Newly diagnosed breast cancer: trying to decide where to get treatment

Posted by ahurlbert30 @ahurlbert30, Jul 18 10:16pm

Hello all! I am 38 years old, brca1 + and just diagnosed with a high grade invasive ductal carcinoma er- pr- and HER2 +2 (which I guess means needs more testing to determine neg or pos).
Right now I’m waiting to see an oncologist, surgeon and radiation oncologist on Tuesday at the Sanford breast clinic in Bismarck ND.
I really want to make sure that I get the best treatment possible and am looking for any advice from anyone who can help. I full intend on seeing my 18 month old baby girl get married someday and want to do everything in my power to make that happen.

@ahurlbert30
That's no fun at all, is it. I'm guessing that Bismarck may not offer many choices, but the only advice that I can recommend is that, if for any reason you are not feeling good about any or all of your doctors, do not hesitate to get a second opinion. If need be, you might want to get your second opinion from the Mayo Clinic in Rochester, MN. You will want to feel confident about both your diagnosis and treatment plan. Best of luck to you on this new journey.

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I can imagine your emotions are all over the place. I am not familiar with Sanford, but encouraged by idea you are seeing multiple specialties.

I was treated a Mayo Rochester and appreciated having all my providers working together for best solution. With breast cancer, you need a team approach. As you can see from your upcoming appointments, there are many specialist involved.

As a previous comment mentioned, if you're not comfortable with a provider, seek a 2nd opinion. It is your body and your decision.

Be careful about seeking out to much info from internet. Lot of information out there, but make sure read accurate info. Want to be informed, but be careful that reading all the info does not increases your anxiety.

Before your next set of appointments, create a written list of questions you have so do not forget. If possible bring someone with you. Two set of ears are better than one.

I felt more comfortable with diagnosis after receiving my treatment plan. I felt more in control once I knew the plan.

Finally advice, do not try to be super women. Ask for and accept help from others. If needed, ask your dr to suggest a therapist to talk to. Your mental health is very important also, and having a professional to talk to may help you through a very stressful time.

Wishing you the best

Laurie

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It’s really overwhelming at first and you don’t know what you don’t know. Your first round of appointments will be a lot of information to absorb, so try to have someone with you to help retain all the new information. I wasn’t comfortable with some of my doctors initially, so I actually set up consultations with additional doctors that came recommended to me. In doing this, I was able to find the most wonderful Oncologist and Surgeon.
I wish you the best of luck. I’m sure there are good doctors in Bismarck and also Fargo. There is the Sanford Roger Maris Cancer Center of which you’re probably already aware. And don’t hesitate to reach out for help here.

Vera

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Thank you for your responses. Mayo is an in-network provider for mr so I have decided to atleast get a second opinion from there so I can here more than one set of doctors take on this.

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@elizm

@ahurlbert30
That's no fun at all, is it. I'm guessing that Bismarck may not offer many choices, but the only advice that I can recommend is that, if for any reason you are not feeling good about any or all of your doctors, do not hesitate to get a second opinion. If need be, you might want to get your second opinion from the Mayo Clinic in Rochester, MN. You will want to feel confident about both your diagnosis and treatment plan. Best of luck to you on this new journey.

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That’s where I am at with this all. I’d love to go directly to mayo but they aren’t in network so I’m worried about costs. I am the primary provider for my family and I worry about paying bills while all this is going on. People think because ima lawyer I should be financially set but I run my own business and if I don’t work I don’t make money. I have 3 kids 6 and under so I am very scared about all of this.

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Get a list of in network providers from your insurance then do the hard part: research them according to specialities in how their health grade rank and select one.

Liked by ahurlbert30

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@ahurlbert30 – I was diagnosed with same cancer as you at age 48. I was lucky to live in NY at the time and had good surgeon and oncologist. My oncologist was affiliated with Sloane Kettering in NYC and recommended a second opinion on treatment. I actually got to see the top doctor there and he agreed that my treatment plan was good.
I managed to get through all treatments without interruption and I'm still here.The one advice I want to give you now is to get a second- and third opinion if necessary. The time to do it is before you start any treatments.It should be with a major cancer dedicated hospital. I do recommend Mayo Clinic.
You will first see doctors tomorrow at Sanford. Once you have all information and results you can consider a second opinion to confirm what is planned is the way to go for you.
In situations like this I think- I have one good chance at this and I want it to be right.
I had 3 kids then – 11, 9 and 5.
Please let us know how your visit went- when you have time of course.

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Update: did all sorts of scans ultrasounds, a couple more biopsy’s. I am awaiting results of a thyroid biopsy and as long as that comes through negative then I will be Stage 1 grade 3 triple negative breast cancer. I have decided to work with the doctors at Mayo as I was thoroughly impressed with the way they handled my care on my first visit. I will be meeting with the multidisciplinary team next Wednesday and will get my treatment plan then.
I’m really worried about doing chemo with all this Covid. I live in North Dakota and no one here takes this seriously at all.
I’m trying to decide how and if I am going to be able to work at all…. stressful!

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@ahurlbert30 – To work or not to work was my question too. I ended up working the 2 weeks out of 4 when I was not taking chemo. I regret the decision now. I was taking risks since I was working with kids = germ factories. I was treated for 6 months. The way things are now with Covid it is risky to be out there, unless you can work from home. Once you start chemo- even before- you have to isolate, and let people know.

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@elizm

@ahurlbert30
That's no fun at all, is it. I'm guessing that Bismarck may not offer many choices, but the only advice that I can recommend is that, if for any reason you are not feeling good about any or all of your doctors, do not hesitate to get a second opinion. If need be, you might want to get your second opinion from the Mayo Clinic in Rochester, MN. You will want to feel confident about both your diagnosis and treatment plan. Best of luck to you on this new journey.

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I could not agree more. My friend is getting immunotherapy treatment for esophageal cancer at Mayo and has one of the top oncologists in the country.

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I am a two-time breast cancer survivor, so I understand your anxiety and fear. I applaud that you want to investigate the best team and treatment plan possible. I wish all the best for you.

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I had my first day of chemo today (AC) and I feel horrible. It might be worse because they said I would most likely feel good today and tomorrow but I feel horrible. Haven’t thrown up but man I have been close and kinda feeling like it would be better if I did. Thinking work probably isn’t going to happen and that makes life really difficult. My mom says everything that is truly important will still be here 6 months from now when this is over. Except here might not be here cause I’m not sure we will be able to keep our house 😂. Oh well I will take it a day at a time.

Liked by trixie1313

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So sorry your having a rough time with your first treatment. Did you dr give you prescription for nausea. I took some drugs prior to chemo, others were given at chemo appt, and still more I had at home for after chemo. I only had minor nausea, but everyone is different. I did chemo in 2018, here are some drugs I used: Ondansetron HCL, Prochlorperazine, Dexamethasone and Aprepitant .

Laurie M

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@ahurlbert30

I had my first day of chemo today (AC) and I feel horrible. It might be worse because they said I would most likely feel good today and tomorrow but I feel horrible. Haven’t thrown up but man I have been close and kinda feeling like it would be better if I did. Thinking work probably isn’t going to happen and that makes life really difficult. My mom says everything that is truly important will still be here 6 months from now when this is over. Except here might not be here cause I’m not sure we will be able to keep our house 😂. Oh well I will take it a day at a time.

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@ahurlbert30 – I felt horrible after my first chemo. Before the next one I was given meds for nausea and also rx to take at home. Made it slightly better,
Do you have disability insurance? If not you could talk to the bank about your situation.

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