Lobular metastases to bones in back and ribs - hormone NEG

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Lily55
Lily55 Member Posts: 3,534
edited March 2019 in Stage IV/Metastatic Breast Cancer ONLY

I don´t have energy to go in to all the details now as its all happened as an emergency over the last month and I have had surgery due to the tumour causing wall of spine to bulge out and putting my mobility from Dorsal vertebra downwards to be under threat, the hospital literally saved me from a life of paralysis. I was in agony........ This time around I have had excellent treatment........

The only information I have re biopsy report is this "Gata 3, CKAE1/AE3 y CK7positivos" which makes no sense to me at all.........my hormone positivity has gone from progesterone 92% to 0.......and oestrogen positivity has gone from 98% to 6% so hormone treatments are not an option.........

Please does this make any sense to anyone? Any treatment options as chemo not really an option for me.......

I first had lobular cancer in 2012 so this is secondary breast cancer growing in the bone......

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    They have not given me a treatment plan yet apart from doing one to five sessions of radiotherapy to the area that was fractured

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2019

    Your title caught my eye since I also have ILC metastasized to spine (and a dozen other areas). I also had back surgery followed by radiation and managed to avoid serious cord injury.

    I’m not sure where you live but the biopsy report looks to be in Spanish. Putting the info into google, it appears to me that those are references to tumor markers. My doctor started by following the CA 27/29 but the lab recently changed to 15-3 which is another way to evaluate the same thing.

    I hope someone else will come along who can offer a better interpretation. Meanwhile, perhaps you will have a chance to question your team so you can understand the treatment options available.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2019

    Lily,

    I'm sorry to hear about your possible recurrence. As someone who has been around the boards for awhile, I recall your struggle to get reconstruction, so I'm happy to hear that you've been getting excellent treatment recently.

    Do you think your doctors are saying that you're triple negative? Have they tested for overexpression of HER2 yet? If you're HER2+ this time around, there are a number of non-chemo options available. ((Hugs)) I hated to read this.

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  • Nkb
    Nkb Member Posts: 1,436
    edited March 2019

    lily55- I don’t knowwhat your biopsy reading means. Many people lose the positivity of their Progesterone with metastatic disease. My UCSF doctor told me they still use hormonals even if you are only 1% estrogen. Hopefully you will be able to use something like Ibrance and an anti hormonal

    Let us know when you find out what all the other stuff means. I am glad that your treatment so far has gone so well.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    Thank you for your replies.....it is definite secondary in bones, same cancer type as before and how I avoided paralysis is a miracle......so I am deeply grateful. I am definitely Stage 4, they emphasized that to me.

    . I was three days away from pre op appointment for reconstruction exchange........and last year my husband died of cancer so I am alone. I need a carer and have not yet found one. I feel a huge sense of loss.

    I have managed emotionally a lot better so far but then have had doctors who listened to me......and treated me as an adult...... and I have some good friends who are helping me....and I am asking for help.......

    HER2 NEGATIVE......it's all a sudden change.....

    Does anyone know of good metastatic breast cancer centres? Would lasering tiny Mets out help?

    I really could do with some guidance and hope..... I was told five years maximum......

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2019

    Lily,

    Bestbird (on this site) has put together a guide for Metastatic Breast Cancer that you can get for free from here.

    https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_85

    A thread that may be very helpful to you is the Bone Mets thread, which you can find here.

    https://community.breastcancer.org/forum/8/topics/789492?page=728#idx_21829

    Plenty of women with bone mets have lived past five years; I pray that you are one of them. ((Hugs))

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2019

    Hello, Lily55. I believe those letters in your report refer to tests the pathologists did on your biopsy sample in order to distinguish what kind of cancer was present. For example, was it from breast cancer or some other (maybe undetected) cancer like gastric cancer. They of course wanted to verify so that you get the right treatment.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    Thank you for replies, they have confirmed it is definitely lobular cancer metastases in the bones of my back and ribs but there is no ER or PR sensitivity now.........its currently only in the bones but i am high risk of other fractures as new mets have appeared over the last month. They have done one mega high dose of brachytherapy radiotherapy, was exhausting but glad I did it.......to various bones in my back and ribs including the vertebra that actually shattered......and are now talking about targeted chemotherapy.....due to my high risk........I meet the medical oncologist in 2 weeks time to find out what the next treatment steps are........but the radiotherapy oncologist has said there is a relatively new less toxic targeted chemo for breast cancer mets in bone......and describes my status as delicate.........

    I will try and access Bestbirds link again, thank you everyone........


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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    I cannot access the guide as my kindle is registered to the UK and I live in Europe.....

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2019

    Hi Lily!

    I'm sorry to hear that you couldn't get the e-book. Bestbird also writes, "Those interested in receiving a free .pdf version may email me at bestbird@hotmail.com." She seems very generous; it's worth a shot.

    I'm glad to year that you made it through your radiation treatment; that's no fun. Keep us up to date!


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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    THank you, I have just received it in my inbox and will start reading tomorrow.........its 9pm here now so think i will be going to bed soon as very tired........

    Feeling rather overwhelmed as my husband is not here either.......he died 5 months ago.............tomorrow......but I am managing this really well, and have a lot more support mostly as I have been more open with people.......too painful to sait here much longer


    xx

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2019

    So glad to hear that you have support. Take it easy, Lily, and I'll be thinking of you!

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  • alicia_en_madrid
    alicia_en_madrid Member Posts: 149
    edited March 2019

    Hi, LiLy! My mom has lobular breast cancer that was found in her ovary 8 years ago. She still here and doing pretty well. Her metastasis was still ER+, but progesterone went from being positive to negative.

    I think you live in Spain. I live in Madrid.

    Right now I am busy with my three very little kids but if Madrid is where you live and you need help, let me know.

    Spanish is my mother tongue.

    I am very sorry about your husband.


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2019

    Thinking of you, Lily55. Hope you're getting some good ideas for your treatment plan.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Lily you may want to post on the Triple Negative stage 4 board. People there may have ideas about treatments that might work for you.



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  • HLB
    HLB Member Posts: 1,760
    edited March 2019

    Hi Lily, I remember you from a few years ago. I'm very sorry for the loss of your husband. I am 7 years into Bone Mets. I don't think the doctor knows what he is talking about, frankly. I would think there are many good treatment to choose from. I hope you are recovering well from surgery. 

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    Hi Alicia

    Sorry I missed your post....I am in Andalusia but thinking about going to the private cancer hospital in Madrid.

    I am looking for hope that I will feel better than I do now as I am really stuck at home. It's too painful to travel in the car as a passenger....

    I have had radiotherapy, and have an Appointment with the medical oncologist this week...... I so hope they can help with the pain as my nausea and sickness is only managed with dexametasona and that has side effects on me. I can't take normal anti sickness drugs as I get extra pyramidal reactions.

    How much is realistic for me to expect my pain to reduce once I start a systemic treatment? I am on 125 mg fentanyl patches plus steroids plus top up oral Fentanyl.....and feel nauseous all the time.......it's woken me up again this morning...at 4.30am

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2019

    Lilly55,

    It is very realistic to expect the pain lessen once you are on a successful treatment. Although, don't let the lack of pain mitigation convince you that the treatment isn't working. Healing lesions can produce pain as well.

    What causes you pain in the car? At one point, I had to ride in the far back of our station wagon, lying down, because sitting in a car, with all the bumps and turns was too much to handle.

    Systemic therapy, like chemo, has really helped with soft tissue and bone pain. This protocol I'm on, Gemzar/Carboplatin, has been like waving a magic wand for pain reduction.

    Have you talked to your doctor about swapping out the Fentanyl for another pain med, to see if that decreases the nausea? Forgive my ignorance - I don't know what a pyramidal reaction is.

    If you can't take the regular anti-emetics, Ativan (a benzodiazepine like Valium) is very good at stopping nausea, without producing nausea or constipation. It will sedate you, so you have to be careful when you take it. As you mentioned, dexamethasone is a good anti-emetic as well, but I understand your concerns about daily steroid use and the side effects it causes for you.

    I have also read that sniffing alcohol will also reduce nausea. I tried it, and it seems to work the majority of the time for mild nausea. One of the nurses at the chemo infusion center keeps alcohol prep pads in her pockets for that very reason.

    Somewhere along the way in cancer land, I developed lactose intolerance. Until I realized that, I was nauseous all the time due to dairy. I know that's not a probability for you, but it might be good to think about your diet and nausea, to see if anything you are eating is causing the nausea.

    Hoping you feel better soon, Jennifer

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    Lily I remember you from 2012 when we both got lobular cancer. (I think it was you...)In any case...I am so very sorry to hear of this progression. My heart goes out to you. I wishing for you great pain relief, a good treatment and many many productive happy years ahead.

    Also very sorry for the loss of your husband .

    Such an awful lot to deal with. Reaching out with love and best wishes.




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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2019

    3 FRACTURES NOW NOT ONE AND URGENT HELP ON TREATMENT PLAN NEEDED PLEASE - please bear in mind I live in a country where the system is public and I have no choice of hospital nor of Oncologist......and she said there was no reason to believe I would react badly to a taxane so not open to doing any genetic tests as no evidence they were needed. she also said she thinks I am a bit depressed and should take Venlafaxine...........as there is no point in suffering if you dont need to.......

    During the simulation scan for radiotherapy just two WEEKS after the original CT scan showing a fracture (well a shattered vertebra on D9 along with displacement of the rear spinal column wall, I was very nearly paralysed from the chest down) they found fractures on D5 and D6 (they call them dorsal but think you may call them Thoracic in USA). They did Lineal PRIMUS intense one hit radiotherapy on all 3 vertebra, a very long and exhausting session.

    Although I was told I was most likely a candidate for targeted chemo therapies, the biopsy results show ZERO targets or receptors and no hormone status apart from a 5% oestrogen receptor, which they regard as useless as I was 98´% before, HER negative, ......

    So today I had my first medical oncology appointment when I was told my ONLY treatment possibility is

    • PACLITAXEL CHEMO EVERY WEEK and that this will
    • not damage my kidney,
    • I can be monitored more closely as treatment will be weekly
    • I think she said would be in weaker doses too and they would do 3 weeks out of every 4 with the 4th week off.
    • She said I would not lose my hair which I do not understand, can anyone explain this?.

    Without this chemo treatment then shew was very blunt and said I will simply get worse. I know this to be true as I am aware I am getting worse all the time as you can see from two new fractures appearing in two weeks and I have a lot of clicking ribs with a lot of additional pain. I asked how soon treatment would work and she said VERY soon and that I would notice changes within the first two treatment sessions and until we know how I respond she cannot say how long treatment will be........I am currently unable to travel very far in a car as its too painful......every trip to hospital is via an ambulance bed due to pain levels.

    Has anyone done this treatment?

    How effective is it? Does it cause a lot of nausea and side effects? What can I expect? Has anyone with lobular mets had this done?

    She said i am highly unlikely to die from chemo and that my kidney would be fine as they will be carefully monitoring but until......she also said to try and change on to some anti inflammatory medication (which kidney doctors have not allowed me to take long term before) as much of the nausea comes from the opioids I need for pain.....but how much nausea will come from the chemo, not to mention my terrible veins etc?

    Yes it was me in 2012 Astrid......


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