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Newly diagnosed... picking a dr. ?

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Ssmuls View Drop Down
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    Posted: Aug 30 2018 at 11:39pm
I was just diagnosed this week. 2.5 cm mass in left breast and 1 lymph node metastatic, triple neg and poorly differentiated. I gather this means fast spreading.

My question is I have made appointments at two hospitals two days apart. Can I go to both appointments to see what their plans of action might be and then decide? Would that be considered a second opinion? Do they even discuss that at your first appointment? They will have already received my medical records.

Diagnosed in 8/28 and my appointments arent until 9/11 and 9/13. I feel like that is a long time. I want to get treatment started asap.
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2018 at 5:34pm
Yes, those be considered a 2nd opinion and is a smart way to proceed. There's so much to learn it can easily be overwhelming. Here's some ideas.
1) ask each one if they have clinical trials available and how they could work for you. Not every clinic has every clinical trial available to them but it's worth asking because sometimes a trial will match your tumor and give you better results. The clinical trials I prefer are the 3's because that means they've already been ongoing with level 1 and 2 successes so side effects are minimal. A trial will provide to you, at no extra cost, a trial drug plus the standard drugs (not always, but generally). There is often more monitoring of your progress, such as blood tests and scans because the pharma manuf wants to be sure of your progress.

2) Be sure to get copies of your records every time you see the doctor or have tests, you may want to sign up for online access as well. I like the paper in my hand so I can scribble notes in the margins as reminders of stuff. Read when you feel like it to double check your results because this is a team effort and sometimes things get mixed up so you're a last pair of eyes to be sure things are going along the way you want.

3) Ask each clinic what they have for support. Is there a nutrionist? a social worker? A good social worker can help you navigate the billings and access outside help if you need a ride or help financially.

4) Ask if you can have your blood tests include Vit D levels and then start supplementing with a Vit D & Calcium/Magnesium supplement during treatment. Also, all of us have some level of anxiety or even panic during treatment, you may want the doctors to test your adrenals as you get going to be sure you're not over stressing them. Don't be hesitant to ask for an anti anxiety med. That's pretty standard and the whole point is to not have anything interfere with your treatments kicking butt.

5) Lastly, don't forget to breathe, don't be shy about asking for help and take good care of yourself. Many here seem to have a caretaker personality and often look out for others first and figure 'I'll be ok'. This is not that situation, pay attention to your own body, listen to it and trust the messages it's giving you.

So glad you came here, please don't hesitate to reach out whenever you need to.
   Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Sunny70s View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny70s Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2018 at 4:21pm
I wasn't too interested in trials until I learned that there is NOT enough info on seniors over 65.  I am 70 but because of round face and good genes look 50 (as two of my doctors originally thought!). Now I'm wondering if my oncologist wants to give me the full high 3 drug dose because she thinks I'm 50!  Meeting with her tomorrow after problem with initial start of chemo so will ask on that and trial. 

And glad I got the extra time to read all the concerns that are different for seniors.  Except for obesity and chronic fatigue syndrome, I'm healthier than most. But did get a couple stress-related chest pains going through left arm and jaw week after they put the port in. (They never ask you about stress chest pains, so I never mentioned it!) And I'm sure age had something to do with that. Probably too late to get in a trial, but will ask her.  Any other seniors out there? Will ask another day in a new thread, perhaps, since would like to share experiences.
DX/7/11/18 IDC, Right, 3.3 cm, Stage IIb, Grade 3, 18 nodes, Er-/PR-/HER2- Had surgery; just started chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2018 at 4:59pm
Hi Sunny, most of the clinical trials I saw don't give age restrictions as I'm sure they are counting on oncologist to go over health issues that might impact entry.

I was 57 when I was dx'd, there were no where near the number of tneg trials available that there are today. Strangely I just got off the phone with my oncologist's office. They call me every year as part of the trial followup, it was 10 years ago that I was dx'd so that says something about how strongly these trials believe in followup.

The anxiety is a very real deal, do ask your doctor about an anti anxiety med. Also if your curiosity is in overdrive you can go the the NIH or National Institute of Health by googling that name and clinical trials. It will take you to a large site where you can then type in triple negative breast cancer and get lots of trials pop up. You'll then need to search within that to see what trials are available in your state, at your clinic. I ended up going to a research hospital because they had more trials available than a smaller clinic.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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