Just diagnosed I am scared it all over my body

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited October 2020

    So with Covid can we go in grocery stores? My husband travels for a living I’m guessing we will have to doa combination of quarantine and testing

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited October 2020

    If you have chemo, at that point your immunity will be compromised while you're on it and you'll need to be extra cautious. Until then, just be reasonably cautious so you don't catch anything that would disrupt a testing/surgery/treatment schedule.

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  • edj3
    edj3 Member Posts: 2,076
    edited October 2020

    Ilovewhales3 your question about grocery store trips depends on where you live. You might also check to see if your stores have times dedicated for at risk people to shop (based on age and medical conditions). Also ask your nurse navigator for any resources to help you if your husband must be gone a lot.

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited October 2020

    I am having a really hard time I am so sad and scared I feel so sick and my breast hurts nauseated stomach issues and I can’t decide if it’s nerves or cancer I’m pretty sure I’m not coping well and I’ve always thought I was pretty tough How do I find the strength?

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited October 2020
    You have to be strong because you have no choice. It is a major life shift, but it can be done. Everyone deals with it in their own way. Ask for anti anxiety meds, exercise, get outside, watch Netflix. Whatever helps. Also, try not to think too far ahead. Take it one step at a time. Remember that the majority of people survive this type of cancer.
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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited October 2020

    Thank you I know you’re right I’ll reset and try tomorrow

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2020

    Cut yourself a bit of slack - its been what, a week or two since diagnosis? Its a major shock and a major life shift. You are comparing "being strong" with ladies on here who have been through the cancer mill already (maybe more than once) or are still in the midst. I can guarantee you we all started out in the same place you are with disbelief, lack of sleep, feeling nauseous, and huge crying jags. That doesn't mean that we weren't strong, it just was a way to cope with news this large. Strength is coming to terms and showing up for care, being involved in your care and giving yourself the best chance possible by taking care of yourself through exercise and eating right. Its scary because you don't know what to expect with surgery and chemo and even being in a hospital itself is foreign. The rest of us have now seen the other side of the curtain and its familiar to us, so far less fear and uncertainty. You will get to that point too, its unreasonable to expect that of yourself now.

    One way to manage it is to not worry about steps way down the line, just worry about today. Then tomorrow, worry about tomorrow. When treatment starts, focus on each component separately. Don't catastrophize and expect the worst of everything, or read horror stories on Facebook or somewhere and expect that is everyone's experience.

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  • DebAL
    DebAL Member Posts: 877
    edited October 2020

    ilovewhales, I'm very sorry you are here. Take things day by day. Sondra's post is spot on.

    In the beginning I found myself researching, reading continuously. (I think thats the norm for most of us) So much that family would arrive, visit, and leave all while I had my head in my phone researching. Only then did I realize wow Deb , get a grip. I then made a conscious effort to re-engage in the moment. Someone said budget time for worry. Its not easy but with time worked for me. Allow yourself time each day to research, ask questions post, worry. Then stop. Go for a walk, get some fresh air. Breathe in deep. When the thoughts come back try to push them away. SLEEP is so important. Start there. Our response to stress the next day is much better when we are rested. Melatonin amd magnesium work for me. Don't be afraid to talk to your Dr about medication if you feel you need it. Take care. You have our support here.

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited October 2020

    Honestly I jumped on this forum looking for information and have definitely found it but what been a pleasant surprise is the support I truly feel calmer by support that only breast cancer patients and survivors could give I’m saying THANK YOU in a big way I woke up today starving and haven’t cried yet (no promises but trying) It’s my birthday to no budget today for grief I’ll allow extra time to


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  • moth
    moth Member Posts: 4,800
    edited October 2020

    Happy Birthday Ilovewhales3! You've got this. This is a day for celebrating and enjoying life. Do all the fun things, eat cake all day. Find a tiara - or make yourself a paper crown & be the queen today!

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    Happy Birthday Ilovewhales3! I love moth's suggestions for your day!!!! I hope you will do some of these... Feel your feelings and then do the best you can to focus on whatever enjoyable activity your are engaging in at the moment...

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited November 2020

    Happy birthday Ilove whales! Have a good birthday weekend and know that this WILL get easier.

    Hugs from NYC

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    Thank you so much I have had two much better day

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    I’m wondering about Nottingham Ham scores. I have two Do I add them? I have looked and can’t find anything about this

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2020

    Your Nottingham Score is a 6. A score of 6 is Nottingham Grade 2.

    I can't find a graphic of Nottingham grading, but it's similar to Scarf-Bloom-Richarsdon; there are just minor variations within the elements but the scoring and totalling up is the same.

    image

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    okay that makes sense from what I’ve read I just missed the words grade and score thank you so much I’m also wondering if they know how many lymph nodes I know one is replaced with cancer does that mean only one is involved I’m sorry to ask so many

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2020

    No, they do not at this point know the extent of lymph node involvement. It appears that the biopsy was on one node only and it's impossible to know from imaging whether other nodes are affected. A node might look fine on imaging but still might contain some cancer cells and a node might look suspicious on imaging and yet have no cancer.





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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    That is what I sorta knew I am having a PET scan tomorrow I’m so nervous that they are going to find more.Does pretty much everyone get a PET scan

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    I’m guessing my score can change at this point of testing?

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    I had my PET scan today They had to get permission to use contrast because my kidney function was down. I have video visit with onocologist Thursday for results Getting the complete picture is one scary process Trying to cope and it is actually getting a bit better but still anxious sad scared. It’s such a before and after life changing event that at times it unbelievable Then when it becomes unbelievable I mourn the loss of life before “it

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    My HER2 test came back +2 so it is inconclusive they are running a different test getting a full picture is a proc

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  • prepmom
    prepmom Member Posts: 31
    edited November 2020

    Just want you to know that I'm thinking of you ilovewhales. Hang in there. Not knowing is so very difficult, but it sounds like you'll have a plan soon. This forum is a great source of information and most importantly strength. So many of us are rooting for you. Trust me, you have a strength that you don't even realize. You can do this. There are tough days ahead, but many more days of joy. (((hugs)))

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    Thank you so much I am learning so much I look at my first post and realize how little I understood and know more knowledge is coming I already have a sense of wanting to be there for someone in the future I cannot say enough how I appreciate this form and all the wonderful lad


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  • Reader425
    Reader425 Member Posts: 653
    edited November 2020

    Ilovewhales I echo what others have said. As you gain information and form a plan with your docs it does get better. I also had to have my HER2 status checked via FSH like you. Keep us posted about how tomorrow goes. I've found the ladies on this site to be very supportive.

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    Thank you I meet with onocologist tomorrow hopefully tests will be in I also have found support information and actually strength from this forum I see tons of ladies who have gone through it and I think yes I can to

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    My fish test came back inconclusive and PET scan also inconclusive in several spots They are discussing my case at a board meeting to figure out order of treatment Again with knowledge that’s scary but she feels it’s aggressive and doesn’t know how it will respond to chemo I had very long hair and cut it today I’m looking at that like I’m a warrior preparing for battle and now look ferocious to my en

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    I keep getting words cut off I know I’ve typed them Any idea why? I’m assuming user error but not sure what I’m

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  • WC3
    WC3 Member Posts: 1,540
    edited November 2020

    Ilovewhales3:

    Try switching to the plain text editor. Sometimes that helps.

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  • Ilovewhales3
    Ilovewhales3 Member Posts: 40
    edited November 2020

    I am struggling with I think anger but a different type of anger than I’m used to Testing then waiting for answers my breast is really getting achy and I get high anxiety that it’s getting huge I have absolutely no choice but to walk through this and it’s not a short journey and just everything I guess I’m needing answers and strength My family is being great but really having a hard time thinking or talking about it

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2020

    Ilovewhales,

    Sometimes it's okay to not be strong. And it's certainly okay to be angry - you have every right to be angry. My approach has always been to accept however I feel and to let myself feel bad or sad... I find that by allowing myself those lows, it's easier then to find the strength when I need it.

    And remember. You are not alone. You have all of us here. We understand what you are going through and we are right there with you. Vent here when you need to and lean on us for support. And most important, there is so much that is out of your control but the one thing you can do is make sure you take care of yourself. Do for yourself whatever you need.



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