Just Diagnosed and So Confused; Feeling Lost

Posted by kathysway @kathysway, Sun, Jun 2 8:19am

so far I’ve been told I have invasive ductal carcinoma estrogen rec positive strong (90-95%) and progesterone recp positive (weak3-5%) HER2 equilvocal (2+) fish pending I’m still not sure what all this means waiting for my onco score to come back how do I know what treatments to do first i was told i would’nt need chemo but after surgery now the dr said depending on what the onco score is I may have to have chemo with the Radiation should I get a second option before I do anything I’m feeling lost.

Liked by auntieoakley

I would wait on score as you are probably still healing then hear the oncologist out. If you are uncomfortable with plan then you should seek another opinion!

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Please know that it will get easier and easier to understand as you move forward in your journey. You can trust the Mayo Clinic website to answer any questions you may have.

Chemo will depend if you’re Her2 positive which the fish test will reveal. You’re in our thoughts.

Liked by auntieoakley

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@kathysway

so I'm going to say sorry in advance but I really need to vent cause I have no clue what in the world is going on I was diagnosed the first week of April had my lumpectomy and nodes removed on May 14 had a appt with the oncology Dr on the 28 of May was told by her they didn't have the onco test results back yet alright so now were at the 10th of June I called the Dr office to see whats what still no results so I got the name of the lab I called them I'm in NY their in California so they women on the phone tells me there's a problem with the insurance and she'll let me know so I asked her when they received the sample she tells me they received them on the 23rd of May my Dr office told me they sent them out on the 17th now i'm so upset i'm sitting here crying I haven't cried from day one but now I am I really don't know where to turn I don't trust the Dr's office and have no idea what to do

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Please contact your insurance company immediately and ask if your specific test is covered through your policy. You oncologist office should have determined if you were eligible before the sample was sent. I would then ask to speak to your oncology practice’s Director as this wait would be unacceptable.

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@lisakinpa

Please know that it will get easier and easier to understand as you move forward in your journey. You can trust the Mayo Clinic website to answer any questions you may have.

Chemo will depend if you’re Her2 positive which the fish test will reveal. You’re in our thoughts.

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thank you final got results after two days on the phone with Dr office and insurance the score is 18 so Dr says no need for chemo but now I"m still confused because I read that the score 18 and above says that chemo could help to prevent reoccurrence of the cancer but Dr says no need for chemo and after going through what I've been through with the surgeon office I'm finding myself questioning this Dr.

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@lisakinpa

Please contact your insurance company immediately and ask if your specific test is covered through your policy. You oncologist office should have determined if you were eligible before the sample was sent. I would then ask to speak to your oncology practice’s Director as this wait would be unacceptable.

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thank you it took me two days and one hour on the phone with the insurance company but I got my results within a matter of hours

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@kathysway

thank you final got results after two days on the phone with Dr office and insurance the score is 18 so Dr says no need for chemo but now I"m still confused because I read that the score 18 and above says that chemo could help to prevent reoccurrence of the cancer but Dr says no need for chemo and after going through what I've been through with the surgeon office I'm finding myself questioning this Dr.

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@kathysway
Firstly, congratulations on being proactive! If you have any doubts about your doctor's recommendation, then call another oncologist (outside of that doctor's network) and request a second opinion. Usually, you can get that visit within just a few days. (Bring all your test results with you.) If you are able, walk in to set the appointment rather than call. Frankly, it would be wonderful if you didn't need chemo! And, don't forget: the chemo decision is not just based on your onco score — rather, it's a combination of numerous factors including lesion grade, ER status, age, and such, and, in borderline cases, is based on a best assessment/experience.

Even in best case scenarios, nothing about cancer is exact science (or it would have been easily cured decades ago).

If you still are unsure about a recommended treatment plan, you have the option to request a third opinion, and even make your own decision. You have more control than you are giving yourself credit for. In the meantime, I'm sending you my best wishes and a big thumbs up!

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@kathysway

thank you final got results after two days on the phone with Dr office and insurance the score is 18 so Dr says no need for chemo but now I"m still confused because I read that the score 18 and above says that chemo could help to prevent reoccurrence of the cancer but Dr says no need for chemo and after going through what I've been through with the surgeon office I'm finding myself questioning this Dr.

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Get a second opinion. Be obnoxious if necessary until all your questions are answered.! It’s YOUR LIFE we’re talking about.

Liked by auntieoakley

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I had both the oncotype and the Mammoprint test done. You can request both. They are a bit different. Both showed that I have only a 3% chance of reoccurence if I take the endocrine therapy. In my experience, the lumpectomy and radiation were non events. I did not have the chemo. THE WORSE by far are the anti cancer estrogen blocking drugs you take for 5 years that have all these side effects. I thought I was done after radiation, but the worse was yet to come. I am staying on the drugs, but hate them with a passion.

Liked by sparklegram

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@francine6829, My sentiments precisely, Francine.

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@francine6829

I had both the oncotype and the Mammoprint test done. You can request both. They are a bit different. Both showed that I have only a 3% chance of reoccurence if I take the endocrine therapy. In my experience, the lumpectomy and radiation were non events. I did not have the chemo. THE WORSE by far are the anti cancer estrogen blocking drugs you take for 5 years that have all these side effects. I thought I was done after radiation, but the worse was yet to come. I am staying on the drugs, but hate them with a passion.

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What was your Oncotype score? Mine was 20 and now on anastrozole for 5 years😌

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I would hear the oncologist out, but I would still get a second opinion from outside of that doctors network. Then I would go on the Mayo Clinic site and read everything I could find. I also read a couple of good books on breast cancer, just to get my bearings while I was waiting for test results. Then I would use whatever doctor I trusted the most, in my case a surgeon I knew would have my best interests at heart. To help me decide on what I thought was best for my cancer.
I ended up with some surgeries, I thought that was going to be the worst, but no it was a walk in the park compared to chemo, and then oopherectomy and then radiation. Then tamoxifen for a year, then anastrazole. Yes there are side effects to all of these and some people tolerate one treatment better than others. I still hate the hot flashes and the joint pain but mostly I can count my blessings that I never have to take that type of chemo again. I am grateful to the nurses and my surgeon for helping me through it. It also gave me some insight into where to look for information, a few years later when my husband got sick.

I truly hope you can seek help to make good decisions whatever the plan is, if it is right for you, it is the right one. I know things are really scary right now, but once you get started it is a lot less scary and more down to business.

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Mine onco score was either 16 or 12 – can't remember which one. My mammoprint was even lower

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In 2015 I was diagnosed with Invasive Lobular Carcinoma Stage 2. My ONCO score was 27. I was ER positive but negative for everything else. I did have chemotherapy for six months as a preventive of recurrence of the breast cancer. I was post menopause so I am on Anastrazole for 7 years. If you want a second opinion then get one.

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I had a onco score of 18 my Dr says she wont recommend chemo for any test scores under 24 so im going back in because she didnt have the score till this week I want to understand her better because what I've read on the cancer.org after i put all my ifo in it recommends chemo with radiation and the blockers so I need to understand it all thank yall so much for your support and info

Liked by auntieoakley

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@kathysway

I had a onco score of 18 my Dr says she wont recommend chemo for any test scores under 24 so im going back in because she didnt have the score till this week I want to understand her better because what I've read on the cancer.org after i put all my ifo in it recommends chemo with radiation and the blockers so I need to understand it all thank yall so much for your support and info

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The score of 20 put me in the intermediate range so I just did the radiation and lumpectomy. Now on anastrozole..guess it also depends if any nodes were positive .. I had 20 out and none were positive.. Praying it all goes well for you 🌷

Liked by trixie1313

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