Please help - dark & terrified by more bad news

SSInUK
SSInUK Member Posts: 245
edited May 2016 in Stage III Breast Cancer

dear stage 111 sisters,

After some trepidation about the potential for Diep to promote recurrence - I went ahead 2 weeks ago. I just had horrible news. Two internal mammary nodes were taken from between my ribs during the surgery - both had active cancer. This is 15months out from diagnosis, with non stop treatment including 8 rounds of neo adjuvant chemo, mastectomy, 2 x axillary clearance surgeries, radiotherapy, a year of Herceptin and 9 months of tamoxifen and zoladex. Am in despair. Nothing seems to touch my cancer systemically. I am single mum to a 6 year old and am terrified this means I have to prepare for the worst. They have ordered a bone scan and CT scan in the next 2 days to check again for spread - results Monday when I see my Onc, so 4 more days of terror. Has anyone had this and come through? It feels impossible to find hope any more.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2016

    SSinUK, please ask your doctor for a prescription for ativan or xanax, just to help get you through the next few days. I'm not one for throwing medicine at every twinge or anxious moment, but there is no need for you to slide into the darkness of despair with no relief.

    You don't know what you don't know. For right now, just...breathe. Gentle hugs.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    SSinUK,

    We know it's tough right now to not jump to conclusions and think the worst, but we encourage you to take sbelizabeth's advice and try to stay calm until you know more. Breathe, reach out to your doctors, and continue to reach out for support here. We're all here for you and we'll help you through, no matter what!

    Sending big hugs -- we're thinking of you!! Please keep us posted.

    --The Mods

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2016

    As well, add Magnesium supplements to your daily routine. Seriously. I have just lost my job, got a new one, was told lump benign, then told lumpectomy showed cancer, now stage IV, husband's CT showed a nodule in his lung which needs follow-up and then he lost his job and all that in 2 months!

    I've been on Wellbutrin and Zoloft for over 25 years due to a chemical imbalance in my brain. I was able to handle a certain amount of stress, but I started Magnesium supplements last October due to stress at work (thus the lost job) and it has TRULY helped me through these past couple of months. People that know me cannot believe what I am going through! I am able to calmly answer the stupid questions that people ask and have cried only in frustration at stupid things and not depression. I read that almost 90% of people have too low Magnesium levels and it's a crisis that isn't being properly recognized. I wonder if there was something in our food that was taken away. Like, you guys know iodine is in salt. I can't have added salt so I have low iodine in my system and I need that, too.

    SS please post here as you get the news so we can be there for you. You are not alone, sweetie.

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  • ann273
    ann273 Member Posts: 209
    edited March 2016

    SSinUK, your story sounds a little bit like mine. I went through chemo, surgery, radiation and tamoxifen and just 10 months after being on Tamoxifen, my internal mammary/mediastinal nodes lit up and they found cancer in them. I changed treatment to Aromasin and within 3 months I went into complete remission. I had next to nil response to chemo and clearly tamoxifen did'nt work. I was told that a pretty significant percentage of tumors are tamoxifen resistant. I was exactly where you are now, and the only advice I can give you is to breathe and be gentle on yourself. It is very possible that your tumor being hormone positive was resistant to chemo. And it might have also fallen under the bracket of tamoxifen resistant ones. Please give AI's a chance before you lose hope. I wish you the very best. Hold on to every positive thought and stay strong.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2016

    ann has a very good point! I was ER+ and they didn't even give me chemo the first time as it wouldn't have been effective on my slow growing cancer. Now that I've recurred (8 years later) I only have to do Arimidex (it's like Aromasin) and rads instead of a more aggressive chemo first. There's a very good chance that's all I'll need to become NED. Anything missed by rads will be caught by the Arimidex.


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  • hopefour
    hopefour Member Posts: 459
    edited March 2016

    SSinUK….As you have heard above there are other treatments that you may better respond to…there is HOPE!! Get a second option, look into trails, the knowledge of other options will calm your worst fears!

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  • Calcon
    Calcon Member Posts: 21
    edited March 2016

    SSInUK,

    I'm so sorry this has happened to you. I also had a recurrence in my internal mammary nodes after surgery, chemo and radiotherapy. Details are in my profile, but so far I've had a lot of success with my treatment. I am currently NED.

    If you're still Her2+, this may mean that you go back on herceptin. I would also inquire about having perjeta added to any further treatment, along with an AI and the zoladex. Additional radiotherapy to your chest wall is another possibility, specifically targeting the remaining mammary nodes.

    If you find out you have spread following your CT and bone scans, there are still many available options to knock this on the head. TDM1 comes to mind as a very effective therapy for advanced her2+ cancer. However, I sincerely hope that this won't be the case. Hang in there, I know the wait is hard. (((hugs)))

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2016

    Hey, SSinUK, how are you doing? I hope your day had some sunshine. We're all here for you.

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  • 7of9
    7of9 Member Posts: 833
    edited March 2016

    Hang in there! I KNOW some of us don't process the Tamoxifen right at all. I NEVER missed a dose and I mean NEVER yet I had 10 nodes in axilla recurrence after 3.5 years on tamoxifen. In January I had an ooph, axillary dissection and am on arimidex now. 2 Oncs and RO and 2 surgeons agree the AI will put a stop to anything further (that and radiation). I am doing short round of chemo to top it off because I love my kid more than I love my hair. I have a six year old too! He's my everything. Your child and you will enjoy many, many happy years. This is just a shitty setback.

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited March 2016

    Just wanted to say that I'm thinking of you. I think you got some wise advice and experiences above. My addition, as someone new to a stage 4 diagnosis, is that your panic and despair is totally normal. I too am a single mom to a 6 year old son and my initial days were spent in a downward spiral. Then I did my research and followed some people here and see that my life is not over today. While my expiration meter is likely shorter than I ever thought it might be, no one is guaranteedtomorrow and I'm learning to enjoy today and still make plans for the future. I also started Effexor (common antidepressant for people on Tamoxafin) and that has helped to stem some of the day to day anxiety. I was diagnosed with mets to the bones during my initial BC diagnosis in Dec and just a few months later I have a better handle on things more of the time. I'm still scared but I'm trying to focus that into doing everything I can to become one of the 10+ year MBC patients. Sending hug

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  • cb123
    cb123 Member Posts: 320
    edited March 2016

    Heart

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  • SSInUK
    SSInUK Member Posts: 245
    edited March 2016

    Thank you all for the encouragement and your own stories. And for understanding in a way no one else around me can. I have read and held onto your comments over and over during six hours of waiting at the hospital for various scans today. Can't say much more right now as am still clinging to the sides of the roller coaster but will update after my appt with Onc on Monday. .But I'm very touched that you have offered support while facing the same or tougher yourselves. Odd how many of us with 6 year olds.

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  • SSInUK
    SSInUK Member Posts: 245
    edited May 2016

    Getting results of my first PET scan today, ordered after the finding my of IM node recurrence. I have that horrible feeling in my stomach that only this community understands. Anyone who's been diagnosed knows what the day you get bad news is like, and can predict all too vividly what another such day will feel like. Thinking of all of you who walk this path too or have walked it ahead of me. I don't deserve the worst news - but nor do I deserve to be lucky when others are not. None of us deserve this. Thinking of you all, your courage and your fears, with love. X

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2016

    SSinUK, we are all in your pocket today. Sending love and gentle hugs!

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  • wrmbrownie
    wrmbrownie Member Posts: 114
    edited May 2016

    Keeping you in my prayers today as well. Sending lots of positive thoughts your way as well.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    I'm not a stage III but read your post and can clearly sense your pain and wanted to send you support as you wait for your results.

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  • SSInUK
    SSInUK Member Posts: 245
    edited May 2016

    Good news to share - clear PET!!!!!!! Yaaaay! And, my doctors are looking at treating my IM node with a technique advised by a U.S. Doc who offered a second opinion. They are being supportive and open, which is great. Hooray!!! Thanks for your kind wishes and thoughts.

    Only fly in the ointment is that two hours after v positive consult and huge relief re the scan I got weird and worrying news from my GP about my hormone levels - will post separately to see if anyone understands! But right now - woohoo for a clear scan!! xxx

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Such a relief! Thanks for sharing the news. It's encouraging to see that your doctors are being so supportive and open, too. Let's hope the hormonal issues are just a meaningless blip!

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  • ash123
    ash123 Member Posts: 99
    edited May 2016

    Thank you for sharing the good news. Congrats


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