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

Everything right now likely seems very confusing and ‘technical’ to you, and none of it makes sense. The only advise I can give for now is to breathe, and try your very best to just allow everything to flow for a bit. And that advise is just about impossible to do… The intense fear of cancer being in your body is the worst part about all of this. I was diagnosed with stage II breast cancer last year, and all the medical terms about drove me crazy trying to understand while making decisions without really knowing what I was doing. I’m sure you have sought out a good doctor to help. The communication between doctor and patient is essential in decision making. ASK QUESTIONS of your medical team until you DO understand. That’s what they are there for is to give you knowledgeable advise. I’m very certain I drive my doctor crazy asking the same questions over and over again until I understood enough to make decisions for my health care. Good luck! And return to this group often, there are many very knowledgeable ‘sisters’ here who have been through this trial. I was in a similar situation as you are being told radiation was enough, then after surgery and the pathology report, I needed to make a choice similar to you, since cancerous cells were found in a sentinel lymph node, but only that one node. I went with radiation, knowing that I would be seeing my oncologist frequently after treatment for the next five years to catch any cancerous cells again in a very early stage. Neither chemo nor radiation will guarantee a cancer free life after treatment. And as we know, nothing can guarantee a life free of health challenges. Personally, as I continue to go through this journey, my best advise has been from John Lennon and the Beatles when they sang the song “Let It Be”, there will be an answer.

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Hi @kathysway, welcome to the group. You'll notice that I modified the title of the discussion you started. While all members may not have the same type of breast cancer as you do, they have all been in your shoes of getting the news that you have breast cancer: Now What?! I think the new title will bring in others to add to the great advice you've already gotten from @lisman1408

Like you, @lauradahl @krhubarb @6750 @trixie1313 @sandyjr and @elizm were diagnosed with invasive ductal carcinoma (IDC). I hope they'll join the discussion to share their experiences and tips. In the meantime, you may also be interested in these discussions:

– Invasive ductal carcinoma (IDC): Anyone else? https://connect.mayoclinic.org/discussion/invasive-duct-ca/
– Oncotype DX Test: What does it all mean? https://connect.mayoclinic.org/discussion/oncotype-test/

Kathy, while I'm sure you just want to "get it out", you have time to take a deep breath, possibly seek a second opinion, and definitely time to carefully consider your options. What type of surgery is being recommended for you?

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@kathysway @colleenyoung
Hi, Kathy, and welcome to the group. We are a diverse group of patients with a central concern: breast cancer and what it means for each of us. Although we have some similarities, we also have some complex differences… one patient's journey is not necessarily going to be another's due to a whole basket of different factors. Some patients have just the cancer lesion and nodes removed, others have a mastectomy (the entire breast removed). Some patients have chemo, others have radiation, etc.

Looking back, I will give you my timeline. Remember this note, however — we're each reflecting our own individual experience which may not be yours.

Following my core biopsy, I asked my GP for recommendations on a surgeon, and proceeded to book her. By the time I saw her, she had the final results of the biopsy pathology (HER2+++), my family history of cancer, and had convened a tumor board to discuss it. (The tumor board is a group of various cancer specialists who give an initial recommendation as a group.) A month later, following a number of pre-operative tests to assess my fitness for surgery, I had a lumpectomy.

In my case, the surgery showed that the cancer had not gone into my lymph nodes, that the invasive cancer lesion (IDC) was a bit larger than seen on the ultrasound and mammograms and it was accompanied by a second non-invasive (DISC) lesion, and that the surgical margins around what was removed contained no residual cancer. The lesions were graded for three traits, and, "pathologic staging" was given.

I then saw an oncologist who recommended a treatment plan, based on the tumor staging, on the grade of the IDC, the surgical margins, my age, my physical fitness, etc. By the time you get to the oncologist, all the cancer testing has been completed, and the oncologist may have a different treatment plan recommendation than the tumor board did because he/she may have more information than it did at that point in time. I then was sent for a bone density test and echocardiogram to assess my fitness for various chemos.

I got a second opinion from an oncologist who was not in the same network; and, I learned that my area university hospital has a program called "The Second Opinion" — an organization that provides free multidisciplinary second opinions on test results, diagnosis, existing treatment, and suggestions for additional procedures or treatment alternatives. I also switched to another oncologist who was a better communicator than the first one. (The oncologists are basically following certain standards (which may change over time), but some oncologists are terrible communicators about it all; and, as you will be seeing this person frequently and for years, you want to be comfortable and confident in this relationship.)

Keep a binder of all your test results, your notes and questions, articles which have captured your attention, etc.

We are blessed to live in an age where information is abundant, and where women are empowered (we no longer have to settle for providers who can't discuss such important issues). Yes, it's a lot to put your mind around, and not everyone wants to understand it all. In the end, you decide: how much information you want to pursue, what you are willing to undergo, what you are willing to risk, etc.

Best wishes to you on this journey. Hugs!

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I know what you are going through. I was just diagnosed in Feb with invasive ductal carcinoma. Mine is also hormone positive, I am HER2 neeg. During the first few weeks you will hear a lot that may or may not be scary. The oncotype test will tell what is the likelihood of reoccurrence and this may determine if you need chemo. When it comes to your dr, how comfortable are you with them. Have you met others that have had this dr and what do they think of them. Try and take some time for yourself and just breathe right now. Wishing you the best.

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I really like my Dr she is very easy to talk and explains everything so I can understand it just the waiting is getting to me I'm the type of person that wants to get things done and over with I'm not so much scared or worried just want to know the plan and get to over thank you so much I wish you the very best also.

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Yes

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@lisman1408

Everything right now likely seems very confusing and ‘technical’ to you, and none of it makes sense. The only advise I can give for now is to breathe, and try your very best to just allow everything to flow for a bit. And that advise is just about impossible to do… The intense fear of cancer being in your body is the worst part about all of this. I was diagnosed with stage II breast cancer last year, and all the medical terms about drove me crazy trying to understand while making decisions without really knowing what I was doing. I’m sure you have sought out a good doctor to help. The communication between doctor and patient is essential in decision making. ASK QUESTIONS of your medical team until you DO understand. That’s what they are there for is to give you knowledgeable advise. I’m very certain I drive my doctor crazy asking the same questions over and over again until I understood enough to make decisions for my health care. Good luck! And return to this group often, there are many very knowledgeable ‘sisters’ here who have been through this trial. I was in a similar situation as you are being told radiation was enough, then after surgery and the pathology report, I needed to make a choice similar to you, since cancerous cells were found in a sentinel lymph node, but only that one node. I went with radiation, knowing that I would be seeing my oncologist frequently after treatment for the next five years to catch any cancerous cells again in a very early stage. Neither chemo nor radiation will guarantee a cancer free life after treatment. And as we know, nothing can guarantee a life free of health challenges. Personally, as I continue to go through this journey, my best advise has been from John Lennon and the Beatles when they sang the song “Let It Be”, there will be an answer.

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I'm just upset right now was given a appt for oncology Dr last week was told we would get info on everything and get a treatment plan to go and only find out that they don't have all the test results as of yet now it a week later and still nothing and they tell me to relax well yeah as if that's going to happen. I would like it if they had just said we'll call you for a appt when we have everything we need to set everything up I could deal with that not hurry up and be left to the wind, so to vent just really upset. thank you for your comment above.

Liked by lisman1408

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@kathysway

I'm just upset right now was given a appt for oncology Dr last week was told we would get info on everything and get a treatment plan to go and only find out that they don't have all the test results as of yet now it a week later and still nothing and they tell me to relax well yeah as if that's going to happen. I would like it if they had just said we'll call you for a appt when we have everything we need to set everything up I could deal with that not hurry up and be left to the wind, so to vent just really upset. thank you for your comment above.

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@kathysway What test results are you talking about?

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

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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 It could take possibly up to 2 weeks for a study like that. I never had the onco score – I had requested it, but oncologist advised since I would be undergoing chemo, I wouldn't need it. My second tumor pathology took about 2 weeks as it required special staining and several pathologists reading it and then questioning it. It was quite a trying period awaiting results, but what I've learned since having my two cancer diagnoses is to try to have patience. Use your energy instead to be kind to yourself, take naps, go outside and enjoy nature. There's a book I was given by Gina Mulligan, entitled "Dear Friend." It's been just a year since I was diagnosed with my first tumor and I have still not finished it – the book is letters from people who have had cancer or friends of people. When I am down, it gives me hope. Hang in there.

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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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