Very Scared :-(

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hopeful2020
hopeful2020 Member Posts: 41
edited October 2020 in Just Diagnosed

Hello Everyone

I tried to stay away from the internet but I am losing my strength day by day and hoping to find some support here.

My mother died of breast cancer at 47, about 25 years ago. Therefore I have been on careful monitoring with mammogram since age 35 (I'm now 46). I started MRI screening last year but due to COVID didn't go in this year. MRI, Mammogram and Ultrasound all clean till 2019, ofcourse with a disclaimer of missing things due to dense breast tissue.

By chance I felt a lump end of Aug and had it checked out. Mammogram showed a mass 1.7 cm but ultrasound came back with bi-lobes and 3 cm (although second opinion came as two masses 1.5 and 1.8 cm) and one axillary node with thickened cortex. Biopsy of mass confirmed invasive ductal carcinoma (details below) on Sept 17 and the suspicious lymph node came out as micrometastases carcinoma with largest length of 0.04cm on Oct 9. I have been trying to stay positive but when the lymph node results came I am too scared. Brca testing was negative. Tomorrow I see my breast surgeon. Earlier consult, before the lymph node results were out, we talked about lumpectomy, radiation and hormone therapy. But if nodes were positive, then we'd have to consult with oncologist for chemo. I am so scared of chemo and hair loss. With the nodes positive, I am even more scared of it spreading and I just haven't found it.

Is anyone in a similar situation as me or have been? Please let me know and any guidance that you might offer on your treatment plan and how you handled it.

Thank you.

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

    being way on the other side of this - hair is just hair. Chemo is manageable - nothing like what you see on TV. Some people work full time through chemo. It's hard drugs but most common side effects are well managed. You can get through the treatment. Plenty of people had positive nodes and no spread (& alas, vice versa. clean nodes is no guarantee). Really, you can get through this. You don't have to be brave or strong, you just have to show up.

    Things get easier once you have a treatment plan in place and actually start doing stuff. It's all the sitting around and waiting and imagining at the beginning that's awful. It gets better.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited October 2020

    what Moth said is the best advice - you don’t have to be strong or brave you just have to show up - ( I want to go get that on a Tshirt !

    I worked and exercised during chemo and radiation . Take it day by day .

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

    I had micromets in one node and no chemo. My oncotype score was 17, so it put me in the "no chemo needed" zone.

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

    hopeful2020:

    I'm sorry to hear about your mother. I think most of us are scared when we are first diagnosed but I think it is all the more frightening when you have witnessed a close loved one succumb to this disease. Please believe me when I say that there have been advances in the treatment of breast cancer in the past 25 years, not just in treating the cancer itself but also managing the side effects of treatment. If hair loss is a concern for you then you can try cold capping through companies like Dignitana, Paxman, or Penguine cold caps. Moth gave some good advice; most people do find that things do get easier once their treatment gets underway but it's ok to be scared.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited October 2020

    As already posted, don't lose hope. There's a chance you may not need chemo being hormone positive, and if you do you will certainly feel much better after you get through it.

    Once you have the pathology from surgery and the oncotype score test in hand, that will determine your course of treatment. I know you think a thousand different scenarios in the meantime, but please know there is a wealth of info here and we are here to help you. So sorry about your diagnosis and the loss of your dear mother.

    I feel fairly confident that radiation killed any stray cancer cells in my left breast as I also had a micromet (0.3mm), an onco score of 17, so no chemo for me. Just the hormone therapy.

    Best wishes to you.

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  • LB13
    LB13 Member Posts: 49
    edited October 2020

    I also had macromets in one lymph node and had no chemo either. My mammaprint score was very low. Hang in there - the not knowing is definitely the worst - and what everyone says about having a plan makes you feel better is true. Breathe deep - stay away from google and try to remain as positive as possible.

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  • hopeful2020
    hopeful2020 Member Posts: 41
    edited October 2020

    Thank you everyone for responding. I feel a lot better now. I think I can handle the chemo. I did very much like the phrase "just show up" :-) Definitely a great perspective! Any thoughts on getting a port vs IV?

    I still don't think I can handle the hair loss. My job needs me to interact with several people and I just don't think I can do it. I can't work from home for 6 months. I will have to go in atleast once or twice a week. I'm going to look into the cool cap and a wig. Any conversations that have happened in the past here that I can get an idea on how it works. My surgeon didn't favor the cool cap.

    Breast surgeon was not too concerned about the "micromet". They didn't want to give a verdict on chemo and so have asked me to follow up with the medical oncologist. I am not sure why this is the last person I see when everything rests on them. So they need to make the decision on whether I need chemo and if so does it need to be before or after surgery. My surgery is tentatively scheduled for end of the month. If MO says yes to chemo before surgery, then surgery would get cancelled. If not required - I would be happy although another opinion insisted I start with chemo. They also said they wouldn't go crazy on my nodes - sentinel for sure I guess. Possibly the oncotype. Again need to wait for the MO's opinion.

    Tamoxifen or another drug I guess would be the long term treatment.

    I asked about recurrence and they said they would be screening but they wouldn't be "looking" for anything and will treat based on symptoms. Hmm.. is that how it works for all of you as well?

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

    hopeful2020:

    There are two types of cold caps; those that are hooked up to a machine that pumps cold fluid through them and those that are filled with gel and cooled in a more conventional manner.

    Dignitana and Paxman use the first method and Penguine and Arctic use the second method.

    Dignitana provides a technician who takes care of everything but I'm not sure if Paxman does.

    With Penguin, and Arctic cold caps, you get a cooler of caps and have to switch them out every so often. I know with Penguin, people have had to, at least in the past, bring their own helper. I'm not sure about Arctic.

    Some people keep most of their hair while others still lose most of their hair so it's a toss up.

    The process is uncomfortable but not unbearable, though it was definately the most unpleasant part of my infusions. My technician was wonderful though.

    I had a port for infusions on account of my bad veins.

    Follow up screening depends on the type of surgery you have had, the stage of your cancer and MO preferences. I've had some follow up imaging due to some lumps but

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  • Kindofblue7
    Kindofblue7 Member Posts: 3
    edited October 2020

    Diagnosed with ILC on 10/09/2020 - After biopsy and excisional surgery.

    MRI will occur on 10/22/2020.

    More surgery on right breast 10/28/2020. She will look at lymph nodes also.

    If more cells are discovered, I would like to have a mastectomy with no

    reconstruction surgery. I would like to be aggressive with my treatment so

    I won't have to worry as much about metastasizing and I can see my family

    again. Especially my granddaughter who is 7 years old.

    Covid has prevented me from seeing my only family for over a year.


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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2020

    hopeful2020 and Kindofblue7, we're sorry you have to be here, but welcome!! We hope that you will benefit from the support and information shared here on the boards. Please keep us posted on how things go for you. And let us know if there's something we can do for you, we're always here!

    The Mods

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  • msphil
    msphil Member Posts: 1,536
    edited October 2020

    Hey sweetie we know how you feel things will ease up once a plan in place. Your mind is all over the place right now but it will get better.My hair came out it wasnt easy but you will get passed that my hair came back a little better even. Im doing good now and a long time Survivor Praise God. msphil idc stage2 0/3 nodes 3 mo chemo before and after chemo got married yes was planning our 2nd marriages at diagnosis. Then rads for 7wks then 5yrs on Tamoxifen. This is the place for we know what you re feeling

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  • hopeful2020
    hopeful2020 Member Posts: 41
    edited October 2020

    Thanks everyone for your awesome support and kind words. I feel much better and waiting for this too to pass.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited October 2020

    I had a port for 4 rounds of A/C and 12 rounds of taxol def. made process easier, but the port can be pinchy and show with shirts so it's helpful and also annoying.

    The breast surgeons job is to get the cancer out and the Medical Oncologist job to recommend chemo. Same with radiation. The Radiologist will recommend radiation or not.

    As far as work and hair goes. If you don't have hair wigs are super itchy so I highly highly recommend a silk cap for under any wig. I worked at a front desk of a professional office so for work I had a wig. The first day of wig wearing at work was so awkward and out of my comfort zone. Lots of my BC experiences meant that I had to go out of my comfort zone. You can do this!

    Seems like follow up is really varied depending on the doctor and each person. Like I have had close follow up b/c my MO considers me high risk. My Breast Surgeon just says live life and if I notice anything unusual contact her. So Breast Surgeon wants to see me every six months now, same with my Radiologist. --My MO wants to see me quarterly. I'm in the suburbs -my docs are all at Little Comp. of Mary in Evergreen Park. :-)


    Kindof blue- I haven't seen my Dad in two years :-( I had treatments most of last year and then he had a blood clot on his brain and then covid happened. It sucks! Big hugs to you

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