, why aren't you still on Herceptin?
I would get another opinion and tell the new onc what the old one said. It would be good to know why he thinks it's likely to return and where he thinks that would happen. At least he's testing you on a regular basis.
take care
health and happiness
sarah

['lizbeth]

I love the advice everyone has given. I personally have a hard time being assertive, but being a cancer patient started changing that.

I like the idea of a 2nd opinion. This doctor is not working for you, and you are paying him! the problem is "He's just not that into you." Break up, find Dr. Right

My husband gave me a book by CNN Senior Medical Correspondent Elizabeth Cohen titled "The Empowered Patient"

Here is her advice on finding Dr. Right:

1) Take the doctor on a test drive.
Interview prospective doctors to see if you like the doctor and the staff. Some doctors won't do a "meet and great", so instead go in with a small problem and see how she handles it.

2) Keep your eyes open during the visit.
Is the office full of frustrated patients who have waited for hours? Is the staff attentive? Does the doctor rush you through the visit? Does she interrupt you halfway through your sentences? Are there pharmaceutical reps getting in to see her before you?

3.) Ask how your doctor handles illnesses that occur after hours.
We don't get sick on schedule. What's the plan if you need your doctor on a Saturday, or at midnight? Is she or one of her partners on call? Or will she refer you to an emergency room? While you're checking this out, ask whether during normal office hours you'll be seen by your doctor or one of her partners.

4) Google your doctor.
You can check the medical board for your state to see the status of lawsuits or disciplinary actions. I've personally seen this for a local plastic surgeon (not mine, another.)

5) Do a gut check: Do you like this doctor? Do you think she likes you?
Whether it's a doctor, a date, or a co-worker, we all have pretty good inner barometers for whether we like them or they like us. Listen to that voice. Don't see someone if you don't feel comfortable with her, or if you suspect she isn't comfortable with you. You could be depending on this person through some pretty tough times, and you want to enjoy a good relationship.


Or you can give your oncologist a second chance, but you need to set a strong boundary. He's got to show you a significantly more respect.

[Becky]

I broke up with my first oncologist. Not everyone knows (or remembers) my story but when I was diagnosed, Herceptin was not yet available unless you were Stage 4. I did dense dose AC followed by taxol. Then radiation. A few weeks after radiation was done, Herceptin did become available and the top oncologists recommended any woman who was 6 months or less from their last chemo to go and get it. I was 3 months out and ironically, had my first post treatment appointment with my oncologist the day after the announcement of Herceptin's availability. We talked and he said I was wrong and it was 6 months from diagnosis. I too was not that assertive even though I sought out other opinions initially and was very informed because of my own research and this board. I paid to see the ASCO webcast the day before LIVE so I knew I was right and told him so. He said my insurance probably won't pay for it (they did) but I said I didn't care. So.... he tells me, I am going to take your blood and monitor your tumor markers - I am going to watch over you (I already knew that everyone gets the CA27/29 everytime you go but this would be my first one). He said he would see me every 3 months. Off he goes! So, I called my initial second opinion medical onc at Sloan Kettering and she gets right back. Yes, she remembers me and yes, Sloan is giving the Herceptin but you must meet the criteria of less than 6 months post your last chemo (weeks later this was changed to 2 years). Since I didn't have my chemo there, she would need me to bring in my medical records. I made an immediate appointment. I called the current onc office and asked for a copy of my records asap. The next day, when I was picking my records up, my onc saw me (and I had just been there the day before) so he asked if I was okay. I said, I am now. Sloan is giving the Herceptin and I need these records to prove that I am 6 months or less from my last chemo.

You know what he said to me? He said, "Becky, all you had to do is ask me to give you the Herceptin." I almost wanted to hit him. I told him I was very clear yesterday. So he says, think about it but he wanted me to get a base line ECHO and gave me a script and made me make an appointment. I did go to Sloan and scheduled Herceptin there about a week after I was supposed to see him but he gave me the Herceptin (so I cancelled at Sloan because it was a far way to go for Herceptin). But here's the catch on when and why I changed oncologists. Remember the tumor marker test and how he was going to watch over me? Well, about 3 weeks go by (3 weeks of weekly Herceptins) and I have an appt before the treatment. And it occurs to me about the tumor marker so I ask, what was my tumor marker reading (I get copies now) and he looks and looks in my chart and goes out of the room and back in and says that it was not run. The nurses will take blood before Herceptin and it will get run. Well, I just lost it with him. I reminded him of the appt and how he was going to watch over me and the tumor marker and no Herceptin and then, the marker wasn't even run? And he says, well Becky, I have alot of patients. Oh man. Can't tell you how I felt - except, you have one less patient now. I switched to his young, new partner who I had heard fantastic things about (and he is fantastic and fantastic to this day).

It was uncomfortable breaking up since I was going to the same medical practice and saw him in the hallways(and saw him alot since I had just started my year of Herceptin) but I never have and never will regret it. My current onc makes me feel like I am his only patient and he is like us (totally up to date on everything and he knows I am and asks ME questions). When I see something cool research wise, I send it to him.

So break ups happen and it changed my life. I also changed gynecologists and family doctor (many times on this until I found the right one). People tend to go to a doctor because it is their doctor - even if they don't like them or can't communicate with them. I say they are employees who you hire to keep you well or to save your life. It's just gotta work - period. You don't stay with a maid who doesn't clean your house the way you want or go to a store whose employees ignore you. Doctors are the same. Someone I have hired to potentially save my life - this is the most important employee.

If a discussion with your doctor does not have the outcome you want and you don't feel comfortable, hire a new one. I did and so do many others.

[jaykay]

Well said, Becky. I "interviewed" oncologists when I was first diagnosed (after surgery). The one I chose was not the most convenient but was the one who made me feel like I was her only patient as well as having the credentials and specializing in breast cancer. 13 years later we are still together.

Cathy, I think I would have totally lost it if I had been in your shoes. You are an adult who has gone through the bc battles and deserve to be treated with respect. Your doctor sounds like he treats you like a child. I won't tell you what I think you should do; others have expressed that far better than I could. But it's probably time to break up with him!

Best

Janis

[Jackie07]

As a patient who had experienced 'undiagnosed' recurrence for 4 years, I actually feel your doctor is one worth retaining. He obviously is concerned with your welfare. He was probably just trying to to give you the information (that you are at high risk for recurrence) in a more implicit way since you'd been anxious to get the port out.

It is standard practice to keep the port for one year after treatment ends. I had my first port out a year after treatment ended (my 'good' arm is actually the bad arm because I'd had paralysis after my first brain tumor surgery more than 20 years ago) Because it's always hard to draw blood from my arms - showed my 'stabbed' finger to my oncologist one time, so I kept the port more than a year after the treatment for the recurrence had ended (at 22 weeks). I was told to get my port 'accessed' every six weeks and I faithfully followed the schedule until I became tired of the nagging - he acted like I was afraid of having recurrence again or having attachment to the port or something ...

Eventually I had the port removed (at about the standard one year after completing treatment = two year after my recurrence diagnosis) by the original surgeon when I received notice that she's leaving the area. And I've got a new oncologist since my oncologist had moved to a hospital near where he lives - about the same time the surgeon had left. My new oncologist is young and nice and does not have the bias that I might be hypochondriac ... [The technicians have been able to use a very thin needle (butterfly?)to access my left (weak) arm - the last two times they were even successful at the first poke!]

Correction: I think I might have kept my 2nd port more than 3 years after treatment had ended.

[Cath]

Thanks everyone for your concern and advice. I really like and trust my onc and do not want to change. He has been great to me through this whole ordeal and after thinking about what happened I "know" he made a slip up when talking to the student. He would have never hurt or scared me on purpose. I know sometimes words come out of my mouth and afterwards I can just kick myself. Also in all fairness, I probably am at high risk as my 1st PET scan 2 weeks after my mastectomy was questionable. It lit up under my right arm and lit up in one node on the opposite side of my cancer. My onc felt it had a low SUV so thought it was probably inflammation but couldn't be sure. Since then all PETs have been good. I hate the scare every 6 months of getting the PET scan but feel he is watching me very carefully. I know I can demand my Port out but I trust his judgment. So guess it's my fault that the port remains in. As for staying on Herceptin, I had to take the weekly doses as he felt the 3 week dosage would be too hard on me. My ECHO's went down each time I had them so he did not want me to stay on Herceptin forever. Thanks again for all of your replies. It's nice to have people stick up for you especially ones who know what I'm going through.

[lkc Gumby]

Hi Cath, You and I were both dxed with stage IIIC BC and the reality is we are at a higher risk then lower stages initially. The paying field does level off with time.

With what occurred with your doc, I think the doctor simply missed the mark when discussing your case with a colleage in front of you. It happens and is regretable, but does not negate his overall care of you.
I remember my first 3 month appt with my unbelieveably talented surgeon who blurted out" wow, who wouda thought?!" meaning he was surprised that I hadn't progressed. I was shocked, but I knew he was the best and now to this day, I joke with him. Doctors are human. It's not what they say it's what they do or don't do that really matters. Having said that I think we all need to feel totally comfortable with our docs, as I think this trust is imperative to us getting well. If you don't trust your doctors judgement or if you fel he is not treating you with respect then its time to change.

Regarding the port. It may not physically bother you, but if you feel it's trapping you from moving on, insist on it's removal. I did and I am happy it was out. After all, in theunlikley case of a recurrence a port placement is simple.
I wish you all the best!

['lizbeth]

Well you need to talk to your oncologist. I let things go and it really caused me a lot of unnecessary pain and stress. I advise that you need to let him know how you were affected by the last appointment.

When you are ready give the office a call, and schedule an appointment.

Go with your instincts. If you don't feel you need the port, then it is coming out. It means you won't need it. The doctor may not know but your body does. We are women, we have good intuition.

Have him do the follow up, but I believe you will be just fine.

[Lien]

Hi Cathy,

I agree with those who said the behavior was unacceptable, but if he is a good doc, and if you trust him, it might be best to just mention how you felt after his words. You wouldn't have to confront him, but just let him know that his words hurt you. If he is a good doc, he will understand and apologize. You could say something like: You know, last time when I was here, you were talking to a student, and you said that I had a high risk of recurrence. Somehow that really hit me very hard. I was upset for a couple of days afterwards, even though I knew in the back of my mind that my prognosis wasn't stellar. After two years I had begun to relax a bit, and your words brought back the fear and anxiety. It was also quite a shock to hear you talking to the student as if I wasn't there. Could you please not do that again?" If he starts to argue, just tell him: "I can't change how your words made me feel at the time." And just leave it at that.

I also think that he is being careful by leaving the port in. I read in your signature that your tumor wasn't visible on the mammo. Do they use the port for the Pet scans? Do they use it for taking blood samples? I am pleased he is doing regular Pet scans, so he can nip any recurrences in the bud.

Your risk of recurrence was probably highest during the first couple of years after diagnosis. After two years, you are over the first hump. At my two year appointment my doc shook my hand with a big smile on his face and said: "Congratulations! You made it past the first two years without a recurrence. That's a good sign."

I have been in Cancerland for 9,5 years now, and I know many people were diagnosed with stage III initially who never had a recurrence. I even know several people who were diagnosed initially with stage IV and returned to NED status. We don't know who will recur, so we might as well live as if we belong to the happy few who never recur. That way, we will at least have had a good time for a while.

I'm not saying that's easy to do. It took me quite a while, even though I had a more favorable diagnosis, but believe me, mine was scary to me.

I hope all the suggestions you received have been helpful and have given you some peace of mind.

Hugs

Jacqueline

[Adriana Mangus]

Well said Pati!

Love,

Addie