Shell Shocked

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Longtail
Longtail Member Posts: 25
edited September 2017 in Just Diagnosed

My tale begins July 3, when my husband died. I had been his 24/7 caregiver for four years, plus working. He wanted to go, & finally did. Afterwards, I noticed my left arm swelling a little, like lymphedema, & I thought it was from trying to lift him all the time...i.e. pulled muscle under my armpit. Jump to this week, after many scans, etc, (ps: my mammogram was FINE - they said come back in a year!) I was told that my 1st ever diagnosis is Stage 4, Metastatic IDC, HER2+, ER+ & PR+. Seems my upper spine lit up a little on the Pet scan. This week I'm scheduled for a brain scan (they don't think it's there), bone biopsy (it's there) and the chemo port is on Oct. 4th. So in July my health was fine, and now I feel almost like a death sentence has been handed to me. They (the well-known women's cancer center) are surprised that I have no symptoms, other than my swollen arm, which isn't too bad. I'm extremely healthy, in good shape, eat well, take no meds, look great and feel great. Even now, other than tightness in my arm, I'm fine. This is such a sad shock to me; I was looking forward to starting a new chapter near my son & maybe retiring. I'm alternate between weepy & determined. The 'Team' tells me that even though this is not curable, it is treatable. I could have ten years or more, if I'm lucky. After chemo, my treatment will be Herceptin/Perjeta, which is supposed to halt the growth and a fairly new cocktail...nicknamed 'Cleopatra' by the FDA. They said to think of the 3 masses they found (one pressing on lymph node in armpit - hence swelling - as 'snowballs'....with this new treatment, it will turn into 'snowflakes'.....the cancer will be in me forever, but it is treatable, and if/when flare-ups come, they will adjust whatever meds I'm on then. Gives me hope, but the chemo stuff terrifies me, even though I know zillions of women have gone through it. I am a 'young' 70 & was so looking forward to the next 20 years! Hope I still have that. Hopefully this forum will encourage me....I'm looking for survivors of S4 & their stories. Docs said the good news is that it's hormone based positive, which is much easier to treat than negative. Silver linings?? Thank you....!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2017

    Hi Longtail!

    Welcome to the club that no one wants to join. I'm so sorry to hear about your diagnosis, especially after the death of your husband. I am also Triple Positive, and have received chemo and Herceptin + Perjeta. However, I was diagnosed at Stage IIIA.

    One thing I've learned since I've been at breastcancer.org is that breast cancer patients with mets can live many fulfilling years with mets. There are a number of threads here that will be helpful to you in the Stage IV Forum. There is a thread for people with bone mets, and a thread for Stage IV patients who receive Herceptin + Perjeta.

    See:

    https://community.breastcancer.org/forum/8/topics/789492?page=641#idx_19213

    and

    https://community.breastcancer.org/forum/8/topics/826737?page=18#idx_511

    ((Hugs)) I know your diagnosis was a big shock to you. But, on the Stage IV threads, you will meet many breast cancer patients who are thriving and not just surviving. I hope you have many great years ahead of you.

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    Thank you! I'm so scared....tons of family & friend support, but everyone is totally shocked, including the docs, as I feel great & had no symptoms at all ex. for the arm....one step at a time, I guess!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2017

    I would get a second opinion. Make sure all your treatment options are all being explored. Chemo might be doable but the risk is high. Look at the report er and pr as well as her2, get a good understanding before jumping in.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2017

    I felt great when I was diagnosed, too! I was at a good weight and was exercising daily..... It's good to hear that you have so much family and friend support; that will come in handy.

    I don't know if this helps, Longtail, but Herceptin and Perjeta have been lifesavers for Triple Positive patients like us. This is the best time ever to be a Triple Positive breast cancer patient.

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    This is such a well known cancer center, and I have a large team - went through the multi-modality clinic, all the docs seem to agree - must get a blast of chemo first, then the herceptin/perjeta....don't know all the treatment yet, it's too new to me....brain & bone scans this week, port on 4th. Liver & lungs are perfect - yay!!

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    Very encouraging, Elaine, thanks. They did tell me no surgery & no radiation, unless sometime down the line after treatments they want to do something with the underarm bit ...but happy they think the arm should improve after the mass shrinks. Update 9/29: Chemo needed after all. Came back HER2+, so it's agressive after all....not happy about it, but if it lets me live a few years, so be it!


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited September 2017

    Well, on some occasions, the mass/mets actually disappear. After five months of chemo, Herceptin, and Perjeta, all of the active cancer in my breast and compromised node disappeared. So, you never know.....

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  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    So sorry about the loss of your husband and now this diagnosis. Glad to hear of all the support you have around you and now here. Hope all the rest of the scans are clear and you can move forward and back on with your life. You have lots more to live. Hugs..

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  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2017

    Bless your heart dealing with a health situation after losing your soulmate. I'm so sorry.

    You sound like a courageous lady. You have already proven you can deal with anything.

    I'm not a Stage IV patient but I do know ladies who are. They have multiple years under their belt. There is always hope so have faith.

    Best of luck.

    Diane


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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    That's fabulous! I hope the same for me!!

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  • Cashasmom
    Cashasmom Member Posts: 8
    edited September 2017

    My diagnosis came as a complete shock to me as well! You think you are doing all the right things and taking care of yourself and then wham! It's so unfair! Who knows why or how this happens? Thinking and stressing about that is not helpful, I know, but it is so hard. I feel great! I feel healthy! The mind can go to dark places, so we must be careful. I've indulged in some good cries, then take some deep breaths and focus on one thing at a time. Today I am having my port placed. I have fixed my hair up nice and put on a cute outfit. I'm going in style! Next week I will get my hair cut and start chemo Oct 5th. Hang in there Longtail. Sending you hugs

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    So happy to see your post, Cashasmom! I'm trying hard to be positive and cheerful, but still have my weepy moments. Diagnosed 9/15 with stage 4, triple +, in bone but not liver, lungs or brain. Yay! Port goes in on 4th, chemo starts on 9th. They said they are going to bombard me since this is agressive (HER2+). Moving to be with my son & his family in early November, for the duration of the chemo treatments, and then hopefully my own place again. Got a cute beanie hat & ordered a wig but haven't gotten it yet. Doc said I'd lose the hair about 17 days after chemo #1. Let me know how you feel after the first one! It will be a busy month with all the usual moving crud - address changes, etc - I'm hoping I have the energy for it. I didn't have surgery as the cancer center said they don't do surgery anymore on Stage 4's, just treatments. If it hadn't been for the HER2+ I wouldn't need chemo, either...that was another shock. I feel great, have no symptoms at all, and my mammo was fine....go figure!!! You hang in there, too!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2017

    Oh sister,

    We are here for you. My mammos were reported as clear, five years in a row. I found the lump during a self-exam. Women are living so many years with Stage IV, and I am going to count you as one of those women who will LIVE with Stage IV, not die with it, and that something else will take you years and years from now.

    Hugs

    Claire in AZ

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  • windingshores
    windingshores Member Posts: 704
    edited September 2017

    Are they going to do Zometa for your bones at some point?

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  • Cashasmom
    Cashasmom Member Posts: 8
    edited September 2017

    Hi Longtail, it looks like you and I will be on close to the same schedule, I'll be a few days ahead of you. Lucky us! Are you starting with AC? So maddening that we start down this rabbit hole feeling perfectly fine, only to be bombarded by stuff that will make us feel yucky! But we have to keep this at bay, there is so much life left to live! The port procedure really wasn't too bad, the site is sore now that the local has worn off so keeping up with Tylenol/Ibuprofen. I'll let you know how my chemo day goes. Haha I get to be a baldy before you, so there

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  • Cashasmom
    Cashasmom Member Posts: 8
    edited September 2017

    Hi Longtail, it looks like you and I will be on close to the same schedule, I'll be a few days ahead of you. Lucky us! Are you starting with AC? So maddening that we start down this rabbit hole feeling perfectly fine, only to be bombarded by stuff that will make us feel yucky! But we have to keep this at bay, there is so much life left to live! The port procedure really wasn't too bad, the site is sore now that the local has worn off so keeping up with Tylenol/Ibuprofen. I'll let you know how my chemo day goes. Haha I get to be a baldy before you, so there

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    Good morning! Not sure what my meds will be yet. Port on Wed, meeting the next day at the chemo place to discuss it all...then chemo on the 9th. Since I'm stage IV w/bone mets (thank God brain, liver & lungs are good) and HER2+ she said they were going to bombard me....oh goodie. Hope it works! No surgery, Lynn Cancer said they rarely do surgery on stage 4's anymore....they even said they don't really grade them they way they used to, but if I had to have a reference number, it was a 4. On my new road & hoping for the best! You are younger & staged less, so I hope you have a fabulous recovery!!!! Keep me posted on how you are, and how the first chemo goes.....have to go check on the wig I ordered today; got the adorable beanie, so I'm all set!

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  • Longtail
    Longtail Member Posts: 25
    edited September 2017

    So glad your port placement went well....my son will be coming to take me for the procedure. He lives four hours north of here, and I will be moving in with him in Nov for the duration of my chemos...at he & his wife's insistence. Found a new doc up there already & am busy organizing all my (new) records to send to him at Florida Cancer Institute....my onco here said he's really good & that FLC is really a good center, so I feel better. Saying my prayers & trying to do the food thing right....with an occasional pasta slip-up for comfort....:) Take care & feel good!!! Glad Tylenol helped the soreness....xo

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