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ColleenS80
ColleenS80 Member Posts: 271
edited February 2018 in Just Diagnosed

I need some good news. Every time I go to the dr it seems worse.

Was initially diagnosed with stage 1A IDC, tumor less than 2cm. Hormone+ but also HER2+.

Bc of HER2 was prepared to start 12 weeks of taxol and herceptin. BUT, MRI came back and they are all but positive it's in my lymph nodes.

Plan changed-8 biweekly treatments of adriamycin and cytoxan (sp?) first. Doing another lymph biopsy Monday and working on getting a pet scan.

I'm terrified if it's in my lymph nodes it could be other places. Dr is concerned and said tumor may be higher than grade one and just the section they biopsied showed as grade one.

I need some people to tell me this is gonna be ok. I have a five year old and an almost ten year old. I can't fathom them growing up without me. Please share some good news with me.

Oh yeah she also changed me to stage 2

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited February 2018

    Cancer is scary. You are in one of the scariest phases - just diagnosed. No one knows the full story. Your switch to stage 2 is due to the lymph node involvement.

    I had cancer in my lymph nodes. I believe that chemo took care of anything that slipped past the knife.

    If you will have surgery (mastectomy?), ask about having a nipple delay and sentinel node dissection surgery first. It's a short surgery, go home same day, but gets a jump on the lymph node involvement understanding. I knew before my mastectomy a lot more about my post surgery game plan - chemo, radiation, etc.

    You will get through this crappy phase. The treatment phases will be full of ups and downs. Don't think about your kids growing up without you - fight to make sure you are there. The mental side of treatment is important.

    Take the whole family out for ice cream tonight.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited February 2018

    You will get through it... but this is the hard part.... you are still gathering information.. and it does feel like it gets worse--but pretty soon you will have all of your information and you can start enacting your plan..... There are plenty of people on these boards that have had lymph node involvement and are living well after cancer treatments. No reason that cannot be you...

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  • ksusan
    ksusan Member Posts: 4,505
    edited February 2018

    I agree with the posters above. This is the most agonizing part. Join support threads for others doing chemo or surgery in the same month--you'll support each other and share information. You may well make some friends, too. It'd nice to have people from all over the world who really get what you're talking about.

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  • Snickersmom
    Snickersmom Member Posts: 926
    edited February 2018

    Colleen - take a deep breath! We have all been exactly where you are standing and it's not easy. Remember that you don't know anything for sure yet. So you really can't second guess what's going on. No matter what they find, you will deal with it. The waiting is the worst because our minds go haywire. We start imagining all the worst scenarios and it's so hard to focus on anything. Don't hesitate to ask your doctor for something too take the edge off if you need it. That is the only way I was able to keep my sanity!!

    We are all here for you.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    thanks ladies for your time to respond. I’m wondering how likely it is to have metastasized if it’s already in my lymph nodes. But I can’t find any solid answers. I did read (I know, I shouldn’t, I can’t help it sometimes) that only 6% of initially diagnosed bc turns out to be stage four. But my doctor scares me bc she keeps saying she’s so concerned bc I’m so young, young people have aggressive cancer, cancer is sneaky, maybe it’s not grade one, etc. I’m thankful she’s being so proactive and thankful she wants things like a pet scan, but it’s still freaking me out. I’m thankful for tests but so far, EVERY test has given me bad news. Praying the pet scan is the one where they say, good news!! I am trying to keep a positive attitude as I know that’s important, and I know treatment is constantly improving, and I do plan above all to fight for my kids. Waiting just flat out sucks

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited February 2018

    ColleenS80 - the summer that I was diagnosed I created a ring tone for my phone using "hit me with your best shot" and assigned it to my doctors because every call was more bad news. Malignant, more tumors, malignant, in your lymph nodes, chemo. But it did stop and stabilize. Try not to focus on the unknown. The waiting is hard. Really hard. And you are right - all the women before us have paved the way and today's treatments are really good and targeted to your specific situation.


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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited February 2018

    I was first diagnosed a year and a half ago, and in that time I have been thrown a lot of curve balls. I felt like as soon as I adjusted to my new situation, something else would happen and devastate me all over again. It took a long time, but eventually I learned to take things one day at a time, and to slow down as much as possible. For example: right now I am ok, and I'm starting to feel better from my most recent chemo, and I'm going for a walk in the woods today.

    Things can change very quickly with this disease. This week I found out my disease progressed again, but we don't know how much yet. It is undoubtedly hard to adjust to bad news, but you will, and you will do your best to handle the situation, whatever it is. That's what I tell myself: I'm doing all I can to get the care I need and to fight this - and after that, there's nothing left to do but live life each day. Best wishes to you.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2018

    I had a positive node and they did extra testing and found it had not spread. I was worried just like you, and (so far) it turned out ok.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    thanks for your support and encouragement ladies. It seems every time I settle into what I think is my new normal, something else busts into the scene. So ready to be done with finding out something new every week.

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  • Ally24
    Ally24 Member Posts: 2
    edited February 2018

    Colleen S80 - I just want you to know that I am thinking about you and praying for your peace of mind.  You are at a tough part of your cancer journey, waiting for all the test results that will provide a more complete diagnosis and the optimal treatment plan for you.  I was originally to have a lumpectomy, but ended up having the recommended mastectomy because in situ cancer was found in the other side of my breast from the original tumor.  More complete information about my cancer was found because of additional testing.  Try to re-frame how you are looking at your PET Scan.  Look at this test and all the others as positives - the results will provide the most complete information so that your doctors can formulate the absolute best treatment plan for you.

    I will be thinking of you tomorrow when you have your PET Scan and sending you prayers for peace of mind.

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  • Debsmisto
    Debsmisto Member Posts: 171
    edited February 2018

    Colleen S80, I am watching your journey, strinks that you are so young and going through this. I too have more testing this week and fear my path will change again before I even get started. I know your diagnosis and treatment plan so far is very close to mine so I will keep in touch, can't wait until we can both look back at this and know we got through it!

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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited February 2018

    Hello Colleen

    Ten years ago my friend was diagnosed as stage three, triple positive, nodes. Doing well, living life. I am a six-year, grade 3, HER2+ survivor.

    Grateful thanks to Dr Slamon and the team who developed Herceptin.

    Best wishes

    Alice


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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited February 2018

    Hello Colleen

    Ten years ago my friend was diagnosed as stage three, triple positive, nodes. Doing well, living life. I am a six-year, grade 3, HER2+ survivor.

    Grateful thanks to Dr Slamon and the team who developed Herceptin.

    Best wishes

    Alice


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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    ladies, I am so thankful for your support and help to reframe my thoughts. Some days I’m ok, and some days I need help. So thankful for our community here.

    I had my second lymph node biopsy today and it was much easier than the first. I also liked the dr better-he said he got several good samples. Looking forward to the results and getting my pet/ct done so I can have as much info as possible.

    I hope you’re all doing well today. Thanks again for your help. <

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2018

    colleen - often this initial phase of diagnostic testing and treatment planning is a case of one step forward and two steps back. I had this experience as well, with news of being triple positive, then finding cancer in my sentinel node biopsy in the lab days after the mastectomy surgery. I needed another surgery five weeks later that revealed an additional, much large, positive node. The good news is that despite all of that I am still here almost 8 years later, and I was treated prior to the use of Perjeta for early stagers. Hang in there - it does get easier once you start treatment, you will feel more proactive rather than reactive. Glad your biopsy today was a better experience and I hope you can get the answers you need to feel that the treatment plan is the right one.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    Thank you SpecialK!!

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  • gigibee
    gigibee Member Posts: 192
    edited February 2018

    prayers to you, it is so hard to not have all the details yet, you will get there I promise, this whole process is a waiting game unfortunately.

    I have never been patient, this diagnosis required that I learn how to be. Hope you have answers and a treatment plan soon. Once you have a plan you will feel better.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    Thank you gigibee!

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  • msphil
    msphil Member Posts: 1,536
    edited February 2018

    hello sweetie I was diagnosed while making wedding plans for our second marriages when I found the lump in shower idc stage2 0/3nodes first thought to get lumpectomy decided Lmast 3mo chemo before n after got married then 7wks rads. Then 5yrs on Tamoxifen. Well sweetie Praise God I am now this yr a 24yr Survivor. With Hope Faith Family and above all Positivie thoughts that I would beat this that this cancer Must leave my body. So Believe. God Bless Us All.

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  • wallan
    wallan Member Posts: 1,275
    edited February 2018

    Hi Colleen:

    I had a 7 year old when I was diagnosed with stage 3a BC with positive lymph nodes and 7 CM aggressive tumor. My oncologist kept telling me AC-T chemo would likely not work. I had mastectomy, lymph nodes out, chemo, radiation, hormone therapy, hysterectomy and oophorectomy. My oncologist would tell me I am so young and cancer is more aggressive in younger patients.

    Well, that was 14 years ago and I am NED. No evidence of disease. My son is now 21 years old and doing well.

    So, have hope. The odds are with you. Just remember that.

    Hugs to you

    wallan

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    Thank you so much ladies!! These stories are just what I need. <3

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited February 2018

    Colleen, I just want to give you some encouragement. My Auntie was diagnosed with BC at age 24. This was back in 1912, the Stone Age. All they could do back then was lop everything off and cross their fingers. No hormone receptors, no oncotype , no anti-hormonals, chemo, or rads. Although she opted not to marry, Auntie lived a full and independant life, and died in her bed in her mid-90s of dementia. She never had cancer again.

    Best of luck to you.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited February 2018

    Colleen:

    I'm fairly new to this, too, but can chime in to agree with SpecialK that this journey does get easier once you have everything in place and start treatment.

    My mom was diagnosed with TN (triple negative) 10 years ago. Lumpectomy, radiation, chemo and doing fine. A blip on her radar (a year long blip! as it was for me, too) but life has gone on and gotten, perhaps better.

    Hugs. Know you're not alone and we're thinking of you.

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited February 2018

    Thank you ladies. The encouragement here gets me through many emotional rough patches. <3

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