Spoonie Age 41 Just Diagnosed w/ IDC

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Spoonie77
Spoonie77 Member Posts: 925
edited November 2018 in Just Diagnosed

Hi All -

I've been lurking for a few weeks, so let me introduce myself a bit.

Been a Lyme Disease/Chronic Pain/Chronic Fatigue/Chronic Illness Spoonie Warrior since 1993. So I'm not new to the world of the medicine, been in and out of clinics, studies, protocols, and what-have-you's since I was a teenager.

And unfortunately I'm not new to the world of cancer in general.

Lost my brother to Non-Hodgkins Lymphoma years ago. My Dad fought Prostate Cancer, my other brother Thyroid Cancer, my sister Cervical AND Thyroid Cancer, and my Mom battled Breast Cancer too. So I know a "bit" about supporting and being there from the other side, but wow, I'm new to being the patient facing Cancer.

Went in for my very first Mammo on July 10th. Called back for additional images and US.


Assessment: BI-RAD 5.

Had a Core Biopsy on the 18th.

Diagnosed with Invasive Ductal Carcinoma on 7/20/18.

Pathology report is mostly in...can I tell you I hate waiting???! Le Sigh.

4.25 cm Mass in Left Breast (UOQ 2:00)

Nottingham II of III Score: 6 of 9

T2 G2 (as far as I have been told)

ER+ PR + HER2 (pending)

Breast MRI (pending - should have results tomorrow after...fingers crossed no other masses found)

BRCA (appt upcoming)


It's been a whirlwind. Whoooosa.

Met my Oncology Surgeon today. Basic plan so far is looking to be a Lumpectomy, followed by at least 6 weeks Rad, 1 year Chemo, and 5-10 years (10 strongly suggested) of Endocrine Therapy (Likely Tamox).

This could all change tomorrow or during the Lump depending on Nodes and so forth, as far as I understand. Then a Mastectomy is more than likely and if BRCA + maybe Double.

There is talk of a Mammo Print (no clue what that is) and Oncotype (spelling?) if HER2 comes back neg .

Not sure why there would be more testing if it's negative , can someone illuminate?

I was in a haze at that point during my appt. I'm sure you all can relate.

Anyway, that's the gist of what's going on the moment. Am scheduled with follow-ups to do the "meet/greet Q&A" dance with Plastic Surgery, Genetic Counseling, Radiology/Oncology, an Oncology Social Worker (as if all this wasn't enough I've also just moved LAST WEEK to a different state and now have to transfer over state Medicaid in the midst of this tornado), followed by a Pre-Op appt with my new Primary --- all in the next 14 days. Reasoning was given in order to facilitate a plan of action if nothing changes in regards to current test results and to formulate a plan B to minimize waiting if changes are afoot.

Consider me a candidate for whiplash!

Is it normal to have everything moving so speedily?

With my Chronic Conditions/Immune Abnormalities/Chronic Late Stage Lyme Disease I'm not used to this speed of treatment. It's kind of alarming and yet comforting that someone cares and is helping me traverse the maze, one I'm used to finding my way through all on my own, in the dark, stubbing my toes the whole way.

Also, does anyone else have experience coming into the Breast Cancer world with a number of other diagnosises and chronic conditions?

I'm super concerned about how Radiation/Surgery/Possible Implants/Chemo/Hormones will affect my already fragile health. Have been disabled due to multi-systemic pain/fatigue/symptoms (yet able to live on own) since 2007.

Sorry this is so long for my first post, but hoping you all can welcome me in a bit and shed some light on this new path. I sure know I could use some support and hugs. This is a new beast all together than I am used to fighting....

Thanks in advance! And thanks for having me. ((((((BC Community))))))




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  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2018

    I too have other things going on and while I also have a ton of relatives who have had cancer that I helped support, I was the one who was first diagnosed 30 years ago with Hodgkin’s lymphoma at age 13. Did 9 months of chemo, 2 months of rads. Thyroid cancer and a melanoma followed about 17 years later and now here we are at BC. Here’s what I can tell you... wait for the genetic testing to come back before making your decision on surgery/rads. If it’s not in your nodes mx may very well mean no rads needed. And if your genetic testing comes back positive for one of the BC genes that would put mastectomy firmly on the table as an option. BC is an urgent matter but not an emergency matter. Most of us wait 8-10 weeks before we have surgery. Don’t let them rush you into anything. The surgeon's job is to remove the cancer but it’s also his job to fill his surgical calendar as full as possible. And if you choose mx there are multiple choices for recon (implants or natural tissue) or you can choose to go flat and fabulous. All of those options may steer you toward a different surgeon too.

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  • Icietla
    Icietla Member Posts: 1,265
    edited July 2018

    Welcome to BCO. I am very sorry about your breast cancer diagnosis, your other health problems, and those of your family members.

    >>Is it normal to have everything moving so speedily?<<

    In our Country, yes.

    After your treatment Surgery, all this recent stress will most likely catch up to you to make you more tired for a time.

    Radiation Treatment can be very tiring, even to the (otherwise) healthiest persons. I understand the tiredness may continue and may continue increasing even for months after the end of Radiation Treatment. I expect it will shortly have you very challenged to achieve anything other than taking rest.

    Chemotherapy will most likely have you immunocompromised through the time of your treatment and for some months beyond.

    Some may still be experiencing (even increasing) after-effects of Chemotherapy and Radiation Treatment when they begin Endocrine Therapy.

    If your tiredness gets to be too much, you can ask your Doctor(s) to order regular Home Health Care visits for you.


    >>There is talk of a Mammo Print (no clue what that is) and Oncotype (spelling?) if HER2 comes back neg . Not sure why there would be more testing if it's negative , can someone illuminate?<<

    Results from that type testing (genomic testing of tumor tissue) can be a factor to help guide the decision as to whether Chemotherapy should be given. OncotypeDx indicates the likely recurrence risk reduction benefit from having Chemotherapy in addition to (an assumed course of) Endocrine Therapy. OncotypeDx is only for cancers that are both ER+ and HER2-. Its recurrence risk scores are in ranges classified as low, Intermediate, and high. MammaPrint gives its recurrence risk ratings only as low or high. Results from either genomic assay test are to be considered as one factor weighing in the decision as to whether adjuvant Chemotherapy is needed.

    >>Also, does anyone else have experience coming into the Breast Cancer world with a number of other diagnosises and chronic conditions?<<

    I am a Spoonie too. I have been very tired since age eleven. On this linked page is a post generally describing my condition.

    https://community.breastcancer.org/forum/69/topics/763459?page=56

    Your cancer may be adding to your tiredness. When one is already always so tired, sometimes even more tired, sometimes so much more tired, one is unlikely to discern the cancer fatigue clue that can be a remarkable difference to (otherwise) healthy others.

    I had been getting increasingly tired over the years. By the time my cancer was diagnosed, I was sleeping I think around twenty to twenty-two hours a day, more or less. After my excisional biopsy got much or most of the bulk of my tumor out, I was appreciably less tired. Except for I think a couple months of increased tiredness after I started Endocrine Therapy, I have since been sleeping I think around sixteen hours a day, more or less, and otherwise, mostly resting.


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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2018

    ugh on being diagnosed from your first mammogram. I feel you!

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Thanks all for the warm welcome and posts. <3

    Am heading off for my Genetic Counseling appt this morning. Will be having blood drawn to check on the BRCA genes/etc.

    Had good news yesterday, in that my Breast MRI from Mon, came back clear off other concerns in my breasts! :)

    At the moment, only looking at the one free-loading, golf ball sized tumor.

    That was a relief to hear, as during the US & Core Biopsy there had been talk of "other spots" of concern.

    Fingers crossed it stays this way!

    Will post more when I am home and have a few mins, just wanted to touch base and say thanks for the info. It helped calm me down about the speed this is all going at, to know I'm not alone. :)


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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Waiting for my BRCA results is killing me. So much hangs on this test. They thought I might hear something by this afternoon, but sadly no news. Fingers crossed Monday I'll get a call that I'm negative for the genes.

    In other news, my HER2 turned out to be negative, so yay for that! Less meds in my future!

    Now if I could just have an actual plan set out, instead of juggling multiple options for Plan A, B, & C depending on If, then, or this. Hurry up and wait. Ugggh.

    I did meet with my RO two days ago and found out I'll be getting rads on my Node I, II, and III level areas (up into my clavicle) for 30 treatments. I can't imagine receiving rads on my whole L breast, armpit, plus my shoulder & neck area. I already feel like a marshmallow just thinking of it. :(

    It makes me really double think my choice to do rads.....is this safe or safer than other alternatives? Why do others choose not to have rx rads and instead choose to go the mast route w/o rads, if they're not genetic positive?

    Hope my question makes sense....I'm just trying to figure out where I need to more research before committing to rads vs no rads.

    Anyway, keeping my head above water for the moment. Feel pretty numb still. Definitely in "crisis mode". Wonder when the reality of the situation will really hit me, that this is happening to ME? Maybe when they roll me into surgery?

    Le Sigh.

    Thanks for listening everyone. It's appreciated. Hugs and healing all.

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    Just wanted to write that I am also waiting for BRCA results for awhile now. I had the lumpectomy prior to finding it out. We discussed the inevitability of double mastectomy if the result is positive. My surgeon said she thinks it would be negative. I hold off on believing that since I have a lot of cancer on my fathers side. I think my grandmother had ovarian cancer. She eventually died from stomach cancer. I had bone cancer in my teens.

    I am glad that you got good news with the MRI. I hope you get more good news

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Icietla --

    Thanks for sharing about your Neuropathy. That's something I've battled for years since I was diagnosed with Chronic Late Stage Neurological Lyme Disease in 2005. And I am soooo familiar with chronic fatigue too. That's a very familiar "friend" since the early 2000s as well, haven't been able to work since 2007 when the Lyme symptoms made it impossible to do much other than survive.

    It sure makes living life difficult when we don't even have the energy to get out of bed to begin with. For me, no matter what I've tried (meds, supplements, PT, etc) nothing has helped with the fatigue or Neuropathy.

    It's encouraging to hear that your fatigue improved markedly after the removal and treatment of your BC. How long do you think it took for you to see a difference afterwards in the fatigue? Weeks/months?

    That's one silver-lining I'm hoping to discover in all this, that maybe my level of chronic fatigue will improve like your has. Fingers crossed!

    How have you been handling the Endo Therapy? Are you still maintaining with less fatigue than you had prior to BC?

    I sure hope so.

    Sending you positive vibes!



    Tresjoli2 --

    Wow, you were diagnosed at your baseline Mammo too! I guess there's a club we get to join right? :)

    I was quite shocked as I'm sure you were too.

    How are you doing these days?

    I hope you are doing well and not living with much repercussion from the treatments.

    I'm curious, if you are comfortable sharing, how long were you rcx Chemo?

    I guess my brain still can't wrap around the fact that I'm facing Chemo. I remember seeing what it did to my brother in the 90's before we lost him to Non-Hodgkins Lymphoma, and well that was a nightmare, and Chemo is scary to me.

    I'm sure Chemo txts have changes so much in that time frame though so I'm trying to stay positive and know that my team would only suggest what I need, if the benefits outweigh the risks, but it is hard to keep that thought in the fore front.

    Wishing you the best!



    Odat --- for the emotional support! Waiting is the worst, isn't it?

    How long have you been waiting for your results?

    Fingers crossed that hear soon that you are negative for the genes. It's such a stressful experience knowing (even though the odds are supposedly low) that if we are positive for BRCA that mast is back on the table.

    I'm sorry to hear about your family history of cancer, I know that one too well. Like you, that's why I wonder if I carry one of the genes. My mother, my Pat Aunt, and my Pat Cousin all had BC, plus my father and grandfather had Prostate Cancer. On top of that I am part German, Finnish, and in general mostly European (where did my Blue eyes and blonde hair go!! LOL) which during some research and reading on here means there are higher odds that I will come back positive for one of the addtl genes (I think CHK?) that also is responsible for BC.

    So much to contemplate.

    Anyway I am sending the lab speedy vibes that they will get your results to you sooner than later! I'm hoping I'll hear on Monday, the genetic counselor said that by Wed I should know for sure on this first part of the panel we sent in. I guess at least I know the waiting is nearly at an end....still can't help feeling like a 3 year old and wanting to know now! :)




    Hugs and healing to all! May there be relaxing sun and comforting weather for everyone this weekend. <3

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    I found out with my first mammogram too. I had it on July 3. I got a call to come back in for ultrasound and diagnostic mammogram. I really thought nothing of it since my mom and sister both have dense breasts. Completely shocked when the radiologist told me I had to get a biopsy. The way she talked to me definitely made me think from that moment it was cancer. The funny not so funny thing was that I told my abusive husband I wanted a divorce the month before. I had always put off my mammogram, not appreciating my risks. My dad and grandfather both had prostate cancer. Going forward with the divorce really made me want to get checked. Divorce is on hold but hopefully not for long! Stress is not good for us.

    HOping no gene mutation for us

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Woohooo the wait is over!! I just got the call from my Genetic Counselor and all of my genetics are back --- I'm negative for all the known BC genes! Wooooot!! I feel like I could do a happy dance right now! Such a relief! I about fell over when I heard the news. I was dreading hearing I was positive for anything and knowing that a double Mastectomy was firmly on the table in that case.

    Have to see my SO to be sure but looks like I should be having a Lumpectomy.


    I have my Pre Op appt Wed and things should go smoothly from there. Fingers crossed. Soooo relieved! I can breathe a bit for now, until surgery actually rolls around.


    Thanks everyone for the emotional support. I so appreciate it!


    Odat - I hope you get good news soon about your genetic panel! You're in my thoughts! <3


    Hugs and healing to all....

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    Happy news! Still waiting on my results. I am seeing my surgeon tomorrow maybe she will know.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2018

    Good luck tomorrow Odat! I sure hope your surgeon will have some test results for you. Fingers crossed!

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2018

    Spoonie77, within a couple of days after my excisional biopsy, which got out much of my tumor, I felt my tiredness was much diminished. Two weeks later I had mastectomy surgery which removed the rest of that tumor. My other illness had gone so long undiagnosed and untreated that some effects, including the continuous tiredness, would be permanent, understand. But after my breast surgeries I was less tired than I had been in many years. This is not to say that I am not tired -- I am always at least very tired, and much of the time I am extremely tired. My shots -- they are my elixir of life -- give me little waves of less tiredness.

    My start on Letrozole made me more tired for a couple of months so I needed even more napping, but I was still not nearly as tired as I was before my first cancer surgery. My Letrozole treatment has been easy. I had some massive shedding of my hair after a few months on it, but I had had some severe stress and four recent surgeries too. There has been re-growth of the shed hair since, so the only difference now is that much of the length is thinner.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited September 2018

    So, my Lumpectomy went well. Surgery was 8/30.

    Am healing nicely. Had a TON of pain though in my my Node Biopsy site. No issues whatsoever with the actual tumor removal site. Twas weird. Expected it to be the opposite. Oh well, what really counts is that the cancer is out and I'm healing.

    Right now, Radiation is moving forward. I have my simulation this Friday. I'll be having 6 weeks of Gated Radiation on my entire L breast, chest wall, and arm pit/node area. I'm so thankful for my RO team. They are fabulous and I'm looking forward to seeing them 5 days a week starting in October. LOL - gotta find the positives right?! :)

    I'm not sure what we are doing about Chemo yet. I'm young, pre-meno, and fall in the unlucky category of "it's up to you" in reference to the ONCO typing/TailorX study. Reading the info on it here and on other cancer sites made me double think my MO's suggestion that it would be ok to skip Chemo.

    My ONCO score was 17.

    With my young age, and spoonie health, I absolutely NEED peace of mind going forward that I've made the best choices possible. No one wants Chemo, but if I didn't do all I could NOW to fight it, and had a recurrence years from now, I would always wonder. I don't want to face that, so am asking my MO to run further testing as a second opinion of sorts: Mammoprint, S-Phase, and KI-67.

    They were reluctant to consider that and that gives me pause.....has anyone else's MO not wanted to do further testing? I don't see why they would hesitate. Wouldn't they want to confirm too?

    So, that's where I am right now. Setting up Rads and still waiting on the ok for further testing to confirm what ONCO shows.

    Any advice? Am I wrong for wanting to confirm the ONCO typing?

    Doesn't seem outlandish to want to confirm a test that is in a grey zone for me. Feeling a bit confused but still hopeful.

    Sending healing and hugs to you all.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Just wanted to update this thread of mine ---


    My MO did order a Mammoprint and KI-67 last month.

    Both confirmed the Oncotype suggestion --> my tumor & cancer cells were middle of the road in aggressiveness and it did not seem likely that Chemo would be a benefit to me in my situation.

    I was so THANKFUL for the confirmation. They gave me the peace of mind I needed to move forward and leave the no Chemo decision in the past.

    RADs is finished, just this week....time to focus on healing from the SEs. Uggh, it was & is, still rough going. Gonna take a whole lot of time to heal, but I will get there.

    Next week I'll begin Tamoxifen. The provider fight is over regarding Pristiq/Cymbalta/Effexor. I've had 2 weeks for the Cymbalta to leave my system so the Tamo can actually do it's job. Not going to endure all those symptom SEs and not get the benefits! Hoping it's not too awful, but expecting the worst. Have learned that's best for me, given all of my chronic pain/chronic fatigue from my other conditions. If I prepare for the worst I can be pleasantly surprised if the outcome is different! :)

    Good luck to all fellow warriors who are heading off into "inactive treatment" phases. I'll still be seeing a ton of my docs, nearly weekly, for the next 3 months, so I won't feel too inactive yet I don't think. Maybe once my Physical Therapy for RADs issues is finished in 3 months, that mindset will change a bit.

    Hugs and healing to all....

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