Just Diagnosed and So Confused; Feeling Lost

Posted by kathysway @kathysway, Jun 2, 2019

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.

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I had my surgery to remove the tumor last year on May 3, 2018. Didn’t get the onco information until June, a little over 4 weeks. My ‘results’, explained to me in simple terms that I could understand were; the type of cancerous cells I had were slow growing, and if there should be a recurrence, it’s likely that it can be caught at an early stage again. I was a stage IIA. However, the doctor also said, there are never any guarantees. ‘Likely’ isn’t the word I would have wanted... but it’s all the medical professionals can give. I am very fortunate to have Dr. Saundra Buys as my oncologist. She is considered one of “best cancer doctors in America”, and an expert in breast cancer. I have complete confidence in her, but the bottom line still is—CANCER SUCKS!!!

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@kathysway

the onco score I had my surgery on the 14th of April and still don't have results

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@kathysway
That does sound like a long time. If it were me, I'd call the oncologist to find out which provider they were waiting on. In my case, it was Agendia which provides a MammaPrint score. And then call the provider (Agendia is 888-321-2732) to see when it expects to complete and send the information. You never know... it could have been sent to an incorrect email or fax address... or sitting in another patient's file... or perhaps the provider can give you an estimated date, etc. It's a thought....

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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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@kathysway
Get your pencil and pad at the ready. Document everything that you know to date. First thing in the morning, call your insurance company and ask if its personnel can shed any light on the situation. Ask to speak with the supervisor/manager if what you're hearing doesn't make any sense.

One of the first things that I learned in this journey was that I had to be my own general contractor, so to speak. You've got this, Kathy! Go get ' em!

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@elizm

@kathysway
Get your pencil and pad at the ready. Document everything that you know to date. First thing in the morning, call your insurance company and ask if its personnel can shed any light on the situation. Ask to speak with the supervisor/manager if what you're hearing doesn't make any sense.

One of the first things that I learned in this journey was that I had to be my own general contractor, so to speak. You've got this, Kathy! Go get ' em!

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thank you so much I've always been a fighter but never thought I'd have to fight with a Dr office over trying to get the right care

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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.

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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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