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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@cctoo

Trixi, thank you somuch. .I will mention scans to onco.....sentinel more had microscopic amount of cancer cells...rest were clear.....three. I am almost three years out now and cancer antigen test 27/29 is now 10..started at 16....once says anything under 38 is normal....so feel well...have lung and mild heart issues so sorry more about them..am almost 83 now, but no one guesses!!! ...I waited three years before having mammogram for lump as was busy moving. And was on Premarin for over 20 years and taking it when found lump. Info says it is early stage!!!!?????

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@cctoo You still have a lot of life left in you so just keep going! My first tumor was Stage 2 invasive and the second is Stage 3 invasive (upped staging due to neuroendocrine aspect). The year before this, I was hospitalized for lung disease (bronchiectasis with atelectasis) as my lungs basically glued shut. Got over that just to find this...annoying to say the least as I have never been a smoker. My motto is being aware and moving one foot in front of the other...we just have to keep plowing away. Keep positive, you can do it!

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@trixie1313

@cctoo You still have a lot of life left in you so just keep going! My first tumor was Stage 2 invasive and the second is Stage 3 invasive (upped staging due to neuroendocrine aspect). The year before this, I was hospitalized for lung disease (bronchiectasis with atelectasis) as my lungs basically glued shut. Got over that just to find this...annoying to say the least as I have never been a smoker. My motto is being aware and moving one foot in front of the other...we just have to keep plowing away. Keep positive, you can do it!

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You are amazing, Trixie!

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@trixie1313

@cctoo You still have a lot of life left in you so just keep going! My first tumor was Stage 2 invasive and the second is Stage 3 invasive (upped staging due to neuroendocrine aspect). The year before this, I was hospitalized for lung disease (bronchiectasis with atelectasis) as my lungs basically glued shut. Got over that just to find this...annoying to say the least as I have never been a smoker. My motto is being aware and moving one foot in front of the other...we just have to keep plowing away. Keep positive, you can do it!

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Thank you! .mine was stage 2 also.....May not be getting as good care as you ...I also have alextasis, but drs. Think it is nothing...have trouble with breathing sometime.

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@sparklegram

You are amazing, Trixie!

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@sparklegram I think we all are - we've been given new challenges and just have to figure out how to handle them. Every morning when I wake up, I thank my Lord for giving me another day.

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@cctoo

Thank you! .mine was stage 2 also.....May not be getting as good care as you ...I also have alextasis, but drs. Think it is nothing...have trouble with breathing sometime.

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@cctoo It's my Stage 3 that's uncertain, unfortunately. as it's the type of cancer (NET) that can't get rid of and can show up anywhere so (bone, pancreas, brain, liver, etc) that's why the PET scans every 6 months. CCTOO, have the doctors mentioned to you "The Vest" system by HillRom for your lungs? Mine was covered by my insurance. It's basically a vest that looks like a life jacket and has hoses attached to a machine that causes vibrations/thumping to the chest wall to help prevent mucus from sticking and cause air movement. I had to stop it following my second surgery and radiation (burns) but am starting back on it. Apparently, I also had trouble with radiation pneumonitis which caused a lot of coughing and brown sputum production, but that is cleared now. You might want to Google that and ask your pulmonary doctor.

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I too have ivdca & don’t understand what is going on. 4 red devil chemo + 16 half dose chemo & 19 radiation treatments. Out 6 months. Next 6 mo f/up is Dec. only blood work has been done.
Should more testing be done. Stage 4.
First lumpectomy then dissection—13 lymph nodes
-3 tumors. Clean margin. I am 72 & all alone in this great big world. Friends live out-of-town so it’s just me alone to take care of me.

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I am certainly not a doctor, and it sounds as if you all know more about the current treatments than I do. But 15 years ago, I went through, high dose chemo, a few surgeries and radiation. I always feel very grateful when I read someone does not need chemo. To me that was the hardest and has had the most long lasting effects on my life. But I look for ways to enjoy my life, and I am grateful every day. I had two friends I joined up with every week for dinner, because we were under 40, and didn’t really fit in to the support group locally. Both of those beautiful women have passed away, i hope I can always live grateful for what they were denied. One had multiple myeloma and the other had breast cancer.

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@auntieoakley

I am certainly not a doctor, and it sounds as if you all know more about the current treatments than I do. But 15 years ago, I went through, high dose chemo, a few surgeries and radiation. I always feel very grateful when I read someone does not need chemo. To me that was the hardest and has had the most long lasting effects on my life. But I look for ways to enjoy my life, and I am grateful every day. I had two friends I joined up with every week for dinner, because we were under 40, and didn’t really fit in to the support group locally. Both of those beautiful women have passed away, i hope I can always live grateful for what they were denied. One had multiple myeloma and the other had breast cancer.

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@auntieoakley What I've found by going to my local cancer support group is that even in breast cancer treatment, it all depends on pathology, ER, PR, and Her2neu results as to how anyone is treated and how they will do. In our group, one lady had had chemo and was going to have a good outcome, but was hit by a driver and killed. So we just don't know what our future holds, we just have to keep our eyes open, do our research, and remain positive and be grateful for the time we do have.

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@auntieoakley

I am certainly not a doctor, and it sounds as if you all know more about the current treatments than I do. But 15 years ago, I went through, high dose chemo, a few surgeries and radiation. I always feel very grateful when I read someone does not need chemo. To me that was the hardest and has had the most long lasting effects on my life. But I look for ways to enjoy my life, and I am grateful every day. I had two friends I joined up with every week for dinner, because we were under 40, and didn’t really fit in to the support group locally. Both of those beautiful women have passed away, i hope I can always live grateful for what they were denied. One had multiple myeloma and the other had breast cancer.

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@auntieoakley, ❤️❤️❤️

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@cctoo

With HER2+, you need chemo.....if oncotype test comes back low, maybe that will change. You need surgery first, then chemo if needed, then radiation then hormone therapy.....these are only standard answers. Every cancer is different Mine was IDC estrogen and progesterone same as yours, but my Her2 was negative so no chemo. Logotype was 9, low...I only did lumpectomy...easy surgery home same day, minimal discomfort. I could not tolerate hormone therapy. So nothing else. So far, almost 3 yrs. No recurrence.

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Jumping on board on the "every cancer is different". I was also diagnosed this past April. IDC Grade 1, Stage 4 with mets to my bones, skin and lungs. E+/P and HER-2 neg. At first they planned chemo/lumpectomy/chemo. After mets discovered that all changed. Better order in which to do things, I think, when it has metastisized. To kathy.....not sure where you're at now on treatment but don't let the word "chemo" scare you. I received a "port" for IV Infusion then they switched me to "oral chemo"/Ibnrance. I've not had 1 side effect since starting early in June. Here for you!

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