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IDC Stage 1, Grade ... ER+PR+HER2-

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  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited February 2020
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    Hello Grainne, Thanks for your in put! Yes I am in that ugly grey area waiting for my Lumpectomy which I have done on the 10th of the month. (February)

    and after the post diagnosis stage. But as it stands the surgeon said he said I would get 3 weeks of radiation (something new only 3 weeks) and than he wants me to take tamoxifen. I do not know at this time if I really want to take the tamoxifen from what I have read on it. I will cross that bridge when I get to it.

  • grainne
    grainne Member Posts: 119
    edited February 2020
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    I had three weeks of radiation as well. I know everyone's experience is different but I found it very doable. As for tamoxifen, after my experience with AIs I was dreading it but gave it a try. Initially i had some leg cramps at night and maybe 5 or 6 hot flushes a day, lasting maybe 60 seconds or so. I now have really no side effects and will happily stay on for 10 years if they let me, although they have indicated they might not be keen on this because the prognosis for tubular is so good. I feel safer taking it.

    Something that helped me immensely was exercise...just walking at first and then a bit of running. About 5 days a week i take the dog and cover 3 or 4 miles, walking if it is cold or wet and I'm wearing a jacket or walking/running if it's dry. My oncologist told me it would help with side effects. I love it (and so does the dog!)

    It's impossible not to be scared and anxious waiting for surgery and radiation. I was in pieces and stayed very anxious for, I'm sorry to say, the entire first year after diagnosis. I felt incredibly needy and pathetic to an extent that I felt I couldn't burden my family with. There is a huge amount of support and information on this website and I was incredibly glad of it. Keep in touch.

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited February 2020
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    Thanks grainne, I know what you mean with the support and information on this website and I to like you in the past have been feeling a

    bit needy and pathetic. I do not want to burden my family with it. I feel very anxious a lot. I will make sure I get daily exercise when I

    start the tamoxifen. I do exercise now but will increase it! I have a loveable female black Lab that has been my rock. She is always by my side and

    that helps. She will enjoy the added walks I am sure of it.

  • grainne
    grainne Member Posts: 119
    edited February 2020
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    I hope all goes well for you tomorrow. I will be thinking of you x

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited March 2020
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    Hello grainne,

    My lumpectomy went well, I am a bit sore under arm as they took 2 maybe 3 lymph nodes out. I hope they turn out to be non cancer, I will find out results on the 19th. I am and have been freaked out to say the least! It seems as I move forward things just get worse and I try to wrap my head around it all to start to try to not give up. As you can tell I am a big baby! I have been taking short walks around my property with dog and today I think I over did it as I am laying down to rest and am darn tired! I am so active other wise so its hard to feel so wiped out after a short walk. Its a sunny beautiful winter day here so laying here in bed resting is not so bad as long as I look out the window.

    A friend gave me a 10mg of THC medical marijuana candy to help me sleep since I quite the pain killers I found I was waking up every 3 or 4 hours so last night I decided why not and I took it, low and behold it worked! very suttle I might add, it helped with my mild pain and helped me sleep 61/2 hours straight. I think when I am in town for my doctor appt on the 19th I will swing by the Pot shop and buy some more. Now I understand the useage of medical marijuana and will not fear it ever again! I live in a state where marijuana is legal (thank goodness) WA state. I live on a small island off the coast of wa called Lopez Island of the San Juan islands, I have to take a ferry boat into town so that adds a good half day on to any appt.to and fro...

    Not much else going on for me just the waiting game till the 19th.....thanks for your concern, you and this web site has really helped me want to move forward with positive thoughts...


  • grainne
    grainne Member Posts: 119
    edited February 2020
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    I'm glad it went well; it's good to get that over. Like you, i felt that the nipping pain of the sentinal node removal was worse than any minor pain from the lumpectomy. Don't take too much out of yourself for a while- remember you have had a GA and that can be enough to knock the stuffing out of you aside from anything else.

    I wish I could say some wise words that would help you wrap your head round everything and make some kind of sense of what has happened. The thing is, it doesn't make sense. As far as I can tell it's just a random piece of shit luck. I was just knocked sideways when I was given the diagnosis after a routine mammogram. I had no idea of the questions I needed to ask and I had no idea of what would be good news and what would be bad. I didn't get a diagnosis of tubular until after the lumpectomy. I didn't know what to expect. I went back to work after a few days and, as I've written elsewhere, my phone lay on my desk like a hand grenade when I was waiting for the call with the results. The oncologist was practically cheering when he told me it was tubular.

    It is far easier to recover physically than mentally. Everything shifts after a diagnosis....just a bit, if you get off lightly and it turns out to be just a bump on the road, which it probably will be for both you and I. Nevertheless, for me at least, it was impossible to simply shake it off and move on.I made a major change and, with some difficulty, retired early from a very stressful job which I had long since ceased to enjoy. It was the best thing I ever did. I walk a lot and run a bit and do a bit of voluntary work. My husband farms and I help a bit with that, especially during lambing (which is due to start shortly!). I am happy and busy and enjoying life and, thank God, I am healthy and well. I still get sick with anxiety a couple of weeks before my annual mammogram and i still fret about pains and aches and other "symptoms" some of which are so ludicrous that I would be embarrassed to share them and I think that will probably always be the case. But life is good and yours will be too.

    Your island sounds lovely and I am deeply envious of your access to pot. I live is farming country in the Glens of Antrim in the very north of Ireland. The thought of having a pot shop beside the local minimart fills me with delight.

    Let us know how things are going and don't be afraid of coming across as pathetic. Trust me, every single one of on on this site has felt like that. Take care.

  • Heal112
    Heal112 Member Posts: 1
    edited February 2020
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    Hello all!

    I am 49 was recently diagnosed with IDC, DCIS & LCIS. I had a lumpectomy of 4mm & 5mm invasive tumors & 4cm non invasive and 2 sentinel nodes removed- no tumors there. I am triple positive with a high grade her2- 3+ & KI67 of 80-%. Had surgery on Jan 10. All margins were clear as were lymph nodes. Nurse navigator said I was a candidate for radiation, Herceptin & tamoxifen.

    Saw oncologist on Jan 28. He said along with Herceptin that I needed taxol for 12 weeks. This was another shock to me and I felt like I was watching a movie on someone else’s life, but I had to go through this for her. He said he was the bearer of more bad news. I was angry and confused because I was assured I would not need chemo. I just finished round 3 of 12 today. I have to be on Herceptin for the remainder of the year once every 3 weeks & then get on tamoxifen after.

    I’m going through it in my movie- as I call it. (the only way out is through) And I feel alone even though I have support around me. Everyone asks what they can do. (don’t ask just do) because I won’t ask. And if this was on someone else it’s a automatic for me. And I’m so independent and have always been, raised 3 kids in my own. I don’t like to ask for anything and I am doing okay at just doing things myself it feels like more work in asking. If I can’t do it I just rest & do nothing. I’m not sure if anyone here feels this way? I’m tired of the cliche words fight- battle be strong as opposed to not!!!

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited March 2020
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    My roller coaster BC ride is on again, had my first meeting with oncologist and he said he wanted to have the oncotype dx test ran for me, I said

    ok. Now I get another 10 days of waiting to see if I have to do Chemo, I sure hope not as Chemo scares the heck out of me plus I would have

    to find someone to drive me. I have a high score of ER+ 90% thats way he want the test done.I thought I was finally doing really ok with my BC now this. I know I sound like a big baby and I am! I am also so burned out from all of this now this news has again brought me down into that dark depressed place I never knew I had until my DX with BC. I am 631/2 young.

    I just needed to vent thanks all.

    Got oncotype score back( 16 )there for no chemo for me. All the waiting around is so stressful and depressing.


  • grainne
    grainne Member Posts: 119
    edited February 2020
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    Hi. Listen, we have all been that "big baby". I was so pathetic I was ashamed of myself. So what??? This is a bewildering time and I totally get that this feels like another knock. Waiting for results is just dreadful. I am a bit surprised that you are getting an oncotype for tubular. I have read that they are less useful with rarer types of bc like tubular. Hold on to the fact that your stats are as good as they can be. Refusing chemo is always an option if you want to...you are in charge of your treatment.

    Keep posting...we understand what this period is like. x

  • Sweettalker52
    Sweettalker52 Member Posts: 58
    edited February 2020
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    Walkingmydestiny - for me, BC is as much an emotional challenge as physical. I told myself that I would be able to deal with the facts whether they indicated that I should do chemo or not. Looking back, I was a wreck waiting for my Her2 results, then waiting for the first appointment with the oncologist, then waiting for the Oncotype DX genome test results. So many nurses and front desk ladies to thank for being so sweet and kind to me when I was beside myself. Now that I am in the midst of chemo, they continue to hold me up. Best Wishes to you and all of us in the pink ribbon army!

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited February 2020
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    IHi grainne,

    I am feeling much better than last night I had just gotten home after a long day and appt with oncologist. I am only 75% tubular and a mix of dcis, and another no evasive. the oncologist felt since my tumor was really 1.5 now with all the other crap the surgeon found in there and pathology report he wanted to run the Oncotype DX test. Darn I never get a break. The nurses and doctors so far have been so sweet and nice to me and that helps.

    I read somewhere that if you have a high ER+ andPR+ that are high the test most always comes out low and mine are both 90% so I am hoping this

    is just another stress road of waiting for good results. I dread the thought of Chemo as much as I dread the thought of taking which ever hormone therapy.

    My surgery site from my lumpectomy is healed up and doing well, I still feel some of the nerve pain under my arm but surgeon gave me some Gabapentin 300mg to take 2 times a day and that sure helps.

    I am really trying to fight this darn depression I go into with any news I do not want to here about my BC. I will go for a long walk today to try to clear my head of negative thoughts and recharge my poor old body with some positivity.


  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited February 2020
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    Hello Heal112,

    I am like you very independent and do not ask for help its hard to ask for help and I had to once already while going thru my BC. I am still in the early stage of getting things taken care of, I have had my lumpectomy and have just seen my oncologist. Still waiting to see if I will also need chemo.

    However on the point of asking for help I don't. People ask if they can help but I am old school, you do not ask you do. When I know someone is alone or needs help I just go over and do.

    However I needed a driver for my lumpectomy and I had to ask for help to be driven home and I asked an old boss of mine that always says if she can do anything just ask, so I asked ( and believe me when I say it was hard to ask her for help) but she right away said OK and she took time off from work, she is a single mother and hard worker but she did it and we had a bit of fun going thru it together. She turned out to be perfect for me, who knew. So my advice to you is just do what I did and its hard but do it. Ask for help when you really need it, its not so bad after all. A lesson learned for me. She and I

    are now becoming friends and one can never have enough friends.

    I am a big independent baby

  • Sweettalker52
    Sweettalker52 Member Posts: 58
    edited March 2020
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    Walkingmydestiny - I hear you and feel you. No matter how many family and friends say "let me know if you need anything" I'm highly unlikely to reach out and ask. Good for you that you found a driver and a friend! Best Wishes!