Confused by Treatment Process - or Too Attached to My Surgeon??

Raili · January 2010

Hi everyone...
I am confused about the steps in the treatment process! I know it varies depending on each person, and each hospital, etc., but I was woken up this morning by a confusing phone call from the hospital, and I'm just feeling like a missed a step...

Brief timeline of my cancer journey thus far:
Oct/Nov - found a lump. Ultrasound, biopsy, mammo, diagnosis. Decided not to continue with my local hospital and get treatment 90 mins away at a better cancer center.
Dec (early) - Consultation at new cancer center. Met with social worker and nurse, got a bunch more tests. Met with surgeon (K) for an hour. We mostly discussed surgery, but we also talked about me having radiation at the satellite center that's closer to my home (we'll call that place NN), when the time comes. She also mentioned the possibility of chemo, and I freaked out and nearly cried, so she eased up/put that topic on hold for later, and talked briefly with me about the Oncotype dx test.
First week of Jan - lumpectomy surgery. Went well. Talked with K for a few minutes, but about surgery, not rads/chemo/next steps.
A week later - K calls me to talk about how I'm healing from surgery, and about my pathology report, and the need for a re-excision surgery next week to clear the margins. Did not talk at all about rads/chemo/etc.
This week - I call the scheduling dept to schedule the re-excision surgery for next week, and the 2-wk follow-up visit with K for early Feb.
THIS MORNING - I get woken up by a phone call from some random person at the cancer center whom I've never spoken with, probably a scheduling person, asking if I know when I'm "starting with Dr. so-and-so and Dr. so-and-so at NN," and I get all flustered from the surprise of it. No, I don't know when radiation starts... why would I?? I thought that determining the radiation plan was part of my follow-up visit with K, 2 weeks after the re-excision. Which would be 3 weeks from now. Then I asked who that other doctor was and what they were for, and the woman explained that she's the medical oncologist, and I'd be meeting with her to determine the need for chemo and/or hormone therapy. That freaked me out even more, and I blurted out, "I thought that's what the Oncotype dx test was for??" I was just so confused by it all that the woman ended up saying she'd first have K call and talk with me about all of this stuff before we scheduled the appointments with these new doctors.

Now I'm left wondering if this the typical procedure for everything and I'm just being a "difficult" patient...?? The thing is, it's been about a month and a half since K and I had that brief conversation about chemo/rads/next steps, and she hasn't talked with me about it since. I've been so focused on just getting through surgery and taking it all one step at a time, that I wasn't ready for some STRANGER to wake me up with a phone call about scheduling the beginning of rads and talking about chemo. I thought that my follow-up visit with K two weeks after surgery would be to talk about precisely these issues - when I should start rads and the logistics of that, whether or not she recommends chemo, and what the next treatment steps are, etc. Is that wrong?? Is the purpose of the 2-week post-surgery visit really just for her to say "Yup, your incisions are healing well" and send me on my way?? Is the problem actually that I've become too attached to/dependent on K?? I guess I was unrealistically wishing she could be my "everything" doctor, since she is the one I know and totally trust, the one person who has been with me every step of the way thus far... I'm feeling like a toddler with her as my security blanket, but dammit, I love her and don't wanna leave her. I have been so anti-chemo from the beginning, unable to even CONSIDER it... I can't imagine that some STRANGER would have anything to say that could convince me to consider chemo. I'm not even sure if K herself could convince me... but I'd at least be willing to listen to what she had to say.

Am I being unrealistic/difficult for needing a meeting/conversation with K before being able to take these next steps in treatment? Do I need to just suck it up and make those appointments with the radiation oncologist and medical oncologist and let THEM talk with me about these next steps? I'm feeling like I need K to push me out of the nest, because I can't bring myself to jump.

EDITED TO ADD: She's not just my surgeon. She's the Medical Director of the Breast Care Program...

redsox · January 2010

You certainly should be able to talk to the surgeon for an overview of next steps and who you want to be referred to, but the breast surgeon's job is to remove the tumor with clear margins and refer you on to other appropriate specialists.

You do need to see a radiation oncologist and a medical oncologist. After you have clear margins from the lumpectomy, for your stage radiation is standard of care. The Oncotype dx test should help guide chemotherapy decisions, but the medical oncologist is the expert on that as well as hormonal treatment.

AmyIsStrong · January 2010

I am sorry this call came out of left field and threw you so much. Totally understandable. But I think the different dep'ts got their signals crossed and the call came prematurely. I think what you wanted was for the meeting with K to review everything and then for her to gently hand you over to the next person to help you on your journey. And instead it was abrupt and not a good 'handoff.'

I don' think you are necesssarily TOO attached to her, but you wanted some more detailed follow up which you haven't gotten yet. I think you do need to make the appts with the other doctors (who knows - you may love them, too!) and at least see them, get feedback re your path report and their recommendations.If you feel at lose ends, call the social worker that you met with initially. They may have a 'nurse navigator' or something similar to help you through the various steps which are actually more disconnected than one would expect. That may be the ticket to give you more security.

in my case, the surgeon cut me, checked when I was healing and moved on. Well, she did put my port in also, and will take it out when I am done with it. I see her every six months now just for a quick check up. The oncologist is the one who is central in coordinating my care. I didn't love the surgeon that much so I didn't mind. I don't love the onc that much either. I LOVED the radiology oncologist but I went through rads and he dismissed me when i got my final check up. That was a shame b/c I really liked, trusted and connected with him. Oh well.

Please do not be closed to further treatment. I know it is scary but it IS doable. I wanted to do whatever was best to bring me to complete cancer -free health and ensure a long healthy life. I hope you feel the same.

PM me if you have further questions.

GOOD LUCK and be strong. You can do it.

Amy

dlb823 · January 2010

Hi, Raili ~ Sorry you're having a rough time at the moment, but I think that's kind of the nature of a breast cancer diagnosis & treatment. Unfortunately, since we normally have 3 or 4 types of specialists involved, and since some of us use more than one facility and have to coordinate our care, it's normal for communication to not always go smoothly.

Your first next step is obviously a re-excision. In the mean time, you will need to have a future app't. w/an oncologist, whether or not you will need chemo, which isn't determined yet. And you will also need an app't. w/a radiation oncologist to learn what's recommended there. I know the thought of chemo is very upsetting, but just try to keep an open mind for now, until you get the results of your Oncotype DX and have more information.

I think the key for you will be finding an oncologist and a rad onc who you like as well as you like your surgeon. That may mean interviews with several, so it's probably a good idea to set at least a couple of those app'ts. now for sometime after your re-excision. It's also very normal to feel attachment and affection for doctors with whom we feel secure at such a stressful time. You're fortunate that Dr. K has been someone you completely trust, and I hope that with her guidance you can find doctors you like equally as well for the next steps. My situation was similar to yours in that I used the expertise of an onc and rad onc @ a major facility to guide some tx it was easier to do locally. It worked out beautifully, and I'm sure your situation will too.

As far as needing to talk to Dr. K before making the other appointments, rather than waiting for that followup app't., can you possibly email her or call her about your concerns? She sounds like a very caring surgeon, and I'm sure she would talk to you on the phone about your concerns. Also, do you have a copy of your pathololgy from surgery #1 yet? It would be good for you to get a copy to know as much as possible about what that says.

Hope this helps, and please keep us updated on your situation. And just know that you will get through this... Deanna

ElaineD · January 2010

All the surgeon does is surgery. The decisions/recommendations as to further treatment need to come from a medical oncologist-so all sounds well. She has simply got your appointment in the system, and should be commended for this. It would be wrong of her to second guess any futrther treatment/tests you may need-she will not have the experience nor knowledge for this, and could give you completely wrong information, which would only stress you further. So sadly, I think you have to start letting go/ stop relying on the surgeon. She will follow you up, to ensure you are healing properly, but other than that will have very little contact with you. It really woud be in your best interest to now meet and talk with the rest of the people who will be taking over your care. There's no reason why you shouldn't get on just fine with them too!

Raili · January 2010

Thank you, everyone!!

Things are getting better, and I DID make the appointments.

I thought more about all of this stuff, and figured out why the phone call bothered me so much:

1) My best coping strategy has been to take everything ONE STEP AT A TIME. And because the re-excision is the next step, that's all that I was focusing on. I assumed that my 2-week follow-up with K would be the time to look ahead to the next steps. SO, this woman calling me out of the blue and attempting to schedule rads and a chemo conversation messed up my entire coping strategy, and opened the floodgates for me, in terms of anxiety. Suddenly, I was lying awake all night worrying about surgery, chemo, rads, side effects, finances, work, etc., all at once.

2) I AM too attached to my surgeon. When this person called to try and schedule oncologist appointments, I subconsciously took it personally, feeling hurt that K was trying to quickly hand me off before I was ready.

It would have been so much better if K had said at some point, "By the way, so-and-so will be calling you soon to schedule appointments with the medical oncologist and radiation oncologist." So simple! It would have prevented so much anxiety!

Realizing that I'm too attached to K and that she's "just my surgeon" and thus NOT the person I should automatically turn to with every question or difficulty that I have, I contacted the nurse who had been assigned to me on the first day. She had said "Come to me if you need help with anything!", but I never took her up on that. So this time, I did! We pretty much straightened things out. She explained to me that the hospital's procedure is to automatically schedule onc appointments once surgery is completed and the path report is back, just to keep the process moving, so patients don't have to wait so long for appts. She also admitted that the scheduling person, who simply received my paperwork saying the lumpectomy had been completed and thus proceeded to the next step of scheduling onc appts, wasn't aware of the fact that I need to first come in for a re-excision. This all makes logical sense... it's just the standard, automatic procedure... it's not at all a case of K just trying to shove me off to the next person! And the nurse assured me that I can always cancel or reschedule the onc appointments if I choose to, but it at least makes sense to get them scheduled now, so that I don't find myself in a position of waiting until my 2-week post-surgery follow-up visit to decide to schedule onc appts, only to discover that the next available appointment is a month away.

So, I made the appointments today, comforted by the knowledge that I can always change them if I want to/need to, or change oncologists.
And the scheduling person talked with K, and told me that K will talk with me/answer all of my questions about everything next week when I come in for the re-excision.

I'm feeling slightly better about it all, but still have been slammed by anxiety, which I wasn't expecting, and that sucks.

I've also been thinking about why it is that I'm so attached to K... partly it's because she's just incredibly caring and sweet, great at communicating and easy to talk with, and so funny she makes me laugh more than any doctor I've ever had... but also, it's because surgery is the one and only part of the treatment plan that makes total sense to me and isn't at all something I have doubts about. The decision to have her cut the cancerous tumor out of my body was a no-brainer for me. All other possible treatments from here on out - rads, chemo, hormone therapy, etc - are ones that scare the crap out of me due the side effects and potential dangers. I'm scared to go to strangers/new doctors for treatments that I'm scared of and don't fully "believe in," which is why it's so hard for me to leave the doctor who is both an awesome person and whose role/job I believe in 100%. At this point, I would gladly allow K to remove both of my breasts if that meant that I could skip rads/chemo/hormone therapy...but I know that's not quite the way it works...

Faith316 · January 2010

You're gonna be ok. Take it a step at a time like you said. Learn about only what you need to at the time and don't overload your brain with everything at one time. I have found that through my BC journey, I have met some of the nicest people. I also really liked my surgeon, didn't care for my first medical oncologist so I fired him. Really like my new medical oncologist, REALLY like my radiation oncologist and then when I was referred to MD Anderson, really liked my oncologist there as well. I also had a consult with a different surgical oncologist and he is my favorite of all. Although I know you like your surgeon, I'm sure you will find a lot of other good people who will help you through this like I did.

Good luck and keep coming here to the forum. Lots of good people here, too, who are willing to help.

Raili · January 2010

Thanks, Faith! Glad to hear you've found the oncs that were best for you!! Hopefully I will, too! Onc appointments in 3 weeks...

bcincolorado · January 2010

Hi:

I was diagnosed on a routine mamo 8/09 a "suspicious area" and called by our local "breast center" (where the mamos and biopsies are done) to come in and do a biopsy. They then scheduled me a follow-up appointment and a breast cancer nurse and the radiologist informed me that I had IDC and it was thought to be about .7 cm. The radiologist left the room and the burse "navigator" started scheduling appointments all over the place for me. They had already talked to my Primary Care doctor and checked my insurance and got referrals first it seems.

I got calls to meet with nutrition and radiology oncology and plastic surgery, etc. I didn't schedule them. The breast coordinater set it all up. I think everyone gets so overwhelmed sometimes with the diagnosis that it is hard to deal with all the doctors and keep it all straight and there is someone who coordinates things.

I did get one call from someone about genetic counseling appointment but since I had decided against BRCA testing (my grown daughter didn't want to know so I didn't do it) I cancelled the appointment. I kept the others and found them informative.

My husband was very ill several years ago and I learned then, don't be afraid to question medical staff or even the doctor. You need to be pro-active about YOUR health! Hang in there!

mawhinney · January 2010

You will be working with a team of doctors. In my case the BS was the leader of the team. Each one is a specialist in a particular area of your treatment. When your final diagnosis is made you may or may not need all of the initial doctors you have seen. For example, early on I met with the oncological radiologist but later it was decided I did not need radiation. Most of these doctors will have physician assistants that coordinate your appointments, care and can answer questions and concerns you have. Don't hesitate to call one of the physician assistants if you have any questions or concerns.

Ask for copies of all tests, procedures, lab reports, and surgeries. I find having the written reports helps me to better understand what is what.

Confused by Treatment Process - or Too Attached to My Surgeon??

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