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Can't Decide...need some input

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babymelany View Drop Down
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    Posted: Mar 25 2013 at 3:45pm
Hi all, 

I am still recovering from my initial surgery of a bi-lateral mastectomy. I have been to 3 oncologists and have narrowed it down to two (the two which had the same treatment plan). Now, I can't decide which to go to....one is so much closer (maybe two miles) and I love the doctor, but I'm not sure I feel comfortable with the center as a whole and I don't like the hospital as I have bad experiences with it in the past. The other is much further, but I think more advanced in technology, I've always stayed with doctors in their network and  I love the hospital (been going there as needed for years). But I'm not sure I like the doctor I went to see. She appears to be very thorough and studied in Cleveland, she isn't as personable, but seems to very knowledgeable.

How important is it that I like the doctor and get along with him or her? Do I really spend a LOT of time with them or with the clinical staff? I have to decide quickly as I need to have all my tests done hopefully this week and I want to start next week when these silly drains are finally out of my body!


Help!?!



Melanie Confused
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 1:39am
Melanie,

Welcome to this site. You will continue to find many caring and knowledgeable women and men here.

You do have a lot of things to weigh in your decision. It does sound like either decision would be a
good one.    I do not have an answer or advice for you.   But maybe offer a few thoughts to think of in
your decision making process.    If the thoughts are not helpful, just disregard.

It wasn't completely clear if you know you don't like one of the doctors or if you are just unsure.
Would think you could give some thought (which I know you have been doing) as to just how unsure
you are.   Being a little clearer on this might help.

Sometimes the decision is not an either or decision. Sometimes there is a 3rd or 4th option.
            Maybe this might be a 2 step decision/process.
                  Choose the physician who seems best to have during chemo treatment.
                  After chemo treatment, decide if you want to stay with that onc or change.

Another thought: in which setting and with which oncologist would you feel the most comfortable
and safe...........feel you would have the best physician making any decisions that might be needed
during your treatment course..........feel you would be able to ask questions to.........
(and you add the things in the patient-physician relationship that are important to you)


Make the "For and Against chart":   (Sometimes the answer will be evident when you look at the chart)

                                                Doctor A and that center                     Doctor B and that center
Reasons for:

Reasons against:


You may consider doing the following.
Follow this request right now:
    Quick, right now, you need to make a decision about your physician, no more time,
        make a decision, right now ....................which physician did you chose............
then you can go back to your deliberation..........and maybe try the "quick-now decision technique"
       again if you wish.
(The Chart and the "make a decision now" you cannot put it off helped me when I was deciding
      between mastectomy vs lumpectomy. Every time I did this "quick, now", I would say mastectomy.
      I would still do some prolonged thinking and researching before I decided on the mastectomy.
      Glad to say for me in my situation with my variables that turned out to be the best choice for me.)

Sometimes "talking out loud" your decision making thinking helps some people.
You might call the TNBC Helpline and talk with a TNBC experienced oncology social worker. The
    social worker will not make the decision for you. Talking with the SW MAY help you sort things out.
    Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.        877-880-TNBC (8622)


Knowing you will make the best decision for you,
And with caring and positive thoughts,
Grateful for today............Judy

Edited by Grateful for today - Mar 26 2013 at 2:25am
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majjers View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 8:36am
I shopped for an Oncologist but based my decision on how friendly the staff was and what the chemo room was like (cheery, gloomy, etc). You will spend alot more time with the staff and interacting in the chemo room than you will with the Oncologist. It is important that the Onc be "cutting edge" and their technologies up to date (in my opinion).
 
You will make the right decision, I have no doubt!
 
Blessings,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 8:59am
Melanie,

Proximity is an important factor, as is the competence of the cancer center that you will be receiving treatment.

With regards to the medical oncologist, in my opinion, you need someone you trust and can ask questions. If the oncologist is intimidating and that causes you to clam up, that won't be good for your care. But I don't think you need to necessarily like the doctor at first blush -- my own oncologist is an acquired taste and I learned how to interact with her over time.  You need to feel that she has your best interest at heart.  The competence of the cancer center is critical -- unless you are getting a port, you will be stuck with many IVs and having a competent infusion center goes a long ways. Not to mention the number of tests galore over the ensuing months/years.

I'm not sure how far you are from the more advanced center.  Many of us have to travel quite a distance to get the care we want. The day of infusion is likely to be an all day affair no matter where you end up. There are things you can do to minimize travel -- most likely you will be getting Neulasta, a growth factor that boosts white blood cells that get knocked down by chemo.  Neulasta is administered 24 hours after infusion but it can be self administered (subQ) so that should save a trip. If the center is really far away, you may want to ask about getting the bloodwork locally (you need to have a CBC and chem panel before infusion to make sure you are fit) and if blood count is too low then you don't have to drive all the way to the center.

What kind of chemo is being recommended?

For TNBC stage 2, the most common regimens are:
1) TAC x 6 (taxotere, adriamycin, cytoxan), every 3 weeks
2) dose dense AC-T (adriamycin, cytoxan) every 2 weeks x 4 cycles followed by Taxol every 2 weeks x 4 cycles
3) dose dense AC followed by 12 weekly infusions of Taxol (the order can be switched)
The doses of each chemo will vary depending on the regimen so that you don't end up with toxic amounts.

Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 3:22pm


Hi Melanie, Just reading your post and only have to add that there is a lot to say about going with "gut feel" after you have weighed the facts. Also what decision gives you the most peace...take care...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babymelany Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2013 at 10:50pm
I went with my gut feeling which was my original choice....the further hospital that I trust. I can still do treatments on the days I need and get the shot the next day at the hospital to minimize travel (their cancer center is 20 minutes further than the hospital). I think talking to the oncologist today again helped to ease my mind, plus I've been asking everyone at the center what they think of her and getting some good info. I have to say, she really is very thorough and has considered things neither of the other doctors have. Also, she mentioned today that she is only 2 years older than me so she is going to try and do everything and anything she can had it been her, but as she said, it could have very easily been and so she can somewhat relate to my "young" age. I felt comfort hearing that from her if that makes sense. 


Being at the hospital I trust, love and watched grow up with me (they changed as technology changed and advanced, expanded as they developed) and the staff is always amazing (except for the night tech I got the first night after surgery). I should have known better to not pick them to begin with! The other hospital reminded me of a old folks nursing home and had that "gloomy" feeling and every time I left, the "in memory of" stones in the sidewalk just made me cry more. While I can appreciate that someone loved that person -  I don't want to be a stone in the sidewalk :(


Lee
I'm doing the dose dense AC-T (adriamycin, cytoxan) every 2 weeks x 4 cycles followed by Taxol every 2 weeks x 4 cycles. I was told by another oncologist that offered me the 1st option you mentioned that way too touch and not many patients made it all the way through it (he hadn't had one that had made it through it all, they all switched halfway through treatment to another regimen). 


I am hoping (provided we can get all the testing and results back in time to start treatment next Friday. Terrified and anxious to start at the same time. I feel like I am standing in line waiting to get in line for the highest scariest roller coaster ride of my life!!!! Only this time, I might actually close my eyes at some point and pray to survive the ride :)
SINGLE MOM OF 2,BRCA1+ Lump 11/12,DX 1/24/13 BC @age 36 (2 days B4 bday),3/5/13 Double Mast,Stage 2, Grade 3, 3.4 tumor 0/6 nodes
AC/T 4-7/13,Rec-chest wall 9/12,Proton 10-12/13,CT NED 1/14,Rec-5/14
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 5:38am

       Hi Melanie, Glad to hear the news. Hopefully you will be starting on Friday as you wish. Just wanted to say that once I was working with a surgeon who was, well let me say he did not have much of a bedside manner, very serious and was always lickedy split when walking from room to room speaking orders that I would have to remember in my head as there wasn't any time to right them down as he continued from room to room.

                    He was THE best surgeon, his incisions always healed, never any infections etc etc and if anyone of us needed surgery or new of anyone that did, he was the fellow.


                    Sometimes Dr's have so much on their mind they stick to that and nothing much else but the proof is in the pudding so to speak.


                     If you feel the need to close your eyes go ahead! and praying I did that the whole time I was being infused. I put these really nice praise soft songs on my headset after I was done praying and left the rest to the Lord!

                      Keep us posted and it sounds like you are in great hands!...Love, Annie

Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MarissaK Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 12:17pm
Melanie,
Just wanted to say hello and chime in. Glad to hear you went with your "gut". Sometimes extra travel is worth it to be in an environment you feel most at ease in (especially in this type of scenario). As Traci mentioned, this is a place you'll be spending quite a bit of time w/the nurses/staff, infusion room, etc. Hence, your surroundings & those you interact with will definitely influence your mood. Best (I think) also to have the most up-to-date technologies. I was a little intimidated by my oncologist at first too. She wasn't overly personable, but very knowledgeable and direct. She didn't sugar coat anything, but tried to deliver the negatives optimistically; always focusing on the positives of my case. She never made me feel that I was doomed, like the internet will! I came to realize it wasn't she I was intimidated by, but the facts she delivered. It's hard to hear certain words & how you choose to process the information makes a difference. My husband kept reminding me, "it's not her job to make you feel good, it's her job to do what she can to cure you".
You're the captain of your ship. If you want second opinions, seek them. A decent oncologist won't be offended to refer you to other sources. And, it's never too late to switch, if over time you are absolutely unhappy for some reason. The regimen your doctor is going with is very common and effective.
You are going to do great.
DX 5/18/12 at age 34. Stage IIIC IDC TNBC, grade 3, 3 cm (multiregional nodal involvement). DD ACT complete 9/5/12. BMX 10/15/12, ALND: 0/12 nodes. pCR. Rads x 25 + 3 boosts completed 2/6/13. BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 1:22pm
Hi Melanie,
You do have lots of things to consider and I know that you will make the correct decision about facility, doctor, hospital and everything.
 
MarissaK's observation of her oncologist would be what I would say about my own experience.  My oncologist wasn't "Mr. Warm and Fuzzy".  He was direct, intellegent, delivered negative optimistically, make me feel that he had a plan for me and it was going to work.  He answered all my questions.  He did not hold my hand, but I had total confidence in him.  I had the same dose dense chemo regimen plus gemzar that you are having.  With his help, I made it through the entire treatment process without missing a treatment.  (That was almost 7 years ago).  He has since then  told me that, when the counts are questionable for treatment, back off on the amount of chemo so as not to put a person in the hospital; but still get their treatment.  He said that everytime "Mr. Warm and Fuzzy" lets one of his patients go to the hospital instead of reducing their dose of chemo, the chance of their long term survival or total remission was reduced by 25%.  
 
My sister-in-law, who is triple negative also, went with "Mr Warm and Fuzzy".  She ended up in a clinical trial with only cytoxan and taxatere for her chemo.  She was stage IIIc, w/13 nodes involved.  He looks at the floor a lot and stammers when he talks. 
 
The 2 oncologists were in the same practice at the time she had her treatment. 
The staff matters immensely, the facility matters immensely.... but the oncologist sets your regimen of treatment and follow-up. 
 
God Bless,
Lillie
 
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MikeP Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2013 at 5:11pm
Hi
 
My 49yr wife was diagnosed last dec 2012 with breat cancer. We opted to go to Memorial Sloan Kettering in NYC after EH did a great job determining by extensive testing that she had a small lump. EH hospital recommended for whole breat removal since she has various reoccuring lumps. But we opted to go to Sloan Kettering in NYC and they gave us the option of the lumpectomy. She was operated and found out she had a 1 cmm tumor, clear margins and lymph nodes were clear as well. Braca test negative. We just don't know about treament surgeon suggested ACT at Sloan and the oncologist suggested CMF. At Hackensack Hospital in NJ she recommended ACT but would do CMF is we requested it. Of course follow up with radiation. But we both have issues with chemo and this diagnosis. Need some suggestions, we are also looking into Homeopathic to compliment.
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