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JenR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JenR Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 10:47am
Hello all! Yesterday we had a consult with our Oncologist and discussed my mother's course of treatment. As he put it, my mother is in a "gray area" because although the pathology results stated no axillary lymph node invasion, there were isolated tumor cells in her intramammary node. To my understanding, surgeons usually consider this neg. node involvment, whereas the onc. considers it pos. Based on that info and her cardiac history, we both agreed that TC was her best option. Now for the kicker - Her health insurance will only cover 80% of all costs, so for example the Neulasta med. will run her $550, per. She is scheduled for 4 rounds of TC and they will administer one Neulasta shot every time. She can not afford this on a $1400. SS check, let alone the rest of her meds. What bothers me most is that the office does not offer a payment plan of any sort (perhaps burned too many times)it is either cash or a credit card up front. They did refer us to Org. that offer co-pay assistance, but as luck would have it , one such org. no longer has funds available for BC, unless it's metastatic. Considered searching for another onc. but we did establish a good rapport with him and were satisfied with his treatment approach. It just seems like so much right now. She is scheduled for her first infusion on the 27th of this month. She is still healing from a debridement last Wed. so we're hoping the healing continues to progress. Between keeping my household running, continuing RN school,tending to Nana and my mother, I am really beginning to feel such a weight. At times I feel that I will burst and bawl, but nothing comes. I hear myself saying,"you can't break down. You can't afford to."
DX 12/14/12 58 yrs. of age - DCIS & IDC - 3cm. Simple Mast. 1/17/13 Grade 2 - 0/3 Nodes - Stage IIa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 12:07pm
Kaye,

If the 0.6 cm nodule mentioned on the path report is the tumor, then it is extremely good news - see this link:
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page2.html
Scroll to about two thirds of the way down under TNBC staging and prognosis is an article discussing this.

All the more important to have confidence in the path report. A study from Canada reports that 2nd path reviews resulted in significant number of changes :http://www.ncbi.nlm.nih.gov/pubmed/22564990.

Good luck!

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 12:44pm
Hi Jen,

It sounds like you are dealing with a lot of information as well as the stress of it all. Feel free to come here and rant.

I don't know if looking at another facility to do chemo would be a possibility? Some of our local facilities offer an assistance program that is based on income and provide a discount accordingly. You may also try the TNBCF helpline and see if they are able to direct you to any organizations that may provide additional assistance as well as contacting both your facility social worker and your Local American Cancer Society.

I am suprised that they are calling her a gray area. The node situation can certainly be considered either way by physicians but our only treatment option is chemo. I think it is pretty rare for doctors to not recommned chemo with TN. If you can find another local facility that may be a better financial choice, switching oncologists may be your best option. TN chemo treatments are pretty standardized and changing it to omit the Adriamycin because of the heart issue seems to make sense and I don't think you would have a hard time with another doctor seeing that as well.

Wishing you the best of luck navigating this tricky situation and finding what works for your mom! It sounds like she is very fortunate to have such a great advocate!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 12:45pm
JenR,

I am sorry to hear about the insurance problems.  I am curious that your mom's onc is recommending Neulasta.  Is she getting TC every 3 weeks?  Perhaps other ladies who have received TC can comment on whether they received Neulasta or Neupogen support.  According to ASCO guidelines, Neulasta is recommended for primary prophylaxis if a patient is getting dose dense (every 2 weeks) AC or TAC (every 3 weeks).  Does your mom's onc expect her to have unexpected issues with neutropenia?  A cheaper alternative to Neulasta is Neupogen.  Both are formulations of G-CSF, just that Neulasta has a longer half life and is administered one time whereas Neupogen's half life is on the order of days and has to be administered daily or every couple of days. The advantage of Neupogen is that the dosing can be tailored to a patient's neutrophil count. I received Neulasta when I was on DD AC-T.  When I was on cisplatin given every 3 weeks, no growth factor was allowed on the trial but I had a low set-point for my neutrophil count to begin with so after 1 cycle, I was already below the level needed to continue.  I came off the trial and received cisplatin with Neupogen support.  I received a total of 3 doses that lasted me the 3 weeks interval. Both Neulasta and Neupogen are sq injections and can be self-administered.

Costs (list):
Neupogen (filgrastim): 300 microgram/0.5 mL is $298.00
Neulasta (pegfilgrastim): 6 mg/0.6 mL is $3600.06


Another thought I have is that the price of medications and hospital services are all negotiated between the provider and insurance company.  Are you at a NCCN facility and can you get another opinion at an NCCN facility and see what the recommendation would be and the associated costs?

Hope things will work out,

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote JenR Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 4:02pm
DebB & Lee21, thank you for responding. The gray area was referring to whether isolated tumor cells in the intramammary node is considered node negative. He doesn't believe so, whereas the onc. surgeon believes it is. This entire morning and afternoon was soley dedicated to making and receiving calls. We are in contact with ACS and the Islip Breast Cancer Coalition. We were just provided a ton of contact info to pharmaceutical companies for coupons for Neulasta, but Lee,I also like your idea about the Neupogen. I was questioning the idea of the prophylactic use of Neulasta. It was said that they prefer the preventative measure because it reduces the risk of neutropenia and treatment interruption. I can appreciate that, however, it is tough to swallow when it comes with such a hefty price tag. The problem is her medicare premium is 20%, thus along with her other primary medications for CAD, COPD, and HTN, she has close to nothing left, if anything. Luckily I was just guided to contact the dept. of SS and seek a reduction of her medicare Part B and D premiums, as well a the NYS Prescription Savers card. Never heard of it, but I will give anything a shot. Lee, I have thought about getting a second opinion, but I don't think that the cost difference would be significant enough to risk making a concession in care. Honestly, I am scared as sh*t. Sorry.


Edited by JenR - Feb 13 2013 at 4:04pm
DX 12/14/12 58 yrs. of age - DCIS & IDC - 3cm. Simple Mast. 1/17/13 Grade 2 - 0/3 Nodes - Stage IIa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2013 at 9:32am
Jen,

It sounds like you have made significant progress with exploring the financial options- congratulations! All of those phone calls are a total headache but it truly does sound like you are making headway. Lee's suggestion of the Neupogen also sounds like a great alternative.

I was in the same exact boat with the nodes. I had evidence of cells (I did neoadjuvant chemo) but chemo had killed it. My official path report says node negative but my second opinion looked at it as node positive and it qualified me for a study.

No doubt, TN is big hairy monster under the bed scary and you have every right to be overwhelmed and stressed to the gills. You come on back here and vent and cry any time you need to. We have all dealt with the physical end, the beaureaucratic end, etc and we understand. Again, your mom is lucky to have you up to bat!

Hang in there!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2013 at 9:50am
Originally posted by Lee21 Lee21 wrote:

Kaye,

If the 0.6 cm nodule mentioned on the path report is the tumor, then it is extremely good news - see this link:
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page2.html
Scroll to about two thirds of the way down under TNBC staging and prognosis is an article discussing this.

All the more important to have confidence in the path report. A study from Canada reports that 2nd path reviews resulted in significant number of changes :http://www.ncbi.nlm.nih.gov/pubmed/22564990.

Good luck!

Lee

Thank you so much, Lee.  I will check out these links and I will let you know what my 2nd Opinion says.....just a few days away now.  I am looking forward to the appointment and yet at the same time I've been able to go back to my cushy feeling of not really having anything wrong with me.  The only thing that lets me know I have this TNBC beast is the after-effects of axillary dissection.  

I am truly thankful for this forum and everything I have learned here.  I am now "loaded for bear" so to speak and will be armed with questions for this 2nd Opinion doctor.  Hope I like her!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2013 at 9:57am
I can't edit my post, but wanted to add that I do have lumpectomy scar as well  to remind me that I have TNBC,  but that's not so bad at all.  Guess my surgeon did a great job.  Thumbs Up


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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: Feb 14 2013 at 9:02pm
Jen,

How fortunate your Mother is to have you for a daughter and her patient advocate.
You are doing remarkably with handling and dealing with all the things related to your
Mother's diagnosis.......that is, dealing with things during this time of great stress and
anxiety.
Most do feel, once a treatment plan is in place and started, on one level, things do seem
at least, a little better.

If the insurance/meds cost issues are resolved, disregard the following.
If not, here are some thoughts for consideration:

1. An noted above, the Oncology Social Workers at the TNBC Helpline are a great resource to
     start for any financial and supportive type concern/problem. 877-880-TNBC (8622)

2. Sounds like you may have already found the website: needymeds.org (For help with cost of meds)
     For a Breast Cancer diagnosis:
        http://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=48&disease_eng=Breast%20Cancer&dx=20
     Home Page:
        http://www.needymeds.org/index.htm
     State Programs:
        http://www.needymeds.org/state_programs.taf

3. Social Work Department at Hospital that oncologist/surgeons are affiliated with.
           It is possible that social workers at the hospital to which the physicians are connected,
               may be able to assist.   They may know the best way to deal with Neulasta/Neupogen
               costs in her situation with her insurance and with her physicians.
          With Medicare, some of the things to ask a social worker about:
                 Does Neulasta/Neulasta come under the "medical" vs " pharmacy" benefit?
                      If there is a "choice" as to which it is billed, which is better in your Mother's situation?    
                      There might not be a choice.
                 Is the cost different if the physician's office obtains the Neulasta/Neupogen versus
                        patient gets the med at the pharmacy and brings to the MD's office    versus
                        patient uses a Mail prescription service and again brings med to MD's office?

4. In addition to your Mother's needs, be aware and consider calling the TNBC Helpline
     877-880-TNBC (8622) for your needs and support.

5. There is a thread : Support info: spouse/main support person.   Info for caregivers.
     There a few resources for a spouse.......and some of the info in those resources can apply to
              any support person/caregiver.
     http://forum.tnbcfoundation.org/support-infospouse-main-support-person_topic9558_page2.html



With lots of caring and positive thoughts to you and your Mother,
Grateful for today.............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2013 at 2:58am
I don't know who the maker/pharm company is for these drugs but some drug companies have programs for individuals to offset costs or even donate drugs where it is a hardship. Contact the HR dept.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JenR Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2013 at 7:29am
To my extended family, thank you for the information. When all seems a blur, you all comfort me with clarity.
DX 12/14/12 58 yrs. of age - DCIS & IDC - 3cm. Simple Mast. 1/17/13 Grade 2 - 0/3 Nodes - Stage IIa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2013 at 3:02am
Thanks, Carol. I am having a difficult time right now, torn between terror at this diagnosis and fear that doubting my recovery makes it less likely. I know it is illogical but for some reason I can't seem to shake the anxiety. I am scared to read anything more about TNBC and am frustrated with my oncologist at Vandy who, when asked if she thinks the chemo regimen will work, crosses her fingers. She says I have an 85% chance it won't recur. I try to tell myself that those odds aren't so bad but, then, what are the odds of getting this diagnosis? Or of Vandy messing up the pathology from my second surgery? I am told it happens 1-2x a year. A least they didn't mess up the lymph node check. I just keep second-guessing my decision to go to Vanderbilt instead of MD Anderson. I know it is pointless now but every time I look at my son I get so scared. Sorry. I just can't let myself break down this way with family and friends as they are also trying to be strong and it makes it harder. Nights are always hardest.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2013 at 8:47am
Dear AllisonW35,
 
You are at the second stressful point of the journey.  First is the diagnoses and getting a plan in place and second is after treatment is finished and feeling as though you are 'out there' with no net to catch you.  We have all been there.  Wondering if we made the best decisions about treatment and surgery.  Wondering if we should have gone to another hospital.   I TOTALLY UNDERSTAND.
 
The thing that helped me get through the stressful period of time after treatment, was my job.  I also got involved in other activities as my health improved.  Keeping myself so busy during the day that when I went to bed at night I was able to sleep out of sheer exhaustion.   Also, just having something to do the next day that helps you feel "normal" again helps the mind to focus on more positive things. 
 
Please keep posting and let us know how your journey is progressing.  We are all here to help each other.  I would say that you have a long future ahead of you.
 
Prayers and 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 beck Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2013 at 9:31am
allison... we have all been there, and some days are still there , just take it one step at a time, i went through breast cancer twice, i was a mess both times, no one should have to have such a scare , i had the same fealings as you, and even today i worry did i do everything right, i just went with my oncologest, i was to scared to ask questions, i just pray he did what was right, it does get easier, but ill be honest, it never goes away , like my brother who had cancer said, you will always be looking over your shoulder, but soon when you do that , you will see where you have been, it goes fast, i dont know why but i can never believe how fast the treatments go, my kids are grown, but im raising 16 year old grand daughter , she was only 11 when i got my er postive in 2007 , yes it was scary, but just take it a step at a time you will get there , dont read the scary crap on the internet, just come here, we will help you we have been there, i didnt have much trouble with chemo, you will be fine ... Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2013 at 1:16pm
I was dx in 2001. Perhaps so lucky because TN wasn't named and I don't know how much they really knew at the time so no information was out to make it even more scary. Tx du jour then, was half of what is being given now. This was just before dose dense, SNB etc. I only had a lumpectomy which isn't listed on my stats below. Between working and my daughters that were only 9 & 13 (single parent) I lived in denial (but did learn all I could, just wouldn't consider negative possibilities) to power thru it all.

Upon finding this site 6 years later, I did read about the "scariness" of this dx. I had to rein myself in from doing the shoulda, woulda, coulda over tx differences. After all, I was 6 years out! It is great to now have all this knowledge but it does make it scarier and often the positive stories or those that have moved on are not always predominate or certainly not what sticks in our mind.

I found trying to stay in logic, worrying over what we know to worry about helps. Don't waste time on the unknowns. My favorite advice when I was dx was to allow myself 15 minutes everyday for my fears or pity party. It was great to give myself permission and have my time.

Good luck to you. There are so many positive things on this forum.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 10:31am
Arabella,
Thinking about you and wondering how your second opinion went.  Hoping that you are feeling very positive about the care you are receiving and the decisions you are making.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 9:56pm
Hi Charlene!

Thanks so much for asking!  I am in a dilemma and need all the help I can get in making my decision as to chemo or no chemo.  

I am asking all who read this and know so much more than I, what would y'all do....knowing what you now know and have been through with your cancers????   I will greatly appreciate any advice.
 
Just to refresh and restate:
I have Triple Negative Stage 1a, lump was 1.1 cm., clear margins, node negative, Grade 1.  I am 63 yrs. old and in good health.  I have my local surgeon and local oncologist and sought a second opinion at UAB.  My local oncologist says no chemo because it is 1 cm. range (the actual size is 1.1 cm).  My second opinion UAB Breast Cancer Expert says chemo because it is 1 cm. range.  She said had it been .05, she would say no chemo.  Both oncologists basically  say that my chances of recurrence are 13% without chemo and with chemo 10%.  My local onc who says no chemo says do not get a third opinion, let my opinion be the third opinion.   It has to be what I feel good about....what my gut tells me.  Both oncs agree that if I took chemo it would be  4 rounds of TC then, of course, radiation.   My local onc discussed all the horrendous "maybe" side effects with me and says that I'm at a point where chemo might not be any good anyway.  He said after 5-6 wks., it really doesn't have an effect.  My lumpectomy was on Jan. 10th.  None of my doctors made mention to me of any window for chemo to begin until today.   My surgeon who wanted me to get a second opinion sides with UAB onc and  feels that Triple Negative is enough reason to have chemo.  He also believes the pathologist downgraded the Grade and it should be at least a Grade 2 or Grade 3.  Neither onc acted like it was a big deal that it was a Grade 1....didn't seem to really affect their decision making all that much.  UAB resident (on the team of UAB onc) told me that path reports are very rarely incorrect when ran again.

My next appointment with my local onc is on Monday at 10:30 a.m.  He asked for a decision today....I asked him to give me the weekend.  He said whatever decision I make will be the right decision and I know this and believe it too but it is still hard for me to make a decision.  

Thanks in advance for any and all advice and thanks Charlene for remembering.

Kaye

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 10:43pm
Dear Kaye,
 
What a dilemna.  I personally say, do the chemo just because it is triple negative.  I don't base this on any statistics or stages.  I do believe, if you don't do the chemo, you will be in a questioning state of mind for a long time.  I can say the knowing you have done all you know to do brings an element of relief to your mind. 
 
Good luck with whatever decision you make.  We are here to support you.
 
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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 1:15am
Kaye,

You were so wise to request the weekend to make your decision about chemo.......
       and you will make a wise decision.

Have no advice.
Do have a few thoughts/considerations to share.
      - Would it help to speak to both oncologists Friday and ask each to review again the pros and
          cons of each option?      In their repeating the information, they just might use a new word or
          phrase that somehow will resonate with you. You might ask them what research/studies
          they can refer you to on this matter IF you feel that would help.    
          OR you may feel you have enough information from them.
     -   Re-confirm with both the recurrence information...........are they speaking of distant recurrence....
              are they both speaking of 5 year.....both speaking of 10 year........just to be sure the
              comparison information is for the same thing.
     -   Re-confirm the time period within which chemo is advised to take place if chemo to be done.
     -   Consider the For and Against Column method.
                  At the top of 2 columns put:                             Chemo                            No Chemo
                  At the side put:              
                                                    Reasons for                          _______                           _________
                                                                                                   _______                           _________
                                                                                                   _______                           _________
                                   
                                                    Reasons against                  _______                           _________
                                                                                                   _______                           _________
                                                                                                   _______                           _________

                             They say if one does this quickly, one might be surprised where most of the
                                      for and against reasons land up.

      -     Consider if you have a "gut" feeling on what to do.
              A feeling you can not quite explain......but something within you is leaning towards that decision.
      -     Consider if both oncologists have equal experience with TNBC.
              If one has more experience, would that be something to consider in your decision.
       

With very caring and positive thoughts          
Grateful for today............Judy



Addendum:
Kaye,
   Just read your post below.
   Would it be a consideration for you to ask the 2 oncs to talk on Friday and then you talk to
        one of them??
                      Judy

Edited by Grateful for today - Feb 22 2013 at 1:23am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 1:18am
Yes, Lillie....that was my line of reasoning as well.  I was so confident when I left UAB and then I go talk to my local onc and he has a way of making me look at the flip side.  Also, my expert 2nd opinion onc assured me that she would call my local onc and discuss my case before my visit today and he had not heard from anyone there.  So that was disappointing to say the least.  Guess I'm getting a hard knocks education on cancer as well as doctors.  My onc here said that going there for a 2nd opinion was a good thing, but that he has a whole line of oncs who would support his opinion as well and the decision was totally mine and to use my gut.

Thanks, Lillie, for your good advice and support.

Kaye

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