New Oncologoist needed - Final Straw

linn65 · 01-20-2014, 10:08 AM

I am going to find a new ONC becaus today was the final straw!! I called and wanted my blood test results because I had it done Tuesday of last week. The lab person said I could look up the results on my own at Mycharts.com but I needed an access code from them. She said they should be up on the computer in 24 to 48 hours.

I called Friday in the morning and asked the front desk if my blood tests results came in, and I swear I heard Nurse Ratchet smart ass say I don't know I just walked in. Well, I waited all day for a response from her, and heard nothing. I call back today and asked for a copy of them (I see my primary care doctor today). She said no it is policy that the doctor interrupts the blood tests results before I can see them!!!!

I then called the hospital where I got the bloodwork done and she said I will send them to you but first I need to fax you an approval to get the results and she did. I just now faxed it back so hopefully I will know if I am in or out of menapause.

I wasn't supposed to see the ONC again until August, so I have time to figure out a new one. I just wish I knew which direction I should go; 45 minutes 1 direction, 40 minutes another or and hour and half to Indy. I just got lucky that my Indy ONC came to Crawfordsville every Tuesday, so I did not have to drive for all my treatments because that would have been brutal!

A life in the day of a Cancer patient.

KDR · 01-20-2014, 04:06 PM

Hey, there!
I like the idea of a new doctor, which usually brings new a new outlook, and a re-newed you...so best of luck.
I would start with the best-rated facilities/hospitals in your area and look for breast oncologists that way. Maybe someone here on the list can help. I have gone so far as to call drug companies to see if they could help by throwing some names out.
Luckily, I have a great oncologist, and she has people coming from all over the world to see her. I have seen them coming in from as far away as Europe, straight from their flight...more often I have seen patients coming from down south via Angel Flights to New York. Who wants to travel? It's an added burden, but this is your life. If I had to travel, I would, too.
Let's see what you come up with.
Karen

Jackie07 · 01-20-2014, 04:53 PM

I hear you.

I was so demanding that I could see my oncologist was trying to hold his temper ... When I griped to the oncology nurse - both of them I'd known for over five years by then because I was being treated for a recurrence - she said it casually that I could switch to a different doctor.

I did not want to change doctor! I wanted to hold him responsible for everything!

I asked for the BRCA test after learning the history of the Jews in Kaifeng, China - he did not think I fit the profile, but reluctantly ordered it.

...

Guess what I was trying to say is: Use the tension to your advantage. He might be correct because currently you could be in 'chemopause' and AIs will deplete the hormone from everywhere in our body which could lead to more side effects and speed up the aging process. So there are other things to consider. New study is recommending extending the use of Tamoxifen to 10 years for premenonpausal women. Even after I'd had a prophylactic hysterectomy/oo (due to family cancer history - a new cancer incident), I was still on Tamoxifen - for more than a year before switching to an AI (prescribed by a new oncologist when my oncologist moved his practice to his hometown an hour's drive away.) The new oncologist's decision was probably based on the numbers on my blood work, new research result/recommendation, ... etc.

Sending you good vibes.

tricia keegan · 01-20-2014, 05:05 PM

Sorry but don't see the problem to be honest and I usually prefer to visit my Onc for resutls and get them face to face which suits me more if I have questions.

jacqueline1102 · 01-20-2014, 05:27 PM

Hello Linn,

I live in Indianapolis, Indiana. I see Dr. Sumeet Bhatia from Community Hospitals. They recently received certification from MD Anderson so that's been an interesting merge. I like Dr. Bhatia because he listens to his patients and actually appreciates research that I bring in for him to read. He really rolled the dice with me having approved surgery and radiation on this ole' stage IV inflammatory breast cancer patient. I had asked him to call Dr. Cristofanelli with Fox Chase Cancer Treatment Center and he did. Not too many physicians would put aside their ego to consult with another specialist when the patient asks them to do just that. Feel free to PM me if you wish. Also, we do have IU Simon Cancer Center which is pretty fantastic. The SONfoundation is a new facility set up for patients who travel to Indy in which the patient stays at the facility for only $15.00 per night and they are offered a room and food. Please check out the SONFoundation website. I hope this helps.

Take care,

Jackie

linn65 · 01-20-2014, 08:54 PM

Tricia my next appt with him isn't until August, I think I night Check into Indy docs.

IrvineFriend · 01-20-2014, 10:35 PM

Sorry about all this. You asked a pretty simple thing, to see your labs. I've asked for them before without issue. You're done with all the treatment and the drive is not going to be an issue like before. I really, really disliked my first Oncologist and so happy I made a move. Not on this board, but in the office I have seen so many older patients just accepting what their doctors recommend and not questioning. Young and old have so much more information now - it keeps them on their toes! My Oncologist provides me research papers and/or points me to them. A good one is out there for you my friend!

linn65 · 01-21-2014, 06:31 AM

Karen....An Angel flight??? An Angel flight to New York sounds nice just because I have never been!!

Jackie, that makes total since too about chemopause, and I don't want to do more damage or age more then I already feel I have. I find more out from the people on this board then my doctor, and I find reassurance from it!

Tricia, he ordered the blood test and scheduled me to come back in August. I guess my face to face would have to wait until then.

I know this might sound bad, but I almost feel they did treatments for over a year and now I don't have any. Now, it seems even more like who cares if you get a new ONC.

Jackie, I will PM you about the doctor's in Indy!! Thank you very MUCH!!!

Isn't it lovely to wake up in Indiana with MORE SNOW!! Winter can be over now!! Bring on Spring!!

linn65 · 01-21-2014, 06:49 AM

Julie,

Your ONC is my kind of ONC I would like to have!! Listens, understands and takes the time to teach me which makes me feel better. I see exactly what you have said about people just doing and following along what the doctor tells them without question. I am not trying to be argumentative with my ONC, but I am not the type of person that just follows along blindly with anything I do in life. I am a question asker.....(It does get me in trouble). It is not because I am questioning people its because I am trying to understand and learn, but I know sometimes people take it the wrong way like I am questioning them and then I explain myself to a fault and that can get me in trouble too.

Thank you Julie for your encouragement!! Instead of an Angel fight to NY and Angel flight to CA....Awww sounds nice.

BonnieR · 01-21-2014, 05:31 PM

Itsort of sounds to me as if the issue is with the office staff, not necessarily the doctor. Have you told him your concerns? I'd hate to see you having to travel rather than getting this straightened out. JMHO
Keep the faith

jacqueline1102 · 01-21-2014, 05:54 PM

Hi Linn,

I sent you a rather long PM.

Have a nice evening,

Jackie

chekmark · 01-21-2014, 07:13 PM

Wow, I agree with Bonnie, staff may the problem. I have worked at hospitals and doctors offices for years and your records are yours no questions asked, u don't need to sign a release unless us are sending them to another doctor. EMR (electronic medical records) are pretty much public knowledge these days so there was no reason for you to not get them when asked unless there was a problem and your doctor asked them to not disclose that info. I recently had my onco change my appt due to the holidays and her moving locations, I had a blood draw and I asked for my results since I would be waiting another month to see her, They called me back within minutes and told me all was good.

Does your doctor have an email that u can maybe address these issues to personally. If u aren't happy and u r anything like me it would be awkward going back and facing that staff or doctor.

Good luck, I hope things work out. How are you feeling by the way?

Darlene

linn65 · 01-21-2014, 10:52 PM

I have been having trouble with neuropathy, so I got a new drug called gabapentin so hopefully it helps. Also, they took 3 viles of blood for B6, B12 and D. Not sure what that shows but sounded liked a good idea. ��

suzan w · 01-22-2014, 06:37 AM

Having a great doctor is so important. My oncologist was very `business like`, not at all warm and fuzzy. So many times I would leave her office feeling very put out that she wasn't very...nice...My partner would point out that I didn't want NICE I wanted professional. I needed someone who focused on the best battle plan and fought hard to make sure I got what I needed. Everyone else could be nice...nurses, secretaries, billing dept...etc.
My very business-like oncologist saved my life! When she discharged me after 6 years...I gave her a big hug anyway because I am warm and fuzzy, and alive!!!
Good luck with your doctor hunt!!!

linn65 · 01-22-2014, 12:35 PM

My doctor's office just called....Nurse Ratchet and she said the doctor left a hand written note that you are post menapausel and he is taking you off the Tamox today and they will call in a prescription for Arimidex starting tonight. Then she faxed me a blood test for FSH, Lutanizing hormone and the Estradro level in two months to do.

Now, this all makes me uncomfortable;

1st the doctor said I was too young to be in post-menapausel he thought and only ordered these tests when I asked him too. And told him that the Tamox might be crosstalking and doing me more harm then good. As I stated previously he acted like that was only in rats and mice 15 years ago and it is not accurate. I pushed him and said from what I read it is very possible because of my ER30 going to ER73. He tired to blow me off again....Then I said you know my path report was not good after all my treatments were done, I asked for Perjeta at the start of treatment and today would I get Projeta??? His answer absolutely, and I said I wanted it then and he said NOWAY I coudl have got it, but I don't believe him. Then, I said I want to be proactive if possible because I want to live.

I think he ordered the tests just to suffice me and then all the trouble in getting my results. When I read it I thought, "Wow, I am right I am post-men. However, I thought maybe I don't understand it correctly.

Now, I think OMG I am not a doctor, and I can not be in charge of my own treatment. The part that I am afraid of is what Jackie07 said and what if the test is inaccurate, and I deplete all my hormones and make everything worse. Did he just change me because I said I wanted to and maybe my feet and hands wouldn't hurt, maybe no cross talk, and I should be on an AI if post-menapausel.

Now, I don't know what to trust, and I hope I am doing the right thing. Geez, this sucks!! Because what in 2 mos if my tests say I am pre-menapause then what back to Tamox??? I am confused......ugh

Lauriesh · 01-22-2014, 01:36 PM

Hi Lynn,
I have no advice regarding the hormonals, as I am er-, but regarding the perjeta, the FDA did not approve it for early stage patients until the end of sept, 2013.
While some Oncs are willing to give stage 4 patients drugs " off label" ( I am now taking perjeta "off label") , very, very few will give early stage patients " off label" drugs, and even if he would have agreed, ins, in all likelihood, would not have covered it , as it is very expensive. ( about 7 -9 thousand a dose).

You were given the standard of care treatment at the time you were diagnosed.

linn65 · 01-22-2014, 01:58 PM

Maybe so but if the FDA new in 2013 it worked well then they new the year before too. It is just awful that something like that could be a game changer in someone's life but it all comes down to Insurance and the FDA.

My Herceptin was over 10 grand a month and it is still perplexing to just wait and see and hope it worked. Also, why didn't he check or do something after 2 or 3 treatments and change something up because it was not working. After all 6 treatments it just got worse, so I don't know maybe it is no one's fault or maybe he could have checked and done something different. When you are right smack in the middle of it all a person can not think past just getting through what is in front of them. Now, with my collateral damage I wonder about could I have done something different and didn't know. Did my ONC just think I was a number among many??? I put up with alot of stuff with this treatment center, but I was always just trying to keep my head above water with no energy to question which is normally my personality.

I know I am complaining the last couple of days, but I have been exceedingly frustrated. But as my Grandma would say...This too shall pass.

Laurish are you doing alright with side effects from Herceptin and Perjecta together???

BonnieR · 01-22-2014, 01:59 PM

No, you are not a doctor, but at the same time you need to be in charge of your treatment! It's a conundrum. None of us are as learned as doctors but we quickly get good at knowing our personal situations and knowing the questions to ask. We need to base our decisions on the information we are given and if we are comfortable with it. I would not hesitate to take your questions to another doc for a second opinion. And maybe switch if you don't feel you can communicate with current doc. Also, I used to phone the American Cancef Society. They were very helpful in reviewing specifics with me
And remember that even though we all share similarities, each of us is an individual and not one size fits all
Keep the faith

linn65 · 01-22-2014, 02:10 PM

Thank you Bonnie and you know my ONC is a nice guy, but every single time I see him it is the samething. What are you doing for fun?? Have you went out dancing??? First couple of times I thought awww he is so nice, then I thought nothing is fun about this crap and quit asking me that. Now, I feet at this very moment like I want to chop them off and he still wants to talk about what I am doing for fun......errrrrr. Then when I was leaving he said you are a very smart lady, and by then I thought is that supposed to make me feel better by telling me you think I am smart!! I don't care if you think I am, and I don't need that validation from him. You know one thing I worry about is okay I hope not but what if I have a reoccurance. I just think I don't know if I would have it in me to drive 3 hours round trip for treatment. Maybe he is really on top of it all and really intelligent about things I don't know.

Again, I am frustrated today because of pain, tired and TODAY JUST SUCKS!! I will start over tomorrow, but I sure wish I had someone I felt I could totally trust and do what they advised and felt good about it.

BonnieR · 01-22-2014, 03:08 PM

I think your last sentence says it all! The pain and frustration can really color everything! I look back on my treatment period and can't believe how irrational I was at times. I was a different person. Fortunately my cancer center had a psychologist I could talk with and get some perspective. Is there someone like that where you are?
I'm not saying you are being irrational but this is a terribly stressful time and our tolerance levels can be tested!
There is that drive which you mentioned too. No one wants a long trip if it can be avoided. Especially if in active treatment
I hope you can find some resolution and peace of mind. And maybe have a heart to heart with your onc. And try not to second guess things which are behind you. That can drive us crazy!
Tomorrow is a fresh slate. Keep the faith