I just had my first appointment with the oncologist. He's having me schedule my own PET/CT scan and port insertion. And then his receptionist gave me an appointment card with the date of my first chemo (11/19). On my way out, he handed me information on each drug he planned to use.
There was no, "this is what to expect" discussion. Nor was there any discussion about the pros and cons of one specific drug versus another. He just said that every doctor tended to have his own 'cocktail' that he felt was safe and effective.
I wasn't even sure at first what the appointment on the 19th was for. I had to call back. When I asked the receptionist who booked the appointment, she said it would take about an hour. Then she had me talk to the nurse, who told me to allow 4-1/2 hours.
Instinct tells me to run the other way unless this is pretty par for the course.
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cmb35 Joined: Oct 2005 Posts: 1406 |
Nov 5, 2008 03:49 pm
cmb35 wrote:
Texas, My first med onc (chemo) appt was probably 1 1/2 hours. I met the nurses, talked about whether or not to get a port, learned about the facility, and then met with the onc, who discussed the pros/cons of chemo, a clinical trial I qualified for, and the survival stats for me based on my age and dx. This was a first appt/consult with an onc that I did not choose to go with (but only because I live 20 miles from DanaFarber, and it seemed crazy to go local when I could be at such a well-respected cancer facility.) My second med onc appt was at Dana Farber, and was much quicker, but that's because I already had the appt with the first onc. She confirmed that she concurred with my dx and treatment plan rx from the local facility, told me I would definitely lose my hair and gave me an rx for a wig, told me my ins would deny the nuelasta at first, and gave me the name/fax # to send the denial to in order to get it approved, and sent me out to reception to schedule my first chemo. She did inform me that DF uses "dose dense AC/T" as there standard protocol, and didn't really ask my opinion or give me any options re drugs. I didn't ask anything about it either though. I do have to "schedule" my own tests I guess, but meaning my onc orders the test, and then I get sent out to reception to book the date/time that works for me. They gave me info, but I didn't have a detailed conversation about what side effects to expect from chemo until chemo day. I always saw my onc first, just before chemo. She was not big on talking about the SEs, but gave me Rxs for the most common ones to go home with. Bottom line - I don't get a warm fuzzy feeling from my onc, she and I would never be friends. That being said, I have every confidence in her competence, and she willingly answers all my questions. You need to be comfortable, and it sounds like this office might not be the best match for you? Who else is on the team? I happen to really like my NP, she's just much more my type of person I guess. I never know which one of them I'm seeing until the exam room door opens, but I'm guessing I could probably request one or the other of them if I wanted to. If the office/location is convenient for you, maybe there is someone else you can work with? Best of luck to you, but one thing, it's a long road, and you don't want to have the added stress of feeling like you don't have full confidence in your medical team. Take the time now to investigate other options, it might delay you by a few weeks, but it's definitely better than having regrets, or trying to switch mid-treatment. Dx 5/27/2005, IDC, 1cm, Stage II, Grade 3, 1/15 nodes, ER-/PR-, HER2- |
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familyroks Joined: Apr 2008 Posts: 562 |
Nov 5, 2008 03:51 pm
familyroks wrote:
I don't know what the "norm" is but mine was very different. Luckily I had met with the Onc the day before my mastectomy. He called my surgeon and asked him to install the port. Then I was set up for a chemo class with the Onc nurses. This covered all of the drugs I would be given, the side effects to expect, etc. I had to have a MUGA scan and later a bone scan, both were scheduled by the staff at my Onc's office. It may be because they are all part of the same medical group here in my town. Makes coordination easier. However, the lack of info/chemo education would have me frustrated and possibly seeking out another Onc. ~Adrienne
Dx 4/3/2008, IDC, 2cm, Stage IIb, Grade 3, 1/8 nodes, ER+/PR+, HER2- |
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Sassa Joined: Jan 2008 Posts: 598 |
Nov 5, 2008 03:56 pm
Sassa wrote:
It has varied for me. My port was inserted at the time of my mastectomy and I scheduled the mastectomy. When Ihave my port removed, I will schedule that appointment with the surgeon. I scheduled my first CT/PET scan; all the others have been scheduled by the oncologist's office. Between the two methods of scheduling, I prefer to schedule my own appointments as I know what else I have going on in my life. If the appointment can't be made while I am present, I have had to have the oncologist's scheduled appointments changed twice. My doctor told me which drugs she was going to use and handed me the information sheets. My own research after the fact showed me that her drug choice was the drug treatment of choice for my type of cancer. Dx 12/6/2006, IDC, 1cm, Stage I, Grade 3, 0/9 nodes, ER-/PR-, HER2+ |
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PatMom Joined: Jul 2008 Posts: 395 |
Nov 5, 2008 03:57 pm
PatMom wrote:
Texas357, You need to trust your oncologist with your life...literally, so if you don't feel comfortable with and confident in him, find a different oncologist who you can trust. Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive.
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goldie0827 Joined: Nov 2008 Posts: 220 |
Nov 5, 2008 04:14 pm
goldie0827 wrote:
I wish I would have found the cancer center where I am before having any treatment at home. Everything in one building and they make all the appts., education on chemo, they get all your medical records for you and even fly you to and from the facility. They do all the tests, muga, pet, ct scans, labs, chemo, radiation etc. Medical Oncs and Radiation Oncs work together, surgery can be done there, they have a pharmacy, cafeteria with all natural organic foods, breakfast $2 lunch & dinner $4. Transportation. You name it. And the most wonderful thing......THEY CARE! Let me tell you, you feel it. Back at home I was not comfortable at all. Lets face it, we are talking about our LIFE. I think being comfortable with your team is highly important. Please feel free to private message me if you like. |
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lovinmomma Joined: Oct 2008 Posts: 977 |
Nov 5, 2008 10:16 pm
lovinmomma wrote:
I was not told about the meds I would get, side effects etc. My breast surgeon set up my port and my scans, but now any future scans I will set up with the receptionist. My onc office gives me very little info. If I don't ask it, I don't get much of the info. Dx 10/1/2008, 5cm, Stage IV, Grade 3, mets, ER+/PR+, HER2- |
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katirob Joined: Jun 2008 Posts: 41 |
Nov 5, 2008 10:34 pm
katirob wrote:
I agree with those who say if you're not comfortable, find someone else. When my mammo revealed the tumor, the radiologist did the biopsy then and there. She told me to 'go downstairs' to the Breast Cancer surgeon's office and book a consult - she was 90% sure it was cancer from the ultrasound. Once I met with the breast surgeon, he told me all my options (based on the pathology, chemo wasn't optional but required) and his office set up my appts for my PET/CT, my breast MRI, my bone scan and set up consults with an oncologist and a radiation oncologist. All within 2 days of each other, after checking into my availability. During the consult, the oncologist gave me a full explanation of what was going on, gave me two treatment options (two different 'cocktails') telling me the pros and cons of each and recommending the most aggressive, but didn't push me into it. She wouldn't even let me take notes - she wrote everything down for me. I walked away feeling VERY comfortable and knowledgeable that first day. Before my chemo started I had a pre-appt to talk with the oncology nurses (they call it 'chemo school') and got a tour of the infusion room. The nurses, who work with the patients during their infusions, shared how people dealt with different side effects and all that. Although i was certainly a little scared on my first day of chemo, it wasn't for lack of knowledge. So, you can and should expect better, for sure. Dx 5/30/2008, IDC, 2cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR+, HER2- |
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Lisa1964 Joined: Oct 2008 Posts: 681 |
Nov 5, 2008 11:46 pm
Lisa1964 wrote:
Run Texas run. What you experienced is not appropriate nor should it be tolerated. You will have a hundres of very valid and necessary questions over the next year and it does not sound like this is the group to give you answers or guide you. If they can't even be bothered to cooridinate your scans (the first of many by the way) how can they be sure something vital is not going to slip thru the cracks? This mess is scary enough without having to deal with seat of the pants docs. Don't let the beast attack you, you attack it!
Dx 8/28/2008, IDC, <1cm, Stage IIa, Grade 1, 2/17 nodes, ER+/PR+, HER2+ |
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Texas357 Joined: Oct 2008 Posts: 543 |
Nov 6, 2008 08:26 am
Texas357 wrote:
Thanks to your responses, I decided to trust my gut and run. The good news, since I really liked the oncologist, is that he has four offices and one of his other offices is in the same building as my PS. I walked in there before my PS appointment yesterday, and it was NIGHT AND DAY difference. The staff was smiling, they answered my questions, and they really seemed to care. I can't say that I'm ready for the next four months, but at least I feel more comfortable about it. Thank you so much! DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 positive lymph nodes
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NancyD Joined: Feb 2008 Posts: 1835 |
Nov 6, 2008 09:30 am
NancyD wrote:
I didn't have time to go through the local breast clinic. They were so busy that it was going to take three weeks to get a biopsy done. So I basically set up my own team from the beginning, although they probabaly wouldn't have been any different if I had gone throught the clinic. I also had my sister to advocate for me, make a lot of the phone calls for appointments and tests, and generally be a PITA. She got things done! I saw a surgeon first, before an oncologist, and he evaluated the mammograms. So he was on board from the beginning. I think he actually wrote the order for the core needle biopsy, which was done at another local hospital due to the lag time at the one with the breast clinic. Then I saw the oncologist, who determined with the surgeon that neoadjuvant chemo would be the best protocol. The next step was setting up the appt for the port, which my initial surgeon handled. I didn't see the surgeon again until the neoadjuvant chemo was over and I was ready to schedule my mastectomies. As tests were needed, I was given scripts and made my own apppointments. I think this worked better for me since I work fulltime. The appts had to be carefully scheduled so I didn't lose too much work time. I chose a third location for my rads based on it's reputation and proximity to work. That's the nice thing about being in the NYC area. Almost every treatment center has a good reputation because they have access to the best research/consultation at Sloan Kettering and other cancer centers. Yeah, they all think they're the best, and advertise that way, but really, they are always looking at what the other guys are doing, reading the papers written on treatments, and evaluating what is going on in their own practices. So, all things considered, I think my experience was not that different than yours. Initially, when I was still in shock from the diagnosis, it was great to have my sister there to help. After she left, I became my own advocate. Finding this site with it's wealth of information and support was one of the best things I did. It sounds like you are on the right road. Going with your gut about changing onc locations was brilliant! Staff makes a whole lot of difference in the chemo process. Good luck with your treatment. NeoAdj chemo 3/08 - 5/08; bilat mx 7/08; Adj chemo 8/08; Rads 9/08 - 10/08; Arimidex 9/08 - ?
Dx 2/28/2008, IDC, Stage IIIa, Grade 2, 4/10 nodes, ER+/PR+, HER2- |
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